You have to write a book about your family, she said during lunch at the airport chain restaurant where we were waiting out our mutual flight delay. We’d only known each other a few days since meeting at a literary festival in the midwest, but I already loved her. Both of us were being honored with book awards, hers in nonfiction and mine in poetry. She was so sure of everything she said that it felt important to follow her reasoning wherever it took us. I’ve thought about it before, but it feels like there’s too much to say, and I don’t want to get any of it wrong. I told her stories about the house where I grew up and its hold on me, on everyone who’s ever lived there. How none of my mom’s six siblings live more than an hour away. How everyone is close enough to return constantly. What happens when they do.
She spent her childhood in Manhattan and Brooklyn before leaving New York for the Iowa Writers Workshop and then a string of adventures across the prairie, eventually landing as a tenured professor at a midwestern MFA program. She is my mother’s age and interested in me intently, wondering, like many people over the weekend, why I never earned an advanced degree. You have so much to give as a teacher. You should apply again, in nonfiction this time. You can write the book about home as your thesis.
Our flight was taking us to Chicago, where I’d meet my partner, Daren, for a week’s vacation at his brother’s new house there. She was connecting to another flight back to the college town she’s lived in for decades, teaching and writing, far from what she truly considers home. She gave me the hard-sell on her interim city since we met on the first drive from the airport, chauffeured by undergrads to our hotel and then a welcome dinner. Your boyfriend could come with you and open a bar. The two of you could afford to buy a house. It sounded like a much bigger, but somehow simpler life than the one I have in Boston. I wanted it to be exactly that easy: to pick myself up and slide me into somewhere ready-made for my own reinvention.
All of the other prize-winning writers in attendance had advanced degrees, not all of them in writing. A psychiatrist poet, a doctor-lawyer-fiction author combo, two graduate creative writing professors including my new friend, both with more than half a dozen books each, and me. The weekend reminded me of how rarely I get to talk to anyone performing one of my many possible futures. I liked my new friend so much that it was hard not to imagine doing exactly what she thought was best for me, and when I arrived in Chicago I was optimistic, full of ideas of what it would mean to move away for a few years to write and teach if it meant I’d get to talk to her more. I told my boyfriend, it feels foolish not to try. She was on sabbatical for the year and offered to help me with my personal statement and writing sample. The risk of it appeared worthwhile. The farthest I’d ever gotten before with grad school was a waitlist. I wanted to know for sure what I might be worth, what my stories are worth.
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In my statement of purpose, I tried to be as much myself as possible. To be the person this professor first met in an airport—thoughtful and open, willing to discuss what sets me apart regardless of stigma. My writing sample included an essay about restaurant work and disordered eating, a short story about a working class teenage girl who runs away from home, poems from what would become my second collection, all about my job as a bartender. I tried to put the person I was at the festival on paper without hiding any flaws. I wanted the committee reviewing applications to know me the way my maybe-mentor did. I wanted them to want to help me just as much as she insisted she could.
My personal statement began here:
As a writer, I think a lot about the intersections of class and culture—why it is that certain kinds of stories are prioritized over others. Stories I see canonized aren’t stories about people like me. I am a queer, mentally ill, working class woman and when I read stories about people who share any intersection of those identities, it’s often through a lens of pity, fetishization, or abhorrence. Art is a kind of mirror, and when I can’t find myself in the art I consume, I feel not only disoriented but erased.
When I heard back from my maybe-mentor, she was impressed by the work I sent her. I know I would put this writing sample in my MUST HAVE pile in about five minutes. Maybe less. Everything I included in the writing sample felt strong to her, especially the choice to include work from multiple genres, though I was applying in nonfiction. She told me the personal statement was solid in her eyes, but when she sent back final editorial suggestions, one phrase in red made me wonder if it’s possible we’d been on different pages all along. Where I described myself as mentally ill, she had a strikethrough, imploring me to instead to describe myself as a working class woman living with a disability.
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Can I ask you an uncomfortable question? My little sister has just started a new job where she’s interacting with data on neurodivergent people for the first time. Do you know anyone who’s attempted suicide?
I am driving back into the city after a haircut and there is traffic. I am trying to follow the GPS off the highway so I can avoid an accident just before the tunnel that will spit me out closer to home. I answer truthfully. Yes.
