“It’ll be no use putting their heads down and saying, ‘Come up again, dear!’ I shall only look up and say ‘Who am I, then? Tell me that first and then, if I like being that person, I shall come up; if not, I’ll stay down here until I’m somebody else’—but, oh dear!” cried Alice, with a sudden burst of tears, “I do wish they would put their heads down! I am so very tired of being all alone here!”
—Lewis Carroll, Alice in Wonderland
May 2, 2007
Inside my stomach it feels bright and cold like those old cartoons where the crow swallows a mercury thermometer and reels around the room clutching his gut, hiccupping in percussive squeals. My purse is clamped tightly under my arm; the gold clasp digs into my armpit. I am with my father—or my mother; I don’t remember who drove me and who was at work. I didn’t drive myself because I can’t; which is why I’m here. I’m not moving to Southern California for grad school without knowing first how to drive, and since I was fifteen no one’s been able to teach me how to and no one, including me, has been able to reason out what’s stopping me. When I try to drive I get disoriented, overwhelmed, and tired, but doesn’t everyone at first? Both parents will be summoned to the next appointment.
I think that my mother was with me. She’s the one who teased out the first thread by calling the Physical Therapy Department of Providence Hospital; where we are now, but instead we’re in the Neurology Department. When my mother called Physical Therapy asking to speak to an occupational therapist about my symptoms (disorientation, exhaustion, not knowing left from right, not understanding where to place my hands on the steering wheel during a three-point turn) and to schedule an appointment with a driving specialist, the occupational therapist who answered the phone told her that my symptoms sounded neurological. In retrospect this sounds obvious, but of course, in retrospect it all sounds so obvious. In this waiting room, where I am the youngest person by forty years other than my mother because the neurologist specializes in “geriatric assessment,” nobody knows anything yet. We’re all sitting together in the cell reserved for anticipation.
The physical therapist recommended that I see Dr. Volt, who is known for “solving puzzles.” The scheduling happens around me during phone calls that are later reiterated to me. I fill out paperwork, sign medical information release forms, mail them to the receptionist, and wait.
This afternoon we wait for half an hour I think, but since I’m particularly inept at calculating time as it passes I can’t be sure of this either. The wait feels simultaneously slow and fast; interminable and bound to be over far too soon. I don’t especially look forward to being granted entrance to the other side of that door.
This is an experiment for all involved: the neurologist, my parents, me. The previous evidence, stacked in a filing cabinet in my parents’ garage, suggests that this is another pointless exercise. The first file (Testing—Dyslexia) dates back to kindergarten. There’s also middle school (Testing—ADD/ADHD) and high school (Testing—Motor Visual, Testing—Vision). The files are full of my handwriting samples in both print and cursive, my drawings of squares overlapping circles, Scantron sheets, more drawings that I made when a school psychologist asked me to show her what a “happy girl” looks like, what my family looks like; the “happy girl” has wings and wears a crown. There are yellowing copies of worksheets with the prompts “I am good at:” and “I am bad at:”, unsolved math problems, and pages of typed notes from various school district learning specialists. In the file dedicated to my driving issues, there are old failed tests, flashcards, and handbooks. My parents are both researchers. My mother is a librarian and my dad is a philosophy professor; I am their longest-running joint research project.
I imagine a long-running quiz show, led by a host with a fiberglass smile and a skinny mic. Name That Learning Disability has been on-air since 1984, when it took me several months to learn how to tie my shoes in kindergarten. It’s been running since then, featuring episodic intervals of test bubbles to fill in, blocks to stack in the correct pattern, flashcards to name.
Each round of testing was gingerly posited to me with the same phrasing. “We’re just trying to figure out what’s really going on.” What’s really going on is that I am horrible at math; I don’t know my left from my right; I can’t judge distance, time, or space, read maps, travel independently without getting lost; or drive. As long as I’ve had these issues, I’ve had coping strategies. You may think that I’m kind of odd in that wacky-professor sort of way. I’d forget my head if it wasn’t screwed on straight, et cetera. But you would never realize that as I’m walking next to you down the street, you are leading us both.
