by Cole Cohen
It didn’t occur to my family at first that I might be eligible for Social Security, but my father had a conversation about me with a student of his who has a heart condition. The student suggested that we look into it. Even with his help, it took a year to find our way through the byzantine coding system that I would have to fit into in order to be recognized as officially disabled.
It takes me several drafts to fill out my Social Security paperwork.
1. Name of disabled person (First, Middle, Last)
NICOLE FREDI COHEN
2. Social Security number
084-92-3656
3. Date (month, day, year)
5/27/09
4. Your daytime telephone number
(503) 697-4499
Describe what you do from the time you wake up until going to bed.
• Wake up
• Drink pots of coffee (2–3)
• Eat breakfast
• Pretend to self and others that we can help each other become “better writers.” Try not to think too hard about this.
• Go to class
• Think about this too hard
• -Avoid cafeteria (crowds, lines, inevitable spilling, too many options) at all costs
• Eat hummus
• Eat lunch
• Glare at pile of reading for school
• Check email
• Consider writing a poem in the hopes of concluding global issues
• Miss parents’ cats
• Study/write
• Eat hummus
• Eat dinner
• Sneer with judgment at own bookshelf
• Watch TV
• Take off headphones
• Go to bed
In interpreting my daily tasks as official government business, I see how much extra time it takes for me to complete mundane chores. The organizational ritual of hanging up and organizing fresh laundry, for example—making sure that all of the clothes are hung facing the same direction, placing like with like; it takes me a lot of time, and I have to really force myself to do it. After my parents and I figure out the paperwork together and send it in, we wait to hear anything. I am categorized under “Impairments, Mental,” as subscribing to the subcategories (of which you must pick at least two) “Marked restriction in activities of daily living” and “Marked difficulties in maintaining concentration, persistence, or pace.” It’s difficult for me to consider myself someone with a mental impairment—I was raised in a family that values intellectual curiosity above all else—but if I learned anything in Dialectical Behavior Therapy, it’s that strength and weakness share a home in the head.
The woman who calls me for my Social Security interview has no first name. She does not exist outside of this phone call.
“This is Mrs. Dixon. I’m going to ask you a series of questions to confirm for me what you’ve written here on these forms for us.”
“OK.”
She is stiff and formal with me; I mimic her intonations. Mirroring is a simple and highly effective coping mechanism for blending in, one that comes automatically to me. This is how I ace interviews for jobs that I could never possibly maintain. Appearing competent, putting on the verbal version of a suit and tie, is one of my favorite things to do because I feel competent when I do it and am thus temporarily treated as such. I get the job, and it’s not until an average of three months later, when I’ve flipped the numbers while jotting down an important phone message again, or miscalculated the final total from behind a cash register and have to ring you up a fourth time as you are calling for my manager, that my incompetence is unmasked.
This interview is for the job of being disabled, and yet still I’m masking, trying to appear as “together” as possible. I have no idea what is expected of me here or how to be that person. I’m new here; even though I’ve never been anyone else. As a professional mime, taking my social cues from someone else, I don’t know how to interview for the job of being myself. Mrs. Dixon asks me to verbally certify that everything I say is the truth, and she is explicit about how everything that I say is legally binding in that if the federal government thinks that I am lying, I could go to jail and/or they could make me pay back any Social Security that I am granted.
All of her basic and straightforward questions about dates and time are exactly the kind that I have never been able to answer. I have a copy of my paperwork out in front of me with the amount I make in a month, in a year, and the dates I have worked. This is my script, not to be deviated from. Mrs. Dixon did not get this memo, however, because she keeps asking me questions that are not covered in my papers, forcing me to improvise.
“How many hours a week did you work at Vowel?”
“Ummm … I’m not sure … Can you hold on for a moment, please?”
I flip through the forms. The answer is not in here. How could it not be in here? I must be missing it. I flip through again; I can’t find it. I will have to say something. How many hours a week is it normal to say that I worked? Barring any knowledge of the correct answer, what is a proper guess? Eighty hours? Sixty? I worked part-time, so would it be more like fifteen? Thirty? How many hours generally pass from when I walk to my desk with a cup of coffee in the morning and when I break for lunch? I have absolutely no recollection. My brain doesn’t hold on to hours. I don’t understand calculating days in blocks of time. I understand “a long time” and “a short time,” although these concepts are constantly reversing and backing up on each other, since what feels like a long time can be a short time and vice versa. I would guess that I worked half a day at Vowel. Don’t ask me how long that is.
“How much were you paid?”
I answer straight from the paper in my hand while moving my finger over the numbers as a safeguard against flipping them, a commonplace act that in this moment could forever place me erroneously in a higher or lower tax bracket.
I practiced beforehand by reviewing the paperwork several times, but in the moment I’m so nervous and flustered that I can’t find the answers on the paper. I want to say: “I don’t know, OK? I don’t know what I made or how long I worked. I show up at a certain time, take lunch at a certain time, and then I go home. I get a check for that time; I put it in the bank. Just like you, I sleepwalk through these things without memory. Unlike you, I cannot fill in these blanks with assumptions. I don’t have that repository to draw from, how much I must have worked and how much I must have made. I have no idea. And that, Mrs. Dixon, is exactly why I am on the phone with you.” Instead, I shuffle my papers and try my very best to give the right answers, feeling confused and utterly helpless.
