Winter Kills

Today is the one-year anniversary of the MRI that diagnosed my syringomyelia.

It was supposed to be a routine checkup after seizures. Sort of. My neurologist got freaked out by my gait, my abnormal smooth pursuit eye movements, my asymmetrical reflexes. She ordered a c-spine. We never did that before — only brain.

The techs blasted Prince into my headphones. In every MRI before — and I have had a lot of MRIs — I dozed off, hypnotized by the clang clang clang and bang bang bang. I slid into the tube expecting a nap. Instead, I panicked. Sometime during the Purple Rain guitar solo, I tried to lift my head. My neck burned like a beheading with a blade of fire. I am paralyzed, I thought. I can’t move my neck. I can’t move my neck. I can’t move my neck.

I kicked my feet. Screamed: GET ME OUT OF HERE. GET ME OUT OF HERE.

I knew. My spinal cord knew. All this time, it had been transmitting coded messages in the strange movements of my eyes, like a political prisoner paraded out on TV. Classified intelligence about a biological weapon implanted in my backbone. My own body turned traitor. This is not a democracy anymore. You do not get to choose. You can’t move your neck. You can’t move your neck.

“Winter Kills” is the soundtrack to the first time I saw the first syrinx in my spinal cord.

Alone, at home, MRI disc popped into my MacBook:

C-Spine MRI scan showing a silvery hole in my spinal cord at C5-T1.

I knew what that hole in my spinal cord was. If you have Chiari like I do, you know.

On TV: The Americans. “Winter Kills” in the background as KGB agent Elizabeth Jennings rifles through her friend Young Hee’s house for the access code to a biological weapon.

“The Day After” episode, when the Jennings family watches a made-for-TV movie about nuclear apocalypse, and they know: they are living, breathing weapons of mass destruction. They are quickening the End of the World.

“I was thinking about not telling the Center about this,” their contact in the bioweapons lab says. “I’d like to make the right decision… Nobody needs this. I don’t trust us with it.”

still from “The Day After” with an orange mushroom cloud blooming on the horizon and cars abandoned on a highway

The Day After was a real movie. I watched it as a kid. I lived in terror of nuclear bombs because, as we were told in school, Cedar Rapids was a prime target:

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

Cedar Rapids, Iowa: land of Rockwell Collins, makers of military aircraft communications and space shuttle parts; Duane Arnold nuclear plant; the bread basket of the nation. The Russians are going to nuke us. The Russians are going to nuke us. The Russians are going to nuke us. Nuclear winter is coming. They drilled it into our heads. The first Wednesday of every month: civil defense sirens. Take cover. 

Same as the tornado siren. I started to confuse tornadoes with nukes. Tornado shelters for bomb shelters. Tornado drills at school with duck and cover.

Later, I thought it was all a lie, but it wasn’t. On maps of a 500-warhead scenario: a triangle marking my childhood industrial wasteland in a flyover state nobody cares exists.

FEMA map of nuclear targets in a 500-warhead scenario and 2,000-warhead scenario

The Day After aired November 20, 1983: one month before my brother Jimmy died. I have always associated nuclear bombs with brother death. And there I was in 2016, in the middle of a resurrection spell to bring my other brother Greg back to life, and I made myself a spine like his:

image from Greg’s VA records indicating severe spinal injury at the same location as my first syrinx He had fusion from C5-6-7 and T1
1984 Doomsday Clock 3 minutes to midnight:
U.S.-Soviet relations reach their iciest point in decades. Dialogue between the two superpowers virtually stops. “Every channel of communications has been constricted or shut down; every form of contact has been attenuated or cut off. And arms control negotiations have been reduced to a species of propaganda.”

Resurrection has consequences.

Tear at me, searching for weaker seams.
I’ll tear at you, searching for weaker seams.

Resurrection and apocalypse. Resurrection requires apocalypse. Resurrection is apocalypse.

2017 Doomsday Clock is at 2 1/2 minutes to midnight:
For the last two years, the minute hand of the Doomsday Clock stayed set at three minutes before the hour, the closest it had been to midnight since the early 1980s. In its two most recent annual announcements on the Clock, the Science and Security Board warned: “The probability of global catastrophe is very high, and the actions needed to reduce the risks of disaster must be taken very soon.”

Nuclear winter is coming.

I am caught in a time loop: Comey canned, the president laughing in the Oval Office with the Russians who conspired to tear at us, searching for weaker seams, hacking intel about our election, turning our own democratic bodies against us.

tick tick tick

 

oracle of flesh and bones: a review of Body Cards by Courtney Putnam

 

Purple Box that says Body Cards: Insight from the Body, Wisdom from the Soul by Courtney Putnam, with the accompanying book and a few of the cards next to the box.

Body Cards: Insight From the Body, Wisdom for the Soul by Courtney Putnam appeared in my mailbox during a time when I would rather do anything than think about my body.

Last May, one month after signing a lease on a new apartment in a new state, my neurologist ordered a c-spine MRI after she witnessed drastic changes in my gait.

Ataxia, she called it. From the Greek: a/”without” + taxia/”order.”

Without order. Disordered.

I showed her my balance test results, ordered by an ENT when he saw how I walked. Diagnosis: abnormal smooth pursuit. 

“Follow my finger with your eyes,” she said.

I did as told.

“Yep. Not normal.”

The month before that: seizures when a new epilepsy med failed. Banged my head hard. “They weren’t like my normal seizures,” I told her. “No aura. Just BAM, down.”

I showed her my dental x-rays, tooth 19 shoved out of place. Told her we got me plastic dinosaur dishes because:

shattered white ceramic plate on a tiled floor

We expected another traumatic brain injury. Instead, the MRI found this:

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

My first syrinx, a hole in my spinal cord. Diagnosis: syringomyelia.

These days, I walk like I am drunk. People think I am drunk. If a cop wanted me to follow his finger with my eyes, he would think I was drunk, too.

My shoulders, scapula, and neck burn. I wake up panicked the bed is on fire. My spinal cord is a lit fuse, tick tick tick to paralysis.

Which at first made Body Cards a scary proposition. I am never not thinking about my body. I have to breakdown the kinetics of every step, like a Muybridge series in my mind.

V0048621 Photographic series showing a nude, fair-skinned woman walking from the side, front, and back. Photogravure after Eadweard Muybridge, 1887
Credit: Wellcome Library, London.

But — full disclosure — I know Courtney from my MFA program in creative writing. I love her art. I trust her heart. I knew I was in good hands when she sent me the cards to try (also full disclosure: I loved them so much that after I left the accompanying book at a hotel, I bought a second deck for myself!).

For Body Cards, Courtney gleans wisdom from years of working with clients as a massage therapist and Reiki Master. Her poetic imagination and deep connection to the body emanate from her colorful collages. The cards are large with rounded corners, printed on a slick, high-quality card stock that is durable and easy to shuffle. Holding them, I sense the care that went into their design.

As Courtney writes in the book, the cards “draw upon the idea that the human body is not a complex organism complete with the powerful ability to heal, but also a tremendous resource for us in terms of understanding our very lives.”

“Your body is your map your muse and your medicine,” she writes.

Cerebrospinal fluid is 99% water, I thought, when I flipped opened the book and discovered those words. Water extinguishes fire. Let’s see what these cards can do.

___

 

I. (No Spread – A test of sorts.)

Cerebellum: Grace

Cerebellum card: in the foreground, a yellow human head bowed humbly with brain hemispheres visible as though an MRI: on one side, a green vine; on the other, atomic nuclear symbols. On the occipital area of the skull, a purple sunburst shape. In the upper right corner of the card is an orange bird. At the bottom in a decorative font is the word “grace.”

For my first reading, I went straight to the cerebellum card. I wanted to see what it brought up, how I connected to it. I have Chiari malformation, a neural tube birth defect that means my skull is too small for my cerebellum, can’t hold it in. My cerebellum has nowhere to go but down down down through the foramen magnum, spilling into my spinal canal. The compression makes me dizzy, makes me stumble, sends me into word-finding spirals, gives me pressure headaches at the back of my skull.

