Head Case (15 page)

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 when 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.

“Middle Sister, Carly Cohen, is the smallest, at five feet four inches, and the most poorly studied. It is also the middle in age. Middle Sister is a stratovolcano consisting primarily of basalt but also erupted andesite, dacite, and rhyodacite. Middle Sister is also known for affection for young adult literature and the sale section at J. Crew or, preferably, Anthropologie. No reports on its potential for eruptions have been made. Silent but deadly, folks, silent but deadly.

“South Sister, Marni Cohen, also known as Mo to locals here in Oregon, is a long, steep, nontechnical hike that can be easily completed in a day by reasonably fit hikers. This particular volcano is also known for its gigantic Jew-fro, which is studiously maintained, and a tendency toward sarcasm and adopting stray animals and roommates. Little-known fact: South Sister, while being quite thin itself, is situated above a thrift store specializing in clothing for plus-size ladies, located in the basement of the surrounding territory. Popular starting points are the Green Lakes and Devil's Lake trailheads.
Aaaand
that concludes our tour of Three Sisters, folks.”

My father is the only one there to greet me at the airport, with our traditional family greeting. “Hey, it's Uncle Heshe!” he yells and waves his arms. This started when I first returned from college for breaks, and now it's been going on for so long that I'd be vaguely insulted if I didn't receive the proper familial airport greeting. We leave immediately for the giant Asian supermarket, where we eat at the food court without paying. I'm not sure if my father believes that because he teaches courses on ethics he transcends ethical obligations, or that teaching ethics justifies his personal obligation to subvert traditional concepts of justice and morality, such as paying for lunch. I tend toward feelings of affection for my father's spotty moral code, especially when it lands me free duck in chili sauce. Rule breaking makes for great father-daughter bonding.

We decide to check out the new aerial tram, a cross between a ski lift and a giant silver bean that glides over I-5 from the South Waterfront District to the hospital. Neither of us mentions that this is the first time that we've been back to this hospital together since he accompanied me for my MRI. As we glide over the pines and the tops of houses, I'm reminded of that PBS painting show that I used to draw along to with my crayons when I was little, the one where the smiling host with the scrub-brush hair encouraged his audience to paint “happy little trees.” I grip the guide bar by the window. A man on his cell phone next to me is arguing with the person on the other end of the line about his health insurance. The ride is pretty short; not long after we leave the ground we're pulling into the shiny metal dock on the other side of the hospital.