by Cole Cohen
I approach the neuropsychologist as if she were my physical therapist. Together, we will strengthen my brain as if it were a muscle instead of a vital organ. It’s a natural concept: I am sick, I will get better. I am weak, I will become strong. Now that we’ve identified the problem, we can begin working toward the solution.
If Dr. Volt had said that there was nothing to be done, I would like to believe that I would have worked toward accepting that. But no one has ever said that because no one can really say. What we know about the brain will always be outweighed by what we don’t know about it. This is as much an advantage as it is a disadvantage.
“What are we going to do together?” I ask. “There must be something akin to physical therapy for this, like they have for stroke victims.”
She furrows her brow. “There is no physical therapy. Our time together is more about compensating than strengthening.”
I don’t know what to make of this; surely there must be more we can do. Put me on a treadmill, strap electrodes to my head, bring out the flash cards—I’m begging you. I’m an eager student, ready to practice skill sets and strategies.
She pauses for a moment. “Have you ever considered a guide dog?”
She asks me to complete a test involving drawing dots on lines with a No. 2 pencil. While I draw dots on the lines, I fantasize about the dog.
The second and last time we meet, the neuropsychologist, who cannot prescribe medication, suggests a prescription for Wellbutrin and slides a photocopied chapter from Driven to Distraction across her desk to me. (My mother has owned a copy of this classic ADD/ADHD tome since my ADD phase in the early 1990s.) This is it? A prescription for antidepressants and a photocopied chapter from a book on ADD are my “tools for coping”?
I show her a printout of the MRI; she stares at the photo and then at me, saying nothing. No one had given the neuropsychologist my MRI results. This is like the first faux pas on a blind date. Starting with the first signs of abnormality during my testing with Dr. Volt and his resident, and continuing to my quickly scheduled battery of tests and X-rays and, then, all the time that Dr. Volt dedicated to helping me and my family understand my “condition,” I had been wooed by the medical establishment. I have the email addresses and phone numbers of everyone who’s treated me; I’ve been encouraged to stay in touch. There is that moment when you can look back at a failed romantic relationship and spot the first sign of trouble. Excuses that sounded valid at the time seem so obviously preposterous when viewed through the lens of the aftermath. I look back at this moment, when I debriefed my new neuropsychologist on my condition and we huddled together over a printout of the email attachment that contained my MRI, and think now that this was where it all began. I should have known that the medical industry and I were at best a bittersweet match. I don’t want coping strategies; I want strengthening exercises. I want a plan, goals, strategies, charted progress. I want to get better.
* * *
“This is Chris Smith, calling from Dr. Volt’s office. I have the number for a guide dog for you.” The number he gives me is for Guide Dogs for the Blind. “Call them up—we should be able to get the ball rolling on this guide-dog situation. And here’s my number—please give me a call if you run into any speed bumps.”
“I will—thank you so much for getting in touch with me!”
And then he ends with the words I’ve been waiting so long to hear: “I will be an advocate for your disability needs.”
I call the local number Chris Smith left me, and a woman connects me to the California office to start my intake.
“Guide Dogs for the Blind,” the woman on the line says flatly.
“Hi. I’m inquiring about a guide dog. I’m not sure where to begin. I was referred by my neurologist; I’m fully sighted, but I have a neurological … condition. I have a difficult time judging how far and fast objects are moving in space. It’s a sort of spatial blindness, I guess.”
“So, I’m sorry—you are fully sighted?”
“Yes. I was hoping that a dog would help me with crossing the street or getting through a crowd, since I have a difficult time with moving objects.”
“Well. That’s not exactly how it works. First of all, you have to be legally blind to receive a dog from us. Second of all, even if we could give you a dog, it wouldn’t do what you want it to. That’s not how it works. The guide dog doesn’t tell a blind person when to cross the street. The handler listens to traffic, makes a judgment, and then gives the sign when to cross.”
“Oh. I see.”
“So I’m afraid we can’t help you with a dog.”
“I see.”
“But how about a cane?” she says.
“A cane?”
“Yes, you know, a cane.”
“But—OK—correct me if I’m wrong here. How exactly does a cane work?”
“Well, it would detect an object on the street. Like litter, or the curb, or a person.”
“But I am fully sighted.”
“Right.”
I try a new tack.
“So … OK. It sounds like a cane is for trouble with immobile objects.”
“Yes.”
“And I have problems with mobile objects.”
“Right.”
“So, I’m not sure how a cane would help me.”
“That’s true. That’s a good point.”
We are both momentarily silent.
“Well, a cane would notify drivers of your disability. Drivers would see the cane and slow down. You should really look into a cane. Well, anyway, they wouldn’t be able to give you a cane unless you went through training. You meet with a person about how to get around town more easily. But that would be the Oregon Commission for the Blind. Here, let me give you their number.”
“But … I’m not blind.”
“Yes, I understand. But in order to get a cane you need to go through training, and the training might be helpful for you. It’s meeting with a person who shows you how to navigate about town.”