It gave me syringomyelia, too, clogging the flow of my cerebrospinal fluid until it formed little whirlpools inside my spinal cord.

If I could connect to this card, I could connect to the whole deck.

From the book:

Without a well-functioning cerebellum, we could struggle with our balance and coordination … On a metaphorical level, embracing grace means to embrace beauty, love, and forgiveness. What in your life is in need of this humble cerebellum energy?

When the cerebellum card waltzed into your reading, it’s time to seek out grace. First take stock of your actions toward yourself and others. What could use some softening, some lightness, some love?

The cerebellum card asks you to forgive yourself for the times in which you have been a little clumsy.

I forgive my childhood neurologists 100 times a day for never catching my birth defect even though they did a million MRIs for my epilepsy. For calling me hysterical. Which is to say: I haven’t really forgiven, because I have to keep doing it.

Abnormal smooth pursuit of forgiveness.

How do I forgive a whole city? I came here for a fresh start, an education, a chance to show my childhood neurologists they lacked imagination when they said I may lack realism in my aspirations. Every path out of my apartment complex ends like this:

Sidewalk that ends abruptly, turning into an uneven shoulder on a blacktop road. Plants partially block the path on the shoulder. Text overlaid in all caps: YOUR KIND NOT WELCOME

Abnormal smooth pursuit of a way to reach the cafes, the bookstores, the library, the health food shop: people. Humanity.

Every morning, I circle the hospital next door.

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

two laps=one hour

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

I am restless as a clock face.

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

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

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

Twenty-seven years post-ADA. Twenty-seven years post-ADA. I forgive 100 times a day.

I need some kind of prosthetic grace, the grace of a sidewalk. The grace of a car, but I cannot drive. The grace of a bus, but transit is not accessible. The grace of friends who drive in for a visit.

I start to mark off days alone.

calendar from end of June 2016 to March 2017, with days without outside contact marked with a black dot. December 28th and March 22nd had visitors.

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

[I forgive 100 times a day.]

Tinnitus like air raid sirens. I Bluetooth rain recordings into my hearing aids, drown out the alarms.

Recordings are not like real sound, 3d sound, the intonations in human voices. People who get out don’t know that. They think sound is sound, voices on TV are just like real life, but they are not. I am starved for human voices.

“You need to get out. Listen to people. Talk. Hear birds chirping. Airplanes. Car horns. All of it,” my audiologist told me after my hearing tests. “Isolation makes tinnitus worse.”

Can’t think. Can’t focus. I lost the prosthetic grace of my epilepsy medication when we moved here. Traumatic brain injuries, spinal cord like Swiss cheese, the terror of the holes expanding every time I fall fall fall like my brain through the foramen magnum. I lose books and find them again and lose them again. I get voice mails purr purr purr of my vibrating phone and forget until weeks later oh I gotta call them back.

“You need to get out,” my neurologists say. “Join groups. Go to lunch. You need to stimulate your brain. You need to be in novel situations.”

But:

steep concrete staircase leading to my apartment, photographed from the landing looking up

We told the landlords we needed an accessible apartment, told them about my walking cane. They said it would not be a problem.

Get out. Get out. Get out. Everyone told me that in Utah because of the air: smog so toxic it was like smoking  a pack of cigarettes a day. Come to Colorado. Come to Colorado. We have clean air.

I am here. I am breathing your air. Did you know isolation is as bad as smoking 15 cigarettes every day?

[Driving pollutes, but so does not driving. Catch-22.]

Did you know isolation can make you hear things? Make you forget things? Make you doubt things? Make you dead?

I post on Facebook. I sound too sad.  

[I delete 100x a day.]

April sun and medication changes bring mixed mania, mixed mania, mixed mania on rapid cycle. I lash out on Facebook. I fuck up.

“But Karrie,” a friend texts after witnessing it. “You know isolation is illegal in animal experiments, right? Because the animals lose it.”

I have to forgive myself for breaking. Breaking is normal.

[Which means I am not broken. Not yet.]

[27 years post ADA, I learn to take my vitals every day. When my heart is thunkthunkthunkthunk and not beat ___beat ___ beat___beat I know to pull the plug and  _______flat line___________on Facebook, on Twitter, on Instagram so nobody has to see who I am when I am broken.]

I circle the hospital in the morning. I circle the hospital in the afternoon. I circle the hospital all day long.

I am my own metaphor. I think that’s a kind of grace.

I don’t know about forgiveness yet [100x a day].

___

Thoughts after my Cerebellum card test: At first, the connection between the cerebellum and forgiveness frightened me. If my cerebellum is compressed, is my capacity for forgiveness, too? But it wasn’t like that! The cards do not “diagnose” “deficiencies”; they inspire personal journeys. As with many divination decks, they are what you make them. I made them into disability poetics because that’s who I am and what I do.

Courtney suggests wearing magenta or white and using rosewood and ylang ylang oils to stimulate the crown Chakra. Rosewood and ylang ylang! I want to make a hair powder with them so I can catch the scent throughout the day and remind myself of what I wrote. Maybe even to forgive myself.

“Elevate an activity or thing with purpose, meaning, significance and beauty!” She writes. “How might brushing your teeth, doing the dishes, buying groceries, or changing the oil in your car become mindful and enlightening?

Every movement is mindful for me right now, but not in the way she means. My mindfulness is locomotive, automatic, unintentional and sometimes, fear-based. And yet, it has changed how I think about everyday moments. I have started to see the staircase outside my door as my backbone. I was doing that before Body Cards, but now, I am turning it into a conscious meditation on forgiveness. How can I hate this inaccessible apartment, how can I fear those stairs, when they are me? I can forgive this building for being disabled, missing an elevator. (It is disabled like me!) I am it, and it is me. Not sure how I feel about it yet, but it’s a start.

___

Body Cards offers several spreads of varying complexity: Present Moment, Letting Go, Transformation and Chakra. I decided to try “Letting Go.” It’s simple and tells a story.

II: “Letting Go” Spread

Skin, Liver and Finger card in a row, in that order, laid out on a blue background. The Skin card features a human body with a bird head and a green crown stitching together a new skin. It says “renewal” at the bottom. The liver card features a child with arm extended, shooting lightning bolts at a frog wearing a blue crown. At the bottom it says, “regeneration.” The Fingers card features a fairy-like girl hanging from gymnastic rings. There is a bird on either side of her, and the words “Self-Assurance” appears at bottom.

1st card= “The Issue”
2nd card = “What’s holding you back?”
3rd card = “What will help you move forward?”

THE ISSUE: SKIN/RENEWAL: “If the skin has sloughed its way into your cards today, it may signal a time of shedding your attachment to the past.”

Chakra: heart
Color: pink

Pink! I am the woman with the pink hair, pink tennis shoes, pink cane, pink coat, pink suitcase, pink purse. One doctor at NIH, where I am enrolled in a syringomyelia study, even called me the Pink Lady because of all_that_pink.

pink coat, pink purse, pink fluffy keychain and pink wallet on a hotel bed. next to them sits a pink suitcase.

I told my husband the first time I bleached my hair to go full-on unicorn since high school, “If I’m going to use a cane, I am going to be sparkly and unicorn-y.” I searched for canes in pastels far and wide. I embraced them as fashion and mobility aids. I never had a moment of oh this is sad. I shed my old skin.

Or did I? I’ve always been disabled — epilepsy, auditory processing disorder (undiagnosed until adulthood), partial deafness, migraines, chronic pain, a birth defect not diagnosed until I was 39– but it’s always been invisible. People couldn’t see it unless I had a seizure, so they didn’t believe it. “You don’t look sick.”

Was I shedding an old skin or flipping mine inside out, demanding SEE ME.

Pink: heart chakra. Was all that pink because I loved myself or because I wanted to? An armor that said I love me, so you should, too?

