How I Stopped Being Afraid of My Own Brain

I loved Bigfoot in the daytime. Really any and all cryptozoology phenomena—Bigfoot, the Loch Ness Monster, Sasquatch, the Abominable Snowman, Champ, the Jersey Devil, the Kraken—and I spent all my daylight hours reading every detail I could about them.

But when nighttime came around, Bigfoot became a different beast. Suddenly the tales I had read with the sun out, stories that had deeply intrigued and fascinated me, turned against me. Suddenly I was sure that Bigfoot was hiding in our backyard, ready to break in through my window after dark. He would choke me with his big monster hands; he would tear my flesh apart with his big monster teeth. Unable to sleep, I went seeking my parents, and my dad walked me back to bed as he asked me some questions.

Where does Bigfoot live? He knew the answer, but he also knew I loved to show off my knowledge and research.

The Pacific Northwest, I said.

And where do we live?

New England.

My dad then began to help me calculate—how many miles were between Oregon and Massachusetts, how fast the average Bigfoot might be able to run, how many hours, days, weeks, months it would take Bigfoot to cross the country.

Yeah, but, Dad, I countered. What if he left six months ago? Then he’d already be here!

True, my dad agreed. But of all the thousands of houses, of all the thousands of little girls, in New England, why do you think he would choose you?

And just like that, my anxiety deflated. Of course my dad was right. He had proven through logic that this thing I was so deeply afraid of simply wasn’t likely to happen, and I was able to accept that and sleep.

Throughout my childhood, I cycled through fears of fires, shark attacks, car accidents, plane crashes, dying in general, dying young specifically, my dad dying, my mom dying, being alone, being forgotten. And for all of these things, Dad was able to use some logic to help comfort me. Racing thoughts and anxiety attacks are all part of the Bartels family genes, he reassured me, time after time. I have these thoughts, too, he said, and explained how he liked to read to distract himself until his mind slowed. He taught me how to logically talk through my fears, how to do deep yoga breathing (long before I would start doing yoga), and how to understand that it was actually okay, that it was all in my head.

But the one fear I never spoke about with my dad was the fear that one day I might not be able to think myself out of a panic attack, that I might lose the ability to find the logic. That the thing I was most scared of was not in my head, but my head itself.

I grew up with three grandparents: my mom’s parents, Nunni and Puppy, and my dad’s dad, Papa B. My dad’s mom, Genevieve Beckers Bartels, had died when he was a teenager, 25 years before I was born. I collected facts about my ghost grandmother in my mind: she was born in 1915, she attended college, she worked as a nutritionist, she had four daughters and one son, she wore rimless glasses with nose pads, she was the leader of the Girl Scouts troop. I knew that my grandmother preferred to be up on a ladder, wearing pants, stripping old paint off the side of the house, her face covered in spackle, instead of donning white gloves and floral dresses and playing bridge at the country club like all the other New Jersey housewives. I know she died in 1962, when she was 47. I knew she drank vodka martinis, smoked three packs of Camel cigarettes a day, and she had schizophrenia.

I knew the word schizophrenia long before any of my classmates; I remember explaining what the word meant once to a friend in elementary school. My dad was never one to keep family secrets, to feel shame over mental illness. Both of his parents, though extremely conservative in some ways—both were raised deeply Catholic—were also very progressive. If your body wasn’t well, you went to the body doctor; when your brain wasn’t well, you went to the brain doctor. While my mother’s side of the family sees going to therapy as something to keep quiet, getting mental health help is all part of the Bartels family experience. My dad and his sisters have shared panic attacks, relentless anxiety, deep spells of depression, battles with bipolar disorder. I would joke with myself that you weren’t really a Bartels unless you had spent some time at McLean. (The famous mental hospital, featured in Girl, Interrupted and known for treating the likes of John Nash, Sylvia Plath, Anne Sexton, James Taylor, Robert Lowell, Ray Charles, and David Foster Wallace, is located less than ten minutes from my childhood home.)

