I didn’t plan to go to my brother’s grave on the Challenger anniversary. My husband and I traveled to Cedar Rapids for my Aunt Joann’s funeral and my appointment with a geneticist.
We had very little time — only a few minutes — and we had to sneak to the cemetery without telling my family. I needed to be there alone. I needed to process it without the sibs or my father.
Except I can’t go there alone, not really: no buses reach it; I can’t drive. My brother’s grave is unreachable except by car. Even grief rites are inaccessible sometimes.
As we drove toward the cemetery, we passed Prairie High School, and I gasped. “We are in the territory of my brother,” I said. “This is the land of Greg.”
He lived near Prairie High, attended Prairie High. I lived to the north, attended Kennedy. We had different geographies. Sometimes it didn’t feel like we came from the same city.
When we turned onto Highway 30 and passed the ADM plant, I said, “This is the land of my father.” It’s where he worked my whole childhood.
It was the land of Greg, too. “My brother had his first life-changing injury there.”
I have always felt like that factory ate my brother.
“Watch out for the fog. It creeps over the highway and causes accidents. That ethanol factory eats cars.”
It felt like the ADM plant was standing sentry. Or maybe my father was. I always feel like he is there, at ADM, watching.
When we turned into the cemetery, I found my brother’s grave without even having to wander.
It felt like somehow I had always known where he was.
It was cold–not just any cold, Iowa cold. My hands froze so badly I could not control them at the end of the shoot, when we returned to the car so I could change my skirt and wig to rush to my mother’s apartment. I couldn’t open the wig bag or slide the cap over my head. My fingers refused to grip. I cried. I needed to get that red wig off me. It’s the hair I associate with Greg. It’s a secret. The skirt, too.
My joints hurt. They were all out of place. The pose caused subluxations in my ankles and knees from my newly diagnosed Ehlers Danlos Syndrome. It’s excruciating to stand and balance like that for my ataxia & syringomyelia, too. That’s why I chose the pose: it puts me in Parallel Stress (see my other images in this series at this link).
We had to hurry so nobody would wonder where we were. I didn’t have time to process it. I am still processing it.
The last time I saw my brother alive: Challenger.
The first time I saw his grave: Challenger.
That I have to keep my grief secret: obviously a major malfunction.
In college, I lived in the Foreign Language House, a special wing of a dormitory dedicated to students who wanted to practice a foreign language every chance they got. It was a close-knit group, and activities like naked Star Trek — which, as a survivor of sexual abuse, I had way too much body shame to participate in — were the norm.
One of the guys there gave massages. He was a good friend, and I trusted him, so when he offered, I said yes.
I don’t remember a lot about before & after, but I remember his hands slipping around my ribcage and touching my breasts. I remember his fingers sliding under my bra band and into the waist of my pants. I remember freezing. I remember being afraid to tell him to stop because he was a friend, and I didn’t want to hurt his feelings.
Never mind it triggered memories of my brother’s grooming, hands slipping up the front of my shirt “on accident” while wrestling. Never mind I felt violated and used. I thought he was a friend. It was normal in Foreign Language House for people to touch each other — hugs, hand-holding, cuddling under blankets — and I had no reason to think a “massage” meant “sex.”
I want to say I pushed his hands away, but I don’t remember.
I want to say I told him to stop, but I don’t remember.
But I remember the aftermath. The aftermath was the worst part.
A woman moved into my dorm, and I warned her about the massages. I told her to watch out because you think it’s just a massage, but then he gropes you. “His hands start sliding under your bra,” I said. “If he offers, don’t do it.”
He had visited the room a few minutes before to introduce himself. I saw how he was looking at her, and I didn’t want it to happen to her, too.
I didn’t know I was participating in the whisper network, in which women warn each other about men who violate them.
And I didn’t know he was lingering outside the room, listening through a vent.
Later, he confronted me. “Sounds carry through those vents,” he said. “I heard you.”
He accused me of violating him. Hurting his feelings.
I wanted to ask how come he lingered outside that room. Was he worried I might warn her? Did he know he had done something wrong? I was too flustered with shame, too afraid of hurting his feelings again.
It was never the same after that. Friends stopped saving me seats in the cafeteria. I had hurt their friend’s feelings. He was such a nice guy. How could I even think he would grope me?
Nobody asked about my feelings.