WHAT IS HOLDING ME BACK? LIVER/REGENERATION:  “If the liver card is speaking to you today, it is important to listen, for the liver offers an important message about the power of our bodies to heal.”

How can regeneration and healing hold me back from renewal?

Regenerate:
1. verb (of a living organism) regrow (new tissue) to replace lost or injured tissue.
2. Adjective reformed or reborn, especially in a spiritual or moral sense.

Renew:

verb:
1. resume (an activity) after an interruption.
2. re-establish (a relationship).
3. repeat (an action or statement).
4. extend for a further period the validity of (a license, subscription, or contract).
5. replace (something that is broken or worn out).

The first time I saw the hole in my spinal cord, I thought, I did that. I made it. Not my Chiari malformation. Not my neural tube birth defect. Me. Not my DNA. I did. Consciously.

For years, I have been working on a magic spell to resurrect my oldest brother. I call it intentional epigenetics. I am stealing his memories — learning what he knew, doing what he did. Memories have epigenetic mechanisms, which means I am physically becoming him. When I saw my syringomyelia for the first time on an MRI, I knew my magic spell had worked.

My brother had a spine like mine, fused with titanium in the same location as my cervical syrinx, injuries all the way down to where my second syrinx, later discovered at NIH, ends. My brother used a walking cane. My brother’s nerves burned.

Resurrecting my brother, though, means I cannot regenerate my own tissue, cannot heal. A healed body is fundamentally incompatible with his.

[Resurrection has consequences.]

And yet, there is no cure for Chiari-syringomyelia (surgery is not a “cure”), or epilepsy, or central auditory processing disorder, or Bipolar, or migraines, or on & on. Meaning: I cannot hope for regeneration, anyway.

[I circle the hospital in the morning. I circle the hospital in the afternoon. I circle the hospital all day long.]

WHAT WILL HELP ME MOVE FORWARD FINGERS/SELF ASSURANCE:

The first time I visited NIH, a neurologist told me I had thenar wasting. She meant the thenar eminence, muscles responsible for bringing thumb and fingers together: opposable thumbs, the thing that set early humans apart. No more walking on hands.

Thenar: Greek for palm of the hand, sole of the foot.

[Is my cane a leg or an arm?]

One of my syrinxes sits at the spot that innervates the thenar eminence. The signals are cut off, like me where the sidewalks end. [I am my own metaphor.]

The inner “C” between my index finger and thumb burns. Goes numb.

“When you start getting numb there, you know you are in trouble,” my old neurologist said. “That’s your warning signal.”

How can losing my opposable thumbs propel me forward?

I used to hang from gymnast hoops like the figure in the card. I used to pump out chin-ups. Now, I am losing my grip–literally and metaphorically.

This card also signals undue influence from society or family. I wonder about it sometimes, if I am under hypnosis of a kind: you are less than human because you walk on your hand.

I need to shed attachment to the past; my connection to my brother is holding me back, and shedding undue influence will propel me forward. There is something here. I don’t see it all yet. That’s OK.

___

Courtney suggests rose essential oil and pink clothing to stimulate the heart chakra. I wear pink every day. Drink rose petal tea. Mix rose petal infused homemade lotions. Make rose petal jellies and syrups. Grind rose petals into powder for my hair. Fairy dust. I have always done this. Prosthetic heart.

She also provides a meditation: sit in prayer pose and repeat, I trust my heart, I trust my heart, I trust my heart. 

Today, I don’t trust my heart. It is filled with the undue influence of blotted out calendar days and missing sidewalks.

I will try it, though. Not today. Maybe next time the tinnitus gets too loud. Instead of water, I can listen to my voice.

Did you know the word syrinx also means a set of pan pipes, or the vocal organs of birds?

Layrnx card. A profile of a face with closed eyes and mouth open as if singing or speaking. Pink petals emanate from the mouth. Behind, water reflects light. At the spot of the throat where the voice box would sit, there is a dandelion puff. The bottom of the card reads: expression.

___

Body Cards by Courtney Putnam have helped me process a difficult time in my life. Looking back, I think my apprehension was whether cards like this could apply to my disabled body. So many things are made for abled bodies — streets with no sidewalks, sidewalks with no curb cuts, apartments with no elevators — that I get wary of anything “body” related. In a way, though, Body Cards were made for me (or someone like me). After all, Courtney was inspired by her healing work with “disordered,” “ungraceful,” hurting bodies – just like mine. And the cards aren’t the oracle, not all by themselves. The body is, too — my body. An oracle of flesh and bone.

Buy your deck here.

[Full disclosure again: Courtney was kind enough to send me a deck to review as I had been eagerly anticipating Body Cards for a long time, and I loved it so much I also bought a second one when I lost the book!]

Who Killed Virginia Woolf? CW: suicide; ableism; sexual abuse

In response to Amanda Lauren’s XOJane piece suggesting her mentally ill friend’s death was a “blessing.” 

Content warning: suicide; ableism; mental illness; abuse; caregiver abuse; psychiatric commitment; violence; dead bodies

If you are in suicide crisis, please call the National Suicide Hotline at 1 (800) 273-8255.

If you are a victim of sexual assault in crisis, please call RAINN at 800.656.HOPE (4673).

___

The first time it happened, a stranger in Prairie Lights bookstore in Iowa City called me “the second coming.” He was pointing to a display of tote bags and t-shirts printed with Virginia Woolf’s portrait.

Black and white profile photograph of Virginia Woolf. She is seated facing left, with her long hair in a bun at the nape of her neck. She wears a white, long-sleeved dress. Her mouth is closed, face relaxed, and eyes appear almost unfocused.
English novelist and critic Virginia Woolf (1882 – 1941), 1902. (Photo by George C. Beresford/Hulton Archive/Getty Images)

“That could be you,” he said.

He didn’t know I was a writer. He didn’t know I was sexually abused by a half-brother, just like Virginia. That I am Bipolar, just like Virginia. That I have tried to commit suicide, more than once, just like Virginia. 

He meant second coming in body, not mind.

But I saw the dissociation in that portrait, how she floated out of her body. That’s what he sees, too, I thought. He sees I am not all here.

___

“I feel certain I am going mad again,” I say. I am reading Virginia Woolf’s suicide note to my husband, the one she wrote for her husband. I have been studying suicide notes–their art and craft, their rhetorical strategies, what it means to write them, to not write them. 

I feel we can’t go through another of those terrible times. And I shan’t recover this time. I begin to hear voices, and I can’t concentrate. So I am doing what seems the best thing to do. You have given me the greatest possible happiness. You have been in every way all that anyone could be. I don’t think two people could have been happier till this terrible disease came. I can’t fight any longer. I know that I am spoiling your life, that without me you could work. And you will I know. You see I can’t even write this properly. I can’t read. What I want to say is I owe all the happiness of my life to you. You have been entirely patient with me and incredibly good. I want to say that – everybody knows it. If anybody could have saved me it would have been you. Everything has gone from me but the certainty of your goodness. I can’t go on spoiling your life any longer.

I don’t think two people could have been happier than we have been.

“She sounds just like you,” my husband says. “You have said the same words.”

___

I wrote my first suicide note in 1990. Notebook paper, ballpoint pen, folded and hand-delivered to a friend at school.

“Read it later,” I said. She didn’t know it was an advanced directive: no life saving measures.

I wish I had that note now. I want to know why I did it. Or why I thought I did it. Or what I wanted people to think about why I did it.

Who doesn’t remember their own suicide note?

___

Lately I can’t think. I can’t read. My eyes skip around l-t-e-t-ers, fill in blanks like Mad Libs. I am dizzy. I can’t walk in a _______ ______. I stumble with my walking cane like I am ______. All day: an electric hum in my ear. bzzzzzzz bzzzzzzz bzzzzzzzzzz the appliances are talking to me.

