Lena Dunham & the fetishization of #hypermobility CW: CSA, abuse, medical trauma

CW: CSA, abuse, medical trauma

In a recent profile in The Cut, Lena Dunham characterized her mixed connective tissue order as making her “flexible” and “the reason she is good at sex.” (She has also mentioned Ehlers Danlos Syndrome previously, though not in The Cut profile. People can have both.)

There are so many problems here it is hard to begin.

First, hypermobility and flexibility are not the same thing, and conflating them harms people with CTD diagnoses and those in diagnostic limbo. It might seem like splitting hairs, but in reality, it can delay diagnosis for years or decades. Hypermobility means joints move easily beyond normal range of motion, often leading to partial dislocations called subluxations, or full dislocations, when the joints must be reduced back into place. Not all people with CTDs experience dislocations, but many do.

Flexibility is in the muscles, not the joints.

As Murray Meetze writes on Uniquely Striped:

As hypermobility goes up, flexibility can often go down. As is the case for me, muscles can tighten while attempting to stabilize hypermobile joints. Many with EDS, including myself, have extremely tight hamstrings, even in childhood, as the hamstrings try to protect the hypermobile spine and joints. Can EDS patients be extremely flexible? Absolutely. But, flexibility is not what doctors should be assessing when EDS is up for diagnostic consideration.

An example of hypermobility:

Karrie’s right arm, extended to her side, with her elbow bent the wrong direction; she has a falcon tattoo visible on her inner bicep

Notice that doesn’t look like “flexibility.” In fact, I am stiff!

In my case, my muscles stiffened up so much over the years that I didn’t realize my subluxations and dislocations even were hypermobility. I thought you had to twist into a pretzel like performers in Cirque de Solei to get a diagnosis. In fact, during my first visit at NIH for a Chiari-Syringomyelia study (a known comorbidity to EDS), I was asked, point-blank, “Are you hypermobile?”

I did not yet fully understand what it meant. I started to tell them about some of my joints (with documented dislocations going back to birth all through childhood & still today), but I feared they would “make me show them how bendy I was” and since I “wasn’t flexible,” they would laugh at me.  It added another two years to my diagnostic wait!

It turns out I score 6 on Beighton (the test used to score hypermobility) now, but a 9 if you had tested me years ago. Some of that change is aging; some is stiffening from syringomyelia and muscle tightness to hold my joints together.

Some folks with CTD are super flexible; some are tight. It is different from hypermobility and not part of the criteria. And yet, many doctors think I am flexible and are surprised how stiff I am. It makes them question my diagnosis, even though an expert geneticist at a dedicated connective tissue clinic gave it to me.

And by the way, connective tissue disorders mean a lot more than hypermobility. For me, it has caused craniocervical instability which will eventually require surgery fusing my cervical spine; an aortic aneurysm and congenital heart abnormalities, including an atrial septal defect; severe pain; loss of function of many joints after so many dislocations; Chiari-Syringomyelia; my deafness that requires hearing aids (hypermobility affects joints in the ears, too!); mast cell activation disorder; unrelenting fatigue; migraines & other headaches, facial pain, TMJ, urinary tract issues; severe digestion problems; eye problems; a lifetime of painful dental issues + a high, arched palate … and the list goes on.

Connective tissue affects every system in the body, so boiling it down to “I’m flexible” erases the real experience of a CTD.

So that is one thing.

The fetishization is far worse. Many of us with hypermobility have dealt with leering & inappropriate comments from medical professionals, strangers on social media, and even intimate partners–as well as abuse that is both because of our hypermobility and covered up by it.

Don’t forget that Dr. Larry Nassar abused U.S. Women’s Gymnastics team members primarily by using Ehlers Danlos Syndrome as an excuse: “One gymnast, Melody Posthuma Van der Veen, claims that he told her she might have EDS because he was able to ‘put his whole hand’ inside of her, the Huffington Post reported in a tweet.”

Lena Dunham seems unaware of the harm she perpetuates with her “makes me good at sex” comment. Perhaps it is her privilege in having access to the best doctors, the best care, and even a huge platform. Most of us do not live like that. Perhaps she really believes it makes her good at sex. I don’t know. For me, it causes pain with intimacy: I can dislocate & sublux in my sleep, let alone during sex. I am not alone.

When I was a child, my doctors knew I was being abused. My father was under active investigation, which is documented in my medical records, meaning: doctors definitely knew. They diagnosed me with PTSD and were highly suspicious of sexual abuse. My parents would shift from refusing to believe my diagnoses–calling them “psychosomatic”–to using them to cover up injuries.

Meanwhile, I caught on at a young age to medical appointments being forensic investigations in disguise. If I talked about the abuse,  I had no shot at epilepsy care. To neurologists, if you have abuse trauma, your seizures must be psychosomatic. Never mind that epileptic & disabled children face much higher rates of abuse. It can be both.

I knew if I talked too much about my pain, I also could be denied my epilepsy meds, as the doctors had long since decided I couldn’t have epilepsy and dislocating joints and pain, etc. (Now we know they are all, in fact, connected.)

If I didn’t talk about the pain, I wouldn’t get care for it, but I might have a shot at keeping my epilepsy meds. But then: no care for the pain!

Sometimes, even I wasn’t sure which injuries & pain were abuse and which were my disabilities.

Which is why Lena’s comments are so dangerous. Some medical professionals prey on this confusion to build careers as forensic experts. One doctor, Michael Holick, works feverishly to diagnose children with EDS to get parents off the hook for abuse charges.

The problem? Dr. Holick never (or rarely) examines the children in person; hypermobility is common in children so diagnosis of EDS usually isn’t made until later; and his theory about bone fractures does not fit well with EDS. While it is absolutely true that childhood EDS injuries could be mistaken for abuse, Dr. Holick seeks & finds EDS in almost every case, with no examination. He also seems to forget, again, that disabled children face higher rates of abuse. It can be both–and often is.

Many disabilities are fetishized and have been throughout history. There is even a word for an able-bodied person who fetishizes disabled bodies: a “devotee.” When I read Lena’s comments, I wondered: Had she ever even cracked open a disability studies text, or read disabled voices who are talking about these issues? She barges in with her huge platform, becoming “the face” of these illnesses, without (it seems) taking time to respect disabled activists, artists, and writers who have been doing the work for disability justice.

For BIPOC people with CTDs, the fetishization and conflation with flexibility can inflict even longer diagnostic delays due to medical racism, as well as greater danger of abuse & assault.

Lena Dunham might have been joking, and there is certainly nothing wrong with using humor to cope with illness, but some jokes are harmful and have real & lasting consequences. I hope she will use her platform more responsibility in the future, but I don’t have much hope.

The Bottle City of God

originally published in The Cincinnati Review, 11.1 (2014), winner of the Schiff Award for Prose (2013)


My first summer in Zion, the Mormons deliver a latter-day miracle.

A grasshopper plague is encroaching on a town somewhere out there in the vast Utah emptiness, on the other side of the Great Salt Lake: two thousand grasshopper eggs to the square foot, little exoskeletons bursting into being from thin air, like popcorn kernels on a hot burner.

Local news Channel 4 bears witness: Every ten years, the grasshoppers come. Like clock work.

As an outsider, a Gentile, I have made this reporter my hierophant. The Mormons have their Prophet, Seer, and Revelator, and I have a newsman. I never watched local news before moving here.

The plague is supposed to happen.

Backyards are popcorn machines, pop, pop, pop.

Insecticide has failed us.

The seagulls — the same birds that saved Mormon pioneers from the grasshopper plague of 1848 — have forsaken us. But not all of us. One lone believer prayed for a miracle, and seagulls swooped in to devour the pestilence. “It was my faith,” she says. “The seagulls came because of my LDS faith.”

LIVE FROM GRANTSVILLE, UTAH: God has not forsaken us in these latter days. We are still his people, the peculiar people.

But what if the miracle is the other way around? What if the miracle is the grasshoppers?

“I want hard times,” Brigham Young proclaimed, “so that every person that does not wish to stay, for the sake of his religion, will leave.”

The plague is supposed to happen.

___

 

Zion is not a city. It is a terrestrial docking station for the heavenly Zion when it descends at End of Times. I used to imagine it hovering like the mother ship in Close Encounters of the Third Kind, a glittering, saucer-shaped metropolis in the clouds, skyscrapers sprouting out the top, twinkling lights arranged around a center iris. When Zion appeared, the golden Angel Moroni statue atop the Salt Lake Temple would come to life, blow his trumpet, and herald the apocalypse. The temple spires would light like a runway control tower, signaling to God: This is the place.

I committed the classic Gentile mistake: ascribing too much power to God and not enough to humanity. Zion does not wait passively like a lightning rod. It is not a candle in the window for Heavenly Father. It is a writ of extraordinary relief, a direct appeal to the highest authority: Appear in our jurisdiction. Heavenly Zion “can come only to a place that is completely ready for it,” Mormon scholar Hugh Nibley writes in Approaching Zion. “When Zion descends to earth, it must be met by a Zion that is already here.” The world does not end because we are bad; it ends because we are good.

Latter-day in the Church of Jesus-Christ of Latter-day Saints means last days. Mormons must concentrate at all times on the end, as Zion does. It is why they stockpile macaroni and cheese, Cheerios, powdered butter and milk, soup, water, toothpaste, candy, shampoo, deodorant, gasoline, generators, flashlights, batteries, and bullets. Their minds and hearts must be microcosms of the City of God.

Like attracts like.

One Mormon becomes an object of fascination on CNN when he shows off his underground bunker blasted into a mountain slope, stocked with canned food, firearms, and gold for the apocalypse — not because he fears it, but because he wants it. He does not pray, “Spare us.” He prays, “Give me advance notice.” He is leaning air stairs against the stars.

Since moving to Salt Lake City, my husband and I have started our own stockpile in a spare room: twenty-five pound buckets of oats, butane canisters, a portable stove, gallons of water, batteries, flashlights. We started it because the city is overdue for a catastrophic quake along the Wasatch Fault, and when the fault ruptures, the east benches will drop off the mountains, tilting the valley floor like a pitcher, pouring out the Great Salt Lake.

“Americans hate the Mormons,” I say to my husband after a news segment about the fault. When we first arrived here, Facebook friends regularly posted polygamy jokes on my wall. One called the Angel Moroni the Angel MORON-i. “Nobody will save us.”

Not long after that, my husband purchases an AR-15 and locks it in a gun safe. In a backroom closet, he stacks ammo boxes like bricks.

Can a city, by its very design, make you long for the apocalypse?

___

The Mormons have a saying: As long as you can see the temple, you are never lost. They mean this literally. On Salt Lake Temple, the Big Dipper carved into the west tower is in perfect alignment under Polaris, the North Star. As Polaris sits at the center of the clock dial of the stars, the temple sits at the center of Zion. The temple is meridian zero: the point from which all streets radiate, a spiritual and navigational compass. Almost every downtown address expresses latitude and longitude in relation to it: 200 S 500 E translates to two blocks south and five blocks east of the temple.

As long as you live in Zion, you know how far you have strayed from Heavenly Father — and how to get back to him. In this sense, as Nibley describes in the Meaning of the Temple, the temple is the “knot that ties heaven to earth, the knot that ties all horizontal distance together, and all up and down, the meeting point of the heavens and the earth.”

In the temple, man climbs back to the presence of God through the endowment: washing and anointing; a ritual drama of the creation and the garden of Eden; learning the signs, keys, and tokens to reach Heavenly Father in the afterlife, and finally, passing through a veil into the Celestial Room, symbolizing the presence of God. It is the fall of Adam in reverse. It is atonement.

“Notice what atonement means,” writes Nibley: “reversal of the degradative process, a returning to its former state, being integrated or united again — ‘at one.’ What results when particles break down? They separate. Decay is always from heavier to lighter particles. But ‘atonement’ brings particles back together again. Bringing anything back to its original state is at-one-ment.”

Atonement is the opposite of entropy, the opposite of the natural order of things, the Second Law of Thermodynamics, which dictates that things fall apart.

The temple, then, is an anti-entropy machine.

This is also why Joseph Smith — he would say God — designed Zion to be so compact and dense: one square mile, a maximum of twenty thousand residents; ten-acre blocks with twenty half-acre lots each; eight people per lot. “When the square is thus laid off and supplied,” he declared, “lay off another in the same way, and so fill up the world in the last days” — a divine urban-growth boundary. He knew if Mormons strayed off the plat, they would wander off God’s map and onto man’s. Zion would dissolve. The center could not hold.

___

In Salt Lake City, vandals mount insurrections on the crosswalk poles:

Crosswalk button with US Priority Mail label stuck to it that reads: JⒶWⒶLK! It’s a stupid fucking law, anyway.
Crosswalk sign with US Priority Mail label stuck to it that reads: OPRAH
JⒶWⒶLKS
(fuck the law)
Crosswalk pole with US Priority Mail sticker that reads: If God were real, he would JⒶWⒶLK!

Crosswalks are Zion’s Achilles’ heel, the intersection of what was and what is. When Brigham Young designed the streets 132 feet wide so oxen team drivers could turn around “without resorting to profanity,” he did not know he had exposed Zion to a fatal flaw: “wide, wide forever wide streets,” as Norman Mailer described them, ready-made for cars. The automobile was the anti-temple, a force of entropy destabilizing Zion’s crystalline structure. Zion dissolved, sprawling across the valley. The center could not hold. The population of Salt Lake City today: 189,314. Population of the metro area: 1,126,982. How many of those people can see the temple — actually see it?

“Even the smallest impurity or flaw in anything designed to continue forever would, in the course of an infinite stretching of time, become a thing of infinite mischief,” warns Nibley in What is Zion? And yet, Joseph Smith received the designed of the Zion Plat by divine revelation, and Brigham young was his spiritual heir — a Prophet, Seer, and Revelator, too. How could God telegraph to his chosen people a blueprint tainted with a fatal flaw?

I am, of course, committing my classic Gentile mistake once again: ascribing too much power to God and not enough to humanity. Zion can only come to a place completely ready for it. The streets had free will paved right into them from the start: You can U-turn. You can turn away. People chose cars, not God’s blueprint. Today, Salt Lake City is so car-obsessed that pedestrians risk life and limb to cross downtown streets. The city resorted to installing cups containing hazard flags on the crosswalk poles. Signs implore, “Take one for added visibility.” I refuse to submit to that lie.

At first, when JⒶWⒶLK appears on poles in my neighborhood, the graffiti seems like a force of entropy, too. If God were real, the vandal writes, tipping his hand: He is a nonbeliever, inciting pedestrians to revolt. And yet even he longs for the original Zion, the one designed for God’s people — emphasis on people — not cars.

Maybe, just maybe, the blueprint contains no flaw at all. Maybe this was supposed to happen. “One does not weep for paradise, a place of consummate joy,” writes Nibley, “but only for our memory of paradise.”

How can you atone without falling apart?

___

 

We are not canaries in the coalmine. Stop driving for the fucking air! — gas station graffiti

flyer from the Utah Department of Air Quality showing the valley at three different times, progressively more polluted to the point you cannot see the city or mountains–as if the city has sunk into a pollution sea

In winter, Zion becomes the bottle city of Kandor: entombed inside a fortress of solitude, breathing its own private atmosphere. The same mountains that insulated pioneer Mormons from persecution in 1847 turn traitor, trapping cold, stagnant air in the valley. Warmer air floats over their peaks, sealing the city inside an invisible bell jar. Meteorologists call the phenomenon an inversion because it flips the natural order: cold air near the ground and warm air high above. Heaven and earth trade places.

Here in the Bottle City, soot and particulates from power plants, automobiles, oil refineries, incinerators, and wood-burning stoves build up like exhaust in a locked garage, thickening into smog so dense it leaves a film on my teeth and hair, so caustic it sears my tonsils and throat. It tastes like a dirty penny. It gloms on to my vocal cords, corroding them until I sound like an old menthol smoker. Sometimes I cannot speak at all. My nostrils burn. My snot thickens into acidic goo.

Under the bell jar, the city is airless, windless, a kind of vacuum. Sound ceases. Winter birds hop along tree branches, beaks opening and closing, but I hear no song. Children scream and giggle, but the sound reaches me as though I am underwater. Barking dogs sometimes break through, but as in a dubbed film, their muzzle movements do not synch with the sounds. You would think smog could carry sound, that all those heavy metals would transmit it as clear as a telephone wire, but it does not.

The Utah Division of Air Quality calls the particulates PM2.5, meaning 2.5 micrometers in width, roughly 1/30th the width of a human hair, tiny enough to penetrate into the deepest lung tissue. Most of them are secondary aerosols: NOx from automobile combustion reacting with ammonia and other volatile organic compounds. NOx stands for nitrogen oxides: x as in algebra. Add to these molecules the intense UV radiation at Zion’s elevation of 4,300 feet, and a photochemical process gets sparked that cannot be stopped. The process is mathematical, predictable, exquisitely ordered: intelligent design. Even air-quality scientists call the chemicals species, as though they are living things, with volition and will and minds. When I walk through the smog, I am not just walking through toxic air; I am walking into a cloud computer, a sentient force.

NOx is unstable, as are all volatile organic compounds. Unstable atoms seek stability, order, an end to entropy: this is why they pair up, marry, give birth to new particulates. A microcosmic Bing Bang is happening right before our eyes. The smog is primordial soup, the stuff of new life: an inversion of the normal order of things, an insurrection against the Second Law of Thermodynamics.

Meteorologists blame the earth for the air: the strange topography of Zion, the mountains in all cardinal directions. Locals blame the air for the air. They call it bad air, as though it perpetrates evil. Never pollution, only bad air. “If it was the cars,” they say, “the air would be like this all the time, but it only happens in winter.”

They are wrong. In summer, we are a bottle city, too. Air stagnates then as it does in winter, except somehow Zion stays sealed inside with no lid to hold it. The sun beams down as omnipotent as a nuke, breaking apart molecules, accelerating reactions between NOx and volatile organic compounds to generate ozone.

Even with no temperature inversion, we are still breathing inverted air: stratosphere becomes troposphere. The same ozone that saves us from radiation high above kills us down below, rapid-aging our lungs. We cannot breathe the same air as God. And once the cycle begins, it perpetuates until molecules have no more atoms to give, ticking down like a doomsday clock.

They can blame the mountains and the air. I blame the temple.

The temple is yanking heaven down to earth by its knot, pulling it into the bottle like a model ship. The anti-entropy factory is working. It is holding air together on earth as it is in heaven. Unstable atoms fall apart; atonement brings them back together again.

I breathe the inversion in; I breathe it out — and just by entering my lungs, the air has changed composition once again. Simply by breathing, I am complicit in the cloud computer. I am co-creator of the intelligent design. I am quickening the apocalypse.

I am atoning.

___
January 2013: The Mother of All Inversions descends, choking off the Bottle City from fresh air for weeks. NBC News with Brian Williams finally picks up the story — the first national outlet to cover it.

On Facebook, my fears come true:

Facebook post from NBC News: Air Pollution Plagues Salt Lake City; comments posted:
Oh NO!!! “GOD’S” — country — RUINED by “GOD’S” PEOPLE?!” LOL!!!
Maybe it will wipe out all the Mormons.
Oh just pray it away.

We will die here, I think. Superman is not coming. Americans hate the Mormons.

Then I catch myself thinking, Good. We are still the peculiar people. The chosen people.

We.

___

 

When I first moved to Utah, I mistook the Bingham Canyon Mine for a volcanic crater. Later, I thought it might be a desert plateau because the rust-colored marbling around the crater walls reminded me of the painted hills in the eastern Oregon desert. Then I thought it was a rock quarry. Then a meteor impact site. Then a nuclear crater from the days of atomic blasts in the American West, even though I know the mushroom clouds bloomed over Nevada, not Utah, where Downwinders breathed the radioactive clouds that blew across state lines. When I learned it was the world’s largest open-pit copper mine, I refused to believe it. Nobody digs a mine pit in plain sight of a major metropolitan area.

Nobody, that is, except the enemy. On October 26, 1862, Colonel Connor planted the Fort Douglas flag on a hill overlooking Salt Lake City, signaling the United State government’s resolve to end the “Mormon problem” once and for all. To the feds — already embroiled in the Civil War — securing the provisional State of Deseret represented not only a strategic maneuver, but also a slap across Brigham Young’s face. To them — with his fifty wives and Danite henchmen slitting apostate throats in the dark — Brigham Young may as well have been the devil. Colonel Connor knew the self-proclaimed peculiar people could not survive the encroachment of Babylon, so he hatched a plot to lure Gentiles to Deseret. “You strike gold,” said Fort Douglas Military Museum Director Robert Voyles in the Salt Lake Tribune, describing Connor’s thinking, “how fast can you get gentiles?”

And even though Utah never spawned a California-scale gold rush, it did yield copper and silver — enough to make some Gentiles rich — as well as coal and uranium. Now 8,000 to 11,000 abandoned mines and 17,000 unguarded tunnels haunt this landscape. Since 1983, ten people have died falling into shafts, and twenty-six more have been injured. Stay out and stay alive, the Utah Bureau of Land Management admonishes, and though I know it is a public safety campaign, I get the sense something lurks beneath that warning, a double entendre.

Perhaps this is why mining particulates are called fugitive dust.

But here is the thing: Brigham Young not only let the mine happen; he helped it happen. He lobbied for the Transcontinental Railroad to meet at the Golden Spike. The railroad would bring Mormons into Zion, but it would bring Gentiles, too, and Gentiles would not defend Zion’s crystalline structure. Gentiles would be a force of entropy. He had to know the railroad would also speed trade, which of course included the mines. “If we were to go to San Francisco and dig up chunks of gold or find it here in the valley it would ruin us,” he said. He knew.

In 1974, Kennecott constructed the Garfield smelter tower 1, 215 feet tall, equivalent to three LDS World Headquarters office buildings stacked one atop the other: a modern-day Babel.

Garfield Smelter stack standing tall near the shore of the Great Salt Lake, photo by Doc Searls, Wikipedia commons

For 84 days, cement trucks worked around the clock, echoes of ox teams hauling granite from Little Cottonwood Canyon to build the Salt Lake Temple. To this day, the Garfield smelter remains the tallest man-made structure in Utah, designed to reach high enough in the sky to spit out pollution where it can blow away on the wind and meet the standards of the Clean Air Act. It is taller than the Las Vegas Stratosphere. Taller than the Seattle Space Needle.

With new efficiencies and cleaner emissions, the smelter no longer needs to stretch so high into the sky, but Kennecott has no plans to tear it down. It has become a kind of beacon for boaters on the Great Salt Lake and drivers on Interstate 80.

As long as you can see the smelter tower, you are never lost.

From a perch on the second story of a downtown parking lot, I can make out the walls of the Bingham Canyon crater, not the massive open pit where Kennecott shovels 450,000 short tons of earth every day. I squint, trying to make out the 320-ton capacity Komatsu trucks. With tires 12 ½ feet tall and bodies 29 feet wide and 51 feet long, they ought to be visible here, 27 miles to the northeast, like little remote-control trucks in a sandbox.

I can blame Brigham Young, but my people — the Gentiles — absconded with the land. What is the atonement for that?

Fugitive dust penetrates the deepest pockets of the lungs, lodging forever in the alveoli. I breathe in the mine dust, and within my wet flesh it becomes mud, which I exhale as water. It evaporates in the Zion sun and returns to the air. I transmute it. But I can never breathe it all the way out. It is part of me now. I am the fugitive dust. The fugitive dust is me.

___

 

After we shake hands, Bowen, Air Monitoring Manager at the Hawthorne Station, steps back as I photograph the two research sheds. I am surprised by how primitive they look, like meat lockers air-dropped in a snow bank. Were it not for the Hawthorne School playground just a few feet to the west, I might mistake the bare-bones setup for an Arctic research station.

The Division of Air Quality chose this location because of the school’s wide-open playground, but it has an added benefit: Children are most susceptible to asthma, so if scientists monitor the air where they play, they can protect the littlest lungs. The city contains better and worse pockets of pollution, so in this moment, I am sharing the same pocket as our little canaries in the coalmine. The canaries are nowhere to be seen; outdoor recess is canceled on red-alert air days. We are into Day Ten of the Mother of all Inversions, and I am struggling to inhale enough oxygen through my honeycomb charcoal-filter mask.

“You mentioned you’re a writer,” Bowen says. “You a reporter?”

“No,” I say, pulling down my mask so he can hear my raspy voice. “I’m a creative writer.” I don’t feel like explaining creative nonfiction, so I stop there.

“Good,” he says. “I mean — ” He steps closer, leans in, and knits his fingers together. — “we have to log all our interactions with reporters.”

We stand side by side, watching the wind-speed and direction instruments spin, slowly, as though underwater. It is hard to believe there is any wind at all.

“Want to take a tour?” He points to the two shed-like structures.

I walk with him, listening to the station buzz like a fly too close to my ear. I did not expect it to make so much noise. I did not expect it to be electric. I always pictured giant HEPA filters hung up on flagpoles, passive and silent. Then I realize: That I can hear it at all means it must be buzzing ten times louder on the other side of its smog muffler.

I follow Bowen up the stairs, feeling the vibrations of the humming trailers, and wonder how much electricity is required to keep this station running. Electricity contributes to inversion air because of the power-plant emissions.

On the way up, I glance at a playground slide, its red, blue, and yellow as brilliant as a Superman costume against the brownish-gray sludge in the air. “Do the kids pester you in the lab?” I ask.

Red, yellow & blue playground slides and jungle gym in front of the Hawthorne Air Monitoring Center

“No,” Bowen says, shrugging, already at the top of the stairs. “They pretty much ignore us.” He looks resigned, maybe a little sad.

“If I were a little kid at this school,” I tell him, “I would bug you every recess.”

He shrugs again, and I glance at the slide one more time.

The kids are steeping in it.

On the roof, I can peep into the backyards of several houses behind the school. I wonder if those people have any idea what these air-dropped meat lockers do — if they realize that when they log into the Utah Air Quality site that the reading is literally their air.

When Bowen opens one of the machines and removes a stack of filters, I am shocked at how tiny they are, like stacks of tiddlywinks or poker chips.

Bo’s hands with two round filters in the palm, each inside a plastic circle casing

He shuffles them in his palm, and I imagine all those bright red and blue plastic rings piling up in a landfill. As the filters degrade, the particulate disperse into the soil. Ashes to ashes, dust to dust. When desert winds kick up Utah’s parched earth, are they stirring pollution right back into the air?

“Do you keep them?” I ask, gesturing to the filters. “I mean, when they’re used?”

“We throw them away,” he says.

“No recycling?”

“No.”

Of course, even if they recycled them, where would the particulates go? Clean them out of the honeycombs and dump them in the dump. Either way, we are burying the problem.

I think about the charcoal mask I am wearing, and how I will throw it in the garbage when its nooks and crannies are crammed full. I think about the carbon and zeolite HEPA filter I stuffed in the trash bin this morning after installing a fresh one. We are burying the air in the earth.