But for all the openness in talking about mental illness, for all my background knowledge about schizophrenia, for even seeing my aunts come out of dark periods and live happy, healthy, full lives afterward, I was still deeply afraid. And this was the one thing I felt I couldn’t talk to my dad about, because it wasn’t some outside force—it wasn’t a monster, a fire, an act of violence. It was something already inside, and something he passed to me, from his mom. The brain couldn’t logic away the fear of the brain. And so while the fears of Sasquatch and flames, sharks and airplanes, dissipated as I grew up, one very real, very possible fear, has stayed with me my whole life: the fear of becoming schizophrenic.

I knew that my grandmother spent the last four years of her life, when my dad was nine to thirteen years old, in and out of hospitalization. She died one Saturday in the middle of April—the first weekend, my dad recalls, that she was back after a long period of treatment. She sat on one end of the couch, my dad on the other, baseball on the television. She sneezed, wet herself, and had a stroke; she was taken to the hospital and died eight hours later. My dad and his sisters will never know the exact reason for their mother’s death—her death certificate lists complications from heart disease as the cause, but was it actually the heart disease? Was it a clot set loose during electroshock therapy? Was it the self-medicating with vodka and cigarettes? Was it a bad combination of medications? All they knew was that their mother was gone and, in many ways, it seemed the disease that had sent her to the mental hospital had been the thing to take her. This was the information that I dwelled on: that something inside your own head could change you in that way, that it could make you act in a way that you could not control, that it could kill you—that paralyzed me. I did not want to die, but in middle school I became frightened looking at belts, in high school it was driving my car near the edge of a cliff—it would be so easy to cinch the leather around my neck, to swerve over the ledge, if in just one moment I was no longer myself. It didn’t help that I watched so much Law & Order, where it seemed the murderer was always someone with schizophrenia. Schizophrenia was presented as dangerous, frightening, horrifying. And someone I was very directly related to—someone whose genetic material made up a quarter of mine—had it. Died from it.

I am not one to hide from my fears. If my dad taught me anything, it was that thinking deeply and directly about the things that scare me helps. Trying to ignore them only makes them worse, and so I follow my dad’s model, using reading as a distraction, but reading deeply and widely about the things that scare me the most; perhaps knowledge will help me better understand and explain my fear. The fear of getting kidnapped, raped, and murdered led me to an interest in true crime. It seems that if I look closely at something, read deeply about it, I will become less afraid. Exposure therapy is often the most effective treatment for many types of fears, and so I tried it on myself and read everything I could about schizophrenia. I learned a lot of facts about the illness. I absorbed statistics. But a lot of it actually only made me more afraid: women often don’t develop schizophrenia until their late 20s or early 30s, and so I spent all my teenage years and 20s waiting to begin my spiral. I read that hallucinogenic drugs can sometimes trigger psychotic episodes, so I drank a lot of alcohol in college, but avoided acid, mushrooms, even weed––anything that could cause hallucinations.

I also read personal accounts of women living with schizophrenia––such as Susannah Cahalan’s Brain on Fire and Esmé Weijun Wang’s The Collected Schizophrenias––but in many ways, these only stoked my fears. These are the first-person stories of people who were able to both have this disease and thrive, people who are creative, intelligent, and living full lives. But in the grips of my anxiety,  I used these nuanced accounts of neurodivergence to cherry-pick passages that fueled my own irrational fears. I found myself projecting my own experiences into these women’s books: Was the way I incoherently babble when half-asleep the beginning of the schizophrenic “word salad” speak? Was the lucid dreaming I am prone to the beginnings of psychosis? During that morbid period in middle school, I remember seeing a gaping dark void in the side of my house, a black hole. Was that sunspots in my eyes or an inherited hallucination? For all the research and reading I did, I found myself looping back to the same panicked thoughts. My dad’s strategy to use logic to chase away the fear didn’t work this time. The fear only finally went away this spring I read Marin Sardy’s book The Edge of Every Day: Sketches of Schizophrenia.

