Head Case Read online

  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 André 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 entrée. 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.

  Trent Reznor stars in the music video I make for my MRI while lying very still. He is backlit in a light blue antiseptic shade of neon light, looking sternly into the camera. Reznor’s cameo is spliced with black-and-white medical imaging of my brain, which is interrupted by the requisite stuttering jump cut to graphic footage of ongoing brain surgery. When I grow bored with that and start to become really aggravated by the process, I pretend to be in a space shuttle. If you ever have an MRI, at some point during the procedure it is obligatory that you pretend that you are being shot into space. It won’t provide a great deal of entertainment, but it will help you keep your sanity while lying very still enclosed in a metal tube forced to listen to grating, repetitive mechanical bursts at great volume.

  The curly-haired waiting-room attendant had befriended my dad while I was in the tube, telling him stories of past patients. Dad and I say good-bye to his new friend and head for the car.

  “He was funny,” I say absently on the way home, looking out the car window.

  “I think he liked you.”

  “I guess that’s why he asked me to take off my bra.”

  May 30, 2007

  PET Scan

  The MRI takes pictures of your brain as a static organ—you could take an MRI of a dead person’s brain. But a PET scan captures brain activity or inactivity. A PET scan is a test that doctors on TV shows don’t order as often as MRIs. The process of performing a PET scan isn’t as dramatic or compelling. I have heard the term before, but I don’t really know what one is, even as I arrive for my appointment. The technician wears pink scrubs and white sneakers with pink laces and has pink streaks in her hair. I’ll call her Pink. She leads me to a small, closetlike room with a cot in it. She has some papers, whic
h she repeatedly ruffles and refers to. I don’t care what’s on anyone’s papers about me anymore.

  “Have you had a PET scan before?” asks Pink.

  “Um, no.”

  “OK, well, we’re going to put this fluid in your body, and it will tell us if the cancer is still there.”

  I laugh nervously. “No, you see, there is no … I don’t have…”

  She looks at me skeptically. “Well, that’s what the doctor put down as a possibility on your chart.”

  I laugh harder, then harder. I need her to join in to signal that she’s in on this joke, but she stares blankly at me. I’m alone in this coat-closet room in a hospital laughing with relief so hard that I’m going to cry because I’m so scared of cancer, scared of death. It’s as if this misunderstanding could call the cancer into being and only our shared laughter will keep it at bay. I’m scared of being mistaken for someone who is dying quickly because I’m not ready to think of myself as someone who is dying ever, at all. I take a deep breath and reiterate my stance. “He just put that on there to get the test covered by insurance.”

  She grudgingly accepts my angle. “So … why are you here?”

  I stammer through “Motor … spatial”—I make a motion with my hands like teasing out a Jenga puzzle piece—“issues.”

  “Oh.” Pink shrugs and begins to set up the bag of radioactive fluid to stick in my arm. I’m startled to see that it’s bright blue, and I’m now a little scared.

  Pink tells me to lie down, not to move. After she links my arm to this bag of fluid that I really don’t want inside me, she turns the lights off and tells me to close my eyes and stay calm. This is my penultimate test; everyone keeps poking me and prodding me and telling me I have cancer or a rare neurological condition but that I must stay still and remain calm.

  My youngest sister, Marni, is the only one available to pick me up after my PET scan.

  Getting Marni to agree to give me a ride is like physically ripping a train off the tracks with your bare arms. She is eighteen and has better things to do than pick up her twenty-six-year-old sister from the hospital. I’m certain that she’ll be late and quietly seething. Things have been tense between us since earlier this summer, when I spotted something anatomically amiss under her shirt and blurted out “Are your nipples pierced?” in front of our mom. But here, in this dark closet, I must not think unnerving thoughts. I can feel the cold neon poison traveling through my circuitry. I am tired, weepy, scared, detached, and amused, and I am doing my best to remain calm.

  Pink returns to flip on the lights. She walks me into a large room with a machine shaped like a doughnut and explains that I am to lie still inside it on a plastic plank as they take pictures of my brain. The blue tracer will highlight in the images the parts of my brain that are working.

  I already know what it is that I don’t know: how long an hour is, how wide a doorway, how to find the peanut butter in the supermarket, how to calculate a tip, how to tie my shoes correctly, how to get back home without getting lost on the way. How do you explain how long an hour is to someone? How do you describe the passage of sixty minutes; two sitcoms or maybe one cable drama? What can you get done in an hour? How long is an hour to wait? Have I been at the hospital for more than an hour this afternoon?

  What I do know: an hour is usually too far to drive somewhere last minute. It’s not enough time to get much schoolwork done. It’s very, very, very late if you were supposed to meet someone the hour beforehand. It’s the amount of time I give myself to get ready in the morning. Sometimes it’s too much time to get ready; sometimes it’s not enough.

  Standing outside of the glass doors of the hospital while waiting for Marni to pick me up, I watch a woman wheel her IV drip bag through the small rose garden by the parking lot. She repeatedly navigates her cigarette between a maze of crisscrossing tubes and into her mouth.