Nobody asked if I was OK or why it bothered me or what happened.
It was just like my family all over again: shhhhhh, keep things our little secret or else.
And it worked. The shaming worked. I started to think I had done something wrong.
Last night, I learned my husband (then an acquaintance) was on the other side of all this. He had to listen to this guy complain and whine about his hurt feelings.
“I explained to him over and over why he was wrong,” my husband said. “He wasn’t having it. To him, you were getting in his way, spoiling his chances to pursue other women.”
I left the dorm not too long after. He stayed. He got me out of his way.
Last week, I was talking to a friend about dropping out of my PHD program before I even began. “Honestly, I think it’s the best thing,” I said. “I would probably be in bipolar crisis if I had done it.”
My friend nodded. She’s disabled, too. She gets it. We both earned Masters Degrees. We both got sick, faced hospitalizations, survived manic episodes and more — all while trying like hell to churn out good work and not scare off our classmates and professors.
When I said, “I would probably be in bipolar crisis,” I didn’t mean I couldn’t do a PHD program. I meant PHD culture is toxic to people with disabilities. Before I delayed my admission (and later dropped out), I had pursued accommodations for my assistantship. At one point, Human Resources point-blank asked me how I ever expected to work in academia given my limitations & needs. When I said I had no intention of ever pursuing a career in academia, they were relieved. “You are much more likely to get the accommodations that way,” I was told.
As a novelist, attorney, freelance writer, and former law professor, Dr. Pryal became a major voice for disability rights in higher education after she took a sabbatical from teaching and spoke up about her mental illness in the Chronicle of Higher Education:
But I feel anxiety for another reason as well. I have a psychiatric disability—that is, a mental illness—that I’ve kept secret since I was diagnosed at the age of 21. So when the teaching evaluation called me “emotionally eratic,” I feared that my supervisors would believe the words. And, despite all evidence to the contrary, I feared that Mr. Eratic might be right.
Mostly I feared that everyone at work would learn about my secret disability, and that I would get fired because of it. I feared I would be seen as unreasonable, irrational, and therefore unable to do the work required of a professor. Because of my disability, my career would be over.
Much of Life of the Mind Interrupted draws from her columns in the Chronicle, as well as other essays, with updates and expansions. Covering everything from the tenuous, terrifying tightrope walk of adjuncting-while-disabled to practical advice for classroom accessibility, Dr. Pryal not only dismantles academic ableism; she makes the case for how easy it is to be accessible — and how it benefits everyone.
In “Disclosure Blues: Should You Tell Colleagues About Your Mental Illness?,” she writes about Elyn Saks, a professor at University of Southern California who gave a TED talk about disclosing her schizophrenia:
Sak’s advice is written from the position of a tenured professor, with great academic privilege, the most important one being near-bulletproof job security. But there are other privileges that come with the type of job she holds. For example, she gives the following advice to professors with mental illness: “Schedule your courses carefully. If your meds make you tired in the morning, try not to teach morning classes. Try to choose courses you like to teach — you will do a better job and feel less stressed.” As any contingent professor knows, we often choose neither our courses nor our class meeting times.
The first time I sought a scheduling accommodation as an adjunct, I lost my job. I was teaching online, and each class included a live weekly webinar. I always selected sections with daytime or early evening webinars: late nights = seizures. When the department overhauled the scheduling system, instructors lost control over seminar times, and I was forced to seek accommodation.
My department’s response? Tell fellow faculty about my epilepsy, beg for a daytime seminar, and hope for the best.
“That is not how accommodations work,” I told my department director. “I shouldn’t have to expose my private medical information to colleagues.”
Epilepsy comes with serious stigma: People think you are devious, crafty, lazy, dishonest, and dangerous. They doubt your intelligence, too (never mind intelligence is itself an ableist measure.) I’ve been called “idiot” or the r-word a lot when people find out about my seizures.
My director fired back. “You never told me you were disabled before.”
I wasn’t fired. Oh no, they knew enough not to outright can me. Instead, they withheld information, resources, and student contact lists, making it impossible to fulfill my duties. If I emailed my director with a question, he would critique my email instead of answering. “Learn how to write shorter emails,” he quipped once, after I sent him two paragraphs detailing a complex & urgent issue with a student. He was calling into question my competence, just as I had feared.