The Edge of Every Day is an artful account of Sardy’s experiences growing up with a schizophrenic mom and brother. Her collage-style chapters––short vignettes, beautifully surprising pairings of seemingly unrelated thoughts––makes her book a tribute to the associative workings of the human brain. The way Sardy bounces from family story to medical research to the history of the illness is both startling and logical. To read her book is to be fully immersed in her brain, a brain that has spent many hours thinking about the workings of brains. “We have not yet fully grasped how the brain creates perception, thought, and emotion to begin with, let alone such spectacular distortions,” writes Sardy in the opening of her book. But it seems that her memoir is an attempt to try to understand or, at least, to mimic, that functioning.

At its core, The Edge of Every Day, is a deeply moving story about a woman trying desperately to hold onto and help two people who are very sick, whom she loves very much. I cannot see why anyone would not be moved by Sardy’s story, but for someone with a history of mental illness in her family, of the same mental illness, Sardy’s book was a revelation.

We meet Sardy at the beginning of The Edge of Every Day as a little girl, trying to understand her mother’s delusions. “Reality is slippery,” writes Sardy, “If someone tells you something often enough for long enough, regardless of whether it’s true, you begin to believe it. Or at least you begin to doubt your own perceptions, think, Maybe she knows something I don’t know. Maybe I’m missing something. Maybe there’s something here that I don’t understand.” Sardy’s anxiety manifested itself in a “nervous stomach.” I thought of my own childhood stomachaches, late at night, thinking of a fire consuming me in my sleep, and how my dad reassured me that Bartels nervous stomachs were an inherited trait. I didn’t think much of that statement at the time, but reading Sardy’s story, I began to understand why my dad might have had a nervous stomach growing up with a schizophrenic mom, how worrying about a sick loved one could cause a physical manifestation of anxiety for him, just like it did for Sardy.

From the very first pages, Sardy’s book began to crack open my own life. I began to see the nuance, to learn about the disease, through Sardy’s eyes, and the deep fear I had felt for so long about becoming schizophrenic myself began to recede. For as much as I had tried to learn about schizophrenia in adolescence and young adulthood, I had yet to read such an account from the family member of a schizophrenic person. Even though I had read the very personal and raw stories of Wang and Cahalan––and nothing can replace women being able to reclaim their own narratives and share their experiences in their own words––for me, there was something different about reading from the point of view of a family member. When Sardy attempts to explain what it feels like to be in the middle of psychosis (“In this state, a person may feel godlike or enslaved, all-controlling or entirely controlled, both at once”) and tries to recreate the experience the best she can, to her understanding, for her reader (“Schizophrenic delusions share some features in common with a healthy brains’ nighttime dreams”), she does so with the deepest care and kindness; she is trying so hard to understand the experience of someone she loves. Over the course of the book, we follow Sardy through adolescence and young adulthood: her love of David Bowie (Bowie, too, had schizophrenic family members, something I didn’t know until Sardy’s book, despite my own Bowie phase) and Wiccan shrines (“These objects anchored me to my life when I forgot again that I was real, that anything was real. When the scaffold of the world collapsed, leaving only madness and more madness. These were the fragments I shored against my ruin”), the different ways she tries to steady herself while such chaos surrounds her. And even in moments of resentment and frustration towards her mother and brother, it’s still there: the love.

“Schizophrenia takes even my words away from me,” Sardy once wrote to herself, trying to write about a phone call with her mother while she was suffering from a hallucination. At times in The Edge of Every Day, there are moments where Sardy does seem to be at a loss for words, where her love for her family is so strong but she feels so helpless, but as Sardy eventually realized that “overcoming the illness wasn’t about shutting it down but finding a path through it,” she worked to find the right language. This book is, in my opinion, her path through her experiences.

“When you go hunting for advice about how to help a mentally ill loved one, much of what you find actually focuses on what you can do for yourself,” writes Sardy. “Learn as much as you can about the mental illness, find a supportive community, ask questions.” And, I would add, tell stories. In a lecture Jesmyn Ward gave at the Museum of Fine Arts in Boston, she said, “I seek to tell stories that will make us more real to each other.” That is exactly what Sardy has done in her book: she has made the stereotypical schizophrenic, often treated in culture as an exaggerated bogeyman, into a fully fleshed out, real, beloved person. She has made her brother and her mother real to me—and she made my grandmother real to me, too. Wang and Cahalan’s memoirs give voice to the complex schizophrenic experience, but Sardy’s book gave me something I also needed, and hadn’t found anywhere else: the voice of someone who loves a person with schizophrenia. It made me realize how much of my anxiety was bound up in the fear that if I became schizophrenic, I would lose the people I loved.

