Head Case (2 page)

The trouble is in wanting: to be touched, to go out alone, to speak plainly of my experience without feeling as if I'm making myself out to be that pale invalid boy from
The Secret Garden
who sat in his wicker wheelchair beneath a tree and couldn't play with the other children. The trouble is in wanting desperately to be believed or understood—that this really is my world—and in simultaneously not wanting to be found out.

When I moved to Portland after college, where my parents had moved from Northern California while I was in school, we did “dry runs” of public transportation routes to work or the grocery store together. I always rehearse new public transportation routes with someone who can point out physical landmarks marking where I should get on or off the bus and what benchmark means I'm halfway there. I write notes for myself: “When you see the gas station, pull the cord for your stop.”

My first two years in the city I lived on Southeast Belmont Street, where I could walk the same route to Hawthorne Boulevard, a main shopping street with a large grocery store and several coffee shops and restaurants. I walked the same route every day, never taking shortcuts or winding through neighborhoods, until I moved to Northeast Portland and had to learn a new landscape.

There's a unique pleasure in living free from a solid sense of time or space. I've spent my mornings changing my earrings for the third time before I head out the door, blissfully unaware that I'm half an hour late for my shift at work or my class. I have an all-access pass to the place where time stands still. If dillydallying were an extreme sport, I'd have won the gold medal. There's a lovely self-involved gloss to my mornings, sitting on the edge of the bed spacing out and forgetting that I need to keep moving if I'm going to get anywhere on time. There is also the sense of shame.

I never know where my experience ends and the anxiety brought on by my experience begins. When I was in seventh grade, I wrote a report on ostriches. I was charmed by them because they are tall and long-legged and funny looking with big brown eyes, like mine. Fear can stop you from being kind, to both others and yourself. Ostriches will run like hell at the slightest peripheral sign of predators on the horizon; they will kick you in the shins if you get too close.

I rely on my verbal strengths to hide my vulnerabilities. Panic creates borders; it has charted all of my maps. Fear and avoidance grant the facade of some semblance of control, of safety. I am trying to learn not to fear possibility; still I am certain that I cannot survive being known.

Fear is also biological necessity. A friend once told me about a study he read somewhere in which ostriches, typically high-strung creatures who rely on panic as a driving force to outrun predators, were prescribed anti-anxiety medication. The medication worked; the ostriches were calm and collected and soon they were gobbled up by lions.

*   *   *

“Nicole…” I stand abruptly at the sound of my full name. The receptionist leads me down the hall and takes my weight, height, and blood pressure. She opens the door to a beige room with a table and a chair. I sit in the room and try to pay attention to the book that I brought as I wait for Dr. Volt for what feels like quite a long time. He says that we're just going to do some tests, that it's not a big deal and not to feel nervous. He proposes it as if we were about to spend a day at the mall. I nod and shrug and smile and repeat where needed. We are trying to make each other feel comfortable. I want him to see me as a good patient, and he doesn't want any trouble. He tells me that because this is a teaching hospital, a resident is coming, and that I can dismiss the resident for reasons of privacy if I like. His tone makes it clear that if I choose to do so, I must intend to undermine the future of Western medicine. I say it is fine, which it is.

The resident is late. I can hear him in the hall apologizing to the receptionist. Something about short notice and the MAX, the Portland light-rail system. The receptionist says to him, “We just thought you'd like to see this.”

He strides into the exam room straight out of central casting for a hospital soap opera, holding a paper cup of coffee; his blond hair is in a ponytail, his lab coat perfectly starched, and his black dress shoes are shined. He smiles bashfully at me. If he's going to be here, I am mildly insulted that he's late. Am I not enough of a learning opportunity for Dr. Shiny Blond Ponytail? But the resident stays. Worse, I can tell that Dr. Volt likes him. They trade a conspiratorial glance. Volt leaves for a moment; the resident and I make conversation.

“You're leaving for grad school in September?” he asks.

I nod. “CalArts.”

“Oh, in Los Angeles.”

“In Valencia. Sort of a suburb of LA.”

He nods. “Where did you do your undergrad?”