Is air monitoring sustainable? Is protecting our lungs sustainable? Is breathing sustainable?

And then I remember: My filters work by adsorbing particulates — not simply absorbing, but adsorbing, too — meaning the filter and molecules are attracted: like to like.

Bury those filters, I think. Let them fill up a landfill. Let like attract like. Let Zion do it to itself.

___

By the time Utah doctors implore Governor Herbert to declare a public-health emergency because of the bad air, it is already too late for me. Sometimes my lungs feel like helium balloons, and no matter how hard I exhale, I cannot force out the air. I gasp and gasp until I am certain my lungs will pop. People always think of breathing as inhaling, but the body does not inhale because it needs air; it inhales because of too much carbon dioxide in the blood. In this sense, breathing means expelling poison. I cannot expel this poison.

The asthma doctor confirms it, pointing to my pulmonary function report and declaring, “You had trapped air in your lungs.”

“A mini-inversion,” I say, my voice barely a whisper. The pollution has damaged my vocal cords, too.

“Exactly,” he says. “Particulates and all.”

I consider this for a moment, how I am a microcosm of Zion now. What does that mean for a Gentile?

He seems to sense my confusion. “What you have is called extrinsic asthma,” he says, “meaning it does not come from within you. It is not part of you. It was triggered by something external.”

I want to tell him he is wrong, that my asthma is intrinsic. I want to tell him about the cloud computer, the intelligent design, the atonement. I want to tell him about the temple, how it is yanking heaven down to Earth. How some of us cannot breathe the atmosphere in Kandor, and that is intrinsic. I want to confess about the mine, how I have been looking at ads for the Daybreak housing development at the base of it, even though — because I know — the fugitive dust will be worse there. How like attracts like.

Instead, I nod and tell him I will inhale a steroid medication through an aerochamber and wear my honeycomb mask. I tell him I will buy a new HEPA filter. I tell him I will beat this, even though I know I have already succumbed.

I am the fugitive dust. The fugitive dust is me.

“What if I leave?” I ask.

“You might get better. You might not.”

“If I don’t get better, does that mean it was intrinsic?”

“How wonderful would it be if all you had to do was leave?”

___

Get out.

Family and friends, witnessing the Mother of all Inversions on national television, urge me — beseech me — to move out of Utah, to move back home, to move anywhere but here. “We have clean air in Minnesota,” an old high-school friend posts on my Facebook wall. “We have clean air in Iowa,” my family back home writes. “Come home.”

Get out.

I tell them my husband and I are searching out-of-state job boards. I tell them we are apartment hunting. I tell them we are making plans.

I tell them I am running a HEPA air purifier twenty-four hours a day.

I tell them I am inhaling my asthma meds, staying indoors on red-air days, and taking my vitamins. That I am eating dark chocolate daily, as Utah doctors recommend, that the antioxidants will shield me.

I do not tell them this: that I suspect they want to save me from conversion, not inversions.

I do not tell them my sickness is intrinsic, that it is part of me.

I do not tell them about atonement.

I do not tell them that the sicker the air makes me, the more I want to stay.

___

 

In the thick, blue air of an inversion, I venture out for the first time in weeks. A man shuffles past me on the sidewalk, cradling a transistor radio. He adjusts the antenna and tucks his chin to whisper into the speaker: “Joseph Smith, yes, I can hear you now. The signal is clearer because of the air.”

___

 

a child, a dog, you know, whoever

CW: violence, bombs, mention of CSA (not graphic, just a mention), mention of suicide, descriptions of dead bodies

Twenty-five years after a pipe bomb detonated inside a library book depository in my hometown, a high-school friend confesses he was part of the plot.

March 1991 newspaper graphic of the Marion library block and headline: Public’s help asked in probe of Marion library blast; a map shows the location of the bomb as well as damage to a Pizza Hut’s roof across the street

“We needed money our parents didn’t know about,” he says. “We needed a couple hundred bucks fast.”

One of the co-conspirators – a chemistry prodigy – had figured out a formula to synthesize LSD, and they needed chemicals and equipment for a basement lab.

“We were stealing money from vending machines using a magnet device one of us invented. You swiped it over the money slot, and it tricked the machine into spitting out change. But nickels and dimes take forever.”

So they built a bomb. The plan: stick the pipe bomb in the dispensing chamber, flee for safety, blow open the machine, and raid the cash box.

Middle-class white boys, all of them. I can’t believe they didn’t just ask for extra allowance–make up a lie. All of them had jobs, too. Why not just save up the money?

“We didn’t want to hurt anyone. We chose a pop machine at a gas station on the outskirts of town, planned it for late at night.”

But the pipe bomb wouldn’t fit in the take-out port.

“The other guys drove around all night looking for a place to dispose the bomb. The book depository seemed like a good idea.”

Cedar Rapids Gazette newspaper photo of bomb damage with headline “Bombing: ‘Pretty powerful explosion’

Back in the 90s, the LSD laboratory and pipe bomb took on the quality of urban legend: friends of friends of friends. I knew peripherally the chemistry prodigy; I knew he concocted a formula for LSD; I didn’t know the drugs and the bomb were connected.

And I didn’t know my friend was in on it.

The other boys all fessed up, served probation, and paid fines. Nobody ratted out my friend.

“I didn’t end up going that night,” he says. “I was saved. I had a date.”

But he still helped build the bomb.

I don’t know why he is confessing to me now, in a Pho joint in the middle of Colorado–maybe because the bond of a shared hometown is all we have left. Not just a shared hometown, but a hometown we hated.

Cedar Rapids: City of Five Seasons, City of Five Smells. When the wind blew the wrong direction back in the day, you got a whiff of blood & carcass from Wilson’s Meat Packing Plant. On the way into town from I-380: Captain Crunch from Quaker Oats.

We sneer about Toxic Tuesday, when the sewage treatment plant next to Mt. Trashmore caught fire and a plume of hydrochloric acid smoke loomed over the city like a real volcanic eruption:

Cedar Rapids Gazette front page of section B July 10, 2005, remembering Toxic Tuesday 20 years later with a photo of the smoke plume.

Mt. Trashmore, The Pile of Trash that Could:

Gazette newspaper clipping with photo of Mount Trashmore at the end of a city block. Caption: Cedar Rapids ‘mountain’: Mount Trashmore, a manmade mountain, resembles a Colorado foothill when viewed looking south along First Street East from E Avenue and the Interstate 380 bridge.

A real Midwestern mountain. 

“You’re the only person I know who gets as melancholy about Cedar Rapids as I do,” he texted me once, when he was homebound on I-80.

“Do you think you can be traumatized by a place? A city?” I texted back, even though it wasn’t the city that traumatized me. The city was just the backdrop. Or was it?

The last time I visited, I toured the Time Check neighborhood where my mother grew up, documenting houses destroyed in the 2008 flood–a flood brought on by global warming, by the city itself: the way it clings to car culture: the ethanol plant on Highway 30, its hatred of buses and sidewalks.

white house in the Time Check neighborhood with boarded windows and the words Home Deceased Home spray painted in blue by the front door

 

Cedar Rapids: city of missing sidewalks:

CR Gazette headline: Sidewalk expansion plans continue to get pushback in Cedar Rapids; water main plan calls for expanding sidewalks near Jefferson High School / photo of yard sign that says STOP SIDEWALKS /WALLS SAVE OUR TREES

City of no buses on Sundays, of intersections and no crosswalks, of relentless parking lots, of the Facebook group, You know you grew up in Cedar Rapids in the 70s and 80s because … where members post, “Cruisin’ the Ave!” and the chorus comments:

Up-and down and up-and-down!
Vickers to Hardee’s!

and I do not know the landmarks, because I never had a car, never drove a car, never learned to drive a car. I did not grow up in the same city as they did. I do not know their Cedar Rapids, and they do not know mine.

Where people post, “What muscle car did you drive?” And the chorus comments this:

Plymouth Roadrunner ad featuring a red car and tagline: The standard insurance rating is standard. The Rapid Transit System Coming Through.

and:

Dodge ad with a blonde, white woman standing in a lace dress with her hand on the trunk. Text says Mother warned me ….

and:

1970 Chevelle ad with an orange and black striped car and the tagline: In ten seconds, your resistance will self-destruct.

But my answer is this:

My sister, a blonde little girl showing off a yellow bicycle with a dramatic hand gesture and smile

 

My banana-seated bicycle with rainbow spokes, tossed out in the neighbor’s trash, scavenged for my sister, handed down when she outgrew it, an authentic muscle car because my muscles were its motor, and it ran on the fuel of human food.

I pretended my yellow bicycle was a semi-truck. I rode it up and down the street all day with my best friend. His house was a diner where Ore Ida fries were served up with burgers and peas, and mine an imaginary gas station, where we pretend-pumped diesel from a rusted-out snow blower in the garage.

We did not know Interstate 380 was unfurling like a scroll over the prairie, our futures inscribed upon the pavement like ink on parchment:

Cedar Rapids Gazette graphic of Interstate layout with headline: New Road, new challenges

Epileptic, future black mark next to my name at the DMV.

And from that day forward, all my friends became Car People and we did not travel the same roads.

“I used to see you walking on the shoulder of Blairs Ferry Road, straight into oncoming traffic,” another high school friend told me recently. “I should have pulled over, given you a ride.”

I do not know their Cedar Rapids, and they do not know mine.

 

___

By the time my friend drives me out to Pho & confesses his life as a Teenage Pipe Bomber, I have lived in Colorado six months. For years, he coaxed my husband & me into moving here from Utah.

“Get away from the Mormons,” he would say. “In Colorado, fun is legal!”

We signed a lease, and he said, “Come stay in my basement until your apartment is ready.”

Then, my syringomyelia —  a spinal cord condition meaning cavities in the spine — got diagnosed during a cascade of worsening symptoms: falls, spasticity, abnormal eye movements, pain, asymmetrical reflexes, and problems with coordination.

My invisible disabilities became visible, and my friend vanished.

When it came time to roll into Colorado with our U-Haul, his offer to crash in his basement evaporated. We had nowhere to stay and not a single vacant hotel room in the Denver metro region. Finally, we booked an overpriced hotel in Wyoming, which meant we wouldn’t have money for my epilepsy medication.

Now, I am homebound with ataxia, chronic pain, and a rolling walker I can’t get down the steep staircase outside my second-floor apartment so I use my walking cane even though it’s not as good.

Every morning, I circle a nearby hospital for exercise.

Google Earth view from above a large hospital complex encircled by a sidewalk.

My walking cane taps taps taps. From a drone, I am the minute hand tick tick tick.

two laps=one hour 

one lap = half hour

I am restless as a clock face.

The first thing I said as the moving truck pulled into my new neighborhood: “It looks like my childhood.”

In Cedar Rapids, we didn’t have sidewalks leading out. We didn’t have a bus stop. I walked alone on the shoulders of four-lane roads in the dark. I balanced on railroad tracks (I could do that back then). I spent a lot of time alone.

a sidewalk that abruptly ends, turning into grass and gravel. Text overlaid in all caps: YOUR KIND NOT WELCOME.

On Facebook, I click the photos of my friend’s inaccessible parties.  I say a mantra to myself: Twenty-six years post-ADA. Twenty-six years post-ADA. I forgive 100 times a day.

Sometimes he invites me but doesn’t offer a ride. I have no transit access and Via, the accessible van service, doesn’t take me most places, costs $6 each way for regional trips, and is usually booked solid a month in advance.

On a calendar, I start to mark the days I see nobody:

calendar from end of June 2016 to December 2016, with days without outside contact marked with a black dot. December 28th is not marked because it’s the day I have lunch with my friend.

By December, it looks like a DNA test. My DNA test. Bisulfite mapping of my methylation marks would look like this. Isolation methylates DNA. Obliterates genes. Marks people.

[I forgive 100 times a day.]

I text him the calendar.

He says, “Let’s go to lunch.”

Now he wants to make me his confession booth? I’m the “friend” where secrets go in and never come out, because I never get to go out. Who am I going to tell?

___

 

One year before the library bombing, I got locked up in the St. Luke’s Hospital adolescent psych ward.

First thing I witnessed when the security doors locked behind me: Doogie–so nicknamed because of his uncanny resemblance to Doogie Howser, MD–wrestled to the floor by two security officers, dragged to the Quiet Room, and the door slammed shut as he screamed.

It wasn’t quiet in the Quiet Room: you could hear him banging on the padded walls.

The next morning, when he got out, we fell for each other hard. He didn’t care I had EEG electrodes glued to my scalp–even got a pass to ride the elevator to neurology with me when I got them removed. We bought soda and chocolate from the gift shop; he asked me to meet him in the shower the next day.

That’s how kids in the ward hooked up. It was tradition.

“Don’t lock it when you go in,” he said. “Nobody is watching closely enough. I’ll sneak in. Then you leave first.”

I was locked up for a suicide attempt; Doogie was locked up for a pre-sentencing evaluation. His crime: chaining an ATM machine to his father’s pickup, dragging it out of a gas station parking lot, and busting it open with a hammer.

He needed money his parents couldn’t give him; he needed it fast.

He was poor, malnourished, neurodivergent, and on his way to serve time in the State Training School in Eldora.

Doogie never built a bomb, never would have even thought of building a bomb. But poor and neurodivergent gets you time–not fines, not probation–even if you didn’t actually hurt anybody.

___

 

After the 2008 flood, the Department of Justice came down hard on Cedar Rapids for violations of the Americans with Disabilities Act. Project Civic Access, it’s called: an effort to make cities accessible. In 2011, auditors visited public spaces all over the city and declared: disabled people are denied the benefits of civic life here.

In 2015: the DOJ sent Cedar Rapids a settlement. Fix it. Pave the sidewalks and curb cuts.

Still missing sidewalks, in red:

map of Cedar Rapids with many pathways in red, indicating missing sidewalks

 

“I don’t like sidewalks,” 94-year-old Ida Pratt says in the Cedar Rapids Gazette. “We don’t need them. Nobody even walks here.”

Nobody even walks here.

I am nobody. Nobody is me.

The city creates a master sidewalk plan, one criteria for high-priority paving being “evidence of pedestrian use”:

The final pedestrian use criteria is actual evidence of pedestrian use. Segments that have specific evidence of use by pedestrian should have a high prioritization. Each segment with evidence of use was assigned 10 points. The criteria are as follows: – actual dirt path on the ground – observed use – direct requests to city staff – survey responses to areas of pedestrian use

Evidence of my use. Tracked like some wild thing.

What evidence would I leave now? I cannot walk on uneven ground. If I walk on the shoulder and nobody sees me, is there still evidence of pedestrian use? 

The sidewalk plan identifies pedestrian generators: places that produce pedestrians. St. Luke’s Hospital makes the list, and I think: they are a pedestrian generator, literally. The doctors there made me epileptic.

But the city resists. The city feels under siege.

 

tweet from @bmorelli, a Gazette reporter: This meeting has it all. Commenter accuses city staff of being “Russian” for proposing sidewalks to a park in their neighborhood.

City Council Meeting June 2017, resident Joe Day:

We don’t walk down the street. We drive.

It has no purpose whatsoever, other than Russian logic that because we (did road work on) Bever Avenue, ‘Ve vill have sidewalks whether you like it or not.’ [mocking a Russian accent] “Well, we don’t like it. It has no purpose.

Sidewalks get voted down. Them Russians Them Russians. Them Russians. Nuclear winter is coming. The Russians are going to nuke Cedar Rapids.

That’s what they mean by “Russian.” Cold war all over again, except now, sidewalks are the bombs.

That fear got drilled into us from childhood. Cedar Rapids was a prime target:

 

1982 newspaper clipping with a map of Cedar Rapids & a nuclear destruction zone drawn on it in concentric circles from Rockwell Collins

Rockwell Collins, makers of military aircraft communications, of shuttle parts: a nuke attractor.

Now, I am my hometown’s biggest fear: a disabled person demanding access.

You can’t equate sidewalks to bombs without equating me to a bomb.

I am your epileptic bomb, come to blow up Car City. tick tick tick 

 

 

___

“The worst part,” my friend says, “is that boy who died a few months later.”

He means Mitch McWhinney:

Cedar Rapids Gazette newspaper clipping dated April 17, 1991 with a photo of Mitch McWhinney and the bombing scene with the headline “Homemade bomb kills teen in Linn”

“It still haunts me. How that kid died copy-catting us. I’m responsible for that. I never wanted to hurt anyone, and I did.”

I reach out for his hand and tell him, “You couldn’t have known.”

Later, I think: How could you not have known? How can you plant a bomb anywhere and not think, this could kill someone?

___

Maybe my friend confessed to me because he is not the only pipe bomber in my life. 

In Salt Lake City, my way into Mormon theology was through one of the most notorious criminals in Utah history: Mark Hofmann, forger of Mormon historical documents and planter of nail-filled pipe bombs that murdered two people and blew out his own kneecap–all to cover up his forgery schemes. 

He forged a lot of documents, but the one that got me gripped into Mormon history was the Salamander Letter–not only because of its content, but because it was true. A forgery that was true.

In the letter, Hofmann assumed the identity of Martin Harris, witness to the golden plates and patron of the translation from “reformed Egyptian.” Hofmann-as-Harris wrote:

front and back of Salamander Letter

 

Palmyra October 23d 1830

Dear Sir

Your letter of yesterday is received & I hasten to answer as fully as I can–Joseph Smith Jr first come to my notice in the year 1824 in the summer of that year I contracted with his father to build a fence on my property in the corse {sic} of that work I approach Joseph & ask how it is in a half day you put up what requires your father & 2 brothers a full day working together he says I have not been with out assistance but can not say more only you better find out the next day I take the older Smith by the arm & he says Joseph can see any thing he wishes by looking at a stone Joseph often sees Spirits here with great kettles of coin money it was Spirits who brought up rock because Joseph made no attempt on their money I latter dream I converse with spirits which let me count their money when I awake I have in my hand a dollar coin which I take for a sign Joseph describes what I seen in every particular says he the spirits are grieved so I through {sic} back the dollar in the fall of the year 1827 I hear Joseph found a gold bible I take Joseph aside & he says it is true I found it 4 years ago with my stone but only just got it because of the enchantment the old spirit come to me 3 times in the same dream & says dig up the gold but when I take it up the next morning the spirit transfigured himself from a white salamander in the bottom of the hole & struck me 3 times & held the treasure & would not let me have it because I lay it down to cover over the hole when the spirit says do not lay it down Joseph says when can I have it the spirit says one year from to day if you obay {sic} me look to the stone after a few days he looks the spirit says bring your brother Alvin Joseph says he is dead shall I bring what remains but the spirit is gone Joseph goes to get the gold bible but the spirit says you did not bring your brother you can not have it look to the stone Joseph looks but can not see who to bring the spirit says I tricked you again look to the stone Joseph looks & sees his wife on the 22d day of Sept 1827 they get the gold bible–I give Joseph $50 to move him down to Pa Joseph says when you visit me I will give you a sign he gives me some hiroglyphics I take then to Utica Albany & New York in the last place Dr Mitchel gives me an introduction to Professor Anthon says he they are short hand Egyption {sic} the same what was used in ancient times bring me the old book & I will translate says I it is made of precious gold & is sealed from view says he I can not read a sealed book–Joseph found some giant silver specticles with the plates he puts them in an old hat & in the darkness reads the words & in this way it is all translated & written down–about the middle of June 1829 Joseph takes me together with Oliver Cowdery & David Whitmer to have a view of the plates our names are appended to the book of Mormon which I had printed with my own money–space and time both prevent me from writing more at present if there is any thing further you wish to inquire I shall attend to it
Yours

Respectfully
Martin Harris
(sic)

Joseph Smith: money-digging, glass-looker con artist who founded a whole religion on magic.

He was poor. He needed money his parents couldn’t give him. And he was temporal lobe epileptic, like me. Prone to religious visions.

Joseph Smith — History 1:14–16

After I had retired to the place where I had previously designed to go, having looked around me, and finding myself alone, I kneeled down and began to offer up the desires of my heart to God. I had scarcely done so, when immediately I was seized upon by some power which entirely overcame me, and had such an astonishing influence over me as to bind my tongue so that I could not speak. Thick darkness gathered around me, and it seemed to me for a time as if I were doomed to sudden destruction …

… just at this moment of great alarm, I saw a pillar of light exactly over my head, above the brightness of the sun, which descended gradually until it fell upon me.

Joseph Smith — History 1:17–20

When I came to myself again, I found myself lying on my back, looking up into heaven.

Psychological Report for Karrie Higgins 5–11–1990: … “states that with her seizure episodes, she has difficulty with word finding, memory gaps, staring spells, and loss of consciousness. The patient denied any substantial personality changes since the onset of the seizure problem, although she does mention that her anger seems to be a bit more intense. She is a big more detached from friends, but at the same time, sees herself as being more mature in her relationships and with a deeper sense of religion …

In 1945, historian Fawn Brodie wrote about Smith’s first run-ins with the law on “disorderly person” and “imposter” charges in No Man Knows my History. Smith, she wrote, confessed to “indulging in magic arts and organizing hunts for buried gold.” As an adolescent, he was “notorious for tall tales and necromantic arts” and “spent his leisure leading a band of idlers in digging for buried treasure.” His divine First Vision, then, maybe derived from something less than divine. For that, she got excommunicated.

And that is what made the Salamander Letter so dangerous: it corroborated forbidden knowledge. It corroborated the damned.

“I believe the documents I created could have been part of Mormon history,” Mark Hofmann said. “In effect, I guess the question I asked myself in deciding on a forgery, one of the questions was, ‘What could have been?'”

I became obsessed with forgeries that were true and made it the basis of my book about my dead brother Greg, who sexually abused me from ages 5-11: I would forge the truth, make him confess.

I learned to make inks from Hofmann–and how to age them.

I learned how to chemically strip ink from vintage Valentine cards, write something new in my brother’s “authentic” handwriting, and re-age the paper.

 

 

Valentine with a girl in a car and a policeman stopping her. Text creepily says Police Don’t Stop!

 

Back of original card says To Barbara from Elaine and Carol.

After stripping, forging and re-aging:

Front and back of card. Back now says: If you tell on me, you tell on yourself. – Greg

The only difference: I wouldn’t try to bamboozle anyone. I would always confess to the forgery. I wanted the fact of the forgery to become part of its testimony. Look what I have to do to prove my own history. 

I wrote Hofmann letters to his address in Utah State Prison in inks I learned to make from him. I asked him about his fast car:

Letter to Mark Hofmann in prison, written in his iron gallotannic ink formula: Dear Mark: Tell me about your fast car, the hot little Toyotoa MR-2. The “poor man’s Ferrari,” the car that “brought back the fun.” What made you want that machine? Was it the five-speed pistol grip shifter? Was it the pop-up headlights? The transversely mounted, 4-cylinder engine? How it handled like a roller coaster?

I wrote him letters about learning Deseret Alphabet, about ink-making, about my brother.

____

 

In 2012, I sat down in the Joseph Smith Memorial Building on Temple Square with forensic document examiner George Throckmorton. He is legend: the cop who unmasked Hofmann. Upon discovering a distinct cracking in the ink on almost every Hofmann document, he proved the forger’s methods by becoming him: brewing iron gall, writing on authentic period paper, and rapid-aging the ink.

Before we met, I asked over email for the microscope magnification he used to discover the cracks. I did not reveal that I wanted to examine my own iron gall under the microscope, but I think he knew. Certain information cannot fall into the wrong hands, he explained.

My hands are the wrong hands.

“I never read the content of the Salamander Letter while I was testing it,” he said. “I wanted to find out the truth, regardless of whether it embarrassed the church. My faith was rock solid.”

“What do you think about Mormons getting their faith back when you proved the letter fake? It’s a strange position to be in as a scientist, don’t you think? Saving someone’s faith?”

“What do you think about someone who loses faith over a letter?”

I thought back to a conversation I had with sister missionaries: how testimony is a feeling, not something you can glean from evidence. “They never had faith to begin with?”

“They never had faith to begin with.”

I didn’t tell him how I got faith from that letter.

One line in particular:

the spirit says bring your brother Alvin Joseph says he is dead shall I bring what remains

Joseph Smith’s big brother Alvin fell sick in 1823 with bilious colic, took prescription calomel — pure mercury chloride —and died from mercury poisoning. Joseph never got over it.

The Smiths really did dig up Alvin’s grave. In 1824, Joseph Smith, Sr. placed an ad in the Wayne Sentinel:

To the Public.

Whereas reports have been industriously put in circulation, that my son Alvin had been removed from the place of his internment and dissected, which reports, every person possessed of human sensibility must know, are peculiarly calculated to harrow up in the mind of a parent and deeply wound the feelings of relations — therefore, for the purpose of ascertaining the truth of such reports, I , with some of my neighbors, this morning repaired to the grace, and removing the earth, found the body which had not been disturbed.

This during a time when the “failure to obtain the security of an unmolested, marked grave represented a fate worse than death. Judges could and did punish particularly heinous crimes by consigning the executed criminal to dissection on the anatomist’s table,” writes Samuel Morris Brown in In Heaven as it is on Earth: Joseph Smith and the Early Mormon Conquest of Death.

“Though the stench of early putrefaction had dissipated, Alvin’s corpse likely wore a ghastly mien, with missing eyes and nose but large patches of adipocere — an oily white coating — spread across his face and torso,” writes Morris.

Joseph Smith had to look at that, and I know how that feels.

I wouldn’t see my brother’s body until years later, when the Cedar Rapids Police mailed me the death scene photos.

my brother’s apartment door with a golden letter A on it, from the crime scene photos

I had to peer into his grave, too: fixed lividity from the ribcage up where the blood pooled into a purple bloom; putrefactive decay of the jaw after two days face to floor.

All I had for a long time was the autopsy report: I knew the weight of my brother’s heart (480 grams); the bilateral diameter of his pupils (4mm); how his right lung outweighed his left one by 200 grams. I knew his liver weighed 2100 grams, and his left kidney weighed 10 grams more than his right. My brother dissected on the autopsy table.

Years after the exhumation, Joseph saw his big brother in a vision of the Celestial Kingdom. How was it possible? Alvin died before Smith’s restoration of the gospel. Just then, a revelation struck: that the dead could receive the gospel in the afterlife; living proxies could be baptized on their behalf. Joseph Smith built a crucial tenet of Mormon salvation on grief for a dead brother.

Mark Hofmann, once a pre-med major before embarking on his forgery career, made the Smiths’ worst fears come true: he dug up their son and dissected him — in a forgery lab instead of on the anatomy table.

What, then, would Hofmann think of this: that I love Joseph Smith more because of his forgery — not less. That I love the Mormon faith more, too. When it comes down to it, what am I doing by forging my brother’s confession if not fighting to save his soul? Isn’t that a kind of testimony?

____

For a long time, I bought Mark Hofmann’s explanation about the bombings: that he cracked. That he wasn’t a violent, murderous person by nature–that he just lost it when he thought he’d be exposed as a forger.

I think I needed to believe him.

He blew up his own car with a third pipe bomb, shattered his kneecap, and claimed it was a suicide attempt. Was this repentance?