If I want help, I need to fit under a code so that people and companies and governments can receive funds in exchange for helping me. There is no template for how to help me, but there is a template for aiding the blind. If I can slide into someone else’s code, it may be my only bet for receiving any services. So I take the number and thank this woman and hang up, in part because I lack the energy to explain to her that first, I would have to teach my teacher how I get around town based on visual landmarks. I am going to the blind to learn how to see. I think Simon and Garfunkel wrote a song about this once.
I wish that if people couldn’t help me, they would just say, “I’m terribly sorry, I can’t help you.” Sometimes it’s really hard for both the other party and me to tell where this line is. It’s a line that no one wants to cross unless they are certain.
I call Chris Smith’s office.
“Hi, I’ve run into a road bump. I called the number you gave me, and I spoke to a woman in intake. She offered me a cane, which is … not exactly what I’m in the market for.”
“Right. Because you’re talking about spatial motility issues. A cane wouldn’t help you.”
“Right.”
Waves of relief run off me that are so strong I swear I can see them—little black squiggly lines of steam.
“Well, I’ll call them back and explain. We may have to get Dr. Volt involved, and he may have to call them as well. But we’ll get this all sorted out, don’t worry.”
“Oh, thank you so much! Can I just ask you one question?”
“Of course.”
“What is your position at Dr. Volt’s office?”
“I’m a licensed clinical social worker. I usually teach new doctors how to work with social services, but Dr. Volt asked me to look into your file.”
“A social worker! That’s, that’s so great! Thank you!”
“No problem.”
And then he says it again: “Don’t worry, Dr. Volt and I are here to advocate for your dis
ability.”
I don’t call the Oregon Commission for the Blind. A week later, I am writing in a coffee shop when I get a call from Chris Smith; I walk outside to take it.
“Well, it seems that Dr. Volt and I have run into a few stumbling blocks as well.”
“Oh, really?”
“It seems that in order to get you the training to get around, you’d have to be legally blind.”
This being the Oregon Commission for the Blind we’re talking about, I can’t say I’m shocked.
“Dr. Volt is going to write a note explaining your situation. You must be really frustrated.”
The conversation with the guide-dog lady exhausted me.
I hear him say, “You must feel al—” Then he changes his tactic: “Do you feel all alone in this process?”
I am deeply thankful to be able to participate at all in the medical system. It is, however, a system first. I am an anomaly, which is a pretty valid reason for feeling alone in this process. I want to say: my job, your job, is to fit me into a system that relies inherently on templates so that I may receive care or aid. If you had any idea how much I depend on you, a voice on the phone, a complete stranger, to enhance my daily quality of life and how helpless that makes me feel, you would not ask me a question like that. You ask me a question like that, and I cry and you comfort me, and I thank you and you get to hang up feeling as if you’ve done something, but I hang up without services. I am not going to break down, and you are not going to comfort me.
I am holding back tears as I say to him, dryly, “No, I am just very frustrated, and I’m sure that you and Dr. Volt are as well.” I am thankful that my voice does not quaver as he promises to be in touch, and I thank him and hang up. We never speak again.
* * *
“Yowza!” Dr. Z, the neurological chiropractor Nell referred me to, turns away from his laptop as if it just bit him. When I peer over his screen, I can see the digital scan of my MRI. “Did you see my neck snap back like that?” he asks me. I smile timidly, not sure if I’m supposed to be proud or embarrassed, feeling both.
He slides on his stool in a sleek swooping motion in my direction like a steel-limbed satyr, born part stool, and leans toward me as if to confide a secret.
“Do you shave your legs?” he asks.
“Yes.” I nod my head vigorously.
“Do you cut yourself often?”
“No, not really. But sometimes I forget to … shave one leg.”
Dr. Z’s eyebrows shoot up. It’s that look that I’m learning to recognize; a medical discovery is taking place.
“Which leg?”
“I … don’t know.”
“The left one,” he counters with certainty.
I shrug and laugh. “OK, the left one.”
He slides backward on the stool, without looking behind him, and abruptly brakes to a dead stop. “The hydrocephalus, the water in your brain, is on the right side. The right side of the brain controls the left side of the body. We know you’ve got some left/right confusion going on. I’m willing to bet you’ve got some hemineglect happening.”
“Hemineglect,” I parrot.
“You don’t recognize things on your left side. You see them, but your brain ignores them, or it takes longer for your brain to process them. You favor things, people, on your right side.”
“OK,” I say, lamely. I am right-handed; that’s about all that I can vouch for.
“Stand up. We’re going to do an experiment.”
I jump off of the examining table, and Dr. Z stands up and approaches me. He is standing in front of me, a few inches away.
“OK,” he says, stepping to my side. “What side am I on now?”
I twitch my fingers on the side of my body that he’s standing closest to and mime writing my name.
“Right?”
“Yes, right. OK, how ya feeling?”
“OK.”
“So.”
He takes one long, swaggering step to the other side of my body. My stomach flip-flops.
“And now?”
“Oh, yeah. Don’t do that,” I snap reflexively.
Surprised by my own reaction, I smile apologetically. He laughs.
“See?”
I nod.
“This makes you uncomfortable.”
I nod again, slowly. I’m becoming increasingly annoyed with this new game, which only makes Dr. Z more gleeful.
