Head Case (9 page)

 

III. Perseverance

“Would you tell me, please, which way I ought to go from here?”

“That depends a good deal on where you want to get to,” said the Cat.

“I don't much care where—” said Alice.

“Then it doesn't matter which way you go,” said the Cat.

“—so long as I get SOMEWHERE,” Alice added as an explanation.

“Oh, you're sure to do that,” said the Cat, “if you only walk long enough.”

—Lewis Carroll,
Alice in Wonderland

 

June 2007

Portland, Oregon

During the summer of my diagnosis, I'm living in Northeast Portland with a hip twentysomething couple in a key lime–colored house. John builds custom amps for a living and hangs out with rock stars. Astrid is a beautiful Swedish woman who trains horses. They seem incredibly nice and deeply in love. I have a room downstairs, and they live upstairs. I try not to let the cats out. Sometimes we all have beers in the living room and watch their latest Netflix order. More often, I just duck my head out of my room now and again and try not to get too much of their bliss on me. I think of myself as the mildly eccentric but nice-enough female boarder, like a peripheral character in a Dickens novel.

A week or so after that afternoon in Dr. Volt's office, I come home from work and pass John, bent over his laptop on the living room couch. “How are you?” he asks. What is amazing about John is not only that he asks this, but also that often, he genuinely wants to know. “I've got a hole in my brain,” I say, shrugging. I had said some vague things to Astrid about seeing the neurologist, so this information isn't coming completely out of left field, but now I'm trying to play off my shock as indifference.

“Dude, that's nothing. I knew a guy in high school who had a hole in his penis … I mean, in
the side
.”

I stare at him, which apparently encourages further explanation. “He used to …
streeetch
it out during homeroom.” John mimics stretching with his hands.

“Wow. That's, um, crazy,” I say.

“Yeah.” John nods.

I want a cure, a cast, a shot, a surgery. Isn't that how this works? The doctor finds a break and heals it. The neuropsychologist whom Dr. Volt refers me to looks like a midwestern housewife or a kindergarten teacher, generically maternal. I imagine that her demeanor left her no choice. She was drafted into a life of nurturing the disabled and soon began donning the costumes required of her role: denim dresses with sunflower appliqu
é
s. Today's ensemble is a beige tunic and a long strand of turquoise glass beads. I am eager to begin my rehabilitation.

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 disability.”

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.”