1987 Los Angeles Times photograph of the front of Mark Hofmann’s Toyota MR-2 after the bombing.

But I had lingering doubts, too. I went to the Judge Building to retrace his steps on October 15, 1985, the morning he planted a bomb that killed Steven Christensen–purchaser of the Salamander Letter on January 6, 1984 for $40,000.

side by side of the Judge Building the day of the bombing in 1985, with police investigators marking bomb shrapnel and evidence; and the same hallway in 2012

I kept a notebook of decisions Hofmann made at every step.

Decision #1 Entering the Judge Building. Under his left arm, he cradled the booby-trapped package.

Of course, Hofmann disabled the mercury switch for his own safety, ice-picking a hole in one side and taping one wire outside, cutting off the circuit. When he delivered the package to Christensen’s door, he unstuck the outer wire, threaded it back into the hole, and completed the switch.

Decision #2 I press the call button. I am not ringing an elevator; I am ringing the doorbell to a time machine. In the preliminary hearing, witness Bruce Passey said it took 3 to 4 minutes from the time Hofmann walked in to the time the elevator dinged.

Set a timer to 4 minutes: it’s a long time to not change your mind.

Decision #3 A young law clerk slices his hand through the closing doors, as if slitting an envelope seal. At first, I feel like he is intruding on my private correspondence with Hofmann. I wanted to do this alone. Then I realize: he is my Bruce Passey. That is the difference between secrets and history: in history, there is always a witness, always corroboration; otherwise, how does it become history?

“What floor do you want?” He says.

I start to say 6, and I correct myself. Hofmann pressed 5 on that morning. Then, when everyone exited and he had the car to himself, he pressed 6.

“Five,” I say. “Thanks.”

I feel a shiver when he presses 3. That was the same floor Bruce Passey chose on October 15, 1985.

Decision #4 Law clerk out of sight, I press the call button for 6th floor.

Decision #5 The ride takes 50 seconds, during which I do not change my mind.

Decision #6 On the 6th floor, I exit the elevator and turn right, toward suite 609–or what used to be suite 609 in 1985. The doors have changed numbers now.

Decision #7  If today were October 15, 1985, and I were Mark Hofmann, I would be watching insurance agent Janet McDermott from suite 610 as she knelt and almost picked up the box labeled To: Steve Christensen in black magic marker.

“What kind of an expression was on this person’s face?” Prosecutors asked her at the preliminary hearing.

“Noncommittal expression. They weren’t angry at me; they weren’t smiling at me. There was no recognition.”

No recognition. Hofmann knew if she touched that bomb, she would be blown to bits, and he said nothing—did nothing.

Decision #8 Walk away. Leave the bomb for someone to find.

So many moments to turn back. So many times he could have spared Steven Christensen’s life.

___

And the other bomb? That one killed Kathy Sheets, unlucky wife of Hofmann’s real target, in her own driveway. It had a flaw in the mercury switch. Hofmann knew it, and he left it to fate. It didn’t even have to go off for his plot to succeed: all he needed was someone to find that bomb, throw the cops off course in the investigation of the Christensen murder.

From Hofmann’s Board of Pardons hearing:

Transcript:

Hofmann: At the time, I rather, well, as strange as it sounds, it was almost a game as far as, uh, I figured there was a 50% chance it would go off, a 50% chance that it wouldn’t.

Q: It seems to me that a man who created the kinds of documents you create, well, you have a knack for things technical. It seems to me that a man with that sort of technical know-how could ensure that detonator had not gone off, and you could have served your purpose without killing Mrs. Sheets. Was that on option?

Hofmann: It was certainly an option. At the time I don’t think I considered that. Like I said, it was almost a game as to whether it would or wouldn’t.

Hofmann: What I had hoped would happen is that nobody would die by that bomb.

Q: But you knew that it was possible that anyone might die by that bomb, that a child walking by the garage might die by that bomb.

Hofmann: My thoughts at the time when I made that bomb, my thoughts were it didn’t matter if it was Mr. Sheets, a child, a dog, you know, whoever.

A child, a dog, you know, whoever.

___

My friend knows I am writing this book. Maybe he thinks: Here is someone who can understand a bomber. Here is someone I can make my witness, corroboration to make my story true.

___

 

Later, after my friend drives home from our Pho date, I try to console him. I remind him how 1991 got dubbed the year of the pipe bomb.

Cedar Rapids Gazette headline & story: State finds ‘alarming’ increase in Iowa incidents involving bombs. DES MOINES: An ‘alarming’ trend in the 1990 statewide fire report is a steady rise in the number of incidents involving explosive devices, particularly teenagers experimenting with pipe bombs, State Fire Marshall Roy Marshall said. That trend seems to be continuing into 1991 …

“Maybe that kid from Regis was inspired by those bombers,” I text him. “Not the library, not you.”

I won’t realize it until later, but I am chipping away at his sense of grandiosity. I will not be glamored by you, I want to say, but I don’t.

Or maybe that kid from Regis was just a bomber in the making already, a tinkerer, as his parents described him:

April 1991 Cedar Rapids Gazette photo of Kay McWhinney leaning her head on John McWhinney’s shoulder as they look down in anguish. Headline reads: Bomb victim’s dad says son a ‘tinkerer’

My friend texts back. “There were … test runs.”

And on those test runs: He was present; no dates. He helped plant bombs that anyone could have touched–a child, a dog, whoever.

March 10, 1991 headline: Pipe Bomb Explodes
The blast damaged a US West pay phone in the parking lot at Carma Lou’s House of Music, 42nd Street and Center Point Road NE. he said.
Two people who witnessed the explosion while driving past the scene told police they saw a compact car pulling away from the parking lot about the same time, Police Lt. Mark Corrigan said.

 

I remember those bombings–not as phone booths, but as bus stops. I was terrified. Epileptic girl who couldn’t drive blown up by pipe bomb at NE Cedar Rapids bus stop. 

How did my brain replace phone booths with bus stops?

As Felipe De Brigard writes in Synthese:

“In particular, I argue that many ordinary cases of misremembering should not be seen as instances of memory’s malfunction, but rather as the normal result of a larger cognitive system that performs a different function, and for which remembering is just one operation. Building upon extant psychological and neuroscientific evidence, I offer a picture of memory as an integral part of a larger system that supports not only thinking of what was the case and what potentially could be the case, but also what could have been the case. More precisely, I claim that remembering is a particular operation of a cognitive system that permits the flexible recombination of different components of encoded traces into representations of possible past events that might or might not have occurred, in the service of constructing mental simulations of possible future events.”

Like Hofmann, I’m forging a history of what could have been true, what was actually sort of true.

Ever since I left Iowa, I lived in cities where I could have an active social life: Portland, Oregon; Salt Lake City. We got apartments in or near downtown so I could be part of the world, even though they cost too much. I had a life.

But lurking in the back of my mind: the threat of living in a city like Cedar Rapids again. We got priced out of Portland fast. Almost priced out of Salt Lake City, but we left before it happened.

I turned phone booths into bus stops as mental simulations of future events.

___

In 2015, I talked to my brother’s best friend and Airborne buddy. By then, my brother had been dead seven years.

“Your brother wrote you letters all the time,” he said. He meant during his Airborne days in the 1970s–and later, into the 1980s, when I was a kid.

“He mailed you presents. He made a big deal out of it, buying little presents for his baby sister.”

I thought of the Valentines and birthday cards I had forged in my brother’s handwriting and mailed to myself.

Valentine card with four panels: How to keep busy when you’re alone and miss me → over; How to keep busy when you’re alone and miss me, with illustration of two children facing each other on an orange background → “you liked it like a big girl” written in Greg’s handwriting and signed, Greg, then one more panel of How to keep busy when you’re alone and miss me →

My forgeries really had been true. There were real cards, real letters. What did they say? Where are they now? My parents must have intercepted them and tossed them in the trash, where they got carried off in trucks to Mt. Trashmore.

___

Mt. Trashmore, The Pile of Trash that Could. 

These days, an epilepsy charity sponsors a fun run up that fake mountain: Dash to Bash Epilepsy.

Some people even call it the Trash Dash to Bash Epilepsy.

Cedar Rapids Gazette cover in 2014, with headline: Turning trash into treasure; Plan for reclaiming Mount Trashmore calls for trails, decks, greenhouses, composting, and observation decks, with an aerial photo of Mt. Trashmore and the Cedar River

A treasure for whom?

bash
transitive verb
1 : to strike violently : hit; also : to injure or damage by striking
2 : to attack physically or verbally

Somewhere, deep down in the strata, lies my banana seated bicycle, long since taken to the dump after I finally destroyed it with my BMX tricks (I could do that back then). I like to think of it there as I picture the runners dashing up our fake Midwestern mountain: stomping on the skeleton of my childhood self, that little girl who would never get to drive.

How many of them give their epileptic friends and family rides? How many treat them like confession booths?

After the floodwaters retreated in 2008, Mt. Trashmore – capped since 2006 – was unsealed to entomb 430,000 tons of debris. Trash dashers are running atop detritus from the flood they wrought with their own cars. Car People are bombs, not me. tick tick tick They want to bash epilepsy, but they don’t want sidewalks or buses or to shut down the polluting ADM plant that burns coal to make their ethanol to make them feel oh-so-clean while driving in Car World. They want me cured bashed out of existence.

___

In the end, I cut My Friend the Teenage Pipe Bomber off for good. Not because he dropped a pipe bomb in a phone booth — he seems repentant — but because he doesn’t understand he is still planting metaphorical bombs, still hurting people. Isolating disabled people kills us. The body responds to isolation the same way it does a wound.

days marked alone on my calendar in the months after my friend’s confession; one visit in March from an out-of-town friend

tick tick tick

Seven months after my friend’s confession: I get blood clots.

I am forced to crawl into the ER, where they refuse to do an ultrasound. “You’re 5’8″, 115 pounds, don’t smoke, don’t take the pill, aren’t pregnant. There’s no way you have a blood clot.”

I hold my ground, refuse to leave until they test me. They do a d-dimer, it comes back elevated, and I finally get my ultrasound–plus a prescription for a $400 bottle of Xarelto. They don’t put me on coumadin – even though it’s much cheaper – because it requires weekly blood monitoring, and I will never get a ride.

When they release me, I worry about whether I can crawl back home because: I can’t count on abled friends. “Call an Uber!” They will say, like they always do. They don’t understand: Uber drivers abandon me at the curb when they spot my cane or rollator or get freaked out by my ataxia.

I don’t have options like they do–and that, right there, is my biggest risk factor for the clots.

In socially isolated people like me — denied the benefits of civic life, as the DOJ would say –fibrinogen levels are so high we might as well chain smoke.

Fibrinogen: glycoprotein circulating in the blood, ready and waiting for a blunt force trauma, a cut, a fall. At the moment of injury, it springs into action, transformed by thrombin into fibrin to form clots.

When I call my friend out on his abuse, he says, “I’ve never done anything evil to you as far as I know.”

Isolation is evil, though. Isolation is abuse. Isolation is a wound, and my body responded the only way it knows how: to clot.

How many decisions did my friend make in the time I’ve lived here? Not to offer a ride, not to come visit, not to choose an accessible restaurant for a party. Do I really believe he never wanted to hurt anybody?

I saw you walking in the street. I should have offered you a ride. 

I didn’t make time for you–the excuse my friend gives via email, after I block him on social media. You had plenty of time for abled friends, I reply.

Here, let me confess to a crime because who will you tell?

Is it possible to be traumatized by a place–a city?

 

calendar with days alone/isolated marked through August 2018; September has some days with a friend visiting from out of town

tick tick tick

Anna March, disability exploitation, and AWP

CW: mentions of abuse, CSA, suicide

Last week, Melissa Chadburn and Carolyn Kellogg published a disturbing expose in the Los Angeles Times about literary grifter Anna March.

Or is it Nancy Lott?

Or Delaney Anderson?

Or Nancy Kruse?

So many writers — mostly marginalized — are tweeting stories about how Anna did them wrong: bullied them into editing for her magazine; bailed on payments; canceled retreats with no notice; threatened them.

Other writers are blaming Anna’s victims, calling them “fame hungry” or “lazy.” They are wrong.

The blame lies 100% with Anna March.

And yet, there is a reason Anna March targeted marginalized writers, mostly writers of color. And there is a reason Anna March — a white, able-bodied woman — got away with it for years. Anna’s cons never could have succeeded without the very injustices she claimed to be fighting as a pink-haired Feminist Killjoy.

I want to share a perspective that’s been left out of the narrative, but has been on my mind since Anna March first came onto my radar in September 2014: how she built her entire career on exploiting her then-boyfriend’s disability.

And how you all celebrated her for it while staying silent in the face of disability discrimination.

___

November 2014, two months after adding Anna March on Facebook.

I have just published a viral essay — Strange Flowers. (CW: CSA) My writing has never gotten this kind of attention. I am overwhelmed by friend requests, emails from strangers about childhood abuse stories, and accusations that I made it all up.

Like this comment on The Manifest-Station (since removed), attempting to discredit me by way of discrediting my medical experiences:

I have mixed feelings about this piece, and the related earlier piece about her brother which I just read. Here’s what I feel: she should simply be writing fiction. This purports to be essay as if strictly autobiographical but there are differences in the earlier story and this. In addition, much poetic license is taken. Its unlikely a routine extraction even with big and even deformed tooth roots would take three hours. An oral surgeon cuts a tooth when roots are in different planes. Even a difficult extraction doesn’t take three hours. And the likelihood the dentist or oral surgeon would, after some record breaking impossible three hour extra action, walk the tooth like an animal etc, is probably nill. That’s just one tiny example of why I have mixed feelings. This work is more like magical realism inspired by some real events but woven into a fictional and surreal landscape. So my mixed feelings come from using the shock value of a supposedly true first person narrative. I am not denying abyss happens including terrible abuse but this writer’s work reads more to me like a work of imagination based on some real experiences but turned into fiction. I call it fiction if its not simply fact. Its very interesting how she uses visuals to express some of the story. She’s very talented. My other critiques are not critiques, its just personal. She successfully blends pain with Eros. This seems honest but I feel the heebie jeebies when I read of erotic pleasure hinged to physical and emotional pain.

Even years before #MeToo, Coco knows it’s not a good look to attack the facts of my abuse story. Instead, she homes in on my dental extraction. It could not have taken that long. The dentist could not have been so weird.  It’s easy to discredit disabled people this way because the machinery is already in place: doctors also don’t believe us. They gaslight us, abuse us, and disregard our experiences in favor of whatever some outdated medical textbook written by a white, cis man says.

Just for laughs, I recently asked my mother — who drove me to the extraction and waited in the lobby — if she remembered the weird elephant tooth:

me: Do you remember in Iowa City when I got some wisdom teeth extracted and it took hours for one tooth to come out? mom: Yes I remember that. Roots were wrapped around the bone. me: Alan remembers, too! And the dentist was so weird and called the tooth an elephant. It did look like one! Mom: yes, it was huge, too.

Yes, that extraction really happened, and it took so long for two reasons: I went to a discount college town dentist, not an oral surgeon, and my genetic connective tissue disorder (not yet diagnosed at the time) makes dental work excruciatingly complicated.

I could show you records of other extractions, too — all many hours long. But I won’t. Because I don’t owe you anything.

But Coco also goes after my physical pain, too, calling it “honest” but wrong.

Here is the thing: I don’t remember a day without pain. I have Chiari-Syringomyelia and Ehlers Danlos Syndrome, amongst other conditions. I live in pain every day of my life, and that pain — plus my epilepsy — formed the basis for why I was an easy target for childhood sexual abuse. Epilepsy, a developmental disability, carries a 90% risk. I also have learning disabilities, am part deaf, have central auditory processing disorder and am bipolar.

For me, there is no eros without pain. Sex hurts. Like anything else in my life: it hurts.

Coco wants to disembody my sexual experiences–remove the pain, remove the trauma. But the trauma is inextricably linked to the pain, and the pain to the trauma.

Combine those issues with complicated grief + mania (I was manic when some of the events in Strange Flowers went down) and you get that “surreal landscape” that put Coco at dis-ease.

___

Then the agents start contacting me. They like the surreal landscape and the magic. They like my voice. “I’ve never read anything like this,” an agent says.

Except, they don’t want me to be disabled — only to write like I’m disabled.

An agent wants to know if I “still have seizures” and he is worried about my mental illness.

“I don’t want to work with someone who might commit suicide,” he says.

He wants my neurodivergent, disabled narrative, except can it come without a disabled body attached?

He is just like Coco.

___

Enter Anna March.

I seek advice in a Facebook group for women-identified writers, and Anna March comments that this agent is just concerned, maybe a little paternalistic. Anna is a new Facebook friend. We met through her New York Times Modern Love piece a few months ago, about which I have mixed feelings because, in it, she erases her boyfriend’s disability:

Here’s the thing about Adam and me. Despite all appearances, with him being disabled, I actually consider myself to be the less “able” person in the relationship. People may assume that Adam is dependent on me, but I think it’s the other way around: He’s the stronger one, and I rely more on him.

Right down to the quotation marks around “able,” Anna simultaneously erases Adam’s disability and wants it to be the center of their love story: Look at me, she says. I love a man in a wheelchair!

But also: My boyfriend isn’t disabled at all! 

Even the illustrations are erasure:

Anna and Adam seated in a wheelchair made of bricks. Anna is poised on the armrest and Adam looks up at her.

Anna literally occupies his wheelchair. Except it’s not an actual wheelchair. It’s made of bricks, a symbol of their new, 3-story cottage:

One evening after the contractors left, Adam, trying to help, picked up a heavy box of discarded bathroom tiles and other trash and headed for the pile outside. As he rolled toward our mudroom, the box slipped off his lap, sending dozens of filthy tiles crashing to the floor along with someone’s leftover Big Gulp cup, which splashed soda over freshly painted walls.

I didn’t know whether to scream, cry or run away. Instead, I said: “Leave me alone! I don’t need your help.”

Adam disappeared, and I cleaned up alone, crying.

“I can’t do this,” I whispered as I swept and scrubbed. Not this house or this man.

Abled readers probably do not pick up on it, but this is abusive. You can’t buy an inaccessible house and get mad when your disabled boyfriend experiences … access barriers. In fact, disabled people face a much higher risk of domestic violence in part because abled partners can wield access like a weapon.

“You would never do that,” I say to my husband. “When I drop things or make messes, you always offer to clean it up and tell me it’s no big deal.”

Anna takes it one step further: She steals Adam’s disability — his spinal cord injury — for herself, as metaphor:

That’s why people who think Adam would be lost without me have it backward. After his world fell apart at 16, he rebuilt it, year after year, and now he is a fortress. My world was also blasted apart when I was a child, but I’m just getting a handle on it now. In many ways, it’s as if I’m trying to escape from a crushed minivan of my own and having to remind myself, just as he once did, that I’m O.K., that I’m alive.

I have scoliosis, cervical instability, and a spinal cord injury (in my case, caused by a birth defect in collusion with a genetic connective tissue disorder), and every single day, I grind my teeth as people use my Jenga Tower spine as a metaphor for cowardice and even evil:

Twitter account: Paul Ryan’s Spine with an illustration of a backbone and Paul Ryan

Even Alt_NIH:

ALTNIH Twitter account using #spineless hashtag to refer to POTUS

I am a patient at NIH because of my spine. Imagine seeing that on a Twitter feed run by — who? Doctors there?

Scientists Baffled by McConnell and Ryan’s Ability to Stand Upright Without Spines by Andy Borowitz

I have trouble standing upright. I am not a metaphor for Paul Ryan or Mitch McConnell.

And Adam’s body is not a metaphor for Anna’s trauma or her “messes,” as she alludes to her shady past.

And besides, some of us carry both physical disabilities and psychological trauma: using one as a metaphor for the other erases our complex experience. My abuse — my childhood “crushed mini-van” to use Anna’s metaphor — was because of my disabilities.

Anna ends the piece by essentializing Adam as “Prince Charming in a Wheelchair,” listed along with “a yard full of trash” as the elements of her life.

When it’s convenient, poof! He’s disabled again.

And she was praised for this. She got into the New York Times for this. While I am called a liar about my childhood trauma because of my disabilities.

See the problem yet?

___

Anna messages me privately to ask who the agent is, and I spill the beans. Anna seems to know her way around the lit world, and she seems to genuinely care about my writing. I’m confused and overwhelmed. I don’t know what else to do.

She writes back:

Anna March: I had a feeling it was ____he’s great. He’s TOUGH but he’s great. I’m sure he’ll get back to you soon. I think telling other agents you are in conversation with him will open some doors for you but I’d talk to at least 3 to get a feel. REALLY. Have you read the interview with [blacked out] they did a roundtable. it’s insightful. I’d reach out to some of his clients (current and former) and ask about him. “I’m talk to [blacke dout] in early stages, just wanted to know if you had any insights you’d be willing to share, 1005 confidentially
But here is the thing.

She couldn’t know who the agent is. The agent told me that he normally doesn’t rep writing like mine, but he fell in love with my voice – had never seen anything like it – and he couldn’t help but ask if I had representation.

If he didn’t normally rep my kind of writing (and he really didn’t; I checked out his clients), how would Anna know?

I ask a trusted former grad school mentor instead. He says, “Your disabilities are not the agent’s business.” Run.

This sounds like good advice, and I take it.

___

 

Looking back almost four years later, I see what I didn’t then: Anna wanted to look connected. Maybe she was even fishing, but mostly, I think she wanted to look omniscient. So connected she knew everybody and everything.

 

___

2016.

I am boycotting the AWP conference in Los Angeles after they rejected every single disability panel.

Imagine you are me: Your “social justice” MFA alma mater is sponsoring a conference that systematically shut out disabled writers, and all your colleagues are gaslighting you about it.

“I don’t know how to make them accept your panel,” a friend says. As if all my anger were just sour grapes?

I had hoofed all over Salt Lake City to get this writer’s books into stores, and she couldn’t speak up to get my foot in the door at AWP: I won’t ever forget it.

“I don’t know what to do with that much anger,” another says.

Now imagine this:

Anna March announcement for her Hello Los Angeles AWP 2016 kickoff party

Your friends are all there, in Los Angeles, partying with a woman who exploited her boyfriend’s disability to get famous — LOOK AT ME, I LOVE A GUY IN A WHEELCHAIR —  and not a single one of them has spoken up for disability inclusion.

___

The year before — when all the disability panels got rejected — I filed a Department of Justice complaint against AWP, and I got a right to sue letter in January 2016:

January 28, 2016: U.S. Department of Justice Civil Rights Division Disability Rights Section – NYA 950 Pennsylvania Avenue N.W. Washington, DC 20530 Re: Associates of Writers and Writing Programs Dear Ms. Higgins: This is in response to the complaint that you filed with this office alleging a possible violation of the Americans with Disabilities Act (ADA). After carefully reviewing the information that you provided, we have decided not to take any further action on your complaint. Unfortunately, because the Section receives thousands of ADA complaints each year, we do not have the resources to resolve all of them. It is important to note that the Justice Department has made no determination regarding the merits of your complaint or whether it could be redressed under the ADA or another .statute. Moreover, our decision not to take further action does not affect your right to pursue your complaint in another manner. You may wish to contact an attorney or legal service provider to determine what remedies may be available. In addition, a number of other options are available to you, including consulting state or local authorities or disability rights groups. Enclosed is a list of such organizations serving your area. These listings come from various sources, and our office cannot guarantee that the listings are current and accurate. We suggest that if you contact any of these organizations, you let them know that you have received this letter from us, so that they will not forward your complaint to our office. The text of the ADA, the Department’s regulations, and many technical assistance publications are provided on our ADA Home Page at http:/ http://www.ada.gov. If you have specific questions about Title II or Ill of the ADA, or want copies of technical assistance publications sent to you, you may call the ADA Information Line at 800-514-0301 (voice) or 800-514-0383 (TTY). We regret that we are unable to further assist you in this matter. Enclosures (These are just lists of Utah disability organizations since I lived there at the time)

On Facebook, abled writers tell me I should have sued.

I say: With what money? Why can’t you protest and speak up? Why don’t you do the work, too?

They don’t. But they party with Anna March.

 

___

2017.

AWP is in D.C. I will be at NIH at the same time, lying in the MRI tube for hours right up the street from where all my friends are partying.

I get interviewed in ROAR and have a great experience with my interviewer, Ashley Perez.

Anna is good to me about the interview. I have no complaints.

But then Anna starts asking for writing. Message after message, even offering a column and payment.

Anna MarchSunday, July 30, 2017 at 8:27pm MDT i’d love it. Anna MarchSunday, July 30, 2017 at 8:27pm MDT we pay the second month after — meaning, june we pay aug 15, july we pay sept 15, etc. Anna MarchSunday, July 30, 2017 at 8:27pm MDT for more $ — 2x a month for $100? Anna MarchSunday, July 30, 2017 at 8:26pm MDT do you want to be writing for us more? Anna MarchTuesday, May 16, 2017 at 9:24pm MDT hi there — ok, when you have something, holler at me directly? (don’t submit through the regular channels, come to me, please? thanks! i’m glad to give you any kind of lift…………..i’m sorry things are, well, so hard. my ankle is meh. but ok. thank you for asking! my workload is hell. and so it goes. xoxoxo Karrie HigginsMonday, May 15, 2017 at 10:51pm MDT Hi Anna! I don’t at the moment, but I am working on some things. (Everything is in the dreaded “hot mess” stage-ha). Agggh so slow these days. Thank you so much for thinking of me! That actually kinda lifted me a bit and that’s no small thing. ❤️❤️How is your ankle? Anna MarchSunday, May 14, 2017 at 8:56pm MDT hi there — do you have any fiction you have any interest in publishing with roar? i have one spot available in our next 8 week block — and wanted to invite you…………thanks heaps for considering us. xo anna Anna MarchTuesday, January 10, 2017 at 10:51am MST karrie — shall we talk sometime next week? i’d love to get you to write a piece for roar at some point. thank you.

By the end of May, I know this is not a real offer. I’ve heard some things but kept quiet because more marginalized friends are afraid of what Anna might do.

Then, after an exchange about inaccessible retreats, she sends me this:

Anna MarchSaturday, August 12, 2017 at 8:23am MDT also — you know, i tiink, i grew up in deaf culture/disability rights (my grandfather came out of deaf culutre (he has his own character sign in the hall of fame at galludent, working thre to take the deaf census before it was galludet as we knwo it know — he was prouder of that then even of us grandkids, of whom he was very proud, mom and aunt worked in deaf culture, grandfather was big part of fighting for the rehab act of 1973 and then mom was a lobbyist for various things in the wake of the rehab act of 1973, including the ada which was written by my next door neighbor, tony. and 843 other things in my childhood and then i worked in college full time tutoring physically disabled kids and then of course later was with adam for many years, who is a paraplegic, blah blah. so i’m not a stranger to the world of disabilities, though of course i’m not expert, but i’ve been sick on and off the past couple years and people are horrible about my inconsistency as a result and it’s made me think, a lot, about disabled folks and that angle of it and the chronically ill. also, it’s made me dislike a lot of people. anyway — i’d LOVE IT if you’d write a piece about inability to be consistent and why and reaction to that. and if you do, i’ll maybe write a little intro to it or side bar or something? we’ve never done a sidebar, but seems like a good time to try. Anna MarchSaturday, August 12, 2017 at 8:16am MDT hi there -yeah, the “sue” thing was inane from her, i know. i love your blunt. how about this — when you want to write for us, reach out to me and we will work them in– “guest columnist” or “occasional columnist” or whatever. in fact, maybe your first piece could be about that — anna asked me to do this and here’s reality, kids.