“Yeah, this maybe makes you anxious?”
I look down at the floor.
“My stomach feels queasy.”
“Exactly!” Dr. Z nods enthusiastically. “Sooooo…” He swoops back over to my right, and I ease up instantly. “We have to exercise that left side of yours.”
When I apply this information retroactively to reframe my day-to-day life, it fits so well into my experience that I’m surprised that I’ve never considered it. I often feel crowded or anxious, and because of that I have tended to think of myself as difficult or antisocial. Since I am not conscious of which is my left or right side, it never occurred to me until now that I’m more often uncomfortable when approached from the left, especially by strangers. I always considered my sensation of queasiness a symptom of my anxiety; I figured that my stomach was flip-flopping because I was nervous, not knowing until now that my disorientation is rooted in a physical condition. Until Dr. Z’s experiment I never realized how much the churning in my stomach feels like motion sickness.
I now know that the queasy feeling in my stomach when a vehicle whizzes toward me or past me at an incalculable speed should not be dismissed. Its origins are rooted in both a physical manifestation of my weakened perception and the reality that a car is headed in my direction at an incalculable speed, which also induces anxiety.
Each time I sit in Dr. Z’s waiting room for weekly sessions that summer before leaving for grad school, I bring the same book, an oral history of the postpunk movement. He tells me that my craving for repetitive four-chord structure is linked to the weakness in my right parietal. I need to strengthen my brain, not coddle it. This means moving all of the folders on my computer to my left side, sitting to the right of the professor in my grad school workshops, anything to force my right brain to process information coming from my left side. He prescribes highly structured classical music and opera in foreign languages, preferably non-Germanic because it is less like English, to be listened to through the left headphone only. I try, but it is like tightening my head in a vise; it makes every muscle in my body tighten in resistance, which must be the point.
* * *
“Do you remember learning to tie your shoes?” my mother asks.
“No, I know it was late. How old was I?”
“I don’t know, I just remember that we kept having to buy you Velcro shoes because you couldn’t get the hang of tying them.”
I laugh. In my memory, I had Velcro shoes because I liked Velcro shoes, but I realize that she’s right. I liked them not just for the sound of the Velcro ripping but because they fastened without laces. Tying one’s shoes really is a complex process, if you stop to think about it—all of the places that your fingers have to go, when to release the knot, when to loop; it’s a deft bit of handiwork.
“We kept showing you, kept teaching you little tricks, but it wouldn’t stick.”
“Well, eventually I got the hang of it,” I say.
“Yes, you know how to tie your shoes now. Right? Do you know how to tie your shoes now?” my mother asks.
“Yes, Mom, I know how to tie my shoes.” Then, while I’m on the phone with her, I examine my shoe collection. Pink ballet flats, black zip-up boots with wooden heels, dark red wedges, slip-on sneakers. “Oh my God, I don’t even own any shoes with laces.” I rack my brain and remember a pair of rubber-soled boots with laces that I left at home in Portland because they were too warm to bring to California. OK, one pair. Good.
“You need to go to a shoe store to make sure that you can still tie shoes,” Mom says.
“Mom, ob
viously I know how to tie my shoes. I just … it would seem that I still prefer not to.”
“And then there’s the grocery store. The vegetables are always to the left or right, and the dairy is always in the back because everyone needs milk and they want to make you walk through the whole store.”
I pause. “This is a mystifying conversation,” I say.
She sighs. “I know, I know, but how many grocery stores have you been in in your life?”
“Well, that’s sort of the point, isn’t it?”
“We’ve never really talked about this before, have we?” she asks.
“This is what I worry about,” she says, and I feel rotten. “I’ve seen you; I know you have this much trouble in a grocery store. But then let’s go to the next step: there’s a box store. And then bigger than that: there’s the mall. And then after that there’s downtown, there’s figuring out the bus and the streets and where to get off and once you’re off how to figure out which way you’re headed, and then, after all that, let’s say you have a job interview.”
“I know.”
She’s referring to my recent search for a job in Portland before I learned I had been accepted to grad school. I was late to or completely missed several interviews, and when I did show up I was a wreck, sweaty and anxious, already worried about the trip home. Eventually, my parents began picking me up and dropping me off for job interviews. I am unemployed and being chauffeured around by my parents. I have begun to wonder why I went to college at all. My mother continues, “And then there’s bigger cities…”
“And backpacking through Europe,” I say.
This sounds snide, which is not what I meant, so I try to explain: “Joe just got back from Europe; people backpack through Europe by themselves. This is, like, a thing that people do. They do it in books all the time. I’ve always wanted to do that.”
My mom says, “I just think … even if you went with someone, you’d just be so confused and dragged around by people that I don’t think you’d even enjoy it.”
When I was a child and my father still had the job in public relations, we traded houses with families in other countries several times. We put up a listing for our house, in Berwyn, a suburb of Philadelphia, with a description that included the number of our bedrooms and bathrooms and cars and pets, and if someone from Paris or Barcelona who was also listed in the book of listings wanted to swap houses with us for a month, they would send us a letter. That was how we went to Europe. I was a child then and not expected to do anything other than tag along. Now, as an adult, I am dead weight.