Diagnosis The Land Without Shoelaces and Sharps: Two Misdiagnoses
For seven years, I lived afraid of my own mind, only to learn it had been a mistake.
At least once you should live with someone more medicated than yourself . . . — Bob Hicok, “Bottom of the Ocean”
Alice kept a shoebox full of pills in her bedroom closet, and there were still more orange bottles lined up on our bathroom sink. Every morning and night, her phone pinged with medication reminders, offering convenient checkboxes to mark off her taking the appropriate doses. Sometimes she forgot to click the screen (or did she? she was never sure), and those were the watching days.
We met on our first day of graduate school, orientation as a predictable grey sludge detailing complicated policies that would be only half-heartedly enforced and painful icebreakers—Two Truths! And One Lie!—orchestrated by earnest-faced model students. Alice and I were foils that day: I talked too much; she said almost nothing. After eight hours together at a small, round table, I’d learned only that she preferred Earl Grey tea and planned to attend the optional, informational session the next day.
So it wasn’t a surprise the following afternoon when, as I entered the large university auditorium, I saw Alice curled up in a chair close to the stage. The plush stadium seating was well-arranged and staggered for maximum visibility—it was impossible to feign not noticing her. And so I sat down.
Either I’d arrived close to the assembly’s beginning or I’ve mercifully forgotten what awkward, stilted conversation we shared in waiting. But what happened next is important. The speaker was terrible, and so instead of listening or even pretending to listen, I studied Alice. I observed her rainbowed leopard-print backpack; her small feet, covered only in thin cotton socks; slip-on shoes wedged underneath the chair; thin script tattoos on her wrists. I saw pale scars tracking up the inside of her left arm that matched those on my right.
Though she doesn’t remember this, Alice later told me it was our mutual love of strong, dark tea that suggested to her we would be friends. For me, it was the scars.
When the speaker announced we’d be moving into capital-B Break-Out Sessions according to research interests and resource concerns, Alice and I looked at one another and agreed to slip out while everyone else was regrouping. We walked across the red-bricked campus slowly, the afternoon August sun making us sticky.
“Snow cone?” A smiling man, blonde and wholesome-looking, stood in front of a blue-and-white tent.
“I don’t have cash,” I mock-wailed.
“They’re free,” he answered.
I raised my eyebrows at Alice, and she nodded in agreement.
As another man inside the tent pumped blue raspberry sugar over the shaved ice, the man began his pitch, representing a Christian campus organization.
“Oh,” I said, eyeing my almost-ready snow cone.
“Have you heard of us?” he asked.
“No, no,” I said, looking back at Alice, who was also shaking her head.
“Well—” he began.
We couldn’t bring ourselves to walk away until he had finished his pitch, but politely declined his offer for more information.
Afterward, when our mouths were dyed blue and green (Alice had chosen lime), we agreed the sweets had been an excellent lure and well worth the time.
“Snow cones for Jesus!” We giggled like the new graduate students we were, tired of playing grown-up, relieved to find someone with whom we could drop the pretense.
Even though individuals with mental illness are more likely to harm themselves than anyone else, popular culture and the press often suggest otherwise. Rhetoric and disabilities scholar Margaret Price, when examining media coverage of the Virginia Tech and Northern Illinois University shooters, found that “madness is generally assumed to be the cause of [their] actions.” One of the troubles with this, she concludes, is that it creates a false dichotomy, suggesting “madness and sanity are two extremely separate spaces—one dangerous and one safe.” There is little room for nuance here. We want so badly to be okay. Most distressingly, Price continues, the public often then extrapolates from this separation “that all persons with mental disabilities are potential threats.” It’s not necessary to read academic scholarship to notice this. There are so many examples in more recent news reports following mass shootings and nearly all procedural crime dramas produced in the United States.
When asked about my research into mental health while eating dinner with friends of friends, a man I’d never met before—a massage therapist—corrected my understanding of bipolar treatment. We sat across a wooden, unfinished table, squinting at one another in the bar’s dim lighting.
“SSRI’s are the most commonly prescribed,” he said.
“I often see people getting put on medications like Abilify—antipsychotics,” I replied.
“No, that’s not true.” His tone was flat.
How to respond to that? I put an unreasonable amount of arugula in my mouth. “Mmmmm,” I said.
He was young and handsome (predictable blonde curls and blue eyes), and I was unwilling to stand on my seat and testify: I have never been prescribed an SSRI for bipolar disorder, and I have been prescribed a hell of a lot of drugs. No one I know has been prescribed only an SSRI for bipolar disorder; it can make a person manic.
Despite my lived experience and book-knowledge, I can’t completely override the hours of Law and Order and Criminal Minds I’ve pumped into my brain.
