… while erasing the reason Greta “is not playing.” Greta is autistic, and she is literally not playing — not playing at looking like a neurotypical. In the autistic community, we call it masking: pretending to understand neurotypical behaviors, hiding our stims, suppressing our special interests, doing anything to not look autistic.
Greta is “not playing” because she’s not masking.
It‘s strange to witness neurotypicals calling it feminist and empowering for an autistic girl to refuse to mask, when so often in real life they shun neurodivergent people for being ourselves — forcing us to mask to fit in.
They label us too angry. They call us blunt. They disinvite us to events and refuse to grant us stage time because we are unpleasant. They call our facial expressions weird and our voices flat. They think we are robotic, unemotional, lacking in empathy. They call us obsessive. They call us exaggerators and confabulators and liars.
Which, if you’re paying attention, are pretty much the same ableist attacks right-wing commentators have leveled against Greta Thunberg.
I get these responses to my social media use in general, too: Why don’t you smile more in pictures? Why do you have to talk about x, y, z? You sound angry (when I’m not) or You’re too weird (OK that one might be true). On & on …
Now I watch as the same people (primarily women, primarily self-identified as feminist) from the lit community who said I could’ve delivered my message in a “more pleasant” tone are thrilled by the brand of activism that Greta brings because it angers men …
… while erasing her neurodivergence to make her more palatable to them.
Never mind autistic people are in greater danger of sexual abuse and violence. Then, when we report that violence, neurotypicals come at us again with the “confabulator” and “exaggerator” labels, so celebrating Greta for “angering men” is not exactly the best take.
It reminds me of what happened behind the scenes with AWP: certain neurotypical activists would egg me on in emails or private messages, celebrating how I refused to package my message “nicely.” Really, I just wasn’t going to lie. One time, in a Facebook discussion thread, a fellow activist said, “I would pay money to get Karrie on the phone with [former director] Christian Teresi.”
As soon as I needed backup, though, POOF. They disappeared and left me to the anger of abled writers & conference organizers. I noticed for all their praise, they stopped inviting me to be on panels. I realized they were, in fact, using me for my neurodivergent traits. So I stopped doing it.
And now — on a much larger scale — I see people doing this to Greta. They want her outspokenness and unsmiling face, but they are too busy erasing her neurodivergence to protect her from the ableist onslaught she is experiencing. Who will be her backup?
I ask you to reflect on this question: If you love Greta so much, what love have you shown autistic activists in your “real life?”
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.
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:
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.
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.
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.
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:
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
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:
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.
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.
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.
“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.
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.
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?”
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.”
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.”
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:
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:
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 TimesModern 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 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:
I am a patient at NIH because of my spine. Imagine seeing that on a Twitter feed run by — who? Doctors there?
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:
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.
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:
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:
On Facebook, abled writers tell me I shouldhave 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.
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.
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.
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:
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.
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.
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?
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.
Deseret Alphabet is phonetic. Translating my brother’s words into it felt like cosmic CPR, giving him the breath of life again.
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.
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.
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.
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.
When I saw the holes on my MRI, same vertebrae:
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:
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:
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:
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.
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.
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:
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.
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.
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:
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.
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:
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:
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.
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.”
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.”
“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.
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:
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.
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:
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:
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.
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.
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.
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.
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:
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:
“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:
“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: 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:
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 —
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:
“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:
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:
The newspapers all that year:
“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.
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:
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.
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:
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.
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.
“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.”
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:
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.