A Roller Coaster You cannot Get off OF

I don’t know how to write about illness. I don’t know how to write about the badly decorated doctor’s office waiting rooms, the dead plants that linger in corners, the couch that I sink into once a month (and then later, once every three months) in my psychiatrist’s office, where he tells me that life does not have to be this hard. Doesn’t it? Isn’t this the messy business of life, with all its ups and downs? Isn’t everyone on a roller coaster they cannot get off of? 

Apparently not. In late 2021, I began to get headaches. I’ve always had headaches, but not like this. These are migraines, and they put me in the emergency room, crying and begging the triage nurse to please give me something to stop the pain. Everyone was alarmed. The neurologist said something about a brain hemorrhage, although none was found. They started to come more frequently, every other day. I cried to my father that it would always be like this, that it would never stop. I would always be in pain. This is how people become drug addicts, I said. Just give me anything to make it stop. 

I am no stranger to chronic illness. I have bipolar disorder, type 1, or bipolar 1 disorder, which is not usually physically painful, but certainly can be damaging. In December 2019, I was hospitalized for my symptoms for six days, an event which traumatized my family permanently and ruined Christmas. I understand desperation. I understand needing a cure, even when there are none available. I understand fear. 

Something my outpatient neurologist said really stuck with me. “I’ve always had headaches,” I told him. “Sometimes days-long headaches. But those aren’t migraines. They’re just headaches.” 

“Those are migraines, too,” he said. “They just may not be as severe.” 

“What?I’ve been having migraines this whole time?” 

“You probably just have a high pain tolerance.” 

I have had migraines, severe ones, since I was a teenager. And I have never said anything, never complained, because I thought everyone had bad headaches. I thought it was normal to be in pain. Like my psychiatrist said, life didn’t have to be this hard. I was making it hard for myself. 

I have been getting in my own way since I was a child. My mother loves to tell the anecdote of the time I fell, backwards, off of a piece of playground equipment, just to see what would happen. I was about two years old. Why did I do that? What was I thinking? I just wanted to see what would happen if I fell. What happened was that I hit the ground, started crying, and had to be carried home. Go figure. 

Often in my life, I’ve done things just to see what would happen. What would happen if I dangled my feet off that ledge? If I teetered, toppled, and fell? 

Pain, and in particular female pain, is often not taken seriously. My hysterics, pre-diagnosis, were often written off as typical adolescent craziness. As I got older, it became apparent that I had a problem. More specifically, I was the problem. I had a drinking problem, I was juggling boys like a circus performer, my grades were up and down, I never slept. I kept up an extreme workload, taking twenty-one credits in college while working forty hours a week at an ice cream shop where I was a supervisor at twenty. I played sports and maintained an active social life. I was constantly crashing and burning, in despair or violently angry. I was complaining of strange symptoms like fear of the laundry bin. I clearly was not well, but I was so high-functioning that my parents refused to believe that there was something wrong. It took a particularly severe crash and land into depression for them to see that I needed to see a doctor. 

The diagnosis came and went in forty minutes. I had a name (Bipolar II, to later be changed to Bipolar I) and a face for what I was wrestling with. There was some relief. I had an incredibly kind psychiatrist who took me seriously and was willing to work with me despite my fears about medication. The first drug he put me on made me immediately suicidal. Try again. We went through twelve different meds, two years, and a hospitalization before we found the right one. 

Some of the meds made me lose weight, some made me gain weight. Some gave me vertigo, shaky hands, dizziness, anxiety, and a whole host of other symptoms. Twice I went to the Emergency Room because I couldn’t stop throwing up. I got tested for lithium poisoning. I gained thirty pounds, then another twenty. My friends and family watched me get sicker and sicker, then better for a time, then sick again. 

What I take now has minimal side effects. It works, soothes my manic brain and protects me from the depression that used to flatten me to the floor. It eliminates the psychotic symptoms that used to send me sprawling. It is five pills, a cocktail which I faithfully swallow each morning and night. I can’t forget. 

The study of pain is interesting. Studies have shown that women feel pain more sensitively than men, but are less likely to be prescribed pain medication than men in medical scenarios. Doctors don’t want to take female pain seriously. In my adolescence, when I was clearly showing symptoms of Bipolar Disorder, several doctors told me I was just depressed, or had ADHD and that I couldn’t possibly be Bipolar. One doctor told me I was attention-seeking. After my hospitalization, I wanted to call him and ask him what he thought of me now.

It’s true that I frequently lied to these doctors or minimized my symptoms. It took years before I was able to be honest with a medical professional about the severity of my illness, but this is because I had become desperate for help. If someone had noticed sooner, taken my pain more seriously, it’s possible I would not have suffered for so long or so acutely. 

You hear the story of Icarus, who flew too close to the sun. His wax wings melted and he fell to Earth. I’m convinced that God created depression to put manics in their place. He knew if I was manic all the time, I would be too powerful. Late in May 2020, in the midst of a lockdown that shakes New York City to its core, I call my psychiatrist and tell him I can talk to God. I’m on a mission from God, I tell him, and  I’m writing a book that will explain everything. 

“Do you want to take one of your antipsychotics right now,” he asks. I usually take them at night. It’s 2p.m. “Like, right now?” 

“That sounds like a good idea,” I say, and trot away from the phone to take my pills. 

Depression is seen as a vocation for some women. From Ophelia onward, women have suffered, often at the hands of men, and their pain has been entertainment for the masses. Depression is culturally acceptable for women, while violence, passion, and other emotions are not. Women are branded as “hysterical,” when they show too many feelings, and this is considered unprofessional. This brand has kept women from being CEOS, kept women out of politics, and many other forms of institutional sexism. This is not to say that there are not many incredible women in positions of power, but the strain is still there. 