 

She is cloaking herself in disability as cover for her cons:

so i’m not a stranger to the world of disabilities, though of course i’m not expert, but i’ve been sick on and off the past couple years and people are horrible about my inconsistency as a result and it’s made me think, a lot, about disabled folks and that angle of it and the chronically ill. also, it’s made me dislike a lot of people.

The thing is, chronically ill people do feel awful about our inconsistency and lack of productivity. We hate backing out of events & letting down colleagues and friends. I want to be sympathetic, except I know too much about her now, and I sense a pre-emptive excuse.

I sense she wants to use me, get me on her side using disability. Look how she lays down her Gallaudet street cred (is it even true?) and even mentions Adam again — by then, long since broken up. Maybe she thinks a white disabled woman coming to her defense will drown out allegations from women of color. I can’t know what she’s thinking, but something feels wrong.

The worst part? In the wake of the LA Times expose, writers are tweeting “red flags” for scammers, including — you guessed it — someone talking too much about their chronic illness. Because Anna did it.

Chronically ill people already face stigma when we talk about our illnesses. Now we will look like cons. Because Anna stole that space from us–just like she stole that space in Modern Love for a physically disabled writer to tell a love story.

 

___

 

2018.

I have two panels at AWP in Tampa, but I can’t fly because of blood clots. AWP says Skype will net “bad reviews.” My panel lead wants me to stay quiet for fear of retribution. (Oh, how many of us stay quiet for fear of retribution.) I back out.

When I finally leak AWP’s email to DisDeafUprising on Twitter, abled writers don’t care. Again.

One able-bodied writer calls it “shenanigans,” as if violating my civil rights were just like dropping a water balloon or shooting a spitwad.

But then AWP Executive Director David Fenza gets canned, and I feel hope. 

Conference Director Christian Teresi resigns amid allegations of discrimination,  bullying and retaliation against women employees, and I feel hope. 

I take to Twitter, eager to see writers who have gaslighted me for years finally getting it. They don’t.

Nobody cares.

In June, The New York Times resurrects Anna March’s Modern Love story and hires Mandy Moore of “This is Us” fame to read it.

Anna March says, “I want people to think and understand about what they’re saying about ability and disability when they say that someone who’s able-bodied is somehow doing something noble by dating someone with a disability.”

But that is exactly what she banked her entire career on.

By July, the LA Times unmasks Anna March.

By August, Anna March has a panel for the 2019 AWP.

The topic? Endings in End Times: How to craft final notes that imply light and dark, open and closed, emotional and intellectual complexity? We discuss struggles and strategies for endings that feel satisfying for readers, and yet true to the work, the moment, ourselves. 

Meanwhile, there is a panel that lists disability along with murder and natural disasters as “traumas.” My backbone is not your forest fire, I keep repeating to myself. My backbone is not your forest fire.

I want to be true to this moment. How does the story end? Will you finally include disabled writers, or are you always going to party with the people who use us?

 

two years later: I am trying to get as honest as I can

CW: CSA, bodies, medical details, autopsy

Two years ago today, I received two life-changing emails within minutes of each other:

  1. The Poweshiek County Sheriff had finally — after three years of legal battles — surrendered a CD of my brother Greg’s taped police phone call to my attorney.
  2. The National Institutes of Health accepted me into the syringomyelia study.

The Democratic National Convention was on television. Trump was months from taking the presidency.

These things are connected.

If you’ve read my work, you know I got one phrase from my brother’s taped phone call permanently inked into my left forearm.

I am trying to get as honest as I can.

I got it in Deseret Alphabet: the alphabet of the Mormons, of Utah, of testimony. When I got that tattoo, all I had was the police transcript of that phone call–no audio. Deseret Alphabet was my way of making my brother speak his confession.

Speak it from my skin, through my skin: living vellum.

Karrie lying on the Salt Flats with her left arm extended to reveal the tattoo that reads, “I am trying to get as honest as I can” in Deseret Alphabet. Her head is turned to the right, and her hair is covering her face.

As I wrote in 2015:

Deseret Alphabet is phonetic. Translating my brother’s words into it felt like cosmic CPR, giving him the breath of life again.

Translate: verb
1. express the sense of (words or text) in another language.
2. move from one place or condition to another.

Deseret Alphabet is not a foreign language; it is English represented by unfamiliar symbols. I was interested in definition #2: move from one condition to another. I wanted to make the transcript of his incriminating telephone call speak. I wanted to turn it into testimony.

Even though I am not Mormon, I also needed the language to be of this place, Utah, because I truly believe I had to come here, I needed to come here, that it was some kind of destiny. This is the place that set me free.

I almost became Mormon, like one of my brothers, but instead, I forged my own path, my own relationship to the faith.

I am trying to get as honest as I can felt like something I could work with, something I could use to save my brother’s soul.

___

Before I got that tattoo, I wrote I am trying to be as honest as I can on a scroll in bone black ink so thick it felt like ancient vertebrae sticking up from a burial site: a skeleton for my brother who lost his in the cremation retort.

Bone black ink I made from my tooth: Eve donating a bone to her brother.

I went to the Salt Flats — salt crystals like fossils — and re-enacted Ezekiel in the Valley of the Dry Bones.

So I prophesied as I was commanded: and as I prophesied, there was a noise, and behold a shaking, and the bones came together, bone to his bone.

And when I beheld, lo, the sinews and the flesh came up upon them, and the skin covered them above: but there was no breath in them.

 

Karrie on the Bonneville Salt Flats holding up an unrolled scroll with I am trying to get as honest as I can written on it repeatedly in Deseret Alphabet.

 

There, I ate the scroll, ate his words. Let the word become flesh. Let my brother be resurrected.

But it wasn’t enough.

___

February 2015, forensic anthropology facility:

I am standing in a clearing surrounded by bodies under chicken wire cages, like the aftermath of a mass suicide. It’s a body farm, where forensic anthropologists examine decomposing bodies in hopes of gleaning knowledge to solve murders and identify victims. I came to study forensic art, specifically sculpting on skulls to reconstruct soft tissues that have long since decayed. I have no hope of working as a police artist; I want to understand resurrection as a physical process, something a human being can do, even when God refuses. I want to be my own Ezekiel–put the flesh back on the bones.

I step backward, almost stumble over one of the cages, and steady myself, leaning so close to the chicken wire I can poke a finger through and swab the buccal edge of a molar. The dead man looks just like my brother.

“This one still has hair,” a student says, peering over my shoulder. Everyone gathers around us. For a forensic artist, it’s an exciting find, the kind of detail that could identify a John or Jane Doe.

The dead man’s neck twists away from me, his jaw gaping, as if screaming from the torment of worms. The cage is the only thing between us. It has always been the only thing between us. My brother could never show me who he really was because of the specter of a cage; I could never see who he really was for the same reason. I never wanted him in prison.

I touch my left hand to my right shoulder, where my Salt Lake Temple doorknob tattoo just finished healing. In a couple of days, I get a rose on the opposite shoulder, just like my brother’s. I’m not getting it in memory of him, but to steal the memory of him getting it. I’ve been stealing his memories: talking to his childhood and high school friends, searching for photos, watching vintage Pontiac GTO ads, mastering the Parachute Landing Fall.

Memories have epigenetic mechanisms, meaning: Every time I steal one of my brother’s memories, I make myself more related to him, genetically.

“We speculate,” wrote Jeremy Jay and David Sweatt in Nature Neuroscience, “that the new understanding of the role of neuro-epigenetic molecular mechanisms in memory formation can answer the long-standing question in neuroscience of why neurons can’t divide.” Neurons, “can’t have their cake and eat it, too.” They can either use methylation to preserve a singular memory, or they can use it to preserve cell-wide identity–a lung cell is not a kidney cell because methylation blots out different genes–but they cannot use it for both.

I am co-opting the machinery of memory for the purpose of reproduction. I am giving birth to my brother from my brain, like Athena popping out of Zeus’ skull. I am letting neurons have their cake and eat it, too.

If I donate my body here, I think, my face up close to the chicken wire cage, with all my brother’s epigenetic memories intact, with my rose tattoo intact, I could take my brother’s place in the cage. I could serve his time, save his soul. Maybe even fool God. 

___

 

And here is how word becomes flesh: I made myself a body like my brother’s. The holes in my spinal cord, my syringomyelia, were never discovered until I got those tattoos. My brother had a spine like this: rods of titanium to hold it together after his vertebrae got crushed.

image from Greg’s VA records indicating severe spinal injury at the same location as my syrinx He had fusion from C5-6-7 and T1

When I saw the holes on my MRI, same vertebrae:

MRI image showing a silvery cavity in my cervical spinal cord.

I did not think: this could destroy me. I thought: this could save him. I was forging my body into his. The resurrection spell was working.

 

___

 

Three years ago, I wrote the Linn County Medical Examiner to ask if my brother’s tissue & blood samples had been preserved. I wanted his genome and epigenome sequenced. I knew I couldn’t afford it; I figured I would find a way somehow, someday. I asked if there were photographs. It was before I got the crime scene photos and saw the body for myself. I needed to see his body.

I asked about the remote midline scar referenced in the autopsy report — a scar I now know came from hernia repair surgery.

Most of all, I wanted to know if the Medical Examiner knew this:

Greg Higgins arraignment for sexual abuse in the 2nd degree of a child under 12.

and this, in a message from his ex-wife:

“I can tell you .. that on two different occasions I had found Greg in the same condition, in the same position. Once in our family room. And the other time in our hot tub building outdoors. That time I had to call an ambulance because he was unresponsive. It was in the wintertime, and when they finally got him on the gurney & outside where the air was cold, he started choking, sat straight up & said, “What’s going on?” He refused to let them take him to the hospital & had to sign a statement to that effect. I told him the next day I was going to call his doctor about the medications.

And (this is the first time he had ever “threatened” me) he shook his fist in my face and said “Don’t you dare. If you do, she’ll stop giving me the pain medications.”

“I know what I’m doing.”

and if it would or could change this:

autopsy report stating the morphine, methadone, diazapem, desmethyldiazapem, and gababpentin in my brother’s blood were not at toxic levels, but his coronary artery disease is mild and may not be clinically relevant. No cause of death.

Would you have ruled it suicide? 

I hated that inkblot test of an autopsy finding, how you could see whatever you wanted to see, how it enabled the family lies. A heart attack, I was told, when I got the call in 2008, a couple days after his body was found. I never believed it.

The Medical Examiner wrote back:

Dear Ms. Higgins, I am in receipt of your letter regarding your brother Gregory Higgins. In response to your letter: 1. The information regarding sexual abuse would not change the findings of the autopsy 2. No, again that knowledge wouldn’t have affected the outcome of the autopsy 3. No photographs were taken 4. The tissues have been destroyed after 5 years 5. The remote midline scar I cannot tell you what this was as described. The autopsy findings were consistent with a death that occurred over a short period of time. If it were an OD then his lungs would have been congested and heavy and the tox screen would have indicated that. He most likely had an arrhythmia. His age puts him at risk for that. I hope this helps you. Sincerely, —— Chief Medical Examiner, Linn County

Arrhythmia: an abnormal electrical current surging through the switch-relay of the heart, making it thump thump thump off beat. I read the autopsy report again, my finger tracing down the center of the medical history like a scalpel, hunting for arrhythmia, but I never found it. You can’t diagnose arrhythmia on a dead  heart. The Medical Examiner was asking me to take a leap of faith, to believe it was sheer, dumb luck that my brother died three days before standing in court as a jury heard him say on tape to his final victim:

“I want you to get your head squared on straight, but at the same time, I’ll be darned if I’m gonna be humiliated by some court of law.”

The Medical Examiner was asking me to believe that God granted my brother a writ of extraordinary relief. He was asking me to believe in a postmortem diagnosis without a body.

But wasn’t that the same thing I was asking of him?

It took three readings of the Medical Examiner’s email to see it, how he spoke of my brother in the present tense—his age puts him at risk for that—as if my brother were perched on an examination table, still alive, his heart still thump thump thumping.

There is another kind of autopsy, one that does not require a body, only tissue extracted from it: a molecular autopsy, capable of diagnosing genetic susceptibility to arrhythmias in cases of sudden deaths, particularly in the young.

Molecular autopsy saves the survivors: Family can seek testing and pre-emptive treatment.

Karrie sits on a couch covered in blue damask taffeta, wearing a long, flowing skirt printed with her C-Spine MRI. She is wearing a bubble gum pink wig and holds a pink stethoscope to her heart, listening to her own heartbeat. Next to her on the couch sits a bubble gum pink suitcase, unopened.

I think I think I think my brother died so that I may live.

But it was too late: All tissues have been destroyed after 5 years.

My tissues are still here, I thought. I can take my brother’s place on the autopsy table. 

I tried to get a genetic test, but I couldn’t afford it. University of Utah owned the patent on the genes.

Utah.

The land of Deseret Alphabet kept the secrets of my heart, my brother’s heart.

But the VA didn’t. When my brother signed up for the Army, he signed his body over to Uncle Sam.

And Uncle Sam signed his medical records over to me:

EKG printout showing normal results for my brother on March 22, 2007

 

No arrhythmia.

I signed my body over to Uncle Sam, too: National Institutes of Health, a study of my syringomyelia. My term: five years. My marching orders: fly to Bethesda to report for duty on the anniversary of my brother’s autopsy: I was going to get down down down in the same position my brother’s body was found – the fetal position, the police called it – and let them open up the secrets of my neural tube with a needle, like an embryo in a petri dish.

A spinal tap.

I started to think of it as a living autopsy: me taking my brother’s place on the autopsy table.

Karrie in the fetal position, face down on a blue taffeta couch, with long, bubble-gum pink hair flowing over the cushions. She is wearing a long, flowing skirt printed with her c-spine MRI. Next to her head on the couch is a pink suitcase.

On the day I was scheduled to fly over Cedar Rapids, the waters of the Cedar River were cresting, predicted to be as as high as the 500-year-flood in 2008. Waters rising, just like they were around my brother as his trial date neared.

houseboats crashed into a railroad bridge across the Cedar River in 2008, photo by Cedar Rapids Gazette

In 2008, the same week the river crested and houseboats, untethered, slammed into the railroad bridge, the state filed pecuniary damages in my brother’s case: psychiatric bills for his victim.

My brother saw the river rising around him, and he went down down down

into fetal position floating in those fetid waters like a fetus in the amniotic sea.

After the heart monitor goes _____________________________________________________________________________, and doctors declare you dead, hundreds of genes flicker on like lightbulbs after an electrical blackout, delivering messenger RNA commands for cells to be fruitful, make proteins. Some genes reach peak activity days after a corpse is already cold.

Genes for inflammation, genes for stress, genes for immunity. The body thinks death is an infection it can beat.

Cancer genes go on a rampage–perhaps the reason transplanted livers so often succumb to tumors. What was believed to be recipient rejection might be an organ that still thinks it is dead.

Genes for embryonic development are reborn: the same code that wrote our bodies in the womb, long blotted out by the black ink of CH3–methylation–is revealed again, like original text on a palimpsest.

The DNA double helix unravels, opens our genes, unmasks our original blueprint. We are born again.

A possible reason for these increased abundances is that the postmortem physiological conditions resemble those of earlier developmental stages.

–Tracing the dynamics of gene transcripts after organismal death, Open Biology

the house Greg died in, Google map street view:

two story white house with a picket fence around the yard and a young child pushing a stroller in front of it at the far end of the right boundary of the yard

The first time I saw it, I thought they caught his death on camera. The child pushing his own carriage, at the edge of the lawn, front wheels just past the picket fence. They caught my brother’s ghost on camera.

But Google took that photo in 2012, not 2008. That child is alive, somewhere, ten years old maybe. That child is alive.

Death made my brother an innocent again.

police report for my brother’s death investigation, listing him as a victim

And death will uncoil my DNA, too, release all those forged memories, written in the black ink of methylation. God always wins. 

___

 

NIH never did that lumbar puncture, and they delayed my first visit to November: the anniversary of my brother’s graduation from Jump School. Honors, top of his class, Iron Mike award. “The best of the best,” his Airborne buddy called him.

The morning after Trump won, I was lying in an MRI machine at the NIH Clinical Center in Bethesda, hypnotized by the clang clang clang, like the drumbeats when I marched in the streets my last time in DC. Two weeks after 9-11, anti-war protest, surrounded by riot police in Edward R. Murrow park.

I was fast back then, not like now with my walking cane. My group saw the opportunity, an unlocked door in a building on the perimeter, and we leapt through it like paratroopers out the airplane hatch. Cops chased us through the corridors, but we escaped to the Metro, to freedom.

My brother was alive then. He would have hated me protesting war. Airborne motto: Death From Above. And yet, he stopped abusing that other girl in September 2001.

[Did he stop abusing her because of 9-11? The shock of the war front coming home?]

___

MRI nightmare: President Trump shoving me in the MRI tube like a dead girl in a morgue drawer.

Greg’s best friend and Airborne buddy when I shared I was voting Hillary:

my old Facebook profile from when I “trumped myself” with the words Major Loser, Zero Credibility. My brother’s Airborne buddy commented, “Greg would kick your ass. Like Hillary has credibility. Everything Hillary has done has been a disaster and her husband is no better.”

___

When the CD arrived from the attorney and I played it for the first time, I waited for my tattoo line. I wanted to hear my brother be redeemed.

But what he said and how he said it are two different things.

“Honey, I did NOT … come, oh that’s crazy. Oh, my God, oh my God, I’m just sick. I can’t believe this shit. Oh my God. This is just, this is just bizarre. I just can’t believe this. I did not touch you sexually. I, if, if, you took that way, way wrong, my God. My dear, you, I’m trying to get as honest as I can with you, I mean, that’s way wrong. It’s just, tickling you or wrastling you or grabbing you. If that, if that’s what you thought I was doing, then that was just, that’s not right, I mean, I, that was not my intention whatsoever, my God.”

It’s a throwaway line, a nothing line. He rushes over it like it doesn’t matter at all. A lie.

Under that cage on the body farm, I will not be confessing; I will be manipulating, just like him.

And yet, I am translating those words to a new condition: speaking his lie every time a forensic anthropologist examines my decaying body for clues.

Maybe something from my body will solve a crime: my brother and I will get our day in court after all. That’s a kind of honesty.

I am trying to get as honest as I can with you, God.

___

Two weeks ago, I flew home from NIH again. July 12th: my brother’s birthday.  It was not lost on me: I spent my brother’s birthday in an airplane, of all things.

Front page, Cedar Rapids Gazette, his last birthday alive on Earth:

July 12, 2008 front page of the Cedar Rapids Gazette with photos of May’s Island flooded & after the water retreated and the headline: Tide of Change

 

Back then, when the floodwaters retreated, city dump Mt. Trashmore, capped since 2006, was unsealed to entomb 430,000 tons of debris, including one soggy manila file from the basement of the Linn County Courthouse dated January 30, 1979, bearing my brother’s name and disposition: GUILTY. Misdemeanor Conviction, $100 fine.

Gazette newspaper clipping of Greg’s arrest for obscene phone calls. Cedar Rapids police Monday Night arrested Gregory D. Higgins of 96 Boca Chica, Hiawatha, on a charge of harassment. The charge was in connection with a northeast side woman’s reports that she received obscene phone calls since September. Higgins posted bond and was released.

His first sex crime. His genesis story.

Six years too late, I called the Linn County Clerk’s office to get the record. ”We lost a lot of records in the flood,” they said.

“And a lot of them we didn’t even try to recover.”

Floods –unlike tattoos — really do redeem.

 

 

 

Skeleton Key

vertebrae made of skeleton keys, a spinal cord, and a Master Lock brain, drawn in my homemade iron gall ink on a rich golden parchment paper

CW: abuse, CSA

My father is dying.

Every week, a new emergency: a stroke, pneumonia, sepsis, C. Diff. His lungs, filled with fluid, crackle through the stethoscope bell. His muscles are wasting. He falls a lot, shreds his skin clean down to bone. When my mother escapes the apartment to run errands, he speed-dials my sister, sometimes crying, sometimes ranting about our half-brother Scott, accusing him of getting a little too close to our mom.

My sister forwards me voicemails. We are building a case for Power of Attorney.

“Scott blew it, as far as I’m concerned,” Dad says in one, his speech slurred like all the times he drunk-dialed me after I went no contact in the mid 90s.

“He can go to hell from now on. I want nothing to do with him, ever … I’ll talk to an attorney. Well, I already–I already talked to one. Got the phone number, and he said, things can be done to expose these people … It’s important I talk to you. I sure wish to talk to you, sweetie. Please. Please call dad. Please, honey.”

click

“Please call. Please. This is your father. I need to talk to you. You and your mother mean the world to me. I love you. Please.”

I froze the first time I played one.

He sounds like my half-brother Greg on the taped police phone call, the one that got him arrested for sexual abuse:

Transcript: man, crying, “I don’t want your mom to hate me. This is my life. This is all I have.”

Five years after Greg’s body was found crouched face-to-carpet in front of his flickering television, I ran a postmortem criminal background check and discovered he died facing trial for Sexual Abuse in the 2nd Degree of a child under twelve: same crime he perpetrated against my sister & me.

I texted my mother.

How old was the victim? She replied.

I texted my sister.

How old was the victim? She replied.

What they meant was: Do we have corroboration?

We were conspiring in time-travel case law: If Greg touched a little girl in 2001, he did it in 1986, too. Future bad acts.

I scanned every page of the court case and emailed a copy to my mother.

“I got called a liar, too,” she said.

She meant by my father, after my sister had come forward in 1989 and my mother kicked Greg out of our lives. Dad always chose Greg.

Greg, his Airborne Paratrooper golden child. Greg, his first and favorite son from his first family, with his first wife.

I wanted to mail my father Greg’s case, certified with return receipt. I wanted that green postal service postcard with his signature on one side & my name and address on the other, like he was signing for me, signing you are mine.

green United States Postal Service certified mail postcard receipt

But I did not want to reconnect.

The last image I saw of my father for over twenty years: his half-toothless grin reflected in the rearview mirror of his car as he careened, drunk, down the driveway, laughing after I had screamed, Greg did it to me, too.

___

After my father got sepsis, when nobody thought he would make it through the night, my mother said, “Do you want to talk to him?”

I surprised myself and said yes.

I don’t know if he knew who I was. He asked about my nephew’s guitar and whether he would come play it. Maybe he thought I was my sister. Maybe he thought I was my nephew.

“I love you,” I said.

“I love you, too,” he said.

I was willing to let it all go: the black eyes and bruises he left on me, that time I had a skull fracture and who knows what the ER docs really thought:

x-ray imaging report noting a possible hairline fracture in my zygomatic arch, which was later confirmed

They declared a seizure did it, and maybe it did, but fists landed there, too, and it wasn’t always clear which injuries were abuse and which were my disabilities.

[Didn’t they count on not knowing for sure? Didn’t my father? Didn’t I?]

How he drove drunk with me in the backseat of the old Matador, swerving over the double yellow lines while my body got tossed around on the bubbled plastic seat liners. I used to pretend they were bubble wrap, that they would protect me if we crashed.

Karrie as a baby with a wet drooping diaper, looking a little distressed, and her father standing behind her, leaning on the brown Matador trunk with one hand and holding a Pabst Blue Ribbon beer in the other

All the times he peeled up my long patchwork skirts to reveal my panties and said, “I bet the boys like that.”

Or said I was draining the family dry because of my medical bills, that I never should have been born.

I was willing to let it all go. He sounded so frail, so weak. He couldn’t hurt me anymore.

___

But he did make it through the night.

And the next night.

And the next.

And a hospital social worker said, “He needs round-the-clock nursing home care.”

“You have to do it,” Scott told my mother, and my sister and I agreed. Our mother is in her seventies with health problems of her own. She can’t help my father up when he falls. She can’t help him in the bath. She can’t lift him into the car.

Finally, she got the paperwork for a Medicaid application. To meet the income caps, she will sacrifice my father’s social security. She will sacrifice his pension. Without that income, she will lose the apartment. Her home. Again.

Years ago, she sold the house after my father left her for his high school sweetheart, the one he’d been seeing since the mid-90s and maybe longer. It went for $75,000, furniture included, and she packed up a truck and moved to a cramped apartment across town, divorce papers drawn and ready to sign.

But they never signed the divorce papers. Instead, he came back, and they signed a lease. Now, they’re bound by poverty: no money to live apart.

 

___

My father gets wind of the Medicaid application, threatens my mother. “If you put me in a nursing home, I will divorce you.”

My sister and I laugh via text. Can you fucking believe him? 

___

Voicemail to my sister:

“You do something like this” — he means the nursing home — “This is not helping anything. I’ve never hurt my wife–your mom–physically, but mentally I guess I did for … I don’t know why now. But I thought I would have time to make it up. I didn’t want that stroke, either. And this other thing that I caught”–he means the C. Diff — “they’ll get rid of it. It will clear. I need to talk to you honey. All right, sweetheart, I hope you take this, call me back.”

___

 

August 2011, my first time visiting home since 2000. My sister and I pose in front of our favorite childhood roller rink:

my sister and me in front of a white brick building with an old, decaying sign that reads SUPER SKATE in all caps black lettering. I am laughing so hard I am almost doubled over and my sister is looking at the wall behind her.
my sister and me in front of a white brick building with an old, decaying sign that reads SUPER SKATE in all caps black lettering. We each raise one arm in a victory pose.

What you don’t see: my father’s van speeding past, me running to my mother (I could still run then) in a panic. “Was that dad? Where is he going?”

My mother, admitting she invited him to my goodbye breakfast before I hit the road back home to Utah.

“I want one last picture of us all together,” she says.

I make her call him, tell him no. We sit in the Super Skate parking lot, staring out the windshield, Mom’s knuckles white on the steering wheel, until his van passes the opposite direction.

I wonder whether she wants the picture or dad does.

Later, he yells at my mother. “What would Karrie’s Grandma think if she knew my own daughter refused to see me?”

My mother yells back. “What would she think about why we don’t have a house?”

 

___

The night of my father’s stroke, I look at the Super Skate photos. “I should have let him come to breakfast,” I tell my husband. “I should have let mom get her photo.”

I was willing to let it all go.

___

And then we found out about the secret money, inherited from his brother in 2005, not long after the house got sold:

probate case summary for Luverne Barthe, with my father names as a brother & beneficiary

It wasn’t a normal inheritance. My uncle’s guardian — a half sister — invested his money while he was locked up in the Veteran’s Home, let it grow. She created their own birthright.