“I feel like someone who used to be smart,” I tell an old writing mentor. He says I am still smart, but I think: He hasn’t seen me in a long time, hasn’t read my work in a long time. He doesn’t know. A seizure last winter cracked two molars, knocked tooth 19 out of place. Rattled my brains.

I start books and can’t _________. I start essays and can’t _______. I grind batches of bone black ink that go rancid before I can use them. I can’t control a pen like I used to.

My signature changes every day.

my signature, Karrie Higgins, in black ink on dotted white paper

Look how the line from the H stabs at “Karrie” like a spear. I cross out my own name. Graphologists call it scoring, cutting. It means suicidal ideation, but how can I know, when I can’t control the pen?

I receive radio transmissions from Saturn.

(transcript at link)

Or is it the tinnitus? Or is it a seizure? Or is it mania?

I feel certain I am going ______. I can’t _____ this time. 

___

I’ve a very low opinion of my writing at the moment. This comes of correcting proofs: it’s all bounce and jerk; I want to spin a thread like a spider.

— Virginia Woolf, 5 August 1927,  letter to Vita Sackville-West

___

I can’t sleep without pills.

One blue pill, one red pill. Both are epilepsy medications.

On nights when I swallow my amitryptiline, down down down the rabbit hole I fall, landing at the portal to apartment “A,” where my brother Greg died three days before facing trial for sexual abuse in the 2nd degree.

White apartment door with a golden letter A on it.
crime scene photo, Cedar Rapids Police

I knock.

My brother answers, a Marlboro Red dangling from his lips. He recognizes me even though he hasn’t laid eyes on me for twenty-five years. He smashes out his cigarette, yanks me across the threshold by my wrist. Inside, he pins me against the wall, leans in, licks my teeth the way he always did.

Sometimes, I force my way in. “Shhh,” I say when he protests. “I am all grown up. You can’t get arrested anymore.” This time, I pin him against the wall. I leave the door wide open. “Nobody knows I’m your sister.”

Or it plays out like this: He suspects the cops sent me undercover with a wire tucked into my bra or a transmitter concealed under a tooth cap. I strip out of my clothes, shoes to bra, to prove I am not a secret agent. I open my mouth wide, let him swab my teeth with his index finger and yank on my root canal crowns. He kneels, wraps his arms around my legs, and cries. I stroke his cowlick and whisper, “Don’t kill yourself. Don’t die. Let me save you.”

___

“I am jealous of your tidy ending,” a friend says. “His death was a blessing.”

___

“He wasn’t a suicide guy,” his Airborne buddy tells me. “He would crawl through guts and nails and shit and still keep going.”

In the police report:

police report: Officer Doyle and I did a pill count on Higgins extensive list of medications.

In the autopsy report:

autopsy report scan: whole blood analysis positive for morphine, methadone, gabapentin, diazepam, and desmethyldiazepam, all at non-toxic concentrations.

Cause of death: undetermined. 

In a message from his ex-wife: 

“I can tell you .. that on two different occasions I had found Greg in the same condition, in the same position. Once in our family room.  And the other time in our hot tub building outdoors.   That time I had to call an ambulance because he was unresponsive.  It was in the wintertime, and when they finally got him on the gurney & outside where the air was cold, he started choking, sat straight up & said, “What’s going on?”   He refused to let them take him to the hospital & had to sign a statement to that effect.  I told him the next day I was going to call his doctor about the medications.  And (this is the first time he had ever “threatened” me)  he shook his fist in my face and said “Don’t you dare.  If you do, she’ll stop giving me the pain medications.”

“I know what I’m doing.”

__

 

The police mailed me crime scene photos of my brother’s body.

They let me see the putrefactive decay in his jaw.

They let me see the fixed lividity in his chest where the blood, no longer pumping, pooled like blooming bruises.

They let me see his penis, bloated with carbon dioxide, as ridiculous as a balloon animal.

But not the pill count. They redacted the pill count. Suicide is a medical record.

__

May 15, 1990, in the psych ward after I swallowed all my epilepsy pills, psychiatrists interrogated me for a precipitating event: 

scan from hospital chart that says, "A boyfriend dumped her recently."

scan from medical record stating, “DHS had investigated previous abuse reports and, in fact, Ann Loper had just investigated possible abuse by father the night before her admission.”

medical record: she's had initial insomnia

___

“He could never sleep,” Greg’s Airborne buddy told me. “He was up making peanut butter sandwiches 3 or 4 times a night. He just never slept. That will kill a person, you know.”

“Is there any chance in your mind that he committed suicide?” I spit the words out fast, afraid he will cut me off.

Honey,” he says, “You could have pushed him out of the plane without a parachute, and he would have landed. Your brother was tough. He was a tough man. You couldn’t take the parachute off him.”

He means an Army parachute: Jump School, Fort Benning, 1975, my brother graduated top of his class, Iron Mike Award, the best of the best.

I don’t tell him about the Army records.

October 18, 1976:

Army record of restrictions placed on my brother due to chronic prostatitis: No crawling, stooping, running, jumping, prolonged standing or marching; no strenuous physical activity; no assignment requiring prolonged handling of heavy materials including weapons; no overhead work, push-ups, pull-ups.

March 24, 1977:

Army record of restrictions placed on my brother: No crawling, stooping, running, jumping, prolonged standing or marching; no strenuous physical activity; no assignment requiring prolonged handling of heavy materials including weapons; no overhead work, push-ups, pull-ups.

June 29, 1977, note in the Army medical chart:

Infirmary record: Patient complains of syncope in plane due to harness. Complains of pain in femoral area and desires to be off Airborne status.
Patient complains of syncope in plane due to harness. Complains of pain in femoral area and desires to be off Airborne status.

I don’t tell him I practiced rolling off the couch the way the Medical Examiner described it in the autopsy report. Even the best of the best couldn’t stick that landing. No way he did it doped up on narcotics with a bad back and a bum knee. For weeks, my hips and knees bloomed purple. He got down in that position. He knew he was dying.

Or how, when the crime scene photos arrived in the mail from the Cedar Rapids Police, I stripped nude and crouched in front of my couch in an identical position to my brother’s body, the fetal position, the cops called it. I curled the fingers of my left hand—all except the middle one, which I extended almost straight, as he did in that last moment, one final fuck you on his way into eternity.

___

“What if he did it because he was afraid they would take away his painkillers in prison?”

What if my brother killed himself because he was disabled? 

“That’s a real possibility.”

___

May 18, 1990, movie night in the psych ward.

Molly Ringwald as Lonnie, all ginger bob and pink scars on her wrist, sneaking out her bedroom window with boyfriend Rick. Star-crossed lovers, forbidden.

They ride and ride and ride on his motorcycle, past a car dealership, Pat Benatar soundtrack.

They almost crash head-on into a car.

They almost crash into a train.

“Rick you’re gonna kill us!” Lonnie screams as the train whooshes by.

“We could have kept going,” Rick says. “We could have done it.”

“It’s not that easy, Rick. We could have ended up crippled, or lost an arm or leg or both, and then we’d have to depend on our parents for the rest of our lives.”

It was better to be dead than disabled.

___

 

They sneak into Lonnie’s garage, hot-wire the family car, fall asleep on the front seat.

The next morning, their corpses are whole, beautiful, perfect, radiant, dead. Not disabled.

___

 

old newspaper advertisement for ethanol that says, "When was the last time you heard anything good about carbon monoxide?"

___

 

May 15, 1940, Virginia Woolf’s diary:

An appeal last night for home defence—against parachutists. L. says he’ll join. An acid conversation. Our nerves are harassed—mine at least: L. evidently relieved by the chance of doing something. Gun & uniform to me slightly ridiculous. Behind that the strain: this morning we discussed suicide if Hitler lands. Jews beaten up. What point in waiting? Better shut the garage doors. This is a sensible, rather matter of fact talk.

No, I don’t want the garage to see the end of me. I’ve a wish for 10 years more, & to write my book …

This idea struck me: the army is the body: I am the brain. Thinking is my fighting.