I have been lucky enough to feel loved my whole life––by my family, by my friends, by my fiancé, by my pets. I have a wonderful community of people who know me, who care about me, who love me for exactly who I am, irrational fears of Bigfoot and all. And I realized, after finishing Sardy’s book, that my fear of developing schizophrenia was that, with that illness, I would no longer be myself, and therefore I would no longer be loved by my people. When I read first-person accounts, while I saw that it was possible to suffer from schizophrenia and still be loved, my anxious brain misinterpreted that as being loved in spite of an illness. After reading The Edge of Every Day, and hearing from the person doing the loving, I realized that it was possible to be loved not in spite of schizophrenia, but for it, with it, all of it. Even with schizophrenia, I would still be myself. I would still be worthy of love.

When I finished The Edge of Every Day, I was on an airplane, flying back to Massachusetts from Europe. It was dark and quiet, the plane half-empty. Everyone else was asleep, and I sat there holding the book, staring at the cover, tears on my cheeks. I was sad, of course, for Sardy, for her family, for the suffering they had to endure. But I was also sad for my own family. I realized in that moment on the airplane that I didn’t know my grandmother as a person. I knew some stories of her, yes, but mostly what I knew of her was her disease. I didn’t know her as a person with an illness, just as an illness, as a ghost of schizophrenia. I didn’t think about the fact that she was someone who was loved. She was my dad’s mom. My own fear had consumed me and pushed away that very obvious fact. “The work of understanding sometimes requires finding another way in, a back door,” writes Sardy, of trying to understand her brother’s mental illness. I found my own back door in Sardy’s book. For in order for me to stop being afraid of schizophrenia, of being scared of inheriting my paternal grandmother’s disease, I realized I had to ask about her. I had to get to know her as a person. I wanted to know who she was and what my dad and my aunts loved about her.

After reading Sardy’s book, I asked my dad to tell me about his mom. He told me about how the pads on her glasses left deep imprints on her nose. He told me how his dad would always bring his mom coffee in bed while she smoked her first cigarettes of the day. He told me how his mom worked so hard and stayed so busy polishing the floors, painting the house, spackling the walls, to distract herself from what was happening in her head. He told me how his dad explained schizophrenia to him, eventually, during one of his mom’s last hospitalizations: she hears voices that she thinks are God and the angels talking to her. My dad described watching his mom try to walk through a door frame but suddenly freeze and crumple, an Alice in Wonderland type effect taking hold, she suddenly certain she would not be able to fit through, and how hard it was to see that. My dad also recounted how his dad would comfort her: She would collapse, my dad told me. She would melt into Dad’s arms and he would say: It’s going to be okay, Gen.

Gen.

I had only ever thought of my grandmother before as her whole name—Genevieve Beckers Bartels—a name on a tombstone or death certificate, not as a person with a nickname, with a worried husband, with passions and fears, as a human being, someone who was loved. “No matter how my mother acted or how afraid I was,” my dad told me, “I still loved her.”

We are fortunate to have beautiful accounts of what it’s like to be a person with schizophrenia. But for me, Sardy’s book filled a crucial role by showing me what it means to love that person. Over the course of The Edge of Every Day, you, too, come to care about and love Sardy’s brother. You want him to be okay, whatever “okay” ends up looking like for him.. And the legacy of Sardy’s writing is that you take that desperate hope and desire out into the world with you, beyond the page. This book changed how I thought about schizophrenia in a way first-person accounts couldn’t do. It changed how I thought about my grandmother, and, in turn, how I thought about her legacy. I no longer think it’s likely that I’ll develop schizophrenia; the anxiety itself seems to be my version of the Bartels inheritance. But if I did, I would be like Sardy’s brother, or like Gen: always loved.

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