My aunt leaked the secret without knowing it was a secret. My mother called her about the nursing home and Medicaid application, and my aunt said, “What about the money from our brother?”

Every sibling got three disbursements, enough to buy a house in Cedar Rapids.

ledger of transactions from Luverne’s probate case showing three disbursements to Cliff Higgins, totaling $113,692.55

A house.

My mother lives on the edge: barely a few bucks after rent, Medicare supplemental insurance, prescription co-pays, her phone bill. “If we still had the house, we’d be comfortable,” she says. I know she regrets selling it. Back then, it seemed like her only option: get the hell out of that place of bad memories, get a little cash, try to pick up the pieces.

She needs a dental implant. She needs a new car. My father totaled her van three years ago and they never had the money to replace it.

The van. Oh god, the van. He bought her that van, used, when they got back together. He used to show it off all the time like an engagement ring.

“What do you bet he plunged some of that money into the van?” I text my sister.

“And then he wrecked it,” she texts back.

my dad’s ticket with $195 fine for Failure to Maintain Control

Of course he wrecked it.

___

Here we go again: I email my mother the probate case.

I tell her, “There’s the proof in black & white. He got that money.”

“I will never understand why he did it,” my mother says.

Because he never loved us, I want to say, but I don’t.

__

Ever since I left home, I have had trouble finding a home. I have lived all over: Iowa City, Portland, Salt Lake City, Boulder.

Of all the cities I have ever lived, I loved Salt Lake City the most because of the Mormons. I almost became a Mormon because I thought they know how to fix this.

The first time I visited Temple Square, I broke down in the visitor center in front of a row of miniature houses with television screens in the windows. Families can be together forever, the videos promised.

A pair of sister missionaries approached. I don’t think I understood yet that they were missionaries, even with the name tags. They directed me to the family history computers. I sat down, typed in Greg’s name, and it returned his social security number from the Social Security Death Index.

I could run a background check, I thought. I could learn things about him he never told me in life.

“Write it down,” one of the sister missionaries said, sliding a scrap paper toward me.

I didn’t know I was dialed into Granite Mountain Records Vault.

In 1960, the LDS Church blasted into a cliff in Little Cottonwood Canyon, drilling 700-foot long tunnels 675 feet below the surface and reinforcing them with concrete and steel. Ten-foot-tall steel cabinets line the corridors, relentless drawers like cells in a honeycomb, a card catalog of every human name the Mormons have harvested so far. Volunteers around the globe photograph birth certificates, baptism records, obituaries, marriage certificates — and more — on microfilm, delivering images to the hive, where archivists preserve them in perfect 55-degree temperatures and 35 percent humidity. Entrance tunnels lend the only hint of unnatural activity, like a secret alien laboratory or B-movie beehive.

Nobody except authorized personnel gets past the 14-ton Mosler doors — built to withstand nuclear apocalypse. Once a document goes in, it never comes out. The archive shuns tours and forbids researchers access to the originals. The security of the records trumps all else: The simple swishing of pant legs kicks up enough fugitive denim dust to obliterate a record.

Not even the Salt Lake City temple is so secure. When the Wasatch Fault ruptures, the earthquake will liquefy the clay and sand beneath the temple. It will fall. The LDS world headquarters will fall. The holy city of the saints will crumble, but the vault will live on, cocooned like a time capsule, impervious as an escape pod to the problems of man.

photo: LDS Church

These are the records that allow Mormons to baptize the dead, save the souls of their ancestors, and seal families together for all eternity.

In 1836, the Prophet Elijah appeared to Joseph Smith in the Kirtland temple. He said that the hearts of the children must turn toward the fathers. He meant the ancestors. And so Mormons seal up the records, and seal families. Nobody ever goes astray.

Families can be together forever if the hearts of children turn toward the fathers.

___

In 2008, when Greg died, I got written out of the obituary. One day later, a corrected obit appeared:

excerpts from the two obituaries side by side with the list of surviving family; the first one does not include Karrie, while the second one does

I got written back into the family line, but only kind of. Carrie with a C, not a K. How does your family not know how to spell your name? 

I never knew which family member called in the correction until I found out Scott is a Mormon–converted via shotgun if he wanted to marry the love of his life. But even still: converted.

Scott, the peacemaker. Scott, the negotiator of treaties when our family was at war. Scott, the one who will never erase you from the family line.

How do you not know your own brother is Mormon? 

Scott broke me into Granite Mountain. Scott wanted us to be together forever.

Is this family?

___

“If Dad spent that money on anyone, he spent it on Greg,” my sister says, but I don’t know.

June 1977, Army infirmary:

scan from Greg’s Army infirmary chart, dated June 21, 1977 with the note: Parents killed in car accident Apr 77

“Parents killed in car accident April 1977.” But our father is still alive, and Greg’s mother didn’t die until 2004.

Greg dreamed our father dead. 

Like brother like sister.

February 8 1990, two days after 15 candles on my birthday cake and four months until I tried to commit suicide:

Cedar Rapids Gazette headline: 23 vehicles pile up in fog; 18-year-old dies; police can’t say if ADM is a factor

 

Cedar Rapids Gazette newspaper photo of a car slid under the back end of a school bus, the top of the car crushed. Police stand to the side.

“It’s hard to tell if it’s the fog, but it was different there,” one of the drivers said. He meant on Highway 30 near ADM Corn Sweeteners, same road my father drove every day to work maintenance at the ethanol plant.

One minute: clear skies. The next: fog so thick a school bus driver slowed his bus to a creep. Behind it: 17-year-old Lynn Jones, “the best of the best,” the principal of Prairie High School called him, an Eagle Scout, a swing choir boy, a “quiet leader.” He slammed the brakes too late, slid right under the bus.

The ethanol plant is eating cars. 

January 22, 1988:

Cedar Rapids Gazette newspaper photo of a car crashed into a semi truck with the headline “Steam cloud blamed in fatal crash”

Cedar Rapids Gazette: Friday’s dense steam cloud provided drivers with a terrifying few seconds of driving. The highway simply disappeared.

Maury Burr of the Iowa Department of Transportation: “You drive into them and it’s lights out.”

February 2, 1988:

Cedar Rapids Gazette newspaper photo of person on a stretcher and fire & police officers after an accident. Headline reads: Steam cloud may force road closings. Zero visibility near ADM blamed for second accident

Sometimes, I imagined Dad’s pickup disappearing into the fog on Highway 30, too. Father killed in a car accident, 1990.

__

After I ran that postmortem background check, I found Greg’s widow on Facebook. I didn’t know if she believed Greg or his victim, but I took a gamble. I wrote, I am Greg’s youngest sister, and he did it to me, too. You are not alone.

We talked on the phone. She said, “Your dad used to come into our home and insult Greg’s mother.”

“I don’t know how to tell you this about your dad,” she said., “But —

dotted notepad paper with “He had a girlfriend in Strawberry Point” written in my handwriting and traced over multiple times

I wrote down the words, traced them over and over as she talked. He had a girlfriend in Strawberry Point. 

___

We knew about the girlfriend. We always knew.

Eight years old: I answer the plastic Garfield phone, tell the strange woman asking for my father that he isn’t home and “May I ask who is calling?”

“This is his wife,” she says, in a menthol voice.

“But you’re not Mom. Mom is his wife.”

___

 

In my medical records: my father’s social security number. I could run a background check. Find out things he never told me. 

 

___

Mom finds a nursing home bed for Dad. “We can’t put him in the nicer one because they want a $3,000 deposit,” she says.

I research the cheaper nursing home, the one for poor people:

screen grab of ratings for a nursing home: poor ratings for health inspects, staffing, & medical care quality measures; fines of $8698 in the past two years

“We’ll have to be vigilant about abuse,” my sister says.

I picture my dad’s red catheter tubes curled on a shelf in the bathroom when I was a kid. He’s had to use them all these years because his bladder is too elastic, too stretched out, to squeeze out urine. I get so sad for him I hurt there, like a UTI. It’s where I always hurt when I think about him too much.

He did it to himself. He could have used his secret money. 

It doesn’t make it any better. I am relieved when he does not go.

“We can’t put him in a nursing home against his will,” the doctors say.

They are going to leave that to his children. Pursue Power of Attorney, they advise us. It’s the only way. 

___

 

Excerpt from a social worker report during one of my extended hospital stays, St. Luke’s Hospital, 1990:

Mr. Higgins has a lot of problems from his childhood because he is bitter for having to work at such a young age. His siblings got better treatment because the family situation did improve. Mr Clifford joined the Navy and received his high school diploma during his military time.

When I was 13 or 14, I got a job detasseling corn. They recruited us at school, handing out the applications, and luring us in with the promise of good money we could spend however we wanted. We didn’t even have to get a ride. Buses would pick us up and transport us to the fields.

My father tried to stop me: No daughter of mine will get dirty in the corn fields.

I did it, anyway. Spent the money on my own school clothes and supplies. I thought if I bought them myself, he couldn’t yell at me anymore for costing him money.

That autumn, the falls started. The paresthesia. The seizures. Joint pain — there since childhood — intensified. I saw rheumatologists, orthopedists, neurologists. They tested me for arthritis, lupus, lumbar injuries, epilepsy, and Lyme.

Diagnosis: migraines and epilepsy, but it didn’t explain the pain or how my knees, shoulders, ankles, elbows and fingers slipped out of joint.

My father latched onto Lyme and refused to let go, even when blood tests came back negative:

Medical record scan: Father was extremely irritable and defensive. In one family therapy session we had during her hospitalization, father expressed his belief that all of Karrie’s symptoms were due to Lyme disease and the medical community had simply failed to recognize this.

The newspapers all that year:

newspaper headline: Entire Family Fights Lyme Disease

“A tick must have got her when she out there detasseling,” my father said. He found a way to blame that job, to blame me.

But I never got bit by a tick.

“Your medical bills are draining us dry,” he said. “I wish you were never born.”

No daughter of mine will get dirty in the corn fields. 

___

 

But it wasn’t just that job. It was any job.

Kool Moo ice cream stand, Cedar Rapids, 1992: My father skids into the parking lot, marches up to the counter reeking of Pabst Blue Ribbon, and demands I clock out and come with him. “I am not coming back for you later,” he says. I cannot drive because of my epilepsy, and he knows the buses do not come to our house in Hiawatha.

“Go ahead,” my boss says, his eyes fixed on my father’s, nodding like he might to a gunmen demanding cash out of the register.

Mr. Higgins has a lot of problems from his childhood because he is bitter for having to work at such a young age.

I see it now, how my father thought he was breaking some kind of cycle. He was never a child, so he would see to it I was always one.

I wish you were never born. 

___

December 2017:

drawing in my homemade ink on parchment paper: side view of a backbone with vertebrae made of tiny, golden teeth outlined in black iron gall. The spinal cord, drawn in gold, disappears into the root of a giant, gold-capped molar that serves as the brain

At my epileptologist’s office, we discuss the possibility I was never born.

Periventricular heterotopia: newborn baby neurons never migrated from their birthplace inside the ventricles to create the cerebral cortex during fetal development. Instead, they clung to the shore of their primordial sea inside the neural tube, anchored for life in the swirling waters of cerebrospinal fluid.

I might be a fetus and adult at the same time.

Four years ago, I got diagnosed with a neural tube birth defect called Chiari Malformation, which means: my skull is too small for my brain. My cerebellum crowns through the foramen magnum like a baby through the cervix. My brain is trying to be born.

On MRI films, my neural tube is a scroll without a seal: my spinal cord slit right down the center, like with a letter opener. All the secrets of my fetal development unfurled. Inside that tube: cavities called syrinxes. Syringomyelia.

And from that loose scroll: crest cells that migrated to my brain and face to create connective tissue, grow teeth.

My teeth. Deformed, with extra roots that curl and twist in my gum tissue like sea anemone. I have a high, narrow palate crowding my molars so close their roots appear tangled on x-rays, like trees planted too close.

The brain gives birth to the body. 

By now, my sister has been diagnosed with Ehlers Danlos Syndrome, a genetic connective tissue disorder that explains our joints sliding out of place, paresthesia, chronic pain, migraines, high dental arches and tooth decay, my Chiari-Syringomyelia, maybe even my epilepsy. That’s why we are talking about periventricular heterotopia.

“Your neurons migrate on lattices of connective tissue,” my neurologist tells me. “If you have a connective tissue disorder, maybe those lattices aren’t quite right.” Heterotopia means: out of place. Neurons out of place, in the wrong home, cause seizures.

All the things my father blamed on Lyme, on my detasseling job, on me, turn out to be genetic.

And they were passed down through him.

I know because of Greg. The Airborne paratrooper golden child. Paternal half-brother. I got his records from the VA, filled out the request as next of kin, sent the corrected obit to prove it:

Greg’s diagnosis of a bicep tendon rupture; the doctor notes that normally in someone 49 years old, a fair amount of force is involved in proximal tendon rupture, but he had no injury.

His records are full of tendon ruptures, hernias, migraines, pain, insomnia, joints out of place.

My father’s red catheter tubes, his stretched bladder; spontaneous pneumothorax in the 1980s, transported via ambulance from the ethanol plant to re-inflate his lung at the hospital; aortic root dilation; pain pain pain: all symptoms of EDS.

Not Lyme. Not my job getting dirty in the cornfields.

“See if you can get your brother Scott to go with you to the geneticist,” my neurologist says when I list off the family history. “Have them look at his joints, too. He may be the key.”

Scott, the peacemaker. Scott, who broke me into Granite Mountain. Scott, the Mormon. Scott, whose corrected obit unlocked Greg’s records. Scott, whose shoulders slide out of place, too.

Scott is my skeleton key.

___

 

On the phone, I tell Scott about Dad’s accusation: Scott is getting a little too close to Mom.

False accusations of incest from a father who never believed a real one. Greg did it to me, too. My father laughing, his half-toothless grin in the rearview mirror. 

Scott tells me how he changes the oil in Mom’s van, helps with repairs around the house, helps when she can’t lift up my father from the floor.

How my father gets angry when he asks to speak to my mother on the phone.

“I never thought he was jealous,” he says. “I think of your mother as my mother now.”

This is what my father fears most: The hearts of children turn toward mothers. 

I think, I will write you into the obit, too, when she dies. I will make sure you are listed as a surviving son. I will create your birthright like you created mine. 

In Granite Mountain, a second obit will strengthen our connective tissue, bind us together forever.

 

____

At the cardiologist office, we discuss the possibility I was never born.

My echocardiogram gives me away: a patent foramen ovale, the hole in the heart of every human fetus, a secret passageway through the septum for blood to bypass the lungs. Fetal lungs are dormant. Unborn babies, floating in an amniotic sea, do not breathe. Their tiny hearts keep their blood a secret. Shhhhh, the lungs are not alive like we are yet.

When a baby breathes its first breath, the portal closes forever: no going back. Within a few months, it seals tight as a tomb. Except maybe mine never did. Maybe my lungs never trusted the air. Maybe my heart never trusted my lungs. My portal is still there, waiting, luring my blood back through time.

Inside the right atria: the Chiari Network, meshy strands leftover from embryonic development, named for Hans Chiari, the physician who discovered them during autopsies, same man who discovered my neural tube birth defect. Chiari is inside me everywhere. A through-line from heart to brain: Chiari, Chiari, Chiari.

Maybe EDS, too: it causes heart defects.

Or the hole could be an atrial septal defect–not a purposeful passageway, an accidental one, when the atrial tissue failed to finish forming.

Either way, my heart thinks I am still incubating. I do not yet exist. 

Later, they find an aortic aneurysm, too: Something for old people, I think. How can I be old and never born at the same time?

EDS causes that, too: my conception will be my undoing.

“Does anyone in your family have heart defects?”

“My father,” I say.

The hearts of children turn toward the fathers, literally.

___

What about the hearts of fathers? 

My father’s high school sweetheart left him money when she died last year.

Last year. They were still together, still in love. She had my father’s heart until the bitter end. 

“Her children called him,” my sister says. “Asked him not to take it. They needed it for her burial.”

We have to find the kids, check the story. Medicaid demands a full accounting.

I search the obits for her first name; it’s all we have.

Judy + [town where she died]

One hit. Right year, right name, right location.

It could be my family:

Judy married a man named Clifford–same name as my father. She named her first daughter Denise.

Denise.

I freeze. Denise is my sister’s name.

I text my sister. She replies, “I am going to be sick. Mom always told me that Dad insisted on my name.”

“Let’s hope it’s the wrong Judy,” I text back, but we already know it is not.

___

I search the court database for her probate, find her divorce instead: 1997. The year Mom found out the first time. Dad promised to end it, but he never did.

But Judy did — with the other Clifford. The mirror Clifford.

___

We are not a real family. We are his pretend family.

I am glad I said no to that family photo. I am glad it doesn’t exist, because we don’t exist.

___

I start searching property records. Maybe Dad bought Judy a house. Maybe that other Denise — bizarro world Denise — is sitting in it right now. Maybe she is the real child, with the real inheritance. Maybe she just found out about secret money, too.

__

I dispatch my sister to our parents’ apartment. “Rifle through dad’s papers,” I say. “Look for a bank statement or maybe a safe deposit box key.”

The only thing she finds is shoe boxes filled with fishing trip photos and this:

family photo: my father wearing overalls and a ball hat standing between Greg on his left and Scott on his right, with his arms around them.

I wonder if Greg wanted that photo. I wonder if Scott did. I wonder if they exist to him.

___

January 2018: I return home for my appointment in the Connective Tissue Clinic at one of my childhood hospitals, the same clinic where my sister got diagnosed with EDS. It is my turn to be written into this genealogy with my father and brothers and sister. For my connective tissue to become part of the connective tissue that binds us.

It’s seven years since my last and only visit. Nobody in my family has seen me with a walking cane, rollator, ataxia, hearing aids. I am recovering from DVT and a mini-stroke, still on blood thinners after I begged my doctor not to take me off them, weaker than I used to be. I am the same Karrie who left 18 years ago; I am not the same Karrie who left 18 years ago.

“That’s my Granite Mountain,” I tell my husband as I look out our hotel window at the hospital.

University of Iowa Healthcare skywalk with the windows glowing golden in the dark.

In my suitcase: hundreds of pages of medical records from my mother, my father, Greg, and me.

I may never know if my dad bought a house for his high school sweetheart, but I can draw the tracings of his heart on an EKG in 2005. I know the size of his aortic root dilation and how his hernia repairs failed. I know the precise date he refused to stop blood thinners against medical advice because he — like me — was afraid of another stroke. Is this family? Is this real? 

The next day at the geneticist’s office, the doctor bends my elbows backward, measures the degree. Bends my pinkies backward, measures the degree. Pulls my thumbs to my forearms. Watches me hyperextend my knees, measures the degree. Shines a flashlight on my teeth. She examines my echocardiogram, reviews the records of my Chiari-Syringomyelia and scoliosis.

She says: You have EDS. It feels like something real. A real connection. I am part of a family. I made my own birthright, my own inheritance. I am my own skeleton key.

When she takes the family medical files, I think: Once records go in, they never come out. Families can be together forever. 

___

In the hallway of my parents’ apartment building, I show my father my rollator, ask him to give it a whirl. He’s got a hospital rehab-issue silver walker, the kind you can pick up at the drugstore. He refuses to use it, keeps falling.

blue steel rollator with a basket parked in a car parking space

“Let me show you how to engage the brakes,” I say squeezing them and asking him to try.

“I’m going to need a new driver’s license,” he says, chuckling.

The state revoked his license after he totaled Mom’s van.

Now he is like me, the epileptic child who never learned to drive. He made himself like me.

“Keep it,” I say.

“Are you sure?” he says. “These things are expensive.”

“It’s OK,” I say. I guess I am leaving him an inheritance, too.

___

In the living room of my parents’ apartment, we talk about our hearts. Who has a hole in their heart, like Karrie? Who has an aortic aneurysm, like Karrie?

“Some of your heart problems, I have, too,” Dad says, and I can tell he is excited for the connection.

Why do our connective tissues have to be fucked up? 

Scott asks me about Salt Lake City, talks about being Mormon. “I drink coffee and beer. I could never give them up.”

He is Mormon by shotgun. 

I don’t tell him about Granite Mountain. “I almost converted,” I say. “But I could never give up coffee, either.”

We laugh.

Mom gets out her camera, directs us to stand together for a family photo. She is finally getting it: one last picture of us all together.

Is it real now? 

When I leave, my father follows me out the door and shouts, “I love you!” across the parking lot. He looks so frail, so weak, like he can’t hurt me anymore, but then I remember the secret money. He is still hurting us. The heart of this father does not turn toward his children.

I’ll never understand why he did it.

He never loved us. 

___

A month later, on the anniversary of Judy’s death, my father mails me his Harvard Heart Newsletter with an article highlighted:

headline: The Magnitude of Marriage: Better for Your Heart?

Marriage is saving his heart.

I’ve never hurt my wife–your mom–physically, but mentally I guess I did for … I don’t know why now. But I thought I would have time to make it up.

 

Losing Propositions

Today I was talking to a friend about my project of filing an IRS Referral to investigate the tax exempt status of the Association of Writers & Writing Programs, following yet another year of disability exclusion and ADA violations  at the annual conference:

My friend is a lawyer, so she very gently and sweetly wanted to make sure I understand I have zero chance of winning–not to discourage me from trying, but just to make sure I know what I’m up against. This is a very tough area of law.

She was much relieved when I said, “Oh, of course I am going to lose!” (Followed by my foghorn laughter!)

I told her about my ongoing performance series called Losing Propositions, in which I barrel into battle knowing full well I have no chance in hell, and in fact, it is the entire point: It’s the performance I am interested in, the idea that having nothing to lose is, in its own way, an extremely powerful position from which to operate.

I can scream and yell about AWP online because everything they could take away from me — seats on panels, a slot at a reading, maybe a guest post on their site — is already gone.

And here is a space in which I feel extremely comfortable. Happy, even. Is that weird? It’s my happy place, diving deep into legal research knowing full well the deck is stacked.

In 2015, when I was applying to PHD programs, it started as a performance, too. I was angry about AWP’s systematic rejection of every single disability panel, and I had always wanted to earn a PHD. These two things are not disconnected: AWP is primarily a network of member educational programs, and those programs are inherently ableist at their core. I thought, OK, I will apply to programs and seek accommodations in the process (primarily, a waiver of the GRE), and I will Facebook-blog each response publicly.

I expected every single program to slam the door in my face.

But do you know what happened? The very first school — my dream school, in fact — said yes. And then another school did, and another. Each one that said yes made a stronger case for the next school because I could list them all and say, “Seven other programs have granted this accommodation, which speaks to it being reasonable under the ADA.” It snowballed. By the time it was over, I had applied to so many programs I cannot remember the number now.

When schools denied my accommodation request, I argued my case and asked them to reconsider. If they continued to dig in their heels, I sent them research into the futility of the GRE in predicting success, particularly for underrepresented groups. When they dug their heels in deeper, I FOIA’d them, seeking very specific data that might help me estimate how many people in their programs are disabled, since schools do not keep track of disability as a form of diversity.

I got data dumps like you wouldn’t believe.

I posted everything on Facebook. Again: performance. Nothing to lose. Performing my losses.

But see?  It was the “not having anything to lose” that fueled it. Thinking of it as performance made me powerful. Made me invulnerable to the pain of losing. Made me BOLD.  But then, as often does in my work, performance became reality. In fact, some of those programs have since dropped the GRE requirement altogether. I can’t take credit for that development, but I can take satisfaction that my “test case” was on the right track.

Test case.

That’s what my friend said when I told her about this performance series. “You’re a test case!” She told me about historical cases where activists essentially did the same thing: they knew they were going to lose, but they had to at least try. Sometimes they won. Sometimes they lost, but — and this is key — got their enemies to come out and state their true position so they knew what they were really up against. And from there, they formulated new strategies.

I never thought of what I’m doing that way, but I like this framework. When I approach things like filing an ADA complaint against AWP in 2015:

January 28, 2016: U.S. Department of Justice Civil Rights Division Disability Rights Section - NYA 950 Pennsylvania Avenue N.W. Washington, DC 20530 Re: Associates of Writers and Writing Programs Dear Ms. Higgins: This is in response to the complaint that you filed with this office alleging a possible violation of the Americans with Disabilities Act (ADA). After carefully reviewing the information that you provided, we have decided not to take any further action on your complaint. Unfortunately, because the Section receives thousands of ADA complaints each year, we do not have the resources to resolve all of them. It is important to note that the Justice Department has made no determination regarding the merits of your complaint or whether it could be redressed under the ADA or another .statute. Moreover, our decision not to take further action does not affect your right to pursue your complaint in another manner. You may wish to contact an attorney or legal service provider to determine what remedies may be available. In addition, a number of other options are available to you, including consulting state or local authorities or disability rights groups. Enclosed is a list of such organizations serving your area. These listings come from various sources, and our office cannot guarantee that the listings are current and accurate. We suggest that if you contact any of these organizations, you let them know that you have received this letter from us, so that they will not forward your complaint to our office. The text of the ADA, the Department's regulations, and many technical assistance publications are provided on our ADA Home Page at http:/ www.ada.gov. If you have specific questions about Title II or Ill of the ADA, or want copies of technical assistance publications sent to you, you may call the ADA Information Line at 800-514-0301 (voice) or 800-514-0383 (TTY). We regret that we are unable to further assist you in this matter. Enclosures (These are just lists of Utah disability organizations since I lived there at the time)
full text in alt-txt or you can also read it here: https://www.instagram.com/p/Bgq6G6FHYsV/?taken-by=karrie.higgins

I think, somebody has to do it. Why not me?

Back in 2016, when I got that letter from the DOJ, I didn’t know what I had in my hands. I had a right to sue letter. Again: losing can be powerful all on its own. And as another disability activist told me, this letter is beautiful. It shows how long we’ve been fighting. 

Every year, AWP treats our disability access & representation as a brand-new problem, as if we haven’t been fighting this fight, traveling in this same circle, over and over. But here we have proof. Legal proof. It is beautiful.

This is why I do it publicly: on social media, on my blog, in essays, in Twitter rants. I am performing justice. I want to show people it matters enough to fight–even if the odds are stacked against you. The process, the fight, the boldness, are what matter.

I know I have less than a 1% chance of winning on this 501(c)3 thing. That’s OK with me because … what if I do win? What if I’m the test case that becomes case law?

In 2016, when I moved to Colorado, I made protest art about the missing sidewalks and curb cuts. Everyone told me it was a waste of time. They had never seen a city respond to such a thing.

Karrie straddles the end of a sidewalk and the rocky grass where it ends, standing in a pyramid shape with her legs. In her front hand, she holds a red cane that matches her long red hair. Her other hand drags a pink suitcase behind her.

Do you know what happened by the end of that year? That sidewalk above got paved & the curb cut installed. The City saw my protest photos and just did it.

Sometimes, once in awhile, you fucking win.

