Head Case (21 page)

It's nearly impossible to afford living here, although more and more it seems nearly impossible to afford to live anywhere. Those who can afford to live here full time live a sort of parallel existence to the students at the university, who live parallel to the locals in service jobs at bars, restaurants, hotels, or chain stores in the mall. We live in the same small town, but we shop at different stores, favor different beaches and bars. The Mexican laborers live a parallel existence that I know even less of. All that I know of the family next door to our place, with three young boys who play soccer in the street behind our houses, is that they have a shiny new red truck and a collection of crushed beer and soda cans overspilling in several trash bags in the backyard, where the mother pins up the laundry to dry.

When people from Charlie's department, where he's at least four years away from finishing his PhD, mostly men in their late twenties or early thirties, or their significant others ask me what I do for a living, I tell them that I teach English online. This is partially true; I do teach intro-to-essay classes online sometimes. I don't know how to tell other people that the majority of my income comes from Social Security. I've made some offhanded comments about not being able to drive, explaining that I have a hard time telling how far apart the cars are or how fast they are going, and usually leave it at that. No one really notices or cares; most of my interactions here are made up of the same polite introductory small talk repeated over and over again before the students delve into departmental gossip and talking about computer codes.

Most of our friends here are newly married couples. I never really thought that deeply about marriage in my twenties until right after college, when three of my old friends from high school whom I'd been out of touch with all got married and divorced within the span of the same year. I congratulated myself on not getting married young, but it was really just a matter of circumstance that kept our roles from being reversed, one of those circumstances being that I'm terrified and they took a risk, were vulnerable and committed in a way that I wasn't sure that I could be. Now I suddenly feel as if I have to take a firm position on marriage one way or the other, especially because I'm signing petitions and voting to extend the right to marriage to everyone.

Once, when I was right out of college, just beginning the latest rounds of antidepressants and therapists, I met for an initial and final therapy session with a blond woman in her late forties with a thick headband. She had two large photos in the room of her sons in their military school outfits. “What do you want to be?” she asked me, and I spat out, “I want to be Patti Smith in the seventies.” She glared at me coldly and took her time replying. “You, my dear, are no hothouse flower.”

Invisibility is a poisonous privilege. I feel as if I'm constantly withholding, and at the same time I don't know how to explain, where to begin, how many times I'm going to have to repeat the story of my brain to people I barely know. This information that I lived a quarter of my life not knowing myself now feels essential for others to really know me. The other option is to let people assume untrue things about my character: that I am ditzy, not paying attention, silly, stupid. Maybe I'm not yet ready to let go of assuming these things myself. I want to be normal, and I want to be different. It's always been a gradient scale. Everyone has secret truths, circumstantial, biological, historical; everyone weighs what they are willing to risk in trying to connect with another human.

One afternoon while folding laundry together before Charlie leaves for campus, I instigate a fight. When he leaves for campus he often doesn't come back until late at night, and I don't want him to leave me alone again.

“I feel like you're pushing me away with your work,” I say to him as I'm folding towels in the bathroom.

“Well, I'm really into my work. And I need to be at school to do my work. So yes, then I am pushing you away with my work.”

Almost as soon as I moved in, he began spending more and more time on campus, at band practice, at the bar, anywhere but at the cottage that we share. I feel guilty because I know that he grew up taking care of his mother; I don't want him to feel as if now he has to take care of me.

His avoidance and my feelings of being misunderstood trigger some of my old “crisis behavior,” pushing him even further away. When he won't see me or speak to me for days, I feel as if I'm being boiled alive, and the urgency of this feeling extinguishes my ability to speak. Instead I throw my suitcase down the stairs, accidentally (I think) smashing a glass door at the bottom. Screaming for someone to love you is just as self-defeating as screaming for quiet.

Afterward I don't remember much other than feeling exhausted, as if a virus had racked my body. Charlie was left feeling terrified and powerless. When I told him how guilty and ashamed I felt, he chalked it up to “our wicked dynamic.” The more that I need him, the more he needs to escape me, and vice versa until all of our interactions become cyclical.

Feeling hopeless, I answer a Craigslist ad to see a room in a house a couple of miles away mainly to prove to myself that I can even as my heart is in my stomach. On the way to the house, I get lost and end up unintentionally circling back to our back door.

I sign us up for couples therapy, where I remain loyal to a fault to the narrative I tell myself of who we are, grad student and girlfriend temporarily displaced in a resort town. Our fights don't fit in the story of us. The more that I try to edit them out, the more the recut jerks and bucks against the frame.

“You lose yourself in relationships,” the couples therapist says to me. “You lose your sense of self.” She says “you're bright,” and it feels like a counterweight to something dark inside me, but I don't know what internal volume is being measured here.

He's a mirror, and I'm a bird who's mistaken him for a window. It's not the mirror's fault, and the bird can't help herself. In Charlie I see myself, and I see a way out. If I could only recognize my own reflection for what it is, all of this would stop.

For his birthday, I buy us tickets to see the same band that we saw the summer that we spent together in Seattle. It's been three years since I've seen this band, and I've turned thirty since then, and the opening band is so much younger looking than I can ever recall, and my head is spinning because of how quickly I have fallen through my twenties—as if I've been pushed through the open window of a high-rise only to bounce off the pavement, stunned and disoriented, but ultimately relatively unscathed.

The day after the concert, I sell three pairs of shoes to a secondhand store on State Street and use most of the ten dollars to see a matinee, a Woody Allen movie. It's the first time that I've ever seen a movie alone.