She has follow up questions. I am distracted. The route I’m taking is unfamiliar. I hear her asking and asking and I am driving my boyfriend’s car and trying not to crash into the brake lights in front of me. I’m in a hurry. He needs to get to work to receive the week’s liquor order. I’m late getting back from my appointment and have been crying over a silly writing disappointment and feel afraid of where this conversation will take me, so I push it to the scariest place myself. I’ve tried. She is quiet. I don’t think we’ve ever talked about it before.
It’s true, that we haven’t. It’s true that I’m protective of this part of my life because of the ways in which I might be judged for sharing it. It’s true that my problems with feeling too much of one thing or not enough of something else have inconvenienced people I love who are not trained to deal with me as I am. These are the family stories I didn’t tell in to my friend in the airport, the ones where instead of the observer, I am the reason the house is in tumult. There was a Christmas where my younger sister and I fought about something petty, a mean joke I made at the wrong moment. We ended up smoking together on the front stoop, where she sighed deeply after we’d hashed out the argument and said, I wish I could just fix you. I could’ve told her then, as proof that what is wrong with me may be incurable, but I didn’t think it was fair to escape my own discomfort by seeking pity or shock. That night I just nodded. I wish you could too.
When I was newly twenty-two and had just moved to Boston, my boyfriend Tom insisted I get on meds. We had been dating for a year. My father had died the previous summer. I was in grief, and the grief built my normal imbalances into bigger obstacles. I didn’t want to go out. I didn’t want to eat. I didn’t want to have sex. I didn’t act the way Tom wanted me to. I wasn’t pliant or daring or fun or funny, the way I’d been when he pursued me during my last semester of college. I wasn’t even motivated, the way I had been as we settled into our new shared apartment. According to him, I was not myself. At his insistence, I saw a new doctor and asked for something that might take all of the extra obstacles away.
The doctor told me I had five options as far as daily medication went and then promptly started taking options away. Prozac was good, but at times too good, at dispelling these feelings. Prozac could make me too calm about my vague wish to stop living without changing it substantially, might give me just enough energy to act on my despair. There were other drugs that worked almost as well, but on those I’d gain weight, and a beautiful girl like me didn’t want that. His plan was to start me on three drugs at once: Wellbutrin, plus an SSRI to be taken at night, and low dose lorazepam as needed for my panic attacks.
On this cocktail, medicated for the first time in my life, I seriously attempted to cease to exist. I had plenty of pills, a new weapon against feeling numb, so I took a handful and drank a martini on an empty stomach, then half a bottle of whiskey and some wine. I did a poetry reading in a loft surrounded by friends, then vanished to a bathroom where I wanted to wait out the pills, and from there, I blacked out. I don’t remember anything from the rest of the night beyond collapsing through an unfamiliar doorway. I was wearing a coat like the one Angelina Jolie wears in Girl, Interrupted and six inch platform snakeskin heels and there was vomit on the toes of both shoes. When I woke up on the couch the next day, Tom berated me for embarrassing him in front of everyone we knew. He was not concerned. He did not take me to a hospital. He’d left my clothes in the bathtub for me to clean them up myself, my most expensive jeans still splashed with puke.
A few weeks later, my lips started swelling up for no reason and I broke out in hives all over my body. I called out of work and went back to the doctor. He gave me a cortisone shot to stop the reaction and said to give up the Wellbutrin immediately. That I was the one in one thousand case who was allergic to the drug. Being on it had made me feel normal—like I could get out of bed without crying and make it through the day without thinking constantly about routes towards my own death. I had the energy to do what I wanted to, which was why I had taken too many pills the week before. I wanted to get away from Tom forever, but it didn’t work. I was afraid to leave him any other way, afraid he would get violent with me if I tried to end things. If I was too crazy to love off of meds, trying to hurt myself seemed like a reason he might leave me himself. If it was his idea to go, I could be safe starting over. But it became another thing he held over my head. No one else will ever want you while you’re like this. You’re lucky I’m still here.