___

The ENT orders a balance test, spinning me blindfolded in a rotary chair in a dark booth. I lose all sense of space and time. I am a paratrooper, jumping from a plane in the dark of night.

“It’s not your vestibular system,” he says. “It’s your brain.”

The army is the body.  

___

It’s not just my brain. I am losing on all fronts.

“It looks like a bullet shot clean through me,” I say to my husband, pointing at the silvery hole in my spinal cord. A syrinx, a cavity, like in a tooth.

Syringomyelia, caused by my Chiari I Malformation. A birth defect, like I was doomed just by being born. My brain is occupying my body now. 

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

The syrinx is a scorched earth campaign, destroying neurons, burning up my spinal cord until it paralyzes me. It could take years. Could take days. I could wake up tomorrow unable to swallow.

I picture a nurse hoisting me into a bathtub, flash to my brother clicking the lock on the bathroom door, unbuttoning my pajamas.

Pistachio porcelain bathtub. Chipped plaster. Calk thick as toothpaste fresh out of the tube.

I am eight years old. David Copperfield is on the television in the living room. Can David do it? Can David Copperfield make the Statue of Liberty disappear? 

My brother’s ribcage crushing mine. His hipbones thrusting against my hipbones, hard as my father’s belt buckle, but I can take it because I figured out how to make pain move.

Straight line from the hole between my legs to the empty socket where my molar used to be. The socket only feels good when I stick my tongue in it. My brother is licking the socket, licking the socket, licking the socket. My tooth socket can take what I can’t.

And then one day it occurred to me that I could show with magic how we take our freedom for granted. Sometimes we don’t realize how important something is until it’s gone. So I asked our government for permission to let me make the Statue of Liberty disappear—just for a few minutes.

I thought if we faced emptiness where for as long as we can remember, that great lady has lifted her lamp, why then, we might imagine what the world would be like without freedom, and we’d realize how precious our freedom really was.

But nobody in that live audience is facing emptiness. People cheer. People applaud. One old lady shouts, “I have never seen a Statue of Liberty disappear like that one before!”

They are glad the statue vanished. They are glad for the empty harbor. Nobody cheers for getting tricked. Nobody wants to be a fool. Which means they believe the statue is really gone. They believe in magic.

They want freedom subject to magical forces.

___

Syringomyelia restrictions: No running, no jumping, no prolonged standing, no strenuous activity, no lifting, no overhead work, no push-ups, no pull-ups. “And no parachute jumping,” my neurologist jokes.

___

My neck burns. My shoulders burn. Vertebrae topple out of place like a Jenga tower. I can’t sleep. Can’t sit. Can’t stand. In syringomyelia speak, it’s called the cape. I call it my parachute harness. I am strapped in. The pain protects me, keeps me from falling falling falling. It reminds me: take my epilepsy meds. It reminds me: walk slow. tick tick tick tick tick goes the bomb inside my spine.  The army is the body.  

The doctors predict my future: gabapentin and morphine. Same drugs my brother took after his spine got crushed making the machines that harvest the corn to make ethanol. When was the last time you heard anything good about carbon monoxide? Down down down down the rabbit hole I will fall, into Apartment A.

Crouched in front of the couch in the fetal position. My birth defect is going to kill me. My birth is going to be my end.

Thinking is my fighting. Thinking is my fighting. Thinking is my fighting. 

___

Tower atop a building with the word WALKER going down vertically and the word CENTER at the base, running horizontally.

I begin to hear voices.

David Copperfield is casting magic spells through the Walker Center Weather Tower.

I think I think I think David Copperfield  cast a spell on my spine.

 

__

My neurologist prescribes me a new epilepsy med. The pill of last resort, I call it. No generic. Poor insurance coverage. Sometimes thousands of dollars for a 90-day supply.

“I am sucking us dry,” I tell my husband. I have no job. No hope of a job. I made $50 last year.

Sucking us dry: that’s what my father used to tell me every time a new hospital bill landed in the mailbox. Now I say it, like something I inherited, something in my genes that makes me turn on myself.

___

I am afraid of being disabled under President Trump.

Do you know what Nazis did to people like me?

They put us to sleep with our own medications. They put us to sleep.

__

“How terrible that you never got to grow up and live your adult life,” an anesthesiologist says, when he asks if I have a ride home from my root canal, and I tell him I cannot drive because of epilepsy.

When the Propofol hits, I feel myself floating out through my tooth socket, the same way I did with my brother, the same way I still do when I have sex. I tug at the oxygen mask, wriggle in the chair. This feels just like—

Baby Grows Up. I despised that doll. She grew when she sucked her magic baby bottle and shrank back to baby size when you yanked a cord from the base of her spine. I knew it was a lie: adults could make you all grown up by sticking things in your mouth, but they could never make you a baby again.

I fed her bottle, yanked her spinal cord, fed her bottle, yanked her spinal cord, over and over like a hex.

___

The dentist stands very clean and impersonal in his long white overcoat. He tells one not to cross one’s legs and arranges a bit under one’s chin. Then the aneasthetist comes in with his bag as clean and impersonal as the dentist and only as black as the other is white. Both seem to wear uniform and to belong to some separate order of humanity, some third sex … These are the people who manage the embarcations and disembarcations of the human spirit; these are they who stand on the border between life and death forwarding the spirit from one to the other with clean impersonal antiseptic hands.

–Virginia Woolf, “Gas”

___

 

“Do you know why I love Propofol?” I tell my husband. “It doesn’t make you high. It doesn’t drag you down. It doesn’t make you feel anything. It’s like the coffin lid slams shut, and–” I snap my fingers. “You’re dead.”

Every time I see the dentist now, I hope for a root canal. I hope for any procedure that justifies Propofol. My dentist is my dealer, and he doesn’t even know it. “If I could buy that shit over the counter,” I tell my husband. “I would have a problem.”

Later, I learn that survivors of sexual trauma are attracted to the dissociative state it induces. I love a drug that feels just like sex with my brother. I love a drug that feels like abuse.

I write Dr. Omar Manejwala, an expert in Propofol addiction. I ask, “Is it suicidal ideation?”

“I think that this is a primitive defense,” he writes back. “It allows for self-denial without the moral implications of suicide.”

___

 

Psychiatric commitment form: Also has repeating nightmare of her own death and she finds a coffin and patient is in it.

___

“You’ll feel it first in your fingers,” the neurologist says, making a C with one pointer finger and thumb and rubbing it with the other.

How do I kill myself if I can’t use my hands?

___

December 1983: My brother Jimmy fired a bullet through his heart. Temperature: 30 degrees below zero, cold enough to crystallize diesel, clog fuel injectors, slow school buses to a creep. Cars were scattered like abandoned toys in the streets, as if the Rapture had translated their drivers straight out of the bucket seats.

At AAA: distress tickets piled up three inches thick. Mom & Pop towing services turned callers away.

Jimmy’s horoscope in the Cedar Rapids Gazette: a phone call brings good news.

Libra: (Sept. 23-Oct. 22): This can be a very rewarding work week. Get a jump on the competition by making a budget for 1984. A phone call brings good news. Your experience saves you time.

His father—his real father, I was told— rendered his tow truck a super vehicle: tank filled with Diesel 1, impervious to cold. All night, every hour on the hour, he flipped the ignition to heat the engine.

Jimmy knew about the pile of distress tickets. He knew his father could save the cars or his son, but not both. He knew, and he pointed the gun barrel at his heart and fired.

Jimmy died because the cars stopped.

(When was the last time you heard anything good about carbon monoxide?)

___

 

Etched into his gravestone: If I go to heaven I earned it; If I go to hell I deserved it.

 

___

“I knew your brother as Jim Higgins first,” his elementary school friend tells me. “Now this is where it gets sketchy because he had his name changed and he talked about him having other toys at his other house so I don’t really remember the details … I think if anything messed him up was a series of name changes because that became a stumbling block for a lot of the kids in our class in fact when we speak of him still we always mention the name changes.”