I respond, “Redlands.”

“Oh.” Silence. “My car broke down in Redlands, once,” he offers.

“That sounds about right.”

My senior year of college the town got a Chipotle, which was a cause for celebration. There's no way I'm going to live in another dead-end California town without being able to drive myself away from it.

I smile. He smiles. There is a strange current in our conversation because we must be the same age, only he is a doctor and I am a patient. We each have assigned roles here, but on any given Saturday night he could spill his microbrew on me in a crowded bar. Dr. Volt works mostly with Alzheimer's patients; the receptionist has been telling my mother for months on the phone how excited they all are to have a young person come in.

Dr. Volt returns, does his line again about a few tests and not to worry, I do my nod-shrug-smile shuffle, and we begin. He asks me to follow his fingers with my eyes, to name animals, any animals—as many as I can. He mumbles something to the resident. It sounds to me like “Craniolobeneurotemporalocular,” to which the resident nods and responds, “neurolobecraniotemporalmatter.” Dr. Volt sits very close to me, taps on each of my arms, and asks me to tell him which arm he is tapping on. Then he does the same with each of my fingers on each hand. There is more neurological terminology chatter between them. I am starting to get annoyed. I look Dr. Volt straight in the eye and say, “You're going to explain all of this to me later, right?” He looks at me as if I've spoken out of turn. “We'll talk about this at the end of the exam.”

He asks me to place my palm out flat, tells me that he will draw numbers on my palm with his finger.

“What number is this?” he asks.

“Eight.”

“And this?”

“One.”

“And this?”

“Zero. Zero. And I think that one's zero too.”

They start to get excited. The three of us walk to the hallway outside, where Dr. Volt tells me to walk away from them, then toward them. Then on my heels, on my toes. I overhear Dr. Volt say to the resident “see the duck walk, the stiffening of the gait…” I become self-conscious and loosen up at the knees. “There, now it's gone.”

Though they're trying to hide it from me, I can tell they're really getting worked up, and I'm getting excited too, though I don't know why we're all so excited. The tension mounts with each test; I feel like the quarterback on our little winning football team about to make the winning neurological touchdown; after I walk up and down the hall again we'll all high-five and throw the contents of the waiting-room water cooler over our heads. Instead, the end of the exam catches me by surprise. The resident leaves, and Dr. Volt takes me back to the room and tells me to talk to the receptionist about when to schedule my neuropsychological testing. I feel a bit let down, even a little used. I want to say, “Guys? Wait? Hey, guys? Do you want to, like, get coffee? Oh right, you already have coffee. I see.”

I try to stall Dr. Volt as he jots some final notes on my chart. “I'm used to leaving a doctor's office with … something. A diagnosis. Could you at least tell me what you saw? Did you … gather any important information?” He looks up from his notes and laughs. “Well, we won't really know anything until we get back your MRI and neuropsych testing. And maybe a PET scan … Then we'll all meet to discuss the results.” I stare at him blankly. “Here, go home and Google this.” He writes something on his prescription pad, tears off the page, and hands it to me.

“But I am often wrong,” he adds. “Don't hold me to it.”

On the slip of paper he's written “Gerstmann's Syndrome.” I think,
Oh good, I have a syndrome
. A syndrome feels as if it grants me more purchase than a learning disability, although really it's just a new name for the same set of symptoms.

*   *   *

I may have a rare neurological disorder, a mysterious condition, the main signifier of which is the inability to tell my pointer from my pinky.

What Is Gerstmann's Syndrome?

Gerstmann's syndrome is a neurological disorder … characterized by four primary symptoms: a writing disability (agraphia or dysgraphia), a lack of understanding of the rules for calculation or arithmetic (acalculia or dyscalculia), an inability to distinguish right from left, and an inability to identify fingers (finger agnosia).

This is the first description that I find when I punch “Developmental Gerstmann's Syndrome” into Google's search field, translated from Dr. Volt's scrawl. The definition is from the Web site for the National Institute of Neurological Disorders and Stroke.