Two weeks after the rash of school shootings in October, 2015—Umpqua Community College in Oregon, Northern Arizona University, Texas Southern University, and Tennessee State University—an unfamiliar student walked into my classroom. His dark hair, heavy with grease, covered his face like wet palm fronds. A black t-shirt hung off his bony clavicles. He kept his eyes and head down and his mouth moved without sound; he ignored my too-high pitched, “May I help you?”
For the half-minute this man moved through the classroom, I panicked. My thoughts skipped and sputtered. Maybe because we don’t recognize him we’ll be safe? Do any of my students recognize him? Why have I never programmed campus security’s number into my phone? After he left without acknowledging anyone, my stomach loosened itself and dropped.
The students snickered. “What the fuck was that?” they whispered.
Irritated with myself, I wanted to shush them like errant children.
It’s possible the man was just hungover. I would like to say I’ve never looked so frighteningly out of place as he did that day, but this is untrue. I’ve just tucked the memories away—the hours I’ve sat in crowded rooms, drumming my fingers on tables, bouncing my legs up and down, muttering, an obvious show of fiending; vomiting while walking across neon-green suburban lawns; passing out in stockrooms in the middle of afternoon work shifts; walking up to people in their cars to say their gas gauge was open only to watch them recoil from my body, the metal in my face and my badly-dyed hair, like I was dangerous.
The first night of our out-of-work-friendship began when I invited myself to Alice’s apartment with a dish of eggplant parmesan. A chunky black cat twined around my legs before hurling herself into my lap as Alice and I watched Ghost Hunters.
“Why is he speaking English? Aren’t the ghosts German?” I asked.
“Medieval German, too.”
“Must be why they’re not appearing.”
“The language barrier. Obviously.”
We ended the night on her balcony exchanging stories. Alice told me about her first kiss, which took place—here’s Hicok again—
where windows are mesh and what’s sharp is banished and what can be thrown is attached so unless you can lift the whole building everyone is safe.
I knew the setting well. We laughed hard together, our breath white and cloudy with cigarettes and the Midwest weather just starting to turn at night.
As the year closed, my relationship with the man I lived with unravelled quickly. In a fit of serendipity, Alice’s then-roommate broke the lease and returned home, leaving her with an extra bedroom that needed filling. I emailed Alice during the holidays: If I leave him, can I move in with you? She said Yes, and one month later, I showed up at her door with only ten minutes notice, not speaking, eyes full. She lent me a pair of pajama pants with blue-eyed cartoon leopards, drove me to CVS to buy a toothbrush, and her home became our home.
My bipolar I diagnosis began in a locked state psychiatric hospital, and what terrifies me most about a label of mental illness is the possible removal of agency. Once considered unsound of mind, all protestations to the contrary are further evidence of delusion or instability. The deadbolt turns another click.
The fears that surround mental illness, Price argues, result in a culture where people “are stripped of their rights and further stigmatized, and the very real violence . . . they face is ignored.” Michel Foucault writes, “Our society does not wish to recognize itself in the ill individual whom it rejects or locks up; as it diagnoses the illness, it excludes the patient.” To see ourselves in others is terrifying because it suggests we must be kind, always. Instead, the stories play out, familiar and comfortable: the trope of the unbalanced artist, the narrative of overcoming, the sick as a recipient of charity who provides an uplifting moral lesson.
This isn’t to say I’m any more evolved. After visiting the land without shoelaces and sharps, I became fearful, doing anything I could to ensure I’d never return. I took the pills, learned to cook French toast and clean the shower grout, attended behavioral therapy, re-enrolled in school, and tucked and picked and shaped myself until I resembled what I believed passed for a Real Girl, a sane woman. I took a story for myself and held my pose, like a sculpture, terrified that my body would give me away.
Soon after I moved in with her, I learned how sad Alice could get and how the winters made it worse. On cold mornings, I crawled into her twin bed, pushed aside her two cats and hound dog, rubbed her back, made jokes about playing pet Tetris, and cajoled her into getting up for work. During the day, she sometimes disappeared—in the middle of classes, during meals and television shows—for ten-minute intervals, returning with red eyes and a stuffy nose. Expressing concern made her weeping markedly worse; the best thing to do, she said, was to pretend like it wasn’t happening. So I made stupid puns and complained, usually about the cold weather or our coworkers, until she laughed.
Alice had been diagnosed with depression at a young age, but while we lived together this was amended to bipolar II, which offered her hope because different medications are often used to treat the diagnoses. It seems her misdiagnosis is not an uncommon one; bipolar disorder often first manifests as a mood swing down into depression. Alice was prescribed one drug. Then another, in tandem. Then off one, on another one. Then again. She named the Pokémonin her video games after psychotropic medications, enjoying the battle script: Depakote used “stun!” It’s super-effective!