/
I have trouble filling out questionnaires when seeing new doctors because there is too much to tell. I am depressed. I have chronic anxiety. I am mostly recovered from several stripes of disordered eating, but including that in my chart and asking to be weighed facing away from the numbers on the scale doesn’t stop nurses from loudly telling me how much space I take up. I most loathe the point in a physical when we review family medical history because of all the diseases and disorders I can’t recall. My mother and her thyroid. My older sister’s growing cluster of autoimmune afflictions. The Type 1 diabetes showing up more times in our family tree than Punnet squares say it should be able to. Someone told us we have a gene mutation, that I will be at risk for Type 1 myself until I die. And then, there’s my father’s laundry list of co-morbidities: the diabetes that led to blindness, amputations, transplants, cancer, heart disease, and on and on. By the time we are through all the many boxes there are to check, anything I’ve come to the doctor for seems unimportant. The joint pain and stiffness is nothing. My high scores on the mental health risk quiz feel mostly manageable, because I have always managed them before. I make eye contact, am punctual, seem clean and engaged with their questions, so they call me high functioning.
Once, a nurse practitioner laughed at me during an intake appointment, while I was getting dressed behind a thin curtain after a pelvic exam. Are you aware you’re depressed? I tried to explain that I felt the anxiety was more of an issue and started to list off the prescriptions I needed refilled. She told me the waitlist for a therapist through her medical group was as least six months. I asked to be put on the list anyway, then waited for seven months, and when I finally had my first therapy appointment, my assigned counselor started our session by telling me he’d be leaving the practice within six weeks, at which point I’d be back on the waitlist until someone else had room for me in their schedule. A month after I declined to schedule a follow up appointment with the soon-to-depart therapist, the medical group dropped my insurance entirely.
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Through middle and high school, I ended up in the ER a lot because I had trouble breathing. No one could ever figure out why. They tested my blood, my lungs, my heart, and everything always came back clean. I didn’t have asthma. I was never sick with something anyone could name. Once, one of my eyes swelled shut for no discernible reason. Every strange physical symptom baffled the people treating me, but it baffled my family more. My mom was tired of picking me up from school in the middle of the day because of my phantom chest pains and shortness of breath. My siblings were annoyed at me for “faking sick” all the time. It never occurred to anyone to take me to psychiatrist. I still have never seen one. I’m too afraid of what they might see in me.
I talk about my problems with primary care doctors only to have many of them tell me my job is to blame for my problems. If I didn’t work nights, I’d have a “normal” social life. If I socialized more, worked out more, did yoga, ate more leafy greens, took the right vitamins, got more sunlight, took more medicine, took different medicine, then maybe I’d be well. My depression isn’t major enough to actually count. My anxiety doesn’t keep me from making and keeping appointments, arriving on time to speak to them about what’s wrong, so it must not be that serious. My body aches must be from carrying cases of bottles to the liquor room, not something chronic that would persist even if I quit working at all tomorrow. My fatigue must be from staying up too late drinking half a glass of wine after my shift. There is always an excuse for me not to receive the care I know I need, because I do not demonstrate that need properly.
I feel I am disappointing everyone because there is likely no end to how I hurt. I go to therapy every week and am told by many people, my family included, that they’re proud of me for doing so. But it feels like everyone is waiting for a day when I’ll be fully well, and I don’t know that that day is on any calendar, no matter how long I perform the maintenance that makes sense to me.
I think my maybe-mentor told me to strike mental illness from my statement because claiming it that plainly is uncomfortable, because of how poorly medicine understands the mind. My mind is sick, and that sickness causes very physical symptoms, but because the root of my pain is mental, it is more wrong than an infection of virus. It is invisible, and therefore more dangerous. I am untrustworthy because of how well I hide what’s wrong with me. There is no real cure, only rituals to minimize this wrongness. If I were a student again, would my illness affect my work? Would it make working at all impossible? Never mind that I perform a job every day, a job that isn’t easy, one that requires I manage my time and my body and the expectations and experiences of other people flawlessly. I make a living off tips. People pay me because I make them feel comfortable, but that proves nothing as soon as I admit that I’m sick. Even though I’m able to manage so much, as soon as I admit illness, I become unknown.
