If you’ve ever met Cole Cohen downtown or out at UCSB where she works, it’s a sure bet you never guessed she has a hole in her brain the size of a lemon. As a matter of fact, she never guessed it, either, until eight years ago when she was about to enter the California Institute of the Arts’ graduate writing program and decided to try one more time to learn to drive. “I figured you can’t live in Los Angeles without a car,” said Cohen.
She failed. Again. Frustrated, her mother suggested medical intervention and, this time, a neurologist, the latest in an accelerating attempt in Cohen’s history to find out why she could be so smart yet wrestle with stubborn handicaps. She got into the prestigious writing program, for instance, but cannot gauge the passage of time without a watch; navigating grocery stores is even more difficult. “It’s my nemesis,” she laughed a few weeks ago over Chinese food, and she wasn’t kidding that much. This new doctor ordered an MRI and a PET scan. After decades of largely theoretical diagnoses and depression drugs, the MRI made the culprit plain: a “black spot the shape of a lopsided heart,” as she puts it in Head Case: My Brain and Other Wonders, her book about the hole. Recalling the discovery moment produces one of the most delicately phrased yet broadly funny scenes in the book.
The passage goes as follows: Neurologist Doctor Volt (with wit, Cohen renamed some of the people involved) shows her a computer-screen image and points to an empty spot. This is your brain, he says, and that is a hole. Then this happened.
“A hole.”
“Yes.”
“There is a hole in my brain.”
Doctor Volt pauses for a moment. “Yes.”
Cole falls into a reverie, looking out the doctor’s window at a hospital. Outside from a high vantage, she sees “ant people” taking patients out of an emergency helicopter. She stares because she cannot look at the image on the computer. Can you say too much information? He explains that only the location of the hole (it’s in the parietal lobe) prevented her from serious debilitation or death.
“How big is it?” I ask …
“Well. These are your eyeballs. See that?” Volt taps his pencil on the image of the eyeballs in the skull. I nod. “OK. So this is one eyeball.” Tap, tap with his pencil. I nod. “So how many of these can we fit in there? Volt begins to count. “One, two, three, four, five, six, seven, eight, nine…fifteen, twenty. So about twenty eyeballs.”…
“Twenty eyeballs,” I yell. It feels good to yell; it brings the air back into the room. “That’s a lot of eyeballs.”
When I look at my MRI I look at myself and I see a stranger.
Almost a decade later, armed with this impossible-to-fathom knowledge, Cohen is out in the world, tidying up her relationship to that strange neurological anomaly in a book that skillfully shifts from gallows humor to philosophical ruminations.
Since her visit to Dr. Volt described above, Cohen finished grad school, produced her memoir, moved around the West Coast, and followed her heart to Santa Barbara, where she eventually found a job at UCSB’s Interdisciplinary Humanities Center (IHC). (Full disclosure: The Isla Vista film series I run is administered by the IHC.) She also sold the book to publisher Henry Holt and Company, originally titled Curioser and Curioser, for a sizable advance. Though even big publishers don’t often do book tours nowadays, Cohen is scheduled for a reading at Chaucer’s on Thursday, June 4, then down to Skylight Books in Los Angeles, and finally her hometown Portland, Oregon, where she’ll live a lifelong dream signing her own book in legendary Powell’s.
Admittedly a shy person, one might wonder if Cohen is enjoying the exposure she’s now getting. Curious bragging rights, a hole in the brain. “It’s an invisible disability,” said Cohen, a fair-skinned, curly-haired brunette, quick to laugh, though sometimes looking a bit baffled, not unlike lots of other poets and writers. “But it’s definitely a two-edged sword. If I didn’t write the book, people wouldn’t know about it,” she said. “So this is like a big coming-out party. Here it is — surprise! But on the other hand, writing really is the way I deal with it, with a lot of my problems,” said Cohen, a poet, playwright, and sometimes journalist.