Gerstmann's has the feel of a hot-dog diagnosis, stitched from a pile of leftovers. Take a tube filled with bovine guts; where some see a hot dog, others see a cow. Both would be right. Some doctors believe in syndrome as an end-point diagnosis, and others see it merely as a diagnostic tool to get to the heart of a larger illness.

Digging further, I find a June 1966 paper published in a medical journal called simply
Brain
. The medical investigation, “The Enigma of Gerstmann's Syndrome,” begins with a quote from the French author Andr
é
Maurois: “The members of the medical fraternity can at least classify our ailments in carefully labeled compartments, and that, in itself, is reassuring. To be able to call a demon by its name is half-way to getting rid of him.”

This quote seems to be intended as ironic because the author, the neurologist Macdonald Critchley, goes on, as best as I can understand, to tear apart the diagnostic framework created by Josef Gerstmann as a combination of symptoms that may not make up a stand-alone syndrome. To my understanding, it's the difference between a Pu-pu platter, a dish made up of smaller appetizers, and an entr
é
e. I don't know what this means for me, what the difference is between having symptoms or a syndrome at this point really, anyway.

*   *   *

“Nooooo … don't get an MRIIIIII!” my younger sister, Carly, wails into the phone. “On TV, whenever someone gets an MRI, they always have a seizure.” Carly is twenty-three. She works for a graphic design company making pamphlets for fancy new condominiums and lives in a nice apartment in the Pearl district of Portland with her cat, Margot. At this moment, I would much rather she put Margot on the phone. “Carly, put Margot on the phone.” Margot whines and breathes heavily but does not foresee imminent peril.

 

May 6, 2007

MRI Scan

A few days after my first appointment, my dad drives me to a different wing of the same hospital. It's a Sunday; the imaging wing of the hospital is barren. We have to rely on signs to lead us to the waiting room for my MRI appointment. Further crippling our endeavor, the coffee stand is unmanned. We circle around the wing three times until we are stopped in our laps by a security guard, who points us toward the MRI station. We lose our way a few more times. I debate with my dad the difference between an MRI and an X-ray. My win saves us from sitting in the wrong waiting room. I imagine that if my dad were here alone on a Sunday, he would have sat in that waiting room for hours, riffling through moldy copies of
Good Housekeeping
and becoming increasingly irate before walking out in a fury. The similarities between the two of us are well known in our family. We are generally not allowed to go out on errands together, but my mom is working at the library today.

There is no one at the MRI check-in desk, only a large sign instructing us to
PRESS BUTTON AND WAIT.
If only they had an equally large sign directing us to this button. We both search on, above, and below the desk. Dad begins to repeatedly press the desk, the phone, the chairs, while loudly making urgent buzzing noises. When all else fails, act out. It's a proven strategy, often provoking an immediate response to be negotiated into aid. I'll stop doing what you don't like if you work toward my goals.

Surprisingly, no orderly or security guard comes to quiet his imaginary buzzer. Eventually we find a big red button on the wall, accompanied by the sign
PRESS BUTTON HERE.

The hospital is mocking us, I am certain of it. We are being taking advantage of for the pleasures of the Sunday staff. Dr. Volt is looking down upon us from hidden cameras, taking notes and giggling gleefully with his resident, their eyes glazed over with manic joy.

My dad presses the actual button, and an amiable curly-haired twentysomething attendant in dark blue scrubs arrives at the check-in desk. “The button is hard to find,” Dad grumbles by way of greeting before slouching into a waiting-room chair. The attendant walks me down the hall to where the MRI machine is housed, making small talk about how our birthdays are close together and cracking unmemorable jokes. He takes me to a small changing station. “You'll need to leave anything with metal in it here.” He pushes back the cloth drape and walks away. I part with my hair band, my belt, and, with resignation, my underwire bra.

If you've never had an MRI, here are two contradictory facts to know: it's very loud, and you must lie very still for half an hour. You are given earplugs, which mainly serve as a placebo. The machine never makes this sound on medical dramas because you can't speak over it but in actuality the sound of a processing MRI machine closely resembles industrial music from the mid-1990s: repetitive, patterned, mechanical buzzing at various low frequencies, sometimes broken up by long, grinding atonal drones.