/
Is desperation a disability? In my situation, it doesn’t feel fair to call it by that name. It doesn’t feel fair to claim I need accommodations for the ways my brain chemicals betray me when so many other people have it so much worse. I drag myself out of bed and into the shower if I think I’ll still have the energy to get dressed afterwards. I put on makeup and change my earrings because people are less likely to ask me what’s wrong on days I wing my eyeliner and wear my favorite silver hoops. I walk to work, avoiding the bus or the train so I don’t have to be in an enclosed space with strangers. I spend my shifts alternating between panic and distraction, drinking iced tea and taking ibuprofen all night to numb the ways my body wishes I was still asleep, wishes I would just sleep forever. None of this feels like the disabilities I grew up in the shadow of. My problems don’t feel serious enough to allow them that descriptive space in how I imagine myself.
My older sister, Kaitlin, was diagnosed with Type 1 diabetes, just like our dad, when she was still a child. I asked her recently if she thought of her chronic illness as a disability, and she balked. I’m sure some people do, but I don’t feel allowed to see it that way. She told me how our father kept her in the hospital after her diagnosis until she knew how to test her own blood sugar and take her own insulin injections without help. He wanted her to feel responsible for herself, to not rely on someone else to stay alive. She’s in the process of getting a continuous glucose monitor so she can stop pricking her fingers three times a day to manage her care, and her endocrinologist told her about a feature of the device where you can share your sugar levels with loved ones automatically. Why would I want to do that? Her doctor laughed and said that some people feel it’s important to include others in their daily maintenance rituals. Kaitlin and I both found the concept hilarious; imagine a partner of friend getting a text message about a blood sugar, as if they could do anything with that raw data but acknowledge it and continue on with their day, unaffected. We were raised to believe independence is the highest priority, to be frank about what’s wrong when asked, but to manage any wrongness on our own at all costs.
I am not sick in a way most people can see. But what does that mean, really? If I showed someone the scars from where I used to drop cigarettes onto my arm on purpose, would they call it self harm? If I say I played bloody knuckles in college instead of beer pong, is it just a funny detail or something to fear? I don’t know any stories about someone like me that end well. Perhaps that’s by design. Maybe we only talk about mental illness by talking about how to separate it from the self and purge it entirely, where possible.
No one can prescribe a pill or treatment that would give my father back his legs, his kidneys, his ability to produce insulin, or even his life. No one could minimize that the world saw him and immediately treated him differently. My differences are so hidden that, unless I opt in and confess to them, it’s almost as if they don’t exist at all. I look able. I am physically strong and articulate. My work requires so much of my body and my mind. But I’d be a fool to think my tenuous stability is anything but a temporary reprieve. Maybe that’s it. Maybe I’m a fool. Maybe I’d get more help if I asked for it more, or differently. If I had more accurate language for difficulty.
Even with the help of this generous woman I met entirely by chance, I only made it to the waitlist for grad school, and no further. I was disappointed, but unsurprised. It had happened before. I was prepared for the familiar failure. Though I took my friend’s advice and changed the language describing me from mentally ill to living with disability, the alteration didn’t afford me the community of writers I was asking for. I haven’t applied to school again. I decided to write the book about family anyway. When discussing where and who I come from, I have no choice but to write about my body. About the things I’ve inherited. The losses, the trauma, the mutated genes. All of it, the house I keep returning to no matter how much time passes.
I don’t have the right language for what is wrong with me, but that’s because I’m still looking for it. And wrong—that’s not quite the word I mean to use here. I mean that I’m looking for ways to describe how it feels to work without guarantee of success. I’m looking at what works in me, and how. Where the difference comes from, and what to do with it once I give it a name that fits.
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Emily O’Neill writes and tends bar in Cambridge, MA. Her debut poetry collection, Pelican(2015), won YesYes Books’ inaugural Pamet River Prize for women and nonbinary writers, as well as the 2016 Devil’s Kitchen Reading Series in Poetry. Her second collection with YesYes, a falling knife has no handle (2018), was named one of the ten most anticipated poetry titles of fall by Publishers Weekly and was recently long-listed for the 2018 Julie Suk Award from Jacar Press. She is the author of five chapbooks and her recent work appears in Bennington Review, Catapult, Hypertrophic Literary, Little Fiction, Redivider, and Salt Hill, among many others.