__

He means when my father rescinded his adoption.

“Why did dad do it?” I asked my mother.

“Child support,” she said.

Jimmy was a burden, too. Jimmy was draining my father dry. 

___

May 20, 1990: a psychiatric nurse told me to be kinder to my father, to show support and love for him, to be reasonable.

scan from psychiatric chart, in nurse’s handwriting, with quote circled in red: “Goals handed in on time. Received a vote of “3” in Levels Meeting. Is going to be more understanding and reasonable with father. Will show support and love for him.”

He knew about my black eye, the one my mother lied about to cover up:

At this time, Karen tries to explain a bruise on Karrie's face. Karen says it probably happened when Karrie had a seizure at school and hit her face on the desk. That Saturday, Mr. Higgins was waving his hands wildly. Karrie stood up and got hit in the face. Mr. Higgins was very upset because a case worker ended up at the house and again, he felt Karrie was the one who turned him in. The case worker came the night before Karrie attempted suicide.

He knew about the cuts all up and down my arms, scoring from dull butter knives I sawed back and forth across my skin.

He knew my father was under investigation for child abuse.

He knew that, and he told me: you are the burden. People who swallow the pills are always the burden.

___

May 20, 2016: I sign a last will and testament. I want my papers in order before I lose control of my hands. I want my father written out of it.

Thy will is not done, I say out loud to my psychiatric chartMy will is done.

___

I message my old writing mentor a letter from Virginia Woolf to Beatrice Webb, April 8, 1931:

I wanted to tell you but was too shy, how much I was pleased by your views upon the possible justification of suicide. Having made the attempt myself, from the best of motives as I thought – not to be a burden on my husband – the conventional accusation of cowardice and sin has always rather rankled.

He messages back with a quote from Christopher Isherwood:

There is one question which we seldom ask each other directly: it is too brutal. And yet it is the only question worth asking our fellow-travelers. What makes you go on living? Why don’t you kill yourself? Why is all this bearable? What makes you bear it? … You did whatever was next on the list. A meal to be eaten. Chapter eleven to be written. The telephone rings. You go off somewhere in a taxi. There is one’s job. There are amusements. There are people. There are books. There are things to be bought in shops. There is always something new. There has to be. Otherwise, the balance would be upset, the tension would break.

We talk through other people.

I can’t say, I want to _______ ________.

He can’t say, please don’t  _______ ________.

___

I don’t know why I dump this on him. I don’t know why I choose him. I have always been like this. I choose the wrong people. I intrude. I send inappropriate messages. I do social media all wrong. I do social all wrong.

___

A friend says my Facebook posts are too sad.  I don’t sound right. I am becoming a burden.

“I look at everyone’s Facebook feed,” I tell my husband. “They take vacations. They go to concerts.”

“We can’t do that,” I say. “Because of my medical bills.”

If I die, you can take vacations. If I die, you can live. 

___

I don’t know whose thoughts are mine and whose aren’t anymore.

Do not Resuscitate order

no artificial nutrition order

___

Last year, I got the paperwork to donate my body to a body farm, but I got stuck on one checkbox:

____Trauma and advanced research request: Your initials indicate that you permit your remains to be used for trauma.

“It’s too sad,” a friend said. “Haven’t you had enough?”

“But I’ll be dead,” I said. “Does it matter?”

But it does matter. The act of donation means it matters. I want my body to be a blessing to somebody. Solve a murder, maybe. Put a killer behind bars.

I think of Virginia Woolf’s body, tumbling in the current of the River Ouse after she loaded her pocket with rocks and waded into the water.

I think of Greg, his balloon-animal penis.

Jimmy turning blue in air so cold it crystallized diesel.

I want my death to be a blessing to somebody, but I want it to be a blessing to me, too.

No initials on the ____.

Able in this Diverse Universe contest winners!

I am excited to announce the winners of the Able in this Diverse Universe essay contest!

Dec.1-Feb. 29 an essay contest hosted by Karrie Higgins Able in this Diverse Universe to benefit a boy and his dog

With so many incredible submissions, it was a difficult decision. It moved me beyond words to read so many raw, powerful, emotional, and beautiful essays about the disability experience. Thank you to everyone who submitted. Remember, you are all winners, because each and every one of you helped little Noah Ainslie get his therapy dog!

Without further ado, the winners are …

1st Placejoining a stream, grace is still possible by seeley quest (this essay is not published on the site, but when/if it publishes elsewhere, I will be sure to link it!)

This stream of consciousness essay moves like a literal stream through the topography of the disability experience, cutting through layers of politics, identity, and sexuality. The writing is bold and fearless, with moments so revelatory, they carry away existing assumptions about disability like a flood.

seeley quest lived in the San Francisco Bay Area from 1998 till 2015, and is now in a nomadic period. Sie worked at Cody’s Books and Modern Times Bookstore for twelve years, and often performed around the Bay Area, last featuring in the ’14 LitCrawl. Seeley’s also toured to present in D.C. for the True Spirit Conference, L.A. for Trans/Giving, NYC for the Stages Transgender Theater Festival, New Orleans for Saints and Sinners Literary Festival, and to Vancouver, Toronto, and many other U.S. cities and colleges. Sie has poems published in the book Disability Culture and Community Performance: Find a Strange and Twisted Shape, and issue 2 of of Them: a Trans Lit Journal. More of hir work’s at http://sinsinvalid.org/.

2nd PlaceBeauty in Mind by Sean Mahoney

Beauty in Mind is a fantastically fragmentary, speculative, and gorgeous essay that meditates on how illness both alters the human experience and is part of it. Powerful, haunting passages reveal how illness creeps into every corner of the psyche.

Sean J Mahoney lives with his wife, her parents, two Uglydolls, and three dogs in Santa Ana, California. He works in geophysics. Out-boozed by Franciscan monks in Ireland. Swimming with Whale Sharks in Mexico. Sean believes that punk rock miraculously survives, that Judas was a way better singer than Jesus, and that diatomaceous earth is a not well known enough gardening marvel.

3rd Place: Like Echoes in the Mist by Lizz Schumer

Like Echoes in the Mist meditates on what it means to lose memories to the brain fog of fibromyalgia. Who are we without memory? What does it mean to move through the world as if managing someone else’s life? What does it mean to write nonfiction when memory is slipping away?

Lizz Schumer is a writer, artist and teacher living and working in Buffalo, N.Y. Her work deals largely with the interplay between the personal and universal, and how one’s personal development is influenced by both cultural and environmental factors. Lizz’s writing has appeared on Salon.com, XOJane.com, Thoughtcatalog.com, The Manifest-Station, Wordgathering, Breath & Shadow, Connotation Press, Minerva Rising, Love Your Rebellion and others. She can be found at lizzschumer.com, @eschumer on Twitter, @lizzschumer on Instagram and Facebook.com/authorlizzschumer

___

Truthfully, it was so hard to choose! Thank you again to everyone who submitted!

Prince and the Sparkle Brains (cw: disability, ableism, sexual abuse)

The day Prince died, I was walking to the audiologist office to pick out hearing aids, Purple Rain playing on my purple iPod, my lipstick-red walking cane tapping its drumbeat on the sidewalk, vibrating through my wrist bones to my elbow bones to my shoulders to my clavicles to my brain, telling me: I am whole. Without my cane, without that drumbeat, my brain gets confused: Where is my musical limb?

The cane makes music just for me. When I walk to the beat, I drum to the beat. Doesn’t matter about my hearing anymore. I am a walking musical instrument.

Except it does matter, because certain music saved my life. Certain music still saves my life.

Maybe I can hear Prince like I did when I was a kid, I thought. How much of his music am I missing? What frequency is his voice?

I wanted a purple hearing aid to match my pastel purple and pink hair. Unicorn hair.