  June 13, 2007

  Neuropsychiatric Inventory

  This is the same battery of tests that I’ve been given since elementary school, copying shapes, defining vocabulary words, some basic math, a few memory games. They’re supposed to measure concentration, reasoning, problem solving, and memory. When I was younger, the tests weren’t explained much beyond the reassurance that it’s all to help make school easier for me, so I shouldn’t be nervous about them. The eraser on my pencil always tears through the same rough brown scratch paper that I’m given every time to figure out the arithmetic problems on. I still remember the pride that I felt during my first round of exams in elementary school when the tester held up a picture of an Asian-style building, asking me to name it, and “pagoda” jumped out of my mouth.

  It usually takes a couple days to complete the tests, but today we’re going to get them done in one long day. I’ve never been able to sit through them without feeling as if I’m on trial. No matter how many times I’ve taken them and how much older I am each time, these tests always terrify me. What are they really looking for? What can they see?

  PROVIDENCE COGNITIVE ASSESSMENT CLINIC

  Current meds (prescribed by outside physician):

  Seroquel 100 mg tabs (Quetiapine Fumarate)

  Lamictal 100 mg tabs (Lamotrigine)

  Rozerem 8 mg tabs (Ramelteon)

  Ativan tabs (Lorazepam)

  Neurobehaviorial observations:

  Behavior today at clinic: calm, cooperative

  Depression: endorses

  Anxiety: endorses

  Mania: denies

  Suicide ideation: denies

  Death ideation: denies

  If you don’t deny, they lock you away for two weeks. Then they let you back out.

  June 17, 2007

  Diagnosis

  I am flanked by my mother and father on the walk out of Dr. Volt’s waiting room. He stops us before we get to the exam room, a manila folder under his arm. We’re crowded in an awkward cluster in the hall. I have never before felt this precise hybrid of fear and boredom. “Mary,” he calls out to the receptionist, “I can’t get the MRI to show up on the screen in the exam room. I’ll take them to my office instead.” I hadn’t expected that we would be looking at the MRI images. Because no one called me afterward with the results, I assumed that there were none to speak of. But when you pay for big expensive tests, it does seem like proper medical etiquette to be shown the results.

  Dr. Volt takes a few minutes to print out his report and make sure that the computer in his office is running, then he calls us in from the hallway. He is behind his desk; the computer monitor is turned toward us. There are three chairs for us to sit in. I sit in front of the MRI image on the monitor, to the side of the other two chairs. My mom sits next to me, my dad next to her. I don’t understand the image in front of me. It’s a black-and-white splice of a brain, I assume mine, with an inky black spot on it in the shape of a lopsided heart. I tell myself that this is a spot on the film, which it’s way too large to actually be. It’s something not to worry about, something I don’t understand that the doctor will explain away. The image is too starkly obvious for me to process. The simplicity of it, a big black spot on my brain, renders me speechless.

  We are all staring dumbly at the image on the screen until Dr. Volt begins to speak. “So, this is your brain … and this”—he points with a pencil to the black spot—“is a hole.” The image comes into focus. It is not debatable. There is a large hole in the picture of the brain. The picture of the brain is a picture of my brain. That is my brain. He is telling me that that is my brain. We are silent; everyone is waiting for me to speak.

  “A hole.”

  “Yes.”

  “There is a hole in my brain.”

  Dr. Volt pauses for a moment. “Yes.”

  Behind Dr. Volt’s desk is a giant window, so clean that you feel as if you’re perched in the sky. There is a direct view of the hospital landing pad on the roof of a building below us. During our conversation a small helicopter has arrived, and tiny doctors and tiny nurses are attending to the fig
ure swaddled in blankets on top of the tiny gurney. I watch them hovering over the mound of blankets, watch them slowly wheel it away. I feel vaguely sad for whoever is down there on that gurney. I have to watch the gurney, the helicopter, the ant doctors, because I have to keep my eyes off the image of my brain. Everyone in the room is so quiet.

  I want to grab my mother’s hand, but I grip the chair’s arm instead. It’s as if how I take this news decides if I’m an adult or still a child. If I grab my mother’s hand, I might feel scared. If I feel scared, I might cry; if I cry, I lose.

  I take a deep breath. As I exhale, a question piles out. “My first question is: Why am I not dead or retarded?”

  “No. That would be the frontal lobe.” Dr. Volt seems relieved to have some medical business to attend to. “If it had happened here”—he points to the image with his pencil again, tapping the front of the brain—“then yes, you would have been dead or retarded. If you had had a stroke or something, say. But since it happened here, in the parietal lobe, on the side of the brain … you just lost some function. But since you’ve always been this way, we have to assume that it was developmental. Or trauma at birth.”

  “How big is it?” I ask. I look back at the screen. I see a black shape; a deflating balloon, a steak, a kidney. I don’t know how to translate this shape into matter lost.