But Losing Propositions–that’s where I find my power to keep going.

When I go in with the intent to lose, you can’t take my hope. You can’t take my dreams. You can’t even take my time.

If you tell me I am wasting my time studying 501(c)3 case law, I will tell you about how much I learned about the history of disability rights in education, like this case from my hometown. I will tell you how much I loved formulating a strategy, looking for ways to push disability justice forward. How can that be a waste of time?

Losing, sometimes, is winning.

visiting my brother’s grave for the first time

CW: death, graveyard, car accidents (in newspaper photos and headlines)

On the anniversary of Challenger, I visited my brother’s grave for the first time.

Karrie stands behind her brother’s gravestone, her right foot far forward so her legs are in pyramid pose. She holds a red cane in her right hand and drags a pink suitcase behind her with her left hand, red roses blooming from the zipper at the top. Her long skirt is printed with her brother’s mugshot photo and her long red hair blows in the slight breeze. In the distance, a barren tree stands tall. Photo styling & concept by me; photo by Alan Murdock.

If you have read my work, you know this date is significant to me. Two days after the last time I saw my brother, I watched the Challenger disaster on TV. I confuse NASA Public Affairs Officer Steve Nesbitt’s voice with my brother’s.

I’ve made spectrograms comparing them:

spectrogram of Steve Nesbitt saying Obviously a Major Malfunction, his voice in yellow against a green background.
Spectrogram of my brother saying “What secret’s that, honey?”from a phone call recorded by police.  It looks like a denser version of the Nesbitt spectrogram.

I didn’t plan to go to my brother’s grave on the Challenger anniversary. My husband and I traveled to Cedar Rapids for my Aunt Joann’s funeral and my appointment with a geneticist.

We had very little time — only a few minutes — and we had to sneak to the cemetery without telling my family. I needed to be there alone. I needed to process it without the sibs or my father.

Except I can’t go there alone, not really: no buses reach it; I can’t drive. My brother’s grave is unreachable except by car. Even grief rites are inaccessible sometimes.

As we drove toward the cemetery, we passed Prairie High School, and I gasped. “We are in the territory of my brother,” I said. “This is the land of Greg.”

He lived near Prairie High, attended Prairie High. I lived to the north, attended Kennedy. We had different geographies. Sometimes it didn’t feel like we came from the same city.

When we turned onto Highway 30 and passed the ADM plant, I said, “This is the land of my father.” It’s where he worked my whole childhood.

It was the land of Greg, too. “My brother had his first life-changing injury there.”

I have always felt like that factory ate my brother.

“Watch out for the fog. It creeps over the highway and causes accidents. That ethanol factory eats cars.”

headline from the Cedar Rapids Gazette about a 23-car pileup near the ADM plant
Gazette newspaper photo of a car slid under the back end of a school bus, the top of the car crushed. Police stand to the side.The caption says the accident occurred near the ADM plant.
newspaper photo of a car crashed into a semi truck with the headline “Steam cloud blamed in fatal crash”
newspaper photo of person on a stretcher and fire & police officers after an accident. Headline reads: Steam cloud may force road closings. Zero visibility near ADM blamed for second accident

It felt like the ADM plant was standing sentry. Or maybe my father was. I always feel like he is there, at ADM, watching.

When we turned into the cemetery, I found my brother’s grave without even having to wander.

View from down the row of gravestones, with my pink suitcase standing upright next to my brother’s, marking it. This was a test photo that Alan took.

It felt like somehow I had always known where he was.

It was cold–not just any cold, Iowa cold. My hands froze so badly I could not control them at the end of the shoot, when we returned to the car so I could change my skirt and wig to rush to my mother’s apartment. I couldn’t open the wig bag or slide the cap over my head. My fingers refused to grip. I cried. I needed to get that red wig off me. It’s the hair I associate with Greg. It’s a secret. The skirt, too.

My joints hurt. They were all out of place. The pose caused subluxations in my ankles and knees from my newly diagnosed Ehlers Danlos Syndrome. It’s excruciating to stand and balance like that for my ataxia & syringomyelia, too. That’s why I chose the pose: it puts me in Parallel Stress (see my other images in this series at this link).

We had to hurry so nobody would wonder where we were. I didn’t have time to process it. I am still processing it.

Close-up of the gravestone, which reads: Gregory D. Higgins July 12, 1957 to Sept 26, 2008 Son Brother Father, with the Army Airborne logo engraved in the upper left corner. Pink artificial roses & other flowers and a tattered United States flag decorate it. Photo by me.

The last time I saw my brother alive: Challenger.

The first time I saw his grave: Challenger.

That I have to keep my grief secret: obviously a major malfunction.

 

how a man shamed me for using the whisper network

CW sexual assault

In college, I lived in the Foreign Language House, a special wing of a dormitory dedicated to students who wanted to practice a foreign language every chance they got. It was a close-knit group, and activities like naked Star Trek — which, as a survivor of sexual abuse, I had way too much body shame to participate in — were the norm.

One of the guys there gave massages. He was a good friend, and I trusted him, so when he offered, I said yes.

I don’t remember a lot about before & after, but I remember his hands slipping around my ribcage and touching my breasts. I remember his fingers sliding under my bra band and into the waist of my pants. I remember freezing. I remember being afraid to tell him to stop because he was a friend, and I didn’t want to hurt his feelings.

His feelings.

Never mind it triggered memories of my brother’s grooming,  hands slipping up the front of my shirt “on accident” while wrestling. Never mind I felt violated and used. I thought he was a friend. It was normal in Foreign Language House for people to touch each other — hugs, hand-holding, cuddling under blankets — and I had no reason to think a “massage” meant “sex.”

I want to say I pushed his hands away, but I don’t remember.

I want to say I told him to stop, but I don’t remember.

But I remember the aftermath. The aftermath was the worst part.

A woman moved into my dorm, and I warned her about the massages. I told her to watch out because you think it’s just a massage, but then he gropes you. “His hands start sliding under your bra,” I said. “If he offers, don’t do it.”

He had visited the room a few minutes before to introduce himself. I saw how he was looking at her, and I didn’t want it to happen to her, too.

I didn’t know I was participating in the whisper network, in which women warn each other about men who violate them.

And I didn’t know he was lingering outside the room, listening through a vent.

Later, he confronted me. “Sounds carry through those vents,” he said. “I heard you.”

He accused me of violating him. Hurting his feelings.

His feelings.

I wanted to ask how come he lingered outside that room. Was he worried I might warn her? Did he know he had done something wrong? I was too flustered with shame, too afraid of hurting his feelings again.

His feelings.

It was never the same after that. Friends stopped saving me seats in the cafeteria. I had hurt their friend’s feelings. He was such a nice guy. How could I even think he would grope me? 

Nobody asked about my feelings.

Nobody asked if I was OK or why it bothered me or what happened.

Nobody.

It was just like my family all over again: shhhhhh, keep things our little secret or else.

And it worked. The shaming worked. I started to think I had done something wrong.

Last night, I learned my husband (then an acquaintance) was on the other side of all this. He had to listen to this guy complain and whine about his hurt feelings.

“I explained to him over and over why he was wrong,” my husband said. “He wasn’t having it. To him, you were getting in his way, spoiling his chances to pursue other women.”

His way.

I left the dorm not too long after. He stayed. He got me out of his way.

 

 

 

 

Life of the Mind Interrupted by Katie Rose Guest Pryal

cover of Life of the Mind Interrupted: Essays on Mental Health and Disability in Higher Education by Dr. Katie Rose Guest Pryal. The top half is a darker gray with the title in yellow, and the bottom half is a close-up of white flowers.

CW: mention of suicide, descriptions of ableism

Last week, I was talking to a friend about dropping out of my PHD program before I even began. “Honestly, I think it’s the best thing,” I said. “I would probably be in bipolar crisis if I had done it.”

My friend nodded. She’s disabled, too. She gets it. We both earned Masters Degrees. We both got sick, faced hospitalizations, survived manic episodes and more — all while trying like hell to churn out good work and not scare off our classmates and professors.

When I said, “I would probably be in bipolar crisis,” I didn’t mean I couldn’t do a PHD program. I meant PHD culture is toxic to people with disabilities. Before I delayed my admission (and later dropped out), I had pursued accommodations for my assistantship. At one point, Human Resources point-blank asked me how I ever expected to work in academia given my limitations & needs. When I said I had no intention of ever pursuing a career in academia, they were relieved. “You are much more likely to get the accommodations that way,” I was told.

Which is why when I learned Dr. Katie Rose Guest Pryal had written Life of the Mind Interrupted: Essays on Mental Health and Disability in Higher Education, I was ecstatic.

As a novelist, attorney, freelance writer, and former law professor, Dr. Pryal became a major voice for disability rights in higher education after she took a sabbatical from teaching and spoke up about her mental illness in the Chronicle of Higher Education:

But I feel anxiety for another reason as well. I have a psychiatric disability—that is, a mental illness—that I’ve kept secret since I was diagnosed at the age of 21. So when the teaching evaluation called me “emotionally eratic,” I feared that my supervisors would believe the words. And, despite all evidence to the contrary, I feared that Mr. Eratic might be right.

Mostly I feared that everyone at work would learn about my secret disability, and that I would get fired because of it. I feared I would be seen as unreasonable, irrational, and therefore unable to do the work required of a professor. Because of my disability, my career would be over.

Much of Life of the Mind Interrupted draws from her columns in the Chronicle, as well as other essays, with updates and expansions. Covering everything from the tenuous, terrifying tightrope walk of adjuncting-while-disabled to practical advice for classroom accessibility, Dr. Pryal not only dismantles academic ableism; she makes the case for how easy it is to be accessible — and how it benefits everyone.

In “Disclosure Blues: Should You Tell Colleagues About Your Mental Illness?,” she writes about Elyn Saks, a professor at University of Southern California who gave a TED talk about disclosing her schizophrenia:

Sak’s advice is written from the position of a tenured professor, with great academic privilege, the most important one being near-bulletproof job security. But there are other privileges that come with the type of job she holds. For example, she gives the following advice to professors with mental illness: “Schedule your courses carefully. If your meds make you tired in the morning, try not to teach morning classes. Try to choose courses you like to teach — you will do a better job and feel less stressed.” As any contingent professor knows, we often choose neither our courses nor our class meeting times.

The first time I sought a scheduling accommodation as an adjunct, I lost my job. I was teaching online, and each class included a live weekly webinar.  I always selected sections with daytime or early evening webinars: late nights = seizures. When the department overhauled the scheduling system, instructors lost control over seminar times, and I was forced to seek accommodation.

My department’s response? Tell fellow faculty about my epilepsy, beg for a daytime seminar, and hope for the best.

“That is not how accommodations work,” I told my department director. “I shouldn’t have to expose my private medical information to colleagues.”

Epilepsy comes with serious stigma: People think you are devious, crafty, lazy, dishonest, and dangerous. They doubt your intelligence, too (never mind intelligence is itself an ableist measure.) I’ve been called “idiot” or the r-word a lot when people find out about my seizures.

My director fired back. “You never told me you were disabled before.”

I wasn’t fired. Oh no, they knew enough not to outright can me. Instead, they withheld information, resources, and student contact lists, making it impossible to fulfill my duties. If I emailed my director with a question, he would critique my email instead of answering. “Learn how to write shorter emails,” he quipped once, after I sent him two paragraphs detailing a complex & urgent issue with a student. He was calling into question my competence, just as I had feared.

The saddest thing? None of it had to happen. The original scheduling process was accessible: We chose our times and that was that. No scheduling accommodations needed.

And that is a key point of Dr. Pryal’s book: accessibility and accommodations are not the same thing:

But the accommodations model requires us to disclose our disabilities, it requires us to explain, to give up secrets we might not want to share. The accommodations model depends on invasions of privacy to work.

Accessibility, alternatively, means that a space is always, 100% of the time, welcoming to people with disabilities. Accessibility means that ‘accommodations’ are integrated into a space and are not particularized to an individual–but rather created for our society as a whole. We, as a society, are disabled people. Therefore we, as a society, build spaces and procedures for disabled people.

It really is that simple.

And she shows how simple it can be with her “universal design alternative to the whiteboard,” in which she projects a blank document from her laptop onto a projection screen and writes a daily “class record.” Each week, she saves the file and emails to the entire class. “And my students really got into it,” she writes. “‘Put that on the class record!’ they would request during class, when I said something they found particularly helpful.” This was all in response to a student who couldn’t see the whiteboard and requested lecture notes in PDF. Accessibility benefits everyone. No barriers. No documentation. No invasion of privacy.

That last bit is key. Remember I mentioned my PHD assistantship accommodations? To get those, I not only had to declare I wasn’t pursuing an academic career; I had to turn over medical records and discuss — at length — my mobility limitations, mobility aids, and medication side effects. The medication side effects turned out to be more important than my actual disabilities: Side effects are easier to understand, easier to “prove,” and easier to accommodate. It was awkward and invasive. I felt like I was talking to a medical assistant, not my HR department.

And what about instructors and students who lack access to medical care? Or women of color, whose pain goes disbelieved, denied, and untreated? Transgender colleagues and students, who face misgendering and abuse at the hands of doctors?  The very concept of “documented disability” is exclusionary so long as access to documentation isn’t equal.

As Dr. Pryal writes, “we cannot ignore how race, gender, socioeconomic, and other kinds of privilege affect how people with disabilities live and work.” In “Shattering the Madness Monolith,” she shares stories of academics with diverse identities. One of them, speaking under the pseudonym “Annie,” reveals how she struggled to receive medical treatment as a Chinese-American woman, with one doctor even telling her “it was normal for Asian women to be anxious and stressed out, and anxiety was causing my abdominal pain.”

When I was a graduate student, a faculty member joked that proximity to a certain faculty member caused a couple seizures. The implication: my seizures are sexual. I don’t think anyone would have made that joke if I were a man.

Probably my favorite essay is “Breaking the Mad Genius Myth,” about Kurt Cobain and the romanticization of mental illness as “genius.” Of all the myths about mental illness, this one has done me the most harm: Bipolar robs me of credit for all my hard work. Don’t ever take medication, people will say. It will ruin your writing. They are wrong. As Dr. Pryal argues, creative people are more productive when their psychiatric symptoms are under control. For years, I bought into the myth, though. I believed medications dulled my shine. Now I know better, but I still have to listen to people deny my hard work and praise my epilepsy & bipolar as “genius.” At the same time, literary colleagues have outright accused me of exaggerating my experiences because they perceive me as “that unreliable crazy person.” That’s the problem with “mad genius.” It’s inherently “unreasonable,” as Dr. Pryal points out. The whole “genius” of it lies in being beyond “normal” reason.

While the myth of the “mad genius” romanticizes mental illness, the taboo around suicide & suicidal ideation is strong as ever. As Dr. Pryal writes in stunningly honest, heartbreaking prose, “Suicide didn’t almost kill me. The taboo did.” Taboos make us keep secrets. Taboos keep us from seeking help. Taboos keep us from asking for what we need.

Now imagine your career depends on living the “life of the mind” and you’re suicidal.

Ultimately, the reasons I couldn’t do my PHD program came down to the smallest things: I needed Paratransit; it’s not included in the student bus pass and too expensive. I needed a part-time load; part-time is not allowed. Other things, too. Along the way, as I delayed my decision, more than one doctor told me, “I’m worried about you doing a PHD.” One went so far as to say, “Don’t do it.”

“It will throw you into bipolar crisis,” she said. “I see it all the time.”

Which is why I am recommending Life of the Mind Interrupted to everyone.

___

 

For more of Katie Rose Guest Pryal’s work, find her at https://katieroseguestpryal.com/ and The Chronicle of Higher Education 

ink magick for a dental stem cell transplant

Want to read about some of my ink magick? Find it right here. I chose the page rather than post format because it’s formatted partly in two columns and needed  more width. Enjoy.

drawing of a spinal cord, vertebrae & brain with a tidal wave leaking from the back of the cervical spine and washing back toward the body, a gold-capped molar caught up in the wave; the spinal cord is drawn in black with gold illumination, the vertebrate in black with gold illumination over them, and the nerves, brain, and wave in ultramarine blue.

Winter Kills

Today is the one-year anniversary of the MRI that diagnosed my syringomyelia.

It was supposed to be a routine checkup after seizures. Sort of. My neurologist got freaked out by my gait, my abnormal smooth pursuit eye movements, my asymmetrical reflexes. She ordered a c-spine. We never did that before — only brain.

The techs blasted Prince into my headphones. In every MRI before — and I have had a lot of MRIs — I dozed off, hypnotized by the clang clang clang and bang bang bang. I slid into the tube expecting a nap. Instead, I panicked. Sometime during the Purple Rain guitar solo, I tried to lift my head. My neck burned like a beheading with a blade of fire. I am paralyzed, I thought. I can’t move my neck. I can’t move my neck. I can’t move my neck.

I kicked my feet. Screamed: GET ME OUT OF HERE. GET ME OUT OF HERE.

I knew. My spinal cord knew. All this time, it had been transmitting coded messages in the strange movements of my eyes, like a political prisoner paraded out on TV. Classified intelligence about a biological weapon implanted in my backbone. My own body turned traitor. This is not a democracy anymore. You do not get to choose. You can’t move your neck. You can’t move your neck.

“Winter Kills” is the soundtrack to the first time I saw the first syrinx in my spinal cord.

Alone, at home, MRI disc popped into my MacBook:

C-Spine MRI scan showing a silvery hole in my spinal cord at C5-T1.

I knew what that hole in my spinal cord was. If you have Chiari like I do, you know.

On TV: The Americans. “Winter Kills” in the background as KGB agent Elizabeth Jennings rifles through her friend Young Hee’s house for the access code to a biological weapon.

“The Day After” episode, when the Jennings family watches a made-for-TV movie about nuclear apocalypse, and they know: they are living, breathing weapons of mass destruction. They are quickening the End of the World.

“I was thinking about not telling the Center about this,” their contact in the bioweapons lab says. “I’d like to make the right decision… Nobody needs this. I don’t trust us with it.”

still from “The Day After” with an orange mushroom cloud blooming on the horizon and cars abandoned on a highway

The Day After was a real movie. I watched it as a kid. I lived in terror of nuclear bombs because, as we were told in school, Cedar Rapids was a prime target:

1982 newspaper clipping with a map of Cedar Rapids & a nuclear destruction zone drawn on it in concentric circles from Rockwell Collins

Cedar Rapids, Iowa: land of Rockwell Collins, makers of military aircraft communications and space shuttle parts; Duane Arnold nuclear plant; the bread basket of the nation. The Russians are going to nuke us. The Russians are going to nuke us. The Russians are going to nuke us. Nuclear winter is coming. They drilled it into our heads. The first Wednesday of every month: civil defense sirens. Take cover. 

Same as the tornado siren. I started to confuse tornadoes with nukes. Tornado shelters for bomb shelters. Tornado drills at school with duck and cover.

Later, I thought it was all a lie, but it wasn’t. On maps of a 500-warhead scenario: a triangle marking my childhood industrial wasteland in a flyover state nobody cares exists.

FEMA map of nuclear targets in a 500-warhead scenario and 2,000-warhead scenario

The Day After aired November 20, 1983: one month before my brother Jimmy died. I have always associated nuclear bombs with brother death. And there I was in 2016, in the middle of a resurrection spell to bring my other brother Greg back to life, and I made myself a spine like his:

image from Greg’s VA records indicating severe spinal injury at the same location as my first syrinx He had fusion from C5-6-7 and T1
1984 Doomsday Clock 3 minutes to midnight:
U.S.-Soviet relations reach their iciest point in decades. Dialogue between the two superpowers virtually stops. “Every channel of communications has been constricted or shut down; every form of contact has been attenuated or cut off. And arms control negotiations have been reduced to a species of propaganda.”

Resurrection has consequences.

Tear at me, searching for weaker seams.
I’ll tear at you, searching for weaker seams.

Resurrection and apocalypse. Resurrection requires apocalypse. Resurrection is apocalypse.

2017 Doomsday Clock is at 2 1/2 minutes to midnight:
For the last two years, the minute hand of the Doomsday Clock stayed set at three minutes before the hour, the closest it had been to midnight since the early 1980s. In its two most recent annual announcements on the Clock, the Science and Security Board warned: “The probability of global catastrophe is very high, and the actions needed to reduce the risks of disaster must be taken very soon.”

Nuclear winter is coming.

I am caught in a time loop: Comey canned, the president laughing in the Oval Office with the Russians who conspired to tear at us, searching for weaker seams, hacking intel about our election, turning our own democratic bodies against us.

tick tick tick

 

oracle of flesh and bones: a review of Body Cards by Courtney Putnam

 

Purple Box that says Body Cards: Insight from the Body, Wisdom from the Soul by Courtney Putnam, with the accompanying book and a few of the cards next to the box.

Body Cards: Insight From the Body, Wisdom for the Soul by Courtney Putnam appeared in my mailbox during a time when I would rather do anything than think about my body.

Last May, one month after signing a lease on a new apartment in a new state, my neurologist ordered a c-spine MRI after she witnessed drastic changes in my gait.

Ataxia, she called it. From the Greek: a/”without” + taxia/”order.”

Without order. Disordered.

I showed her my balance test results, ordered by an ENT when he saw how I walked. Diagnosis: abnormal smooth pursuit. 

“Follow my finger with your eyes,” she said.

I did as told.

“Yep. Not normal.”

The month before that: seizures when a new epilepsy med failed. Banged my head hard. “They weren’t like my normal seizures,” I told her. “No aura. Just BAM, down.”

I showed her my dental x-rays, tooth 19 shoved out of place. Told her we got me plastic dinosaur dishes because:

shattered white ceramic plate on a tiled floor

We expected another traumatic brain injury. Instead, the MRI found this:

MRI image showing a silvery cavity in my cervical spinal cord.

My first syrinx, a hole in my spinal cord. Diagnosis: syringomyelia.

These days, I walk like I am drunk. People think I am drunk. If a cop wanted me to follow his finger with my eyes, he would think I was drunk, too.

My shoulders, scapula, and neck burn. I wake up panicked the bed is on fire. My spinal cord is a lit fuse, tick tick tick to paralysis.

Which at first made Body Cards a scary proposition. I am never not thinking about my body. I have to breakdown the kinetics of every step, like a Muybridge series in my mind.

V0048621 Photographic series showing a nude, fair-skinned woman walking from the side, front, and back. Photogravure after Eadweard Muybridge, 1887
Credit: Wellcome Library, London.

But — full disclosure — I know Courtney from my MFA program in creative writing. I love her art. I trust her heart. I knew I was in good hands when she sent me the cards to try (also full disclosure: I loved them so much that after I left the accompanying book at a hotel, I bought a second deck for myself!).

For Body Cards, Courtney gleans wisdom from years of working with clients as a massage therapist and Reiki Master. Her poetic imagination and deep connection to the body emanate from her colorful collages. The cards are large with rounded corners, printed on a slick, high-quality card stock that is durable and easy to shuffle. Holding them, I sense the care that went into their design.

As Courtney writes in the book, the cards “draw upon the idea that the human body is not a complex organism complete with the powerful ability to heal, but also a tremendous resource for us in terms of understanding our very lives.”

“Your body is your map your muse and your medicine,” she writes.

Cerebrospinal fluid is 99% water, I thought, when I flipped opened the book and discovered those words. Water extinguishes fire. Let’s see what these cards can do.

___

 

I. (No Spread – A test of sorts.)

Cerebellum: Grace

Cerebellum card: in the foreground, a yellow human head bowed humbly with brain hemispheres visible as though an MRI: on one side, a green vine; on the other, atomic nuclear symbols. On the occipital area of the skull, a purple sunburst shape. In the upper right corner of the card is an orange bird. At the bottom in a decorative font is the word “grace.”

For my first reading, I went straight to the cerebellum card. I wanted to see what it brought up, how I connected to it. I have Chiari malformation, a neural tube birth defect that means my skull is too small for my cerebellum, can’t hold it in. My cerebellum has nowhere to go but down down down through the foramen magnum, spilling into my spinal canal. The compression makes me dizzy, makes me stumble, sends me into word-finding spirals, gives me pressure headaches at the back of my skull.

It gave me syringomyelia, too, clogging the flow of my cerebrospinal fluid until it formed little whirlpools inside my spinal cord.

If I could connect to this card, I could connect to the whole deck.

From the book:

Without a well-functioning cerebellum, we could struggle with our balance and coordination … On a metaphorical level, embracing grace means to embrace beauty, love, and forgiveness. What in your life is in need of this humble cerebellum energy?

When the cerebellum card waltzed into your reading, it’s time to seek out grace. First take stock of your actions toward yourself and others. What could use some softening, some lightness, some love?

The cerebellum card asks you to forgive yourself for the times in which you have been a little clumsy.

I forgive my childhood neurologists 100 times a day for never catching my birth defect even though they did a million MRIs for my epilepsy. For calling me hysterical. Which is to say: I haven’t really forgiven, because I have to keep doing it.

Abnormal smooth pursuit of forgiveness.

How do I forgive a whole city? I came here for a fresh start, an education, a chance to show my childhood neurologists they lacked imagination when they said I may lack realism in my aspirations. Every path out of my apartment complex ends like this:

Sidewalk that ends abruptly, turning into an uneven shoulder on a blacktop road. Plants partially block the path on the shoulder. Text overlaid in all caps: YOUR KIND NOT WELCOME

Abnormal smooth pursuit of a way to reach the cafes, the bookstores, the library, the health food shop: people. Humanity.

Every morning, I circle the hospital next door.

Google Earth view from above a large hospital complex encircled by a sidewalk.

two laps=one hour

My walking cane taps taps taps. From a drone, I am the minute hand tick tick tick.

I am restless as a clock face.

The first thing I said as the moving truck pulled into my new neighborhood: “It looks like my childhood.”

We didn’t have sidewalks leading out. We didn’t have a bus stop. I walked alone on the shoulders of four-lane roads in the dark. I balanced on railroad tracks (I could do that then). I spent a lot of time alone.

a sidewalk that abruptly ends, turning into grass and gravel. Text overlaid in all caps: YOUR KIND NOT WELCOME.

Twenty-seven years post-ADA. Twenty-seven years post-ADA. I forgive 100 times a day.

I need some kind of prosthetic grace, the grace of a sidewalk. The grace of a car, but I cannot drive. The grace of a bus, but transit is not accessible. The grace of friends who drive in for a visit.

I start to mark off days alone.

calendar from end of June 2016 to March 2017, with days without outside contact marked with a black dot. December 28th and March 22nd had visitors.

By December, it looks like a DNA test. My DNA test. Bisulfite mapping of my methylation marks would look like this. Isolation methylates DNA. Obliterates genes. Marks people.

[I forgive 100 times a day.]

Tinnitus like air raid sirens. I Bluetooth rain recordings into my hearing aids, drown out the alarms.

Recordings are not like real sound, 3d sound, the intonations in human voices. People who get out don’t know that. They think sound is sound, voices on TV are just like real life, but they are not. I am starved for human voices.