 

March 2011

San Diego, California

I'm here to fail some more tests and hopefully to use the data of those failures to make a new plan for strengthening my brain. Charlie is here with me, at this appointment with a specialist in unusual neurological cases, in part because I'm trying to prove something. I want him to see the doctors fussing over me in the hope that he will be forced to “get it” but mainly because I'm scared. When I feel overwhelmed by the spatial world, Charlie tries to comfort me by saying, “It's OK, you're just anxious.” I don't know how to get him to understand my anxiety as a symptom instead of a cause. He didn't want to take the weekend away from schoolwork, and he especially didn't want to drive to San Diego, but he came anyway. Now that he's here with me in front of the specialist and a few of that specialist's grad students gathered around a long wooden table, I'm worried that I've made a mistake. I'm nervous about what they think of us; I'm worried that they're looking down on me for bringing someone with me. I can't even believe that this specialist has agreed to see me, and I'm afraid of not being the good patient.

The specialist's eyes are rimmed red, and he's thinner than he looked on the clips of his lectures and talk show interviews I found online. “What's most interesting,” he says, “is actually how normal you are. You have extraordinarily few impairments for someone with such a large lesion. Anyone else, a stroke victim, with this, and the damage would have been severe.” I'm reminded of an interview that I read with a woman who wrote a book about odd objects that people swallow, either intentionally or as part of a carnival act or accidentally.
I think it's partly the nature of that which is incongruous
was how she explained to the interviewer her fascination with people who swallow tacks, padlocks, swords, spoons.
Something appears where it's not supposed to appear. And there's this sense of “How did this possibly happen? It seems impossible.”

This is the first time that anyone has wanted to study me for how normal I am. I feel somewhat ashamed for focusing on my incongruence rather than on how lucky I am to be so high functioning. I'm also uncomfortable with equating “normal” with “lucky.”

The specialist says, “So am I to understand there is no urgent need here, that you are just curious?”

At first, I'm taken aback by the question. Is he accusing me of being a tourist? Worse, is he right? I have the same questions about consciousness—the unfathomably complex jive handshake between my brain and my mind—as anyone else does; I just have a better ice breaker.

“Well, I've had this my whole life, so I guess I can't say that it's urgent, but I am very, very confused in my daily life. If you could help me with that, I'd appreciate it.”

“Then there's the issue of your depression or anxiety. You are worried about whether the atrophy will widen.”

“Well, since no one knows how it began or ended, why couldn't it open up again?”

“It can't. Stop worrying.”

I think of that old doctor joke:
Doctor, it hurts when I go like this. So stop going like that.

The longer answer, I think, to what it means to “stop going like that,” is to become comfortable with not knowing. What I'm here trying to rewire is the most essential part of how I parse the world, my perception. It's hard to “stop going like that.”

He starts pulling picture books of optical illusions from the bookshelf behind him, opening each one up and pointing to a specific jumble of shaded dots or maze of lines, each time asking, “Is there anything unusual about this to you?” About half of the time I see something, and half the time I don't. He and his graduate students are muttering “Interesting, interesting” to each other. “It's not Gerstmann's,” he says. It never seemed to make much difference if I had Gerstmann's or not, since I know by now that there isn't a treatment specific to that diagnosis that's any different from the coping mechanisms that I've been trying. His phone rings, and he says, “I have to leave for a meeting. Do you have any more questions for me?”

“Do you think the anxiety actually has to do with this?”

I've managed to ask my question as obtusely as possible, but he understands what I want to know and is generous with me.

“No, that would be the temporal lobe. Since you don't have any damage there, we have to assume that it is…” He trails off.

“Situational.” I finish his sentence.

He nods and gets up to leave for his meeting.

We spend the next three hours just inside the UC San Diego campus entrance with an elfin graduate student. “OK,” she says, “whenever a car comes, I want you to guess how many seconds until it will reach where you're standing; then we'll count together how many seconds until it actually reaches you.”

Several cars later, we've learned that I am consistently several seconds late in my estimates. With this in mind, all I have to do is shave a few seconds off my original estimates in order to be correct. I think that the idea here is that as my guessing gets better, my experience of it will also become more accurate, so that eventually the guessing will recalibrate my internal estimations. We head out to a busy intersection to count more cars, where the vehicles veering toward me are so overwhelming that I find it difficult to focus on the task.

In her office in the basement of the university, she rips up pieces of tape to make a grid of the floor, then jots down a map on a folded sheet of paper for me to follow through the taped grid. “Don't move the map, only hold it straight in front of you as you follow it.” After several attempts, the usual backtracking and retracing while holding the map stiffly in front of me, this task eventually proves impossible. I'm exhausted and weary, the way you would feel after cramming all night for a test. After the grid-on-the-floor test, the grad student says to me, “Oh, I think I get it! It's like you're in a foreign country all the time.”

 

June 2011

Santa Barbara, California

The Invisible Disabilities Association Web site doesn't offer much advice on whether or not to disclose your disability in a job interview other than “The decision to disclose is yours. Do what feels comfortable.”

I know Laura, the woman who's vacating the position I'm applying for, because she's dating someone in Charlie's program. “I know that they're looking for someone compulsively detail oriented,” she tells me.

I nod quietly.

“I'm sure you'll get an interview,” she goes on, “because you're such a great fit.”

A week later, I sit outside the Humanities and Social Sciences Building at UCSB rereading a book about how to prepare for a job interview and swallow some herbal antianxiety pills made from powderized silkworms or mushroom caps; I forget which. I sit down, and the rest is a blur, but something must have gone right. It's a half-time position, but still, it's a start.