Family Matters
Born in Brooklyn before it was fashionable, Nicole Cohen grew up in New Jersey; Pennsylvania; Davis, California; and later in the part of the country that somehow suited her best, Portland, Oregon. Her father is a philosophy professor and her mother a retired librarian who worked for Mobil Oil, where they met when he was between philosophy gigs. Cohen’s normal childhood began to unravel when she first tried to learn to tie her shoelaces. She learned coping strategies, like wearing loafers. “I had lots of experiences that told me something was off,” explained Cohen. “I remember we used Cheerios in 1st grade to learn about addition and subtraction. And I was just eating the Cheerios.”
At the same time, however, she began writing poetry after an inspirational 1st grade teacher, Connie Bowsher, exposed her to Emily Dickinson. “I was always a kid with big feelings,” she said. So, great with language, lost in math. “I was in special ed and the gifted program at the same time. I was marked as lazy in school; people thought I must not be trying.” Nonetheless, she cleared high school and got into the University of the Redlands’ alternative campus, the Johnston Center for Integrative Studies, where people design their own majors. Cohen made friends and graduated with a degree that linked writing to performance. In her book, these seem like her salad, though the chapter ends with an ominous sentence, “I approach the post college world delicately, like a bomb technician.”
Yet her post-college years elicit the most bittersweet sequences in the book and the most universal. Who doesn’t have a string of bad jobs in their twentysomething past? Cohen elaborately screws up jobs at a newspaper, two bookstores, an essential-oils company taking phone orders, and a rock-promoter gig, the job she relished most. But as Cohen plows through these environments, mixing up numbers, making wrong change, and sending posters to incorrect addresses while negotiating the world of prickly roommates and the pitfalls of life free of parental supervision, she still doesn’t understand her foibles have an origin.
When someone’s universe doesn’t match up with everyone else’s, we call that person crazy or stupid. My inability to process what’s basic to everyone else is taken for a refusal. Not yet having the anatomical evidence to prove everyone wrong, I have to assume that they’re right. Literally and figuratively, nothing adds up. I am thrown into the adult world like a match into gasoline. Burning down everything in my path is an organic reaction. The anger that I feel towards myself for not being able to do what comes easily to others is a slick dark fuel pooling with each passing year. Failing at customer relations is the match.
Luckily, Cohen adapted by returning to academia, and graduate school shows her the way to transcend a world of shitty jobs and difficult roommates. Cal Arts came immediately after the diagnosis; the hole in Cohen’s head was oddly serendipitous. “I began the book almost immediately after the diagnosis,” she explained, and since Cal Arts is a nontraditional school, there was no reason to stick with poetry or fiction, so she chose autobiography and ended up studying with great teachers like John D’Agata (The Lifespan of a Fact) and Maggie Nelson (The Argonauts) in an era when writers like Jeannette Walls (The Glass Castle) and J.R. Moehringer (The Tender Bar) elevated confession to the level of literary nonfiction. In Cohen’s case, insights into her own mind’s workings could hardly be more relevant. “It was a two-year program, and I decided to be finished with the book in that amount of time. I thought I was finished, but I was very wrong,” she said.
Rewrite Time
She had a manuscript, and she began sending it out, mainly to first-book contests, including the prestigious Bakeless Prize and Association of Writers & Writing Programs; the latter earned her a book blurb by Susan Orleans (The Orchid Thief), who calls Head Case’s author “an exceptional, tough, indomitable character.” Which is as true in life as it is in written words. “I sent it out to a lot of agents; there were a lot of false starts, and it took forever,” Cohen said. She did get an agent, her (now revised) book found a publisher (more revisions), and a year and a half after that, Head Case hit the shelves. “I think the book kept getting better after each revision,” she said. “It’s more linear now. It’s a better book.”
Many moments of nonlinear fun remain, however, as do steeply considered reflections. Most of it is narrative, but the form is built around wit and a labyrinth — this is the story of a person who enters an unknown cave, confronts a monster, and emerges not knowing exactly how to explain the revelation. Or as she puts it toward the end of the book:
Invisibility is a poisonous privilege. I feel as if I’m constantly withholding and at the same time I don’t know how to explain, where to begin, how many times I’m going to have to repeat the story of my brain. The information that I lived a quarter of my life not knowing myself now feels essential for other people to know me. The other option is to let people assume untrue things about my character: that I am ditzy, not paying attention, silly, stupid. Maybe I’m not yet ready to let go of assuming these things myself. I want to be normal, and I want to be different.