“I see … and how long have you had these symptoms for?”
“Uuuuuh … since June of last year.”
Is that right? Is that what she means? I have had this condition my entire life, but I have had this, this information, this diagnosis, this picture of a hole in my head, since last summer. No wait, that’s not right. It was the summer before last, when I was living in Portland in the key lime–colored house with the couple and their two cats, before the one in Seattle with Charlie’s fifty Speak & Spells. I am like a wind-up toy; placed down with the key cranked up and the motor spinning, I loop my way through months without direction, spitting out tiny sparks, crashing a pair of cymbals. I get turned around, picked up out of time, and placed back in a new hour or a new day or month or year, that easily.
I know the order of days in a week, but I have a hard time with the order of months in a year and an especially difficult time matching the name of a month with its assigned numerical order. I write out the names of months on checks and papers for school because I often write the incorrect numerical date. I try to ride time out, follow the structure of hours and days and months set before me, but I’m constantly thrown off and scrambling to get back on again.
The only way to place myself in time is through narrative, through telling myself the story of my life over and over. The summer of my diagnosis was the summer w
hen I terrified myself by actually getting into grad school, which was both better and worse than the summer before that, the summer when I terrified myself by not getting in.
By the end of our conversation, I’m certain that I have just flunked an interview for the job of being myself.
“You told her what? Call her back! Right now!” A soft-spoken librarian who spends her days wrapped in a cocoon of hushing, my mother is by nature not a screamer. It’s well known in our family, however, that if she’s yelling at you, you’re pretty much a goner. The most common mistake my sisters and I make is being the first to shout. But I hadn’t yelled!
I repeat myself, quietly, fearfully, “I told her I’ve had this since June of last year.”
“You call her back right now and explain that you were born with this! You were only diagnosed in June 2007!”
I weave my way through the departmental phone tree and punch in Mrs. Dixon’s extension and anxiously speed through my clarification.
“Hi. I’m sorry, I just have to explain—I was born with this. I have had these … difficulties since birth, but I had my MRI last June. Not this past June—the one before it. So I’ve had this my entire life. But I just found out about it in June 2007.”
“Oh. OK. Thank you. I am sure that is already clear in your files. But thank you for calling and clarifying.”
I call back my mom, who by now has returned to a more characteristically calm tone.
“I’m sorry; I’m sorry that I yelled. It’s just that you’ve worked so hard for this, and I don’t want it to get messed up now.”
I’ve worked so hard for this? There is an understanding now in my family that all of my previous testing, all of my mistaken diagnoses and the confusing prescriptions, all of the awkward shame of being mislabeled and misunderstood by both others and myself, were all time clocked in. The story of my neurological life is spelled out in those therapist’s blocks making up a pattern that I fumble to put together. Everyone’s life is a puzzle made up of infuriating patterns invisible to us, yet so painfully obvious to those who love us.
June 2009
Portland, Oregon
Once you’ve had one medical test with shocking results, no test is routine. Each one is a booby trap looking to sucker-punch you with some new insight into your mortality. Fear the stethoscope; become wary of the blood pressure cuff, suspicious of the stirrups. These tools, once your allies in preventative medicine, are now implicit in your demise. The only thing to do is to take off your hospital gown, put your pants back on, and go home to wait by the phone for that sharp snapback on the leash of your lifeline.
I am on the plane to Portland for the weekend, to return to CalArts on Monday. The Department of Social Security has requested that I submit to an optometry exam while it’s deliberating on my disability claim. Disability is ultimately a federal claim, but you begin by filing a claim in your state. Since my neurologist and neurological chiropractor are both in Portland, it makes the most sense for me to file in Oregon. My understanding of the circumstances surrounding this test is that whoever examined my file was not convinced that my condition is neurological. How you could look over my MRI results and come to the conclusion that the issue is with my eyes is beyond me. I doubt that I’m the one in need of vision testing, but I have no choice.
I’m feeling especially nervous about how my sisters will react to my visit.
My sisters and I have a joke we make when we greet each other after an extended absence. We hug and pat each other on the back, saying, “I’m hugging you, but I’m hitting you.” I don’t remember how it started, but it’s an analogy for our relationship, for the tenderness and brutality of sibling lives. It’s also another example of how the tension behind genuine moments in our family is diffused by a joke.