The trouble is routine, schedule, structure. This is why the academic world works well for me, part of why I’m headed to grad school in a couple of months. Semesters, breaks, three-hour classes—it’s like having someone cut up my year into small little sections with a knife and fork and feed them to me.
The trouble usually starts with getting anywhere on time. From elementary through high school, getting me out the door and off to school was next to impossible for my mother, a daily ritual of exasperation. Finding all of my books, my other shoe, all a mess.
Once when I was in elementary school, I waited two hours for a school bus that never arrived. I didn’t know that it was a snow day, and neither did my mom, who had assumed that I’d gotten on the bus. I don’t know when a child gains a sense of time, or if this is something that another child would do. I don’t doubt that without a watch I’d do the same thing again, today.
One of the great tensions in my life is in the concept of a reasonable amount of time. Wearing a watch should solve this problem, but how long until I should check my watch again? Is it time yet to check my watch again? Should I wait longer? What about now? No, not yet. Because I swear, if I look at it one more time and it still says that it’s been only two minutes since I last checked it, I will scream. Right here, right now, I will crumple up and die. The bus will never come, but I can’t leave because I have to get to work; still, I swear I am certain that the bus will never ever arrive. It has been two minutes. It has been an ice age. Dinosaurs have been wiped off the planet, human beings drag their knuckles and scrawl in caves, make fire and learn to walk upright, invent the wheel, create and drive cars, go grocery shopping, and still I’m here waiting for the bus. Check the watch: five minutes. Progress. My life is spent either waiting or leaving someone waiting.
Being on time is a very calculated act for me. I have to focus all of my energy on following sequential actions, “I have to shower, then get dressed, then pack my bag . . . ,” and be careful not to get drawn away from the task at hand, or I will lose my connection to time the way a child loses a balloon into the air. I tie time to my wrist; I work hard to stay connected to a world that runs by a clock.
Grocery store shopping or visiting any big block store with never-ending aisles, say Costco, is inviting misadventure. If it weren’t for the invention of the cell phone I would be writing this from on top of a ten-year supply of paper towels. I’ve never been able to keep mental maps of locations, and written maps only confuse me. In stores, especially, I have learned to try to give in to it, to say to myself, “OK, I am about to get hopelessly lost.” I am then free to wander about the aisles of DVDs or vacuums like a toddler. The cell phone is an electronic breadcrumb trail allowing me to wander the endless aisles of a Costco or Target freely, one call away from rescue. It’s also much more private than the storewide intercom, the terror of my childhood. Getting lost in the store is not nearly as cute to clerks when you are twenty-six. Now I use my cell phone to call to report my location to my party, and then I stick to my mark until rescued.
The trouble is in touch. I can remember the first time being touched or touching any of my friends. The first time I hugged my college roommate, Miranda, was freshman year of college. We were both heading home for our first winter break. She said, “All right, bitch,” and put her arms loosely around me. It took me a minute to reciprocate. The first time I touched my friend Nathan, some drunken guy at a party kept jokingly trying to twist his nipple, and Nathan kept brushing him off. They were both trying to keep things in good humor, but it was starting to get tense. He and I were in conversation when the nipple twister attempted to strike again. “Cole! Help!” I put my hands lightly on Nathan’s chest so that my hands were drunkenly plucked instead of his nipples.
Touch is a very conscious act for me; it means I like you enough to risk negotiating the space between our bodies. My body in space is hassle enough. There’s the issue of pressure, of playfully punching a little too hard. Then there’s the issue of time; I’d much rather hug someone for too short a time than too long. Touch opens up a mortifying realm of misunderstandings for someone with an out-of-whack internal compass. So let’s just avoid it altogether, or let’s have a drink or two or three. Touch becomes less fraught when there’s an excuse for my fumbling. When I hug my close friends good-bye, they would be shocked to know that it’s premeditated.
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.
“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 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.
Copyright © 2015 by Cole Cohen