It’s almost the superhero’s dilemma: Cohen created an alter ego through coping strategies (how to shop or cross a street, for instance), but the image covered up something rather amazing, something that sets her apart. And yet the truth revealed might destroy the persona; Clark Kent would cease to be if everybody knew his alien self. But identity isn’t the whole story, either. It’s the question “Why?” that Cohen — in her book and her life — is forced to re-ask. “They think I got this hole because I was wrapped up in the umbilical cord when I was born. But they don’t know for sure,” said Cohen, who enjoys telling people the hole in her brain is filled with Nutella.
Meanwhile, with the book out, Cohen has little choice but to address her revised self in public: She was recently on Rachel Martin’s NPR show Weekend Edition, was written up in the New York Post, and has gleaned positive reviews in every publication that matters.
Despite her trepidation, Cohen’s first reading at UCSB’s Miller McCune conference room in early May was crowded with friends, professors, students, and well-wishers, full of laughter and of questions about how she got published to how she gets around with such a large invisible disability. “I survive now because I have a great job and a great boss, Emily Zinn, at the Interdisciplinary Humanities Center,” explained Cohen. “But I have a lot of strategies. I print out everything. I make lists. I still get lots of things wrong.”
She gets a lot right, too. And a sense of humor helps, considering what might come next. Like who will play her in the movie. “Muppets,” said Cohen without even thinking.
4·1·1
Cole Cohen will be signing copies of Head Case Thursday, June 4, 7 p.m., at Chaucer’s Books (3321 State St.). For more information, call 682-6787 or see chaucersbooks.com.
Excerpt from Head Case
“You know, you don’t have to use that word — disabled.” My new Portland therapist frowns. She looks vaguely like my mom but she’s much meaner. I told her early on to give it to me straight; I can take it, I said. I’ve been on the proverbial couch since middle school — give me your best shot. “I know a man, whatshisname, he ran for office here … Roy! Oh, Roy, well, Roy has one hand, he lost the other in an accident, and he says, ‘I’m not disabled. Fuck disabled.’ He has an artificial hand. He can do pretty much whatever he wants.”
It’s important to me that the word disabled validates, in a very physical manner, my previously nebulous cloud of internal neurological symptoms. It is a very stable word; an assertive, clear word for cannot. As someone with an invisible disability, I use this uncomfortable word in part because it’s difficult. Disabled says yes, this is real. It says you cannot see it, but it is here and it can see you. Identifying as disabled also means that I carry all of the connotations of the word, none of them positive: helpless, damaged, etc.
I’m looking for a word that doesn’t exist yet. I’m looking for a word that unifies as it implies exclusivity. Having spent most of my adolescent and young adult life studiously, preciously, avoiding them, I find myself in my late twenties on the hunt for a label.
I have a word for the kind of person who I am not — neuro-typical — which would imply that I have a word for the kind of person who I am — neuro-diverse — but while it’s incredibly broad (encompassing, as the term implies, anyone and everyone whose brain functions differently than the norm), it’s also overtly clinical. Whether the word is coined, like neuro-diverse, or is a more charged word reclaimed from its negative connotation (like “crip” or “mad”), words about disability are used to compartmentalize more than unify.
I want a word that is a home address. I am looking for a name that pushes the role of language about disability outside of the binary of “can” vs. “can’t.” How do I find a word that simultaneously communicates strength and weakness? A word that recognizes that they are not parallel traits but instead shaped more like a double helix? Ability and inability are two hands belonging to one person, each shaking the other. I read in my phenomenology class that when you shake one hand with your other hand, it’s impossible to feel each hand individually clasping the other. You can see it, so you know it must be true, but you cannot feel the press of one palm independent from the press of your other palm. I am looking for a word for my body that articulates the intractable, invisible link between my weakness and my strength. I want to make it linguistically impossible for me to feel one without feeling the other.
Excerpted from Head Case: My Brain and Other Wonders by Cole Cohen, published May 19, 2015, by Henry Holt and Company, LLC. Copyright © 2015. All rights reserved.