“You need to get out. Listen to people. Talk. Hear birds chirping. Airplanes. Car horns. All of it,” my audiologist told me after my hearing tests. “Isolation makes tinnitus worse.”

Can’t think. Can’t focus. I lost the prosthetic grace of my epilepsy medication when we moved here. Traumatic brain injuries, spinal cord like Swiss cheese, the terror of the holes expanding every time I fall fall fall like my brain through the foramen magnum. I lose books and find them again and lose them again. I get voice mails purr purr purr of my vibrating phone and forget until weeks later oh I gotta call them back.

“You need to get out,” my neurologists say. “Join groups. Go to lunch. You need to stimulate your brain. You need to be in novel situations.”

But:

steep concrete staircase leading to my apartment, photographed from the landing looking up

We told the landlords we needed an accessible apartment, told them about my walking cane. They said it would not be a problem.

Get out. Get out. Get out. Everyone told me that in Utah because of the air: smog so toxic it was like smoking  a pack of cigarettes a day. Come to Colorado. Come to Colorado. We have clean air.

I am here. I am breathing your air. Did you know isolation is as bad as smoking 15 cigarettes every day?

[Driving pollutes, but so does not driving. Catch-22.]

Did you know isolation can make you hear things? Make you forget things? Make you doubt things? Make you dead?

I post on Facebook. I sound too sad.  

[I delete 100x a day.]

April sun and medication changes bring mixed mania, mixed mania, mixed mania on rapid cycle. I lash out on Facebook. I fuck up.

“But Karrie,” a friend texts after witnessing it. “You know isolation is illegal in animal experiments, right? Because the animals lose it.”

I have to forgive myself for breaking. Breaking is normal.

[Which means I am not broken. Not yet.]

[27 years post ADA, I learn to take my vitals every day. When my heart is thunkthunkthunkthunk and not beat ___beat ___ beat___beat I know to pull the plug and  _______flat line___________on Facebook, on Twitter, on Instagram so nobody has to see who I am when I am broken.]

I circle the hospital in the morning. I circle the hospital in the afternoon. I circle the hospital all day long.

I am my own metaphor. I think that’s a kind of grace.

I don’t know about forgiveness yet [100x a day].

___

Thoughts after my Cerebellum card test: At first, the connection between the cerebellum and forgiveness frightened me. If my cerebellum is compressed, is my capacity for forgiveness, too? But it wasn’t like that! The cards do not “diagnose” “deficiencies”; they inspire personal journeys. As with many divination decks, they are what you make them. I made them into disability poetics because that’s who I am and what I do.

Courtney suggests wearing magenta or white and using rosewood and ylang ylang oils to stimulate the crown Chakra. Rosewood and ylang ylang! I want to make a hair powder with them so I can catch the scent throughout the day and remind myself of what I wrote. Maybe even to forgive myself.

“Elevate an activity or thing with purpose, meaning, significance and beauty!” She writes. “How might brushing your teeth, doing the dishes, buying groceries, or changing the oil in your car become mindful and enlightening?

Every movement is mindful for me right now, but not in the way she means. My mindfulness is locomotive, automatic, unintentional and sometimes, fear-based. And yet, it has changed how I think about everyday moments. I have started to see the staircase outside my door as my backbone. I was doing that before Body Cards, but now, I am turning it into a conscious meditation on forgiveness. How can I hate this inaccessible apartment, how can I fear those stairs, when they are me? I can forgive this building for being disabled, missing an elevator. (It is disabled like me!) I am it, and it is me. Not sure how I feel about it yet, but it’s a start.

___

Body Cards offers several spreads of varying complexity: Present Moment, Letting Go, Transformation and Chakra. I decided to try “Letting Go.” It’s simple and tells a story.

II: “Letting Go” Spread

Skin, Liver and Finger card in a row, in that order, laid out on a blue background. The Skin card features a human body with a bird head and a green crown stitching together a new skin. It says “renewal” at the bottom. The liver card features a child with arm extended, shooting lightning bolts at a frog wearing a blue crown. At the bottom it says, “regeneration.” The Fingers card features a fairy-like girl hanging from gymnastic rings. There is a bird on either side of her, and the words “Self-Assurance” appears at bottom.

1st card= “The Issue”
2nd card = “What’s holding you back?”
3rd card = “What will help you move forward?”

THE ISSUE: SKIN/RENEWAL: “If the skin has sloughed its way into your cards today, it may signal a time of shedding your attachment to the past.”

Chakra: heart
Color: pink

Pink! I am the woman with the pink hair, pink tennis shoes, pink cane, pink coat, pink suitcase, pink purse. One doctor at NIH, where I am enrolled in a syringomyelia study, even called me the Pink Lady because of all_that_pink.

pink coat, pink purse, pink fluffy keychain and pink wallet on a hotel bed. next to them sits a pink suitcase.

I told my husband the first time I bleached my hair to go full-on unicorn since high school, “If I’m going to use a cane, I am going to be sparkly and unicorn-y.” I searched for canes in pastels far and wide. I embraced them as fashion and mobility aids. I never had a moment of oh this is sad. I shed my old skin.

Or did I? I’ve always been disabled — epilepsy, auditory processing disorder (undiagnosed until adulthood), partial deafness, migraines, chronic pain, a birth defect not diagnosed until I was 39– but it’s always been invisible. People couldn’t see it unless I had a seizure, so they didn’t believe it. “You don’t look sick.”

Was I shedding an old skin or flipping mine inside out, demanding SEE ME.

Pink: heart chakra. Was all that pink because I loved myself or because I wanted to? An armor that said I love me, so you should, too?

WHAT IS HOLDING ME BACK? LIVER/REGENERATION:  “If the liver card is speaking to you today, it is important to listen, for the liver offers an important message about the power of our bodies to heal.”

How can regeneration and healing hold me back from renewal?

Regenerate:
1. verb (of a living organism) regrow (new tissue) to replace lost or injured tissue.
2. Adjective reformed or reborn, especially in a spiritual or moral sense.

Renew:

verb:
1. resume (an activity) after an interruption.
2. re-establish (a relationship).
3. repeat (an action or statement).
4. extend for a further period the validity of (a license, subscription, or contract).
5. replace (something that is broken or worn out).

The first time I saw the hole in my spinal cord, I thought, I did that. I made it. Not my Chiari malformation. Not my neural tube birth defect. Me. Not my DNA. I did. Consciously.

For years, I have been working on a magic spell to resurrect my oldest brother. I call it intentional epigenetics. I am stealing his memories — learning what he knew, doing what he did. Memories have epigenetic mechanisms, which means I am physically becoming him. When I saw my syringomyelia for the first time on an MRI, I knew my magic spell had worked.

My brother had a spine like mine, fused with titanium in the same location as my cervical syrinx, injuries all the way down to where my second syrinx, later discovered at NIH, ends. My brother used a walking cane. My brother’s nerves burned.

Resurrecting my brother, though, means I cannot regenerate my own tissue, cannot heal. A healed body is fundamentally incompatible with his.

[Resurrection has consequences.]

And yet, there is no cure for Chiari-syringomyelia (surgery is not a “cure”), or epilepsy, or central auditory processing disorder, or Bipolar, or migraines, or on & on. Meaning: I cannot hope for regeneration, anyway.

[I circle the hospital in the morning. I circle the hospital in the afternoon. I circle the hospital all day long.]

WHAT WILL HELP ME MOVE FORWARD FINGERS/SELF ASSURANCE:

The first time I visited NIH, a neurologist told me I had thenar wasting. She meant the thenar eminence, muscles responsible for bringing thumb and fingers together: opposable thumbs, the thing that set early humans apart. No more walking on hands.

Thenar: Greek for palm of the hand, sole of the foot.

[Is my cane a leg or an arm?]

One of my syrinxes sits at the spot that innervates the thenar eminence. The signals are cut off, like me where the sidewalks end. [I am my own metaphor.]

The inner “C” between my index finger and thumb burns. Goes numb.

“When you start getting numb there, you know you are in trouble,” my old neurologist said. “That’s your warning signal.”

How can losing my opposable thumbs propel me forward?

I used to hang from gymnast hoops like the figure in the card. I used to pump out chin-ups. Now, I am losing my grip–literally and metaphorically.

This card also signals undue influence from society or family. I wonder about it sometimes, if I am under hypnosis of a kind: you are less than human because you walk on your hand.

I need to shed attachment to the past; my connection to my brother is holding me back, and shedding undue influence will propel me forward. There is something here. I don’t see it all yet. That’s OK.

___

Courtney suggests rose essential oil and pink clothing to stimulate the heart chakra. I wear pink every day. Drink rose petal tea. Mix rose petal infused homemade lotions. Make rose petal jellies and syrups. Grind rose petals into powder for my hair. Fairy dust. I have always done this. Prosthetic heart.

She also provides a meditation: sit in prayer pose and repeat, I trust my heart, I trust my heart, I trust my heart. 

Today, I don’t trust my heart. It is filled with the undue influence of blotted out calendar days and missing sidewalks.

I will try it, though. Not today. Maybe next time the tinnitus gets too loud. Instead of water, I can listen to my voice.

Did you know the word syrinx also means a set of pan pipes, or the vocal organs of birds?

Layrnx card. A profile of a face with closed eyes and mouth open as if singing or speaking. Pink petals emanate from the mouth. Behind, water reflects light. At the spot of the throat where the voice box would sit, there is a dandelion puff. The bottom of the card reads: expression.

___

Body Cards by Courtney Putnam have helped me process a difficult time in my life. Looking back, I think my apprehension was whether cards like this could apply to my disabled body. So many things are made for abled bodies — streets with no sidewalks, sidewalks with no curb cuts, apartments with no elevators — that I get wary of anything “body” related. In a way, though, Body Cards were made for me (or someone like me). After all, Courtney was inspired by her healing work with “disordered,” “ungraceful,” hurting bodies – just like mine. And the cards aren’t the oracle, not all by themselves. The body is, too — my body. An oracle of flesh and bone.

Buy your deck here.

[Full disclosure again: Courtney was kind enough to send me a deck to review as I had been eagerly anticipating Body Cards for a long time, and I loved it so much I also bought a second one when I lost the book!]

Who Killed Virginia Woolf? CW: suicide; ableism; sexual abuse

In response to Amanda Lauren’s XOJane piece suggesting her mentally ill friend’s death was a “blessing.” 

Content warning: suicide; ableism; mental illness; abuse; caregiver abuse; psychiatric commitment; violence; dead bodies

If you are in suicide crisis, please call the National Suicide Hotline at 1 (800) 273-8255.

If you are a victim of sexual assault in crisis, please call RAINN at 800.656.HOPE (4673).

___

The first time it happened, a stranger in Prairie Lights bookstore in Iowa City called me “the second coming.” He was pointing to a display of tote bags and t-shirts printed with Virginia Woolf’s portrait.

Black and white profile photograph of Virginia Woolf. She is seated facing left, with her long hair in a bun at the nape of her neck. She wears a white, long-sleeved dress. Her mouth is closed, face relaxed, and eyes appear almost unfocused.
English novelist and critic Virginia Woolf (1882 – 1941), 1902. (Photo by George C. Beresford/Hulton Archive/Getty Images)

“That could be you,” he said.

He didn’t know I was a writer. He didn’t know I was sexually abused by a half-brother, just like Virginia. That I am Bipolar, just like Virginia. That I have tried to commit suicide, more than once, just like Virginia. 

He meant second coming in body, not mind.

But I saw the dissociation in that portrait, how she floated out of her body. That’s what he sees, too, I thought. He sees I am not all here.

___

“I feel certain I am going mad again,” I say. I am reading Virginia Woolf’s suicide note to my husband, the one she wrote for her husband. I have been studying suicide notes–their art and craft, their rhetorical strategies, what it means to write them, to not write them. 

I feel we can’t go through another of those terrible times. And I shan’t recover this time. I begin to hear voices, and I can’t concentrate. So I am doing what seems the best thing to do. You have given me the greatest possible happiness. You have been in every way all that anyone could be. I don’t think two people could have been happier till this terrible disease came. I can’t fight any longer. I know that I am spoiling your life, that without me you could work. And you will I know. You see I can’t even write this properly. I can’t read. What I want to say is I owe all the happiness of my life to you. You have been entirely patient with me and incredibly good. I want to say that – everybody knows it. If anybody could have saved me it would have been you. Everything has gone from me but the certainty of your goodness. I can’t go on spoiling your life any longer.

I don’t think two people could have been happier than we have been.

“She sounds just like you,” my husband says. “You have said the same words.”

___

I wrote my first suicide note in 1990. Notebook paper, ballpoint pen, folded and hand-delivered to a friend at school.

“Read it later,” I said. She didn’t know it was an advanced directive: no life saving measures.

I wish I had that note now. I want to know why I did it. Or why I thought I did it. Or what I wanted people to think about why I did it.

Who doesn’t remember their own suicide note?

___

Lately I can’t think. I can’t read. My eyes skip around l-t-e-t-ers, fill in blanks like Mad Libs. I am dizzy. I can’t walk in a _______ ______. I stumble with my walking cane like I am ______. All day: an electric hum in my ear. bzzzzzzz bzzzzzzz bzzzzzzzzzz the appliances are talking to me.

“I feel like someone who used to be smart,” I tell an old writing mentor. He says I am still smart, but I think: He hasn’t seen me in a long time, hasn’t read my work in a long time. He doesn’t know. A seizure last winter cracked two molars, knocked tooth 19 out of place. Rattled my brains.

I start books and can’t _________. I start essays and can’t _______. I grind batches of bone black ink that go rancid before I can use them. I can’t control a pen like I used to.

My signature changes every day.

my signature, Karrie Higgins, in black ink on dotted white paper

Look how the line from the H stabs at “Karrie” like a spear. I cross out my own name. Graphologists call it scoring, cutting. It means suicidal ideation, but how can I know, when I can’t control the pen?

I receive radio transmissions from Saturn.

(transcript at link)

Or is it the tinnitus? Or is it a seizure? Or is it mania?

I feel certain I am going ______. I can’t _____ this time. 

___

I’ve a very low opinion of my writing at the moment. This comes of correcting proofs: it’s all bounce and jerk; I want to spin a thread like a spider.

— Virginia Woolf, 5 August 1927,  letter to Vita Sackville-West

___

I can’t sleep without pills.

One blue pill, one red pill. Both are epilepsy medications.

On nights when I swallow my amitryptiline, down down down the rabbit hole I fall, landing at the portal to apartment “A,” where my brother Greg died three days before facing trial for sexual abuse in the 2nd degree.

White apartment door with a golden letter A on it.
crime scene photo, Cedar Rapids Police

I knock.

My brother answers, a Marlboro Red dangling from his lips. He recognizes me even though he hasn’t laid eyes on me for twenty-five years. He smashes out his cigarette, yanks me across the threshold by my wrist. Inside, he pins me against the wall, leans in, licks my teeth the way he always did.

Sometimes, I force my way in. “Shhh,” I say when he protests. “I am all grown up. You can’t get arrested anymore.” This time, I pin him against the wall. I leave the door wide open. “Nobody knows I’m your sister.”

Or it plays out like this: He suspects the cops sent me undercover with a wire tucked into my bra or a transmitter concealed under a tooth cap. I strip out of my clothes, shoes to bra, to prove I am not a secret agent. I open my mouth wide, let him swab my teeth with his index finger and yank on my root canal crowns. He kneels, wraps his arms around my legs, and cries. I stroke his cowlick and whisper, “Don’t kill yourself. Don’t die. Let me save you.”

___

“I am jealous of your tidy ending,” a friend says. “His death was a blessing.”

___

“He wasn’t a suicide guy,” his Airborne buddy tells me. “He would crawl through guts and nails and shit and still keep going.”

In the police report:

police report: Officer Doyle and I did a pill count on Higgins extensive list of medications.

In the autopsy report:

autopsy report scan: whole blood analysis positive for morphine, methadone, gabapentin, diazepam, and desmethyldiazepam, all at non-toxic concentrations.

Cause of death: undetermined. 

In a message from his ex-wife: 

“I can tell you .. that on two different occasions I had found Greg in the same condition, in the same position. Once in our family room.  And the other time in our hot tub building outdoors.   That time I had to call an ambulance because he was unresponsive.  It was in the wintertime, and when they finally got him on the gurney & outside where the air was cold, he started choking, sat straight up & said, “What’s going on?”   He refused to let them take him to the hospital & had to sign a statement to that effect.  I told him the next day I was going to call his doctor about the medications.  And (this is the first time he had ever “threatened” me)  he shook his fist in my face and said “Don’t you dare.  If you do, she’ll stop giving me the pain medications.”

“I know what I’m doing.”

__

 

The police mailed me crime scene photos of my brother’s body.

They let me see the putrefactive decay in his jaw.

They let me see the fixed lividity in his chest where the blood, no longer pumping, pooled like blooming bruises.

They let me see his penis, bloated with carbon dioxide, as ridiculous as a balloon animal.

But not the pill count. They redacted the pill count. Suicide is a medical record.

__

May 15, 1990, in the psych ward after I swallowed all my epilepsy pills, psychiatrists interrogated me for a precipitating event: 

scan from hospital chart that says, "A boyfriend dumped her recently."

scan from medical record stating, “DHS had investigated previous abuse reports and, in fact, Ann Loper had just investigated possible abuse by father the night before her admission.”

medical record: she's had initial insomnia

___

“He could never sleep,” Greg’s Airborne buddy told me. “He was up making peanut butter sandwiches 3 or 4 times a night. He just never slept. That will kill a person, you know.”

“Is there any chance in your mind that he committed suicide?” I spit the words out fast, afraid he will cut me off.

Honey,” he says, “You could have pushed him out of the plane without a parachute, and he would have landed. Your brother was tough. He was a tough man. You couldn’t take the parachute off him.”

He means an Army parachute: Jump School, Fort Benning, 1975, my brother graduated top of his class, Iron Mike Award, the best of the best.

I don’t tell him about the Army records.

October 18, 1976:

Army record of restrictions placed on my brother due to chronic prostatitis: No crawling, stooping, running, jumping, prolonged standing or marching; no strenuous physical activity; no assignment requiring prolonged handling of heavy materials including weapons; no overhead work, push-ups, pull-ups.

March 24, 1977:

Army record of restrictions placed on my brother: No crawling, stooping, running, jumping, prolonged standing or marching; no strenuous physical activity; no assignment requiring prolonged handling of heavy materials including weapons; no overhead work, push-ups, pull-ups.

June 29, 1977, note in the Army medical chart:

Infirmary record: Patient complains of syncope in plane due to harness. Complains of pain in femoral area and desires to be off Airborne status.
Patient complains of syncope in plane due to harness. Complains of pain in femoral area and desires to be off Airborne status.

I don’t tell him I practiced rolling off the couch the way the Medical Examiner described it in the autopsy report. Even the best of the best couldn’t stick that landing. No way he did it doped up on narcotics with a bad back and a bum knee. For weeks, my hips and knees bloomed purple. He got down in that position. He knew he was dying.

Or how, when the crime scene photos arrived in the mail from the Cedar Rapids Police, I stripped nude and crouched in front of my couch in an identical position to my brother’s body, the fetal position, the cops called it. I curled the fingers of my left hand—all except the middle one, which I extended almost straight, as he did in that last moment, one final fuck you on his way into eternity.

___

“What if he did it because he was afraid they would take away his painkillers in prison?”

What if my brother killed himself because he was disabled? 

“That’s a real possibility.”

___

May 18, 1990, movie night in the psych ward.

Molly Ringwald as Lonnie, all ginger bob and pink scars on her wrist, sneaking out her bedroom window with boyfriend Rick. Star-crossed lovers, forbidden.

They ride and ride and ride on his motorcycle, past a car dealership, Pat Benatar soundtrack.

They almost crash head-on into a car.

They almost crash into a train.

“Rick you’re gonna kill us!” Lonnie screams as the train whooshes by.

“We could have kept going,” Rick says. “We could have done it.”

“It’s not that easy, Rick. We could have ended up crippled, or lost an arm or leg or both, and then we’d have to depend on our parents for the rest of our lives.”

It was better to be dead than disabled.

___

 

They sneak into Lonnie’s garage, hot-wire the family car, fall asleep on the front seat.

The next morning, their corpses are whole, beautiful, perfect, radiant, dead. Not disabled.

___

 

old newspaper advertisement for ethanol that says, "When was the last time you heard anything good about carbon monoxide?"

___

 

May 15, 1940, Virginia Woolf’s diary:

An appeal last night for home defence—against parachutists. L. says he’ll join. An acid conversation. Our nerves are harassed—mine at least: L. evidently relieved by the chance of doing something. Gun & uniform to me slightly ridiculous. Behind that the strain: this morning we discussed suicide if Hitler lands. Jews beaten up. What point in waiting? Better shut the garage doors. This is a sensible, rather matter of fact talk.

No, I don’t want the garage to see the end of me. I’ve a wish for 10 years more, & to write my book …

This idea struck me: the army is the body: I am the brain. Thinking is my fighting.

___

The ENT orders a balance test, spinning me blindfolded in a rotary chair in a dark booth. I lose all sense of space and time. I am a paratrooper, jumping from a plane in the dark of night.

“It’s not your vestibular system,” he says. “It’s your brain.”

The army is the body.  

___

It’s not just my brain. I am losing on all fronts.

“It looks like a bullet shot clean through me,” I say to my husband, pointing at the silvery hole in my spinal cord. A syrinx, a cavity, like in a tooth.

Syringomyelia, caused by my Chiari I Malformation. A birth defect, like I was doomed just by being born. My brain is occupying my body now. 

My MRI image showing a silvery cavity in my spinal cord.

The syrinx is a scorched earth campaign, destroying neurons, burning up my spinal cord until it paralyzes me. It could take years. Could take days. I could wake up tomorrow unable to swallow.

I picture a nurse hoisting me into a bathtub, flash to my brother clicking the lock on the bathroom door, unbuttoning my pajamas.

Pistachio porcelain bathtub. Chipped plaster. Calk thick as toothpaste fresh out of the tube.

I am eight years old. David Copperfield is on the television in the living room. Can David do it? Can David Copperfield make the Statue of Liberty disappear? 

My brother’s ribcage crushing mine. His hipbones thrusting against my hipbones, hard as my father’s belt buckle, but I can take it because I figured out how to make pain move.

Straight line from the hole between my legs to the empty socket where my molar used to be. The socket only feels good when I stick my tongue in it. My brother is licking the socket, licking the socket, licking the socket. My tooth socket can take what I can’t.

And then one day it occurred to me that I could show with magic how we take our freedom for granted. Sometimes we don’t realize how important something is until it’s gone. So I asked our government for permission to let me make the Statue of Liberty disappear—just for a few minutes.

I thought if we faced emptiness where for as long as we can remember, that great lady has lifted her lamp, why then, we might imagine what the world would be like without freedom, and we’d realize how precious our freedom really was.

But nobody in that live audience is facing emptiness. People cheer. People applaud. One old lady shouts, “I have never seen a Statue of Liberty disappear like that one before!”

They are glad the statue vanished. They are glad for the empty harbor. Nobody cheers for getting tricked. Nobody wants to be a fool. Which means they believe the statue is really gone. They believe in magic.

They want freedom subject to magical forces.

___

Syringomyelia restrictions: No running, no jumping, no prolonged standing, no strenuous activity, no lifting, no overhead work, no push-ups, no pull-ups. “And no parachute jumping,” my neurologist jokes.

___

My neck burns. My shoulders burn. Vertebrae topple out of place like a Jenga tower. I can’t sleep. Can’t sit. Can’t stand. In syringomyelia speak, it’s called the cape. I call it my parachute harness. I am strapped in. The pain protects me, keeps me from falling falling falling. It reminds me: take my epilepsy meds. It reminds me: walk slow. tick tick tick tick tick goes the bomb inside my spine.  The army is the body.  

The doctors predict my future: gabapentin and morphine. Same drugs my brother took after his spine got crushed making the machines that harvest the corn to make ethanol. When was the last time you heard anything good about carbon monoxide? Down down down down the rabbit hole I will fall, into Apartment A.

Crouched in front of the couch in the fetal position. My birth defect is going to kill me. My birth is going to be my end.

Thinking is my fighting. Thinking is my fighting. Thinking is my fighting. 

___

Tower atop a building with the word WALKER going down vertically and the word CENTER at the base, running horizontally.

I begin to hear voices.

David Copperfield is casting magic spells through the Walker Center Weather Tower.

I think I think I think David Copperfield  cast a spell on my spine.

 

__

My neurologist prescribes me a new epilepsy med. The pill of last resort, I call it. No generic. Poor insurance coverage. Sometimes thousands of dollars for a 90-day supply.

“I am sucking us dry,” I tell my husband. I have no job. No hope of a job. I made $50 last year.

Sucking us dry: that’s what my father used to tell me every time a new hospital bill landed in the mailbox. Now I say it, like something I inherited, something in my genes that makes me turn on myself.

___

I am afraid of being disabled under President Trump.

Do you know what Nazis did to people like me?

They put us to sleep with our own medications. They put us to sleep.

__

“How terrible that you never got to grow up and live your adult life,” an anesthesiologist says, when he asks if I have a ride home from my root canal, and I tell him I cannot drive because of epilepsy.

When the Propofol hits, I feel myself floating out through my tooth socket, the same way I did with my brother, the same way I still do when I have sex. I tug at the oxygen mask, wriggle in the chair. This feels just like—

Baby Grows Up. I despised that doll. She grew when she sucked her magic baby bottle and shrank back to baby size when you yanked a cord from the base of her spine. I knew it was a lie: adults could make you all grown up by sticking things in your mouth, but they could never make you a baby again.

I fed her bottle, yanked her spinal cord, fed her bottle, yanked her spinal cord, over and over like a hex.

___

The dentist stands very clean and impersonal in his long white overcoat. He tells one not to cross one’s legs and arranges a bit under one’s chin. Then the aneasthetist comes in with his bag as clean and impersonal as the dentist and only as black as the other is white. Both seem to wear uniform and to belong to some separate order of humanity, some third sex … These are the people who manage the embarcations and disembarcations of the human spirit; these are they who stand on the border between life and death forwarding the spirit from one to the other with clean impersonal antiseptic hands.

–Virginia Woolf, “Gas”

___

 

“Do you know why I love Propofol?” I tell my husband. “It doesn’t make you high. It doesn’t drag you down. It doesn’t make you feel anything. It’s like the coffin lid slams shut, and–” I snap my fingers. “You’re dead.”

Every time I see the dentist now, I hope for a root canal. I hope for any procedure that justifies Propofol. My dentist is my dealer, and he doesn’t even know it. “If I could buy that shit over the counter,” I tell my husband. “I would have a problem.”

Later, I learn that survivors of sexual trauma are attracted to the dissociative state it induces. I love a drug that feels just like sex with my brother. I love a drug that feels like abuse.

I write Dr. Omar Manejwala, an expert in Propofol addiction. I ask, “Is it suicidal ideation?”