The night that Carly was born, my dad took me out for Chinese food. At dinner, I bit and scratched him and screamed so loudly that we were thrown out of the restaurant. Before Marni was born, Carly and I were required by our parents to attend a preparatory class at the hospital in New Jersey where she would be born. In the class, the hospital gave us pink pins proclaiming I’M A BIG SISTER! and we colored in pictures of fathers happily changing diapers. Twenty years later, we are still not prepared for Marni. We call Carly the white sheep of the family, as she was the only one of the sisters who ever made any effort to conform. Marni says that she’s most like our father “because I’m crazy,” and Carly says that she’s most like our mother because they share chameleon-like tendencies. Maybe I am the gray sheep, split between my black sheep father, who left the orthodoxy and his entire family to look for answers in philosophy, and my quiet white sheep mother, who worked in the library and hid behind a camera to make her art.
When I first heard of Marni’s piece about me for her college memoir class, entitled “Genius or Dunce,” my mom told me over the phone, “Let me just read you the end.”
“No, Mom, just—no.”
“Come on, let me just tell you about it! It’s not so bad! OK, so Carly and Marni are in the car, and Carly is driving. Carly turns to Marni and says, ‘You know, you and Cole might get along. You’re both weird.’ And Marni ends the piece with her saying ‘Maybe.’”
“Touching.”
Since then, I’ve read it in its entirety several times, and I’m trying to just sit with my responsibility for the anger steaming off her pages. Carly was already living in her own apartment when I graduated from college, but Marni was still living at home for the worst of my postcollegiate/prediagnosis swan dive. I was living in the house in Southeast with a rotating cast of roommates, but I was in such rough shape that more often than less I ended up at my parents’. At best, it’s embarrassing to be the oldest sister who hasn’t quite got a handle on skills for living on her own, while no one, including you, knows what the hell is wrong with you. At worst, I worry that the screaming fits and suicidal ideation that punctuated this period of my life, that took over our lives as a family, permanently marred any chance I have at a relationship with my sisters.
Marni is an eloquent writer.
They say that if you put two fists together, fingers folded, pressed in, and the bottom of your palms touching, it makes the size of your brain. Imagine the left pointer finger, middle finger, and thumb missing. Just fluid where they ought to be. That was the inside of Nicole’s head.… For a while, we tried to figure out how someone could be born without part of their brain. No one had any answers. We weren’t doctors. And doctors had never seen this before.
“Yeah, well, I thought you were faking too,” Carly told me offhandedly on the phone when I called her to see if she’d read Marni’s piece about me. “Then I saw the picture, and I thought, Holy crap, I’m an asshole.” We both started giggling.
Marni wrote that Carly always felt like the oldest sister to her. Though we never spoke of it, I am not surprised to read this. When they saw my behavior as a performance, their anger was justified. Now that we know that I have a real physical condition, the anger that was already simmering becomes a complex stew of resentment over a situation that we are all powerless to change. As the source of it all, I have always found it difficult to locate the proper vantage point from which to assess the damage I’ve caused my younger sisters. This damage was no easier for me to decipher sitting in front of my computer in Valencia, reading Marni’s essay, than it was when we were all under the same roof in Davis, or will be when we reunite in Portland when I deboard this plane.
“Is Cole going to be there?” I had to ask. She could change the family dynamic so drastically, I wanted to know what kind of family dinner this would be.
Marni wrote of my time at CalArts.
She suggested I look into the school; “they have a program on puppetry you’d like.” I promised to look into it. Haven’t gotten around to it yet. Haven’t gotten around to being her friend yet either.
There is a shadow family, one I don’t belong to, living in Portland while I am not. Carly is the oldest, and Marni is the
youngest. Because it’s a family that collapses once I enter the room, it’s one that I can never be part of. This is the natural consequence of my position as a priority in the familial triage of childhood. There are three of us and one oxygen mask, and I strapped it on first. I can’t blame my sisters if they can’t breathe whenever I’m home.
Part of me is looking forward to being back in Portland; it’s always somewhat comforting to be back among so many people striving to be different in the same way. On the plane, I read music magazines and books for school and avoid any and all eye contact with the passenger next to me, lest this person attempt to converse with me. Out the window I watch the tan and brown desert plains of Southern California morph into the greens and blues of Oregon.
“Folks, this is your captain. Looks like we’ve got about thirty minutes until the seat-belt sign goes on and stays on as we head into PDX, so if you’d like to head to the bathroom or stretch your legs one last time before we begin our descent, now would be the time. Aaaand if you take a look over through your right passenger-side window, you’ll notice the Three Sisters, the trio of volcanic peaks, one of the natural wonders Oregon is known for. You’re looking at the third-, fourth-, and fifth-highest peaks in Oregon, right over there on your right. Little history lesson, here, folks, bear with me. That top one, the North Sister, is the oldest of the three, with towering rock pinnacles and glaciers. Don’t worry, it hasn’t erupted since the late Pleistocene, over a hundred thousand years ago, people, and it’s considered extinct. We’ve got some packets of peanuts back here with a similar expiration date. But seriously, folks, it is the most dangerous climb of the Three Sisters, due to its level of erosion, and thus rockfall. North Sister, Nicole Cohen, often referred to as Cole, is also prone to mood swings, insomnia, fluctuations in weight, and an abbreviated attention span. So if you’re thinking of taking a hike during your stay in Oregon, this one’s best left to the professionals.