Trying to find the correct psychiatric medication can be a time-consuming and difficult process because the pills take a few weeks to build up in the body and start working their neurotransmitter magic. Every headache, every yawn is a possible side effect; every mood change is subject to a question of causality. Alice slept an incredible amount, what seemed like ten or twelve hours for every twenty-four, could nap whenever and wherever—a less claustrophobic and better-tempered version of the roommate in Hicok’s poem who is
. . . sealed in amber, a caul of drugs meant to withstand ants and fire [.]
Outside the apartment, we carried on. I taught a course in which we read texts about ethnicity, gender, sexuality, ability, class, age. I never announced to my students that I took a diamond-shaped pill every night before bed to ensure that I would return to them each week. Winter turned into Spring, then into Summer, and after holding the posture of Real Girl for such a long time, I grew tired. What if everyone was wrong? The doctors, my family, my friends, me? I asked Alice. I’d been diagnosed so young. I went to a doctor and began the six-month process of weaning off the bipolar I medication I’d taken every day for seven years.
The last few months were the hardest. The body reacts badly to withdrawal. After each dosage decrease, I’d spend two weeks like a simmering pot of water, the slight tremor in my hands growing at the effort of holding directionless rage inside my skin. I slept little and threw up my meals from a mix of debilitating anxiety and a grasping at control over my body. I wept. Alice drove me home, made me coffee, told jokes, and in December it was finally over. Unlike the roommate in Hicok’s poem who
. . . because he’d not taken the microwave apart and strapped its heart to his head or talked to the 60-watt bulb on the porch he thought he was better and flushed his pills . . .
and ended up back in a psychiatric facility, my body righted after my brain adjusted to its new balance. I was pronounced misdiagnosed.
In our apartment, Alice and I sat on her blue futon, her legs crossed beneath her, mine up on the coffee table. For the first time in my adult life, I was free of medication. Alice picked her lips and played a mindless counting game on her computer while I babbled, interrupting both her and myself, trying to make sense of my transport back into Susan Sontag’s kingdom of the well. It had been a tiring season for both of us.
“Do you think I could make myself”—I made air quotes with my fingers—“‘crazy’ again? Or this is it, I’m just done and safe forever?”
“I mean,” Alice started, “I’m sure you could do things that would wreck your life like—”
“Getting strung out again?” I offered.
“Or deprive yourself of sleep, or stop eating.”
“For example,” I said.
These were the circumstances of my teenage years: dangerous and impulsive. A study published in the Journal of Clinical Psychiatry in 2008—one year after my diagnosis—found that of large a sampling of psychiatric outpatients, about 20% had been diagnosed at some time with bipolar disorder. Of that 20%, fewer than half met the criteria for the illness when reevaluated by physicians. The authors called this too-liberal identification of the illness “an overdiagnosis,” a pushback and overcorrection from the earlier movement of frequently confusing bipolar II with depression, that same trend that had swept up Alice when she was a child. Add a young woman with a nasty drug habit of stimulants to the mix, and perhaps it’s easy to see where I fell in. Anecdotally, several fellow ex-junkies have told me similar stories—how the effects of their drug abuse were conflated with an underlying mental illness.
For seven years I’d lived afraid of my own mind, both what it was capable of and what others would think and do if they found out about it, only to learn it had been a mistake. An error. Disability scholar Lennard J. Davis furthers Foucault’s claims about society’s distancing itself from the ill to say, “in a society where the concept of the norm is operative, then people with disabilities will be thought of as deviants.” I’d consider flipping that last part around, too— in a society where the concept of the norm is operative, those who deviate from its expectations may be (mis)diagnosed as sick. I still don’t know what to do with this, about this. And it is because of my uncertainty I kept the story tucked into a knot somewhere beneath my left shoulder blade.
Alice and I both graduated from our program and moved out of state—her to North Carolina for work and myself to Florida for more school. We met again at a writing conference where we shared another apartment and tried to attend a Bob Hicok reading. Our plans failed miserably. I ran late, and Hicok didn’t show—a family emergency. Alice slunk out as surreptitiously as possible (she still has that rainbow leopard print backpack) once his cancellation was announced.
She found me later and joked, “I’d postponed a nap for this.”
I once told her a secondhand anecdote, passed down to me from another writer, of Hicok refusing to give a reading in a crowded, underground bar. The story goes that Hicok arrived, saw the tightly-packed mass of people, and promptly exited. What courage it takes to say, This is too much. What courage it takes to leave.
Later that night, after the failed reading, Alice and I talked about passing and responsibility, about the roles of the artist—what they were, exactly; how to best work and produce in an ethical and responsible manner; where to find community—endless questions with no definitive answers for either of us. Her contributions to mental health happen at work. I still do not fully understand this facet of myself, a woman who is no longer ill, was really never ill to begin with, but was told and believed she was. Three years later, I am imperfect, but I am well. To go back to Hicok one last time:
. . . I learned you can sit with someone who’s on the bottom of the ocean and not get wet
but my clothes are stiff like they’ve been dipped in seawater, and there are strands of kelp still knotted in my hair.