“I think that this is a primitive defense,” he writes back. “It allows for self-denial without the moral implications of suicide.”

___

 

Psychiatric commitment form: Also has repeating nightmare of her own death and she finds a coffin and patient is in it.

___

“You’ll feel it first in your fingers,” the neurologist says, making a C with one pointer finger and thumb and rubbing it with the other.

How do I kill myself if I can’t use my hands?

___

December 1983: My brother Jimmy fired a bullet through his heart. Temperature: 30 degrees below zero, cold enough to crystallize diesel, clog fuel injectors, slow school buses to a creep. Cars were scattered like abandoned toys in the streets, as if the Rapture had translated their drivers straight out of the bucket seats.

At AAA: distress tickets piled up three inches thick. Mom & Pop towing services turned callers away.

Jimmy’s horoscope in the Cedar Rapids Gazette: a phone call brings good news.

Libra: (Sept. 23-Oct. 22): This can be a very rewarding work week. Get a jump on the competition by making a budget for 1984. A phone call brings good news. Your experience saves you time.

His father—his real father, I was told— rendered his tow truck a super vehicle: tank filled with Diesel 1, impervious to cold. All night, every hour on the hour, he flipped the ignition to heat the engine.

Jimmy knew about the pile of distress tickets. He knew his father could save the cars or his son, but not both. He knew, and he pointed the gun barrel at his heart and fired.

Jimmy died because the cars stopped.

(When was the last time you heard anything good about carbon monoxide?)

___

 

Etched into his gravestone: If I go to heaven I earned it; If I go to hell I deserved it.

 

___

“I knew your brother as Jim Higgins first,” his elementary school friend tells me. “Now this is where it gets sketchy because he had his name changed and he talked about him having other toys at his other house so I don’t really remember the details … I think if anything messed him up was a series of name changes because that became a stumbling block for a lot of the kids in our class in fact when we speak of him still we always mention the name changes.”

__

He means when my father rescinded his adoption.

“Why did dad do it?” I asked my mother.

“Child support,” she said.

Jimmy was a burden, too. Jimmy was draining my father dry. 

___

May 20, 1990: a psychiatric nurse told me to be kinder to my father, to show support and love for him, to be reasonable.

scan from psychiatric chart, in nurse’s handwriting, with quote circled in red: “Goals handed in on time. Received a vote of “3” in Levels Meeting. Is going to be more understanding and reasonable with father. Will show support and love for him.”

He knew about my black eye, the one my mother lied about to cover up:

At this time, Karen tries to explain a bruise on Karrie's face. Karen says it probably happened when Karrie had a seizure at school and hit her face on the desk. That Saturday, Mr. Higgins was waving his hands wildly. Karrie stood up and got hit in the face. Mr. Higgins was very upset because a case worker ended up at the house and again, he felt Karrie was the one who turned him in. The case worker came the night before Karrie attempted suicide.

He knew about the cuts all up and down my arms, scoring from dull butter knives I sawed back and forth across my skin.

He knew my father was under investigation for child abuse.

He knew that, and he told me: you are the burden. People who swallow the pills are always the burden.

___

May 20, 2016: I sign a last will and testament. I want my papers in order before I lose control of my hands. I want my father written out of it.

Thy will is not done, I say out loud to my psychiatric chartMy will is done.

___

I message my old writing mentor a letter from Virginia Woolf to Beatrice Webb, April 8, 1931:

I wanted to tell you but was too shy, how much I was pleased by your views upon the possible justification of suicide. Having made the attempt myself, from the best of motives as I thought – not to be a burden on my husband – the conventional accusation of cowardice and sin has always rather rankled.

He messages back with a quote from Christopher Isherwood:

There is one question which we seldom ask each other directly: it is too brutal. And yet it is the only question worth asking our fellow-travelers. What makes you go on living? Why don’t you kill yourself? Why is all this bearable? What makes you bear it? … You did whatever was next on the list. A meal to be eaten. Chapter eleven to be written. The telephone rings. You go off somewhere in a taxi. There is one’s job. There are amusements. There are people. There are books. There are things to be bought in shops. There is always something new. There has to be. Otherwise, the balance would be upset, the tension would break.

We talk through other people.

I can’t say, I want to _______ ________.

He can’t say, please don’t  _______ ________.

___

I don’t know why I dump this on him. I don’t know why I choose him. I have always been like this. I choose the wrong people. I intrude. I send inappropriate messages. I do social media all wrong. I do social all wrong.

___

A friend says my Facebook posts are too sad.  I don’t sound right. I am becoming a burden.

“I look at everyone’s Facebook feed,” I tell my husband. “They take vacations. They go to concerts.”

“We can’t do that,” I say. “Because of my medical bills.”

If I die, you can take vacations. If I die, you can live. 

___

I don’t know whose thoughts are mine and whose aren’t anymore.

Do not Resuscitate order

no artificial nutrition order

___

Last year, I got the paperwork to donate my body to a body farm, but I got stuck on one checkbox:

____Trauma and advanced research request: Your initials indicate that you permit your remains to be used for trauma.

“It’s too sad,” a friend said. “Haven’t you had enough?”

“But I’ll be dead,” I said. “Does it matter?”

But it does matter. The act of donation means it matters. I want my body to be a blessing to somebody. Solve a murder, maybe. Put a killer behind bars.

I think of Virginia Woolf’s body, tumbling in the current of the River Ouse after she loaded her pocket with rocks and waded into the water.

I think of Greg, his balloon-animal penis.

Jimmy turning blue in air so cold it crystallized diesel.

I want my death to be a blessing to somebody, but I want it to be a blessing to me, too.

No initials on the ____.

Able in this Diverse Universe contest winners!

I am excited to announce the winners of the Able in this Diverse Universe essay contest!

Dec.1-Feb. 29 an essay contest hosted by Karrie Higgins Able in this Diverse Universe to benefit a boy and his dog

With so many incredible submissions, it was a difficult decision. It moved me beyond words to read so many raw, powerful, emotional, and beautiful essays about the disability experience. Thank you to everyone who submitted. Remember, you are all winners, because each and every one of you helped little Noah Ainslie get his therapy dog!

Without further ado, the winners are …

1st Placejoining a stream, grace is still possible by seeley quest (this essay is not published on the site, but when/if it publishes elsewhere, I will be sure to link it!)

This stream of consciousness essay moves like a literal stream through the topography of the disability experience, cutting through layers of politics, identity, and sexuality. The writing is bold and fearless, with moments so revelatory, they carry away existing assumptions about disability like a flood.

seeley quest lived in the San Francisco Bay Area from 1998 till 2015, and is now in a nomadic period. Sie worked at Cody’s Books and Modern Times Bookstore for twelve years, and often performed around the Bay Area, last featuring in the ’14 LitCrawl. Seeley’s also toured to present in D.C. for the True Spirit Conference, L.A. for Trans/Giving, NYC for the Stages Transgender Theater Festival, New Orleans for Saints and Sinners Literary Festival, and to Vancouver, Toronto, and many other U.S. cities and colleges. Sie has poems published in the book Disability Culture and Community Performance: Find a Strange and Twisted Shape, and issue 2 of of Them: a Trans Lit Journal. More of hir work’s at http://sinsinvalid.org/.

2nd PlaceBeauty in Mind by Sean Mahoney

Beauty in Mind is a fantastically fragmentary, speculative, and gorgeous essay that meditates on how illness both alters the human experience and is part of it. Powerful, haunting passages reveal how illness creeps into every corner of the psyche.

Sean J Mahoney lives with his wife, her parents, two Uglydolls, and three dogs in Santa Ana, California. He works in geophysics. Out-boozed by Franciscan monks in Ireland. Swimming with Whale Sharks in Mexico. Sean believes that punk rock miraculously survives, that Judas was a way better singer than Jesus, and that diatomaceous earth is a not well known enough gardening marvel.

3rd Place: Like Echoes in the Mist by Lizz Schumer

Like Echoes in the Mist meditates on what it means to lose memories to the brain fog of fibromyalgia. Who are we without memory? What does it mean to move through the world as if managing someone else’s life? What does it mean to write nonfiction when memory is slipping away?

Lizz Schumer is a writer, artist and teacher living and working in Buffalo, N.Y. Her work deals largely with the interplay between the personal and universal, and how one’s personal development is influenced by both cultural and environmental factors. Lizz’s writing has appeared on Salon.com, XOJane.com, Thoughtcatalog.com, The Manifest-Station, Wordgathering, Breath & Shadow, Connotation Press, Minerva Rising, Love Your Rebellion and others. She can be found at lizzschumer.com, @eschumer on Twitter, @lizzschumer on Instagram and Facebook.com/authorlizzschumer

___

Truthfully, it was so hard to choose! Thank you again to everyone who submitted!

Prince and the Sparkle Brains (cw: disability, ableism, sexual abuse)

The day Prince died, I was walking to the audiologist office to pick out hearing aids, Purple Rain playing on my purple iPod, my lipstick-red walking cane tapping its drumbeat on the sidewalk, vibrating through my wrist bones to my elbow bones to my shoulders to my clavicles to my brain, telling me: I am whole. Without my cane, without that drumbeat, my brain gets confused: Where is my musical limb?

The cane makes music just for me. When I walk to the beat, I drum to the beat. Doesn’t matter about my hearing anymore. I am a walking musical instrument.

Except it does matter, because certain music saved my life. Certain music still saves my life.

Maybe I can hear Prince like I did when I was a kid, I thought. How much of his music am I missing? What frequency is his voice?

I wanted a purple hearing aid to match my pastel purple and pink hair. Unicorn hair.

Later, in the office, disappointment: hearing aids tiny as earrings, designed to be hidden behind my ear lobe like something shameful, scattered across the desk in colors as dull as thumb drives or computer parts: boring blue, boring silver, boring beige. 

No purple.

Then I saw the flash of red. Hot red. Carousel red. Like Little Red Corvettes for my ears. They will clash with my pink glitter glasses, I thought. They will clash with my mint green cat-eyes. They will clash with my hair. 

“You’re going to want the red ones,” the audiologist said. She was looking at my handmade pageboy hat, white with black vintage typewriters printed on it, the one I sewed because it would make me stand out, the same reason I sew all my skirts, bags, and other clothes. I have to be different. I love to be different. I need to be different.

a pale woman with pink hair stands in profile, wearing a white cotton pageboy hat with black vintage typewriters printed on it.

She pointed to my cane. “You’re a colorful personality. I can tell.”

I smiled.

“The colorful ones aren’t for everyone. But they’re for you.”

___

They are for me.

As a kid growing up with epilepsy, I made myself colorful as a survival strategy.

Age 14, a sharp, distinct, intentional before and after: Before seizures, I was the shy, quiet girl drowning in baggy kitten sweatshirts and Wrangler jeans; after seizures, I showed up to school in fishnets, combat boots, heavy black eyeliner, and dyed red-platinum-orange-pink-black (whatever fit the mood that week) hair. While the other kids whispered Karrie is on drugs, Karrie is nuts, Karrie pisses her pants, Karrie is faking, Karrie is a freak, I said fuck it. I will show them a freak. My clothes got weirder. My writing got weirder. My musical tastes got weirder. My art got weirder. I got weirder.

I didn’t know until years later that Prince did the same damn thing. Prince had epilepsy, too. Prince got freaky as survival strategy.

In 2009, he talked about his epilepsy publicly for the first time on PBS with Tavis Smiley. “From that point on,” he said, “I’ve been having to deal with a lot of things, getting teased a lot in school. And early in my career I tried to compensate by being as flashy as I could and as noisy as I could.”

Prince was a walking disability poetics.

After that, when I listened to his music, I thought: Prince has a Sparkle Brain. 

___

Sparkle Brain. My term for my Epileptic, Bipolar, Chiarian, PTSD-brain–for any neurodivergent brain. Sparkle Brain is big tent. Autistic brains are sparkly. Psychogenic Non-Epileptic Seizure brains are sparkly. Sensory disordered brains are sparkly. Neurodiversity in all its forms is sparkly.

I mean sparkle literally: my brain is extra electric. When my brain lights up, it sparkles like it’s 1999.

But I mean it figuratively, too: sparkly, like a disco ball. A Sparkle Brain is shiny. A Sparkle Brain is beautiful.

Sparkle Brain is my fuck you to neurologists who only see me as broken. My fuck you to editors who want me to cut epilepsy out of my writing because they don’t think it’s relevant, they don’t think it sells, they don’t think it’s sexy. My fuck you to neurotypicals who think I need to be fixed.

Sparkle Brain is Disability Poetics.

___

When I was fifteen, the neurologists told me not to dream big. They said I lacked realism in my aspirations.

scan from hospital chart that says, "may lack realism in her aspirations."

My aspirations: earn a PHD, write books.

Prince is the affirmative defense.

Prince had a Sparkle Brain. Prince dreamed big. Prince made music so sparkly the neurotypicals are jelly.

I wish I had known about his epilepsy back then. As a working class (and often poor) kid with parents who didn’t get it and didn’t have the money or time or education to advocate, pre-ADA, I believed what the neurologists said. Don’t dream big. Don’t dream big. Don’t dream big. I heard it in my head like an ear worm, like tinnitus made of words.

___

Last year, after the largest writing organization in the country, AWP, rejected every single disability panel for its annual conference, I filed an ADA complaint, and the Department of Justice mailed me a letter explaining they lacked resources to investigate. On the second page: a list of assisted living facilities and voc rehab programs.

Go bag stuff at Goodwill, they were saying. They wanted to funnel me into the sub-minimum wage disabled labor pool.

Don’t dream big. May lack realism in her aspirations. 

___

Lately, it’s been hard to love my Sparkle Brain. I am struggling with word-finding, suspected auditory processing disorder, dizziness (hence, the walking cane), falls, eye-tracking problems, tinnitus, more frequent seizures, and fatigue.

When I got accepted into a PHD program, I asked friends for advice seeking accommodations. They said, “Whatever you do, do not use the word ‘cognitive.’ Ever. They will think you are dumb.”

Even among people with disabilities, there’s an ableist hierarchy: So long as your brain is OK, you are OK.

I bought into that shit. I internalized it. I was ashamed.

Once, I told a friend, “I don’t have a learning disability. I have cognitive disabilities.”

Later, when I found out my (maybe) auditory processing disorder is a learning disability, I thought: Will anyone ever believe me about my high IQ? Will people think I am stupid?

That’s internalized ableism, and that’s exactly why I can’t keep this stuff secret and call it self-protection. It isn’t protection; it’s destruction.

What would Prince say? He would say: get freaky with it. Make it shiny. Make it loud. Make it your art.

___

Sparkle Brain is intersectional.

There was a boy I liked in high school. He told people I flopped like a fish. I dragged him by the arm into the hallway and made him say it to my face. He refused at first, and then, cheeks flushed and head hung in shame, he mumbled it.

“Look me in the eye,” I said. “And say it again. I dare you.”

And he did. And I punched him.

Preach whatever you want about nonviolence, but he never said it again.

He got beat up by a girl.

And not just any girl, but the epileptic girl. 

That was survival strategy, too: Defy gender expectations.

Being epileptic was one thing. Being a girl with epilepsy was another. I hated being a girl. I didn’t want to be a boy, but I sure as hell didn’t want to be a girl.

__

Prince in that video for When Doves Cry, the way he crawled across that floor, all lean and sinewy, but soft, tooBoy, girl, it didn’t fucking matter.

___

 

I had sex for the first time when I was eight, or at least that’s the first time I can corroborate. It was 1983. Little Red Corvette was a hit. My brother, the fast-car-driving mechanophiliac was sleeping on our couch.

I was his Little Red Corvette.

___

If you want to get away with rape, rape an epileptic. Nobody believes us. Nobody cares. We are crazy. We are hysterical.

Clippings from my hospital records. They convey an argument between doctors about the nature of my seizures. In large text in the center, it says: suspected hysterical seizure disorder.

We are unreliable witnesses. We have bad memories. We are liars.

___

In high school, a teacher–not just any teacher, but the most popular high school baseball coach in the state, our very own Cedar Rapids, Iowa, version of goddamned Jerry Sandusky–forced his hand down the front of my jeans into my panties, yanked me toward him by my waistband, and whispered so close to my face I could taste his sour breath, “I know things aren’t right at home.”

He said it like a threat. Nobody will believe you. You’re the freak. The epileptic. The poor, white trash. The kid with the father who skids into the driveway in his rusty Chevy pickup, breath reeking of alcohol. I know things aren’t right at home. 

Later, when I overdosed on my epilepsy meds, he sent packets of math homework to the psych ward and refused to tutor me.

Don’t dream big. May lack realism in her aspirations.

When he died and everyone was posting eulogies on Facebook, I spilled it. “I waited half a lifetime to tell this story,” I said, “because none of you would have ever believed it.”

He got a baseball field named after him. I got unfriended.

___

Once, my father heard Darling Nikki blasting from my bedroom, and he called it trash. “No daughter of mine is going to play music like that.”

Music like that. Music that made me feel like sex was OK, that I was OK, that my body wasn’t filthy, ruined, that maybe it even held secret powers, that I knew things the other kids didn’t. That I wasn’t trash.

You have to understand: sexual abuse sometimes felt good. It’s a normal physiological response. I knew stuff the other kids didn’t.

It wasn’t just the lyrics. It was that voice. God, the way Prince could grind with his voice. My father heard a man celebrating a woman grinding. My father heard something threatening to the social order in our house, where he ruled over my mother, my sister, and me with an iron fist and the buckle end of a belt.

That video for When Doves Cry, when Prince pulls his father off his mother. Violence. Sex. Ambiguous gender.

___

Music like that. My father screamed at me when he caught me with my hands in my underpants. I was seven or eight. I had already been to the doctor for unexplained bleeding, unexplained infections. Nobody made the connection with my brother. I was shameful. I was sinful. I got a beating with the buckle end of the belt.

Later, when the truth about my brother came out, my father didn’t believe it. He visited him in secret. A couple years ago, I mapped his criminal traffic violations to prove it. He visited my brother, praised my brother, called him his favorite son.

My father was more disgusted about me touching myself than my brother touching me.

Prince told me, fuck that shit.

___

My brother taught me my value was in my body, in my looks–not my brain.

My father did, too. Once, as the entire extended family watched from the dinner table, he lifted my skirt until my panties were showing, and said, “The boys must like it.”

___

When I got prescribed a walking cane, I read shit like this on the Internet. I thought: I will never be sexy again.

Strangers feel entitled to tell me: You would be so pretty without the cane.

But you know what? Prince had a walking cane. He had a goddamned sparkly rhinestoned cane. And he was still sexy AF, and only liars would deny it.

Prince is the affirmative defense, always.

Prince was a walking, sparkly disability poetics.

___

I have a collection of walking canes now. All loud, all colorful.

___

 

When a fellow Sparkle Brain dies young, I take it hard. Sparkle Brains are 11x more likely to leave this earth too soon. They are more likely to die if they abuse drugs than non-sparkles who do. They are more likely to commit suicide.

The Sparkle Life is a tough life. The Sparkle Life burns out fast, like a high-wattage bulb.

I feel the clock ticking every minute of every day. I swear I even hear it: tick tick tick tick tick tick tick tick tick tick tick tick tick tick.

My first thought when I read Prince died: Did the epilepsy get him?

When I shared this fear with friends, they said things like, “I heard it was a drug overdose.” “He was addicted to painkillers.” “It would be sadder if it were a drug overdose.”

They do not know the fear. They do not hear the clock ticking like I do.

They do not understand: his disabilities cannot be erased. Even if it was drugs, it is still about disability. Pain is disability. Addiction is disability. And epileptics, if they do abuse drugs, are more likely to die young.

___

The past few days, friends have posted tributes: Prince helped them love their broken, weird selves, they say.  It’s beautiful, how he did that. But they leave out his epilepsy, the whole reason he made himself so colorful in the first place. They leave out the disability poetics.

 

___

Prince was intersectional in more ways than one.

As a straight, white woman, my experience of disability is different from an LGBTQA person of color, for a lot of reasons, and I want to be blunt about that, because so often, race, sexual orientation, and gender identity get erased from the disability experience. Prince meant a lot to me, but there were a lot of things he couldn’t mean to me, not like he did to Ekundayo Afolayan or Jack Qu’emi Gutiérrez.

Read those stories. Learn. Do not erase race from the story. Do not erase gender identity and sexual orientation. Do not erase intersectionality.

___

My able friends were surprised when I posted on Facebook about Prince’s Sparkle Brain.

They might have read about it, they said, but they forgot.

But we, the Sparkle Brains, we never forgot. It meant everything.

___

When I got home from the audiologist, the news about Prince broke. It’s too late, I thought. Even with hearing aids, I will never hear him like I used to. It will never be the same. 

But the truth is, I never understood music. I never heard it like other people hear it. In elementary school, when we learned the keyboards, I didn’t understand the scales. I had trouble discerning subtle differences in tones. I memorized finger positions–visually, I mean, like snapshots. I heard notes as beats.

It’s how I process poetry, too. I do not hear stresses. I struggle with scansion.

That’s the auditory processing disorder. The learning disability. The one I refuse to be ashamed of.

The one that means maybe I will always hear the music like I used to. Maybe even with my hearing loss, I am not losing anything. Maybe sometimes a learning disability means you learn things other people don’t.

___

The day after Prince died, I walked with my purple cane and cried and cried, blasting Darling Nikki and Little Red Corvette on my iPod.

I felt the tick tick tick tick tick tick tick tick tick tick acutely. I felt the drumbeat of my cane. I am a walking musical instrument, I thought. My body makes music just for me.

I am making music with Prince.

Lucky to be alive

Content warning: ableism, suicide, sexual abuse

 

___

Last night, a stranger said, “Go kill yourself.”

Does he know I am 4x more likely to do that because of my epilepsy? That my bipolar and PTSD and history of sexual abuse tick up my risk sky high?

Does he know I have already tried?

___

In my newsfeed, headline after headline about Zika and abortion. Sentences like this one: “Zika could easily entrap American women in areas with standing water that breeds mosquitoes, closed clinics, no access to the later abortions a microcephaly diagnosis might require.”

Require.

I have a neural tube birth defect. I have a too-small skull and a screwed-up, epileptic brain. What do able people think should have been required for me?

Able people pretend, Of course we don’t mean you!

But they do. They do.

Before able people know I am epileptic: You are so selfish for not wanting a child!
After able people know I am epileptic: You are so selfless for sparing a child a disability!

It wasn’t that long ago that I could have been locked up and sterilized. In my lifetime, even.

Able people did that. Able people still do that, not with laws but with shame. Instead of locking me up, they tell me it’s so, so good that I don’t want to reproduce.

Which, when you think about it, is a lot like saying I should never have been born. They want me erased from the genetic record. They want me contained, like a virus.

__

I am pro-choice.

I am not talking about choice.

I am talking about how it feels as a disabled person to witness panic about disabled bodies coming into this world. 

I am not talking about the nightmare Catch-22 of being forbidden access to birth control and abortion and being told not to get pregnant.

I am talking about how it feels as a disabled person to witness panic about disabled bodies coming into this world. 

___

You say: But we don’t mean all disabled babies! Zika is different!

Let me repeat:

Before able people know I am epileptic: You are so selfish for not wanting a child!
After able people know I am epileptic: You are so selfless for sparing a child a disability!

It’s not just Zika.

 ___

Ever since I got my walking cane, able people call it a weapon. They joke that I can use it to beat people up. They joke that I should get one with a concealed sword.

I started joking about it, too, even though I don’t think I could beat up anyone with my cane. I need the cane. I fall without the cane.

Still, something in that image of my cane as an open-carry weapon speaks to me. I like the idea of my mobility device as a weapon. I like it because I know, deep down, my basic existence is under attack every second of every day. I am lucky to be alive. I am lucky able people let me be born at all.

 

Extended deadline & lower submission fee for the Able in This Diverse Universe essay contest

If you have been thinking about submitting to the Able in this Diverse Universe essay contest, I have good news. The deadline has been extended to March 31st, and the submission fee has been dropped to $10. EEEEK, what are you waiting for?

Everything else remains the same: submit up to 2,000 words of nonfiction on ableism, disability, access, and overcoming.

I am very open to experimental writing and to non-traditional definitions of nonfiction, so get speculative if you want. Push the boundaries. Or not. Traditional is good, too. I am also excited about diverse interpretations of the themes.

All submissions are read with no identifying information, so don’t hold back. It’s a win-win. Help Noah get his therapy dog, and maybe win a cash prize for your writing, too!

My co-judges are amazing: neuroscientist and writer Dr. Kwame Brown, mental wellness writer and former international model Jackie Cioffa, Art Saves Lives International director and artist Charlotte Farhan. Seriously good people!

For more information about Noah and his therapy dog, or if you are interested in supporting Noah but would rather donate directly, here is the Noah Ainslie’s Service Dog Fund GoFundMe page.

 

Noah kneels on all fours and looks into the eyes of Appa, his white, fluffy, poodle. Click to take you straight to the Submittable.

I carry my brother’s body

White apartment door with a golden letter A door plate. On the left, there is a window and a framed picture (photo taken too far back to make out detail). The lighting is dark, and there is a black ring around the edges of the image.
Photo by the Cedar Rapids Police, taken at the scene of my brother’s death. His front door.

For awhile, I carried my brother’s crime scene photos everywhere. I couldn’t bear to leave them–him–behind. What if our building burned down? What if the earthquake hit? Then I couldn’t bear to carry the physical photos because it could damage them. The police aren’t holding onto those negatives forever. I scanned all 24, saved them to a memory card that I tucked into my purse, and texted them to myself, one by one, over the course of a few weeks.

Scroll through my iPhone camera roll, and there they are: my brother’s apartment door, mixed in with photos of the temple doors in Salt Lake City; my brother’s body in fetal position, jumbled up with downtown graffiti, like I stumbled onto his corpse on the sidewalk.

Ever since the pictures arrived in the mail, I have these panic attacks: What if the police find them? What if they think I killed him? Who the hell stores pictures of a corpse in their filing cabinet besides a serial killer or a cop?

Now that I have them in my phone, the panics are worse. It happened today, on a walk: What if I lose my phone and get arrested for murder? The scenario always ends the same way: my arrest. I am the one on the lam, not my brother. I am the one wanted for a crime, not my brother.

I know it’s not rational: The police released those photos to me. I was 1,915 miles away when my brother died. And he wasn’t even murdered.

Except he was.

On the day I got the photos in the mail, I stripped nude and crouched in front of my couch in an identical position to the one in which he was found, the fetal position, the cops called it. I curled the fingers of my left hand—all except the middle one, which I extended almost straight, as he did in his last moment, one final fuck you on his way into eternity.

I felt that fuck you. I felt it hard.

“Looking at those photos fucked up everything,” I tell my husband. He knows what I mean: the writing, everything. Nothing is the same. I haven’t been the same.

“I’m glad I saw them,” I say, and I mean it. “But I think, finally, I can say I took my research too far.”

I carry my brother’s body around. I carry this secret around. The photos fucked up everything.