Later, in the office, disappointment: hearing aids tiny as earrings, designed to be hidden behind my ear lobe like something shameful, scattered across the desk in colors as dull as thumb drives or computer parts: boring blue, boring silver, boring beige. 

No purple.

Then I saw the flash of red. Hot red. Carousel red. Like Little Red Corvettes for my ears. They will clash with my pink glitter glasses, I thought. They will clash with my mint green cat-eyes. They will clash with my hair. 

“You’re going to want the red ones,” the audiologist said. She was looking at my handmade pageboy hat, white with black vintage typewriters printed on it, the one I sewed because it would make me stand out, the same reason I sew all my skirts, bags, and other clothes. I have to be different. I love to be different. I need to be different.

a pale woman with pink hair stands in profile, wearing a white cotton pageboy hat with black vintage typewriters printed on it.

She pointed to my cane. “You’re a colorful personality. I can tell.”

I smiled.

“The colorful ones aren’t for everyone. But they’re for you.”

___

They are for me.

As a kid growing up with epilepsy, I made myself colorful as a survival strategy.

Age 14, a sharp, distinct, intentional before and after: Before seizures, I was the shy, quiet girl drowning in baggy kitten sweatshirts and Wrangler jeans; after seizures, I showed up to school in fishnets, combat boots, heavy black eyeliner, and dyed red-platinum-orange-pink-black (whatever fit the mood that week) hair. While the other kids whispered Karrie is on drugs, Karrie is nuts, Karrie pisses her pants, Karrie is faking, Karrie is a freak, I said fuck it. I will show them a freak. My clothes got weirder. My writing got weirder. My musical tastes got weirder. My art got weirder. I got weirder.

I didn’t know until years later that Prince did the same damn thing. Prince had epilepsy, too. Prince got freaky as survival strategy.

In 2009, he talked about his epilepsy publicly for the first time on PBS with Tavis Smiley. “From that point on,” he said, “I’ve been having to deal with a lot of things, getting teased a lot in school. And early in my career I tried to compensate by being as flashy as I could and as noisy as I could.”

Prince was a walking disability poetics.

After that, when I listened to his music, I thought: Prince has a Sparkle Brain. 

___

Sparkle Brain. My term for my Epileptic, Bipolar, Chiarian, PTSD-brain–for any neurodivergent brain. Sparkle Brain is big tent. Autistic brains are sparkly. Psychogenic Non-Epileptic Seizure brains are sparkly. Sensory disordered brains are sparkly. Neurodiversity in all its forms is sparkly.

I mean sparkle literally: my brain is extra electric. When my brain lights up, it sparkles like it’s 1999.

But I mean it figuratively, too: sparkly, like a disco ball. A Sparkle Brain is shiny. A Sparkle Brain is beautiful.

Sparkle Brain is my fuck you to neurologists who only see me as broken. My fuck you to editors who want me to cut epilepsy out of my writing because they don’t think it’s relevant, they don’t think it sells, they don’t think it’s sexy. My fuck you to neurotypicals who think I need to be fixed.

Sparkle Brain is Disability Poetics.

___

When I was fifteen, the neurologists told me not to dream big. They said I lacked realism in my aspirations.

scan from hospital chart that says, "may lack realism in her aspirations."

My aspirations: earn a PHD, write books.

Prince is the affirmative defense.

Prince had a Sparkle Brain. Prince dreamed big. Prince made music so sparkly the neurotypicals are jelly.

I wish I had known about his epilepsy back then. As a working class (and often poor) kid with parents who didn’t get it and didn’t have the money or time or education to advocate, pre-ADA, I believed what the neurologists said. Don’t dream big. Don’t dream big. Don’t dream big. I heard it in my head like an ear worm, like tinnitus made of words.

___

Last year, after the largest writing organization in the country, AWP, rejected every single disability panel for its annual conference, I filed an ADA complaint, and the Department of Justice mailed me a letter explaining they lacked resources to investigate. On the second page: a list of assisted living facilities and voc rehab programs.

Go bag stuff at Goodwill, they were saying. They wanted to funnel me into the sub-minimum wage disabled labor pool.

Don’t dream big. May lack realism in her aspirations. 

___

Lately, it’s been hard to love my Sparkle Brain. I am struggling with word-finding, suspected auditory processing disorder, dizziness (hence, the walking cane), falls, eye-tracking problems, tinnitus, more frequent seizures, and fatigue.

When I got accepted into a PHD program, I asked friends for advice seeking accommodations. They said, “Whatever you do, do not use the word ‘cognitive.’ Ever. They will think you are dumb.”

Even among people with disabilities, there’s an ableist hierarchy: So long as your brain is OK, you are OK.

I bought into that shit. I internalized it. I was ashamed.

Once, I told a friend, “I don’t have a learning disability. I have cognitive disabilities.”

Later, when I found out my (maybe) auditory processing disorder is a learning disability, I thought: Will anyone ever believe me about my high IQ? Will people think I am stupid?

That’s internalized ableism, and that’s exactly why I can’t keep this stuff secret and call it self-protection. It isn’t protection; it’s destruction.

What would Prince say? He would say: get freaky with it. Make it shiny. Make it loud. Make it your art.

___

Sparkle Brain is intersectional.

There was a boy I liked in high school. He told people I flopped like a fish. I dragged him by the arm into the hallway and made him say it to my face. He refused at first, and then, cheeks flushed and head hung in shame, he mumbled it.

“Look me in the eye,” I said. “And say it again. I dare you.”

And he did. And I punched him.

Preach whatever you want about nonviolence, but he never said it again.

He got beat up by a girl.

And not just any girl, but the epileptic girl. 

That was survival strategy, too: Defy gender expectations.

Being epileptic was one thing. Being a girl with epilepsy was another. I hated being a girl. I didn’t want to be a boy, but I sure as hell didn’t want to be a girl.

__

Prince in that video for When Doves Cry, the way he crawled across that floor, all lean and sinewy, but soft, tooBoy, girl, it didn’t fucking matter.

___

 

I had sex for the first time when I was eight, or at least that’s the first time I can corroborate. It was 1983. Little Red Corvette was a hit. My brother, the fast-car-driving mechanophiliac was sleeping on our couch.

I was his Little Red Corvette.

___

If you want to get away with rape, rape an epileptic. Nobody believes us. Nobody cares. We are crazy. We are hysterical.

Clippings from my hospital records. They convey an argument between doctors about the nature of my seizures. In large text in the center, it says: suspected hysterical seizure disorder.

We are unreliable witnesses. We have bad memories. We are liars.

___

In high school, a teacher–not just any teacher, but the most popular high school baseball coach in the state, our very own Cedar Rapids, Iowa, version of goddamned Jerry Sandusky–forced his hand down the front of my jeans into my panties, yanked me toward him by my waistband, and whispered so close to my face I could taste his sour breath, “I know things aren’t right at home.”

He said it like a threat. Nobody will believe you. You’re the freak. The epileptic. The poor, white trash. The kid with the father who skids into the driveway in his rusty Chevy pickup, breath reeking of alcohol. I know things aren’t right at home. 

Later, when I overdosed on my epilepsy meds, he sent packets of math homework to the psych ward and refused to tutor me.

Don’t dream big. May lack realism in her aspirations.

When he died and everyone was posting eulogies on Facebook, I spilled it. “I waited half a lifetime to tell this story,” I said, “because none of you would have ever believed it.”

He got a baseball field named after him. I got unfriended.

___

Once, my father heard Darling Nikki blasting from my bedroom, and he called it trash. “No daughter of mine is going to play music like that.”

Music like that. Music that made me feel like sex was OK, that I was OK, that my body wasn’t filthy, ruined, that maybe it even held secret powers, that I knew things the other kids didn’t. That I wasn’t trash.

You have to understand: sexual abuse sometimes felt good. It’s a normal physiological response. I knew stuff the other kids didn’t.