In her article “The Grand Unified Theory of Female Pain,” Leslie Jamison talks about the history of wounded women, and how we’ve moved into an era of “post-wounded women,” or women who are too cool to suffer;  women who reject this wounded label; women who refuse to be depressed. In some ways, I identify with that, but in other ways, as Jamison does, I think there is a lot to be learned from the pain of women. Women, unlike many men, have the socially acceptable ability to express their emotions in the public sphere. This wound-dwelling, as Jamison puts it, is a way to learn about the human experience. 

My own illness, when it struck, was impossible not to talk about. I felt compelled to talk about it with anyone who would listen. I believe in openness with mental illness in general, and destigmatization. We shouldn’t be afraid to share our struggles, especially when they are chronic or affect us in ways that other people will notice. We should build community and support one another. I needed to talk about my Bipolar because it was greatly impacting my life and I am grateful to everyone who listened to me during that time.

My hospitalization came at a time when, on the outside, I was extremely high-functioning. I was working at a publishing house as an intern three days a week, pulling a 4.0 in my first semester of graduate school at one of the top schools for creative writing in the country, and working maniacally on my first novel-length manuscript. Three days after the semester ended, I was on the psych ward. It was as if I had been holding on just to let everything slip from my fingers as soon as school was over. I was psychotically depressed, convinced I had a terminal illness, obsessively researching methods of suicide.

The hospital is not a fun place to be. They take everything away from you—your clothes, your books, your phone, even your shoes. You are reduced to your component parts. I had to seriously take stock of my life, what I wanted, what I was living for and decide what I wanted to do.What I wanted to do was live. I missed everything about my life on the outside. I missed my phone, my clothes, and my friends. The hospital reminded me of everything good about being alive. 

I want to say I’m recovered. I want to embody recovery—to be even-keeled and stable and to never freak out at my boyfriend because he didn’t text me back. I’m not that. I still push buttons I shouldn’t press. I still do things I shouldn’t do. Part of recovery was learning how to help myself, how to get out of my own way in the face of certain things that really were out of my control. Part of recovery is learning to make compromises. 

Bipolar means a lot of different things to a lot of different people. For me, it means there are certain things I can’t do. I can’t stay out all night. I have to get enough sleep or I’ll be thrown seriously out of whack. I can’t travel too many time zones; my biological clock is easily startled and jet lag affects me more than the average person. I probably won’t be able to get pregnant and have a baby; I have to stay on these meds that cause birth defects. I don’t want to be hospitalized again. I don’t want to be permanently, rather than functionally, disabled. 

Chronic pain is absolutely that—chronic. It’s inescapable, sort of like Bipolar. I still haven’t figured out what triggers my migraines, whether it’s a particular food or stress or change in the weather. Whatever the root cause, I have to live with it. Sometimes your body makes the decision for you, whether that decision is to stop what you’re doing and slow down, or break down from illness. Sometimes, nature wins. 

One of the big things I learned, and am still learning, is balance. The Bipolar brain, when in a manic episode, wants to do everything at once, take on many projects, accomplish everything. I once worked forty hours a week and did college and played sports and had a vibrant social life—I can’t do that anymore. I have to have balance. I have to work less, even when my instinct is to take on as much as possible. I can’t push myself as hard as I used to because stress triggers episodes. 

This feels unfair. I want to get a PhD, teach college and write books and party all the time and stay out all night, but my meds put me to sleep at 11p.m. Some of these things are possible, but they’ll take a little longer. I’m learning that my body will physically stop me from overdoing it—I’ll get migraines if I overwork myself. Part of being chronically ill is learning your limits, then working within them. 

It’s the second anniversary of my hospitalization. I’m stable on my medication, symptom free for eighteen months. I have a partner and friends and a great relationship with my parents. I’m stressed—I just applied to nine PhD programs—but I’m stable, and that is what is important. I’m not running around like a madwoman or lying on the floor in a depression or floridly psychotic. 

I still have migraines. It’s been a few weeks, and they’ve abated some, due to a magnesium supplement and a prescription for triptans, but the pain is still there. I still have Bipolar Disorder. I will have it all my life. 

Maybe I do have a high pain tolerance. I like to joke that my pain tolerance isn’t anything special, but my tolerance for suffering is higher than normal. Maybe they’re one and the same. As I wrote this, I had to stop because a migraine came and knocked me flat, sending me to lie down in a dark room for several hours while the triptan kicked in. It’s possible that the migraines will never go away, just like the Bipolar will never go away and I’ll be like this forever. 

Chronic illness is about radical acceptance. You accept the things you cannot change, and make a life around what you can. I’m making it sound easy. It’s not. I’m not recovered, and I may never achieve the level of functionality that I desire or think I should. It’s about adjusting your expectations, changing your perspective and taking control of what you have control over. 

I’m not sure how to write about illness. Instead, I know how to write about life—messy, complicated, often painful. But wonderful, too, in its own way. 

Joanna Acevedo is the Pushcart nominated author of the poetry collection The Pathophysiology of Longing (Black Centipede Press, 2020) and the short story collection Unsaid Things (Flexible Press, 2021). She was one of five finalists for the Editor’s Chapbook Prize in Fiction from the Southern Humanities Review, and was longlisted for both the 2021 Sexton Prize from Black Spring Press Group and the 2021 Prose Prize from Steel Toe Books. Her work has been seen in the Write Launch, Track Four, Sheila-Na-Gig Online, and many other places. She is a Hospitalfield 2020 Interdisciplinary Resident, an NYU Goldwater Fellow, Poetry Reader at Frontier Poetry and Associate Poetry Editor at West Trade Review. She received her MFA in Fiction from New York University in 2021.