The saddest thing? None of it had to happen. The original scheduling process was accessible: We chose our times and that was that. No scheduling accommodations needed.
And that is a key point of Dr. Pryal’s book: accessibility and accommodations are not the same thing:
But the accommodations model requires us to disclose our disabilities, it requires us to explain, to give up secrets we might not want to share. The accommodations model depends on invasions of privacy to work.
Accessibility, alternatively, means that a space is always, 100% of the time, welcoming to people with disabilities. Accessibility means that ‘accommodations’ are integrated into a space and are not particularized to an individual–but rather created for our society as a whole. We, as a society, are disabled people. Therefore we, as a society, build spaces and procedures for disabled people.
It really is that simple.
And she shows how simple it can be with her “universal design alternative to the whiteboard,” in which she projects a blank document from her laptop onto a projection screen and writes a daily “class record.” Each week, she saves the file and emails to the entire class. “And my students really got into it,” she writes. “‘Put that on the class record!’ they would request during class, when I said something they found particularly helpful.” This was all in response to a student who couldn’t see the whiteboard and requested lecture notes in PDF. Accessibility benefits everyone. No barriers. No documentation. No invasion of privacy.
That last bit is key. Remember I mentioned my PHD assistantship accommodations? To get those, I not only had to declare I wasn’t pursuing an academic career; I had to turn over medical records and discuss — at length — my mobility limitations, mobility aids, and medication side effects. The medication side effects turned out to be more important than my actual disabilities: Side effects are easier to understand, easier to “prove,” and easier to accommodate. It was awkward and invasive. I felt like I was talking to a medical assistant, not my HR department.
As Dr. Pryal writes, “we cannot ignore how race, gender, socioeconomic, and other kinds of privilege affect how people with disabilities live and work.” In “Shattering the Madness Monolith,” she shares stories of academics with diverse identities. One of them, speaking under the pseudonym “Annie,” reveals how she struggled to receive medical treatment as a Chinese-American woman, with one doctor even telling her “it was normal for Asian women to be anxious and stressed out, and anxiety was causing my abdominal pain.”
Probably my favorite essay is “Breaking the Mad Genius Myth,” about Kurt Cobain and the romanticization of mental illness as “genius.” Of all the myths about mental illness, this one has done me the most harm: Bipolar robs me of credit for all my hard work. Don’t ever take medication, people will say. It will ruin your writing. They are wrong. As Dr. Pryal argues, creative people are more productive when their psychiatric symptoms are under control. For years, I bought into the myth, though. I believed medications dulled my shine. Now I know better, but I still have to listen to people deny my hard work and praise my epilepsy & bipolar as “genius.” At the same time, literary colleagues have outright accused me of exaggerating my experiences because they perceive me as “that unreliable crazy person.” That’s the problem with “mad genius.” It’s inherently “unreasonable,” as Dr. Pryal points out. The whole “genius” of it lies in being beyond “normal” reason.
While the myth of the “mad genius” romanticizes mental illness, the taboo around suicide & suicidal ideation is strong as ever. As Dr. Pryal writes in stunningly honest, heartbreaking prose, “Suicide didn’t almost kill me. The taboo did.” Taboos make us keep secrets. Taboos keep us from seeking help. Taboos keep us from asking for what we need.
Now imagine your career depends on living the “life of the mind” and you’re suicidal.
Ultimately, the reasons I couldn’t do my PHD program came down to the smallest things: I needed Paratransit; it’s not included in the student bus pass and too expensive. I needed a part-time load; part-time is not allowed. Other things, too. Along the way, as I delayed my decision, more than one doctor told me, “I’m worried about you doing a PHD.” One went so far as to say, “Don’t do it.”
“It will throw you into bipolar crisis,” she said. “I see it all the time.”
Which is why I am recommending Life of the Mind Interrupted to everyone.
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:
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.”
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:
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.
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.
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:
We expected another traumatic brain injury. Instead, the MRI found this:
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.
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.)
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:
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.
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.
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.
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.”
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.
[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
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.”
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.
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?
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.
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?
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.
[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!]
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.
“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.
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.
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.
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:
In the autopsy report:
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:
“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:
March 24, 1977:
June 29, 1977, note in the Army medical chart:
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.
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.
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.
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.
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.”
“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.
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 bereasonable.
He knew about my black eye, the one my mother lied about to cover up:
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 chart. My 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.
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.