It wasn’t just the lyrics. It was that voice. God, the way Prince could grind with his voice. My father heard a man celebrating a woman grinding. My father heard something threatening to the social order in our house, where he ruled over my mother, my sister, and me with an iron fist and the buckle end of a belt.

That video for When Doves Cry, when Prince pulls his father off his mother. Violence. Sex. Ambiguous gender.

___

Music like that. My father screamed at me when he caught me with my hands in my underpants. I was seven or eight. I had already been to the doctor for unexplained bleeding, unexplained infections. Nobody made the connection with my brother. I was shameful. I was sinful. I got a beating with the buckle end of the belt.

Later, when the truth about my brother came out, my father didn’t believe it. He visited him in secret. A couple years ago, I mapped his criminal traffic violations to prove it. He visited my brother, praised my brother, called him his favorite son.

My father was more disgusted about me touching myself than my brother touching me.

Prince told me, fuck that shit.

___

My brother taught me my value was in my body, in my looks–not my brain.

My father did, too. Once, as the entire extended family watched from the dinner table, he lifted my skirt until my panties were showing, and said, “The boys must like it.”

___

When I got prescribed a walking cane, I read shit like this on the Internet. I thought: I will never be sexy again.

Strangers feel entitled to tell me: You would be so pretty without the cane.

But you know what? Prince had a walking cane. He had a goddamned sparkly rhinestoned cane. And he was still sexy AF, and only liars would deny it.

Prince is the affirmative defense, always.

Prince was a walking, sparkly disability poetics.

___

I have a collection of walking canes now. All loud, all colorful.

___

 

When a fellow Sparkle Brain dies young, I take it hard. Sparkle Brains are 11x more likely to leave this earth too soon. They are more likely to die if they abuse drugs than non-sparkles who do. They are more likely to commit suicide.

The Sparkle Life is a tough life. The Sparkle Life burns out fast, like a high-wattage bulb.

I feel the clock ticking every minute of every day. I swear I even hear it: tick tick tick tick tick tick tick tick tick tick tick tick tick tick.

My first thought when I read Prince died: Did the epilepsy get him?

When I shared this fear with friends, they said things like, “I heard it was a drug overdose.” “He was addicted to painkillers.” “It would be sadder if it were a drug overdose.”

They do not know the fear. They do not hear the clock ticking like I do.

They do not understand: his disabilities cannot be erased. Even if it was drugs, it is still about disability. Pain is disability. Addiction is disability. And epileptics, if they do abuse drugs, are more likely to die young.

___

The past few days, friends have posted tributes: Prince helped them love their broken, weird selves, they say.  It’s beautiful, how he did that. But they leave out his epilepsy, the whole reason he made himself so colorful in the first place. They leave out the disability poetics.

 

___

Prince was intersectional in more ways than one.

As a straight, white woman, my experience of disability is different from an LGBTQA person of color, for a lot of reasons, and I want to be blunt about that, because so often, race, sexual orientation, and gender identity get erased from the disability experience. Prince meant a lot to me, but there were a lot of things he couldn’t mean to me, not like he did to Ekundayo Afolayan or Jack Qu’emi Gutiérrez.

Read those stories. Learn. Do not erase race from the story. Do not erase gender identity and sexual orientation. Do not erase intersectionality.

___

My able friends were surprised when I posted on Facebook about Prince’s Sparkle Brain.

They might have read about it, they said, but they forgot.

But we, the Sparkle Brains, we never forgot. It meant everything.

___

When I got home from the audiologist, the news about Prince broke. It’s too late, I thought. Even with hearing aids, I will never hear him like I used to. It will never be the same. 

But the truth is, I never understood music. I never heard it like other people hear it. In elementary school, when we learned the keyboards, I didn’t understand the scales. I had trouble discerning subtle differences in tones. I memorized finger positions–visually, I mean, like snapshots. I heard notes as beats.

It’s how I process poetry, too. I do not hear stresses. I struggle with scansion.

That’s the auditory processing disorder. The learning disability. The one I refuse to be ashamed of.

The one that means maybe I will always hear the music like I used to. Maybe even with my hearing loss, I am not losing anything. Maybe sometimes a learning disability means you learn things other people don’t.

___

The day after Prince died, I walked with my purple cane and cried and cried, blasting Darling Nikki and Little Red Corvette on my iPod.

I felt the tick tick tick tick tick tick tick tick tick tick acutely. I felt the drumbeat of my cane. I am a walking musical instrument, I thought. My body makes music just for me.

I am making music with Prince.

Lucky to be alive

Content warning: ableism, suicide, sexual abuse

 

___

Last night, a stranger said, “Go kill yourself.”

Does he know I am 4x more likely to do that because of my epilepsy? That my bipolar and PTSD and history of sexual abuse tick up my risk sky high?

Does he know I have already tried?

___

In my newsfeed, headline after headline about Zika and abortion. Sentences like this one: “Zika could easily entrap American women in areas with standing water that breeds mosquitoes, closed clinics, no access to the later abortions a microcephaly diagnosis might require.”

Require.

I have a neural tube birth defect. I have a too-small skull and a screwed-up, epileptic brain. What do able people think should have been required for me?

Able people pretend, Of course we don’t mean you!

But they do. They do.

Before able people know I am epileptic: You are so selfish for not wanting a child!
After able people know I am epileptic: You are so selfless for sparing a child a disability!

It wasn’t that long ago that I could have been locked up and sterilized. In my lifetime, even.

Able people did that. Able people still do that, not with laws but with shame. Instead of locking me up, they tell me it’s so, so good that I don’t want to reproduce.

Which, when you think about it, is a lot like saying I should never have been born. They want me erased from the genetic record. They want me contained, like a virus.

__

I am pro-choice.

I am not talking about choice.

I am talking about how it feels as a disabled person to witness panic about disabled bodies coming into this world. 

I am not talking about the nightmare Catch-22 of being forbidden access to birth control and abortion and being told not to get pregnant.

I am talking about how it feels as a disabled person to witness panic about disabled bodies coming into this world. 

___

You say: But we don’t mean all disabled babies! Zika is different!

Let me repeat:

Before able people know I am epileptic: You are so selfish for not wanting a child!
After able people know I am epileptic: You are so selfless for sparing a child a disability!

It’s not just Zika.

 ___

Ever since I got my walking cane, able people call it a weapon. They joke that I can use it to beat people up. They joke that I should get one with a concealed sword.

I started joking about it, too, even though I don’t think I could beat up anyone with my cane. I need the cane. I fall without the cane.

Still, something in that image of my cane as an open-carry weapon speaks to me. I like the idea of my mobility device as a weapon. I like it because I know, deep down, my basic existence is under attack every second of every day. I am lucky to be alive. I am lucky able people let me be born at all.

 

Extended deadline & lower submission fee for the Able in This Diverse Universe essay contest

If you have been thinking about submitting to the Able in this Diverse Universe essay contest, I have good news. The deadline has been extended to March 31st, and the submission fee has been dropped to $10. EEEEK, what are you waiting for?

Everything else remains the same: submit up to 2,000 words of nonfiction on ableism, disability, access, and overcoming.

I am very open to experimental writing and to non-traditional definitions of nonfiction, so get speculative if you want. Push the boundaries. Or not. Traditional is good, too. I am also excited about diverse interpretations of the themes.

All submissions are read with no identifying information, so don’t hold back. It’s a win-win. Help Noah get his therapy dog, and maybe win a cash prize for your writing, too!

My co-judges are amazing: neuroscientist and writer Dr. Kwame Brown, mental wellness writer and former international model Jackie Cioffa, Art Saves Lives International director and artist Charlotte Farhan. Seriously good people!

For more information about Noah and his therapy dog, or if you are interested in supporting Noah but would rather donate directly, here is the Noah Ainslie’s Service Dog Fund GoFundMe page.

 

Noah kneels on all fours and looks into the eyes of Appa, his white, fluffy, poodle. Click to take you straight to the Submittable.