Head Case (17 page)

“Oh, right. I guess I'll just have to have my
mom
hold the barbecue
for
me.”

I want some ritual to mark this transition into being. But nothing really happens. A couple of weeks later, my mom deposits the first check in my bank account, and slowly, over time, something starts to shift inside me, like a lens coming into focus.

For the first time, my perception is being validated. Someone sees what I see and shouts, “Yes, yes, there it is! Over there!” And still, until the phone call from Pam, it felt highly possible that my application for disability status would be rejected, ultimately negating my experience of the world. It felt possible that the federal government would call and say, “You're fine. Your father maybe didn't pay enough attention, and your mother maybe paid too much. It's not something to make a federal case of.”

This isn't the worst of worlds by far, but it is my world, and even though you can't see it, I am going to ask you to believe in it. On the one hand, I hide in plain sight; I
pass
. On the other hand, I am doubted.

 

June 2009

Oakland, California

Graduating from CalArts after two years of classes and workshops is like scrambling out of a bomb shelter into the postapocalyptic rubble of a world populated by the undead. While we were ensconced in workshops debating the use of first-person plural, the rest of the country grappled with the 2008 financial crisis. As we crafted performative cut-up homages to Rrose S
é
lavy, people more in touch with current affairs—those who are losing their homes to impossible mortgages, who can't find jobs, those we are joining—are looking to mythical immortal creatures for entertainment and catharsis. Books and TV shows are all about vampires or zombies. What we want and what we are horrified by are often the same. We're both the bloodthirsty zombie who kills to feed and the hero who happens upon a crossbow in postapocalyptic lower Manhattan. We want to live forever, and we want to bash in the head of anyone who dares to live forever. Financial analysts are pointing out that sales of horror movies and lipstick are up. The only time that your biological impulses make it impossible to think about anything is when you're either terrified or orgasmic. Banks collapse, unemployment rises, the housing market crumbles. In 2009, we are all gasping for breath. I'm poking my head out of my art school bomb shelter, looking to run for cover. “MFA! Mother Fucking Artist!” the school of visual arts graduates chant as they walk up to the podium during the graduation ceremony. When so little is in your control, that's when you amp up the bravado.

I'm at an early graduation party when I get a text from my friend Jackie that someone in her cozy little building in downtown Oakland is looking for a new roommate. When she tells me that the building is just a few blocks from the Twelfth Street BART station and in walking distance to Chinatown, I jump at it.

I read in a guidebook that the weather in Oakland, California, is most similar to that of the Mediterranean, sunny and balmy beach weather. I've never been to the Mediterranean, but I feel safe in assuming that weather is the only condition that they have in common.

One month after graduating from CalArts, I'm in Oakland, three hundred miles away from Santa Barbara and Charlie, trying to make it work with my new roommate. I resolve to be optimistic about my living situation.

When I head up from Southern California with Peter, my friend from Johnston, to check the place out, I'm greeted coolly at the door by my would-be roommate, a blonde with a ragged pixie cut poking out from under some sort of straw lounge hat with a dark ribbon band; it's the kind of hat that makes me think of old Latin men chomping on cigars in Miami but seems to have been claimed by young white people. The hat is perched sideways on her head, complementing a vest covered with several gold chains. The pixie, Stacey, gives me a quick tour of the estate.

“If you flush the toilet, you need to wait ten minutes. So no courtesy flushes if you go number two, OK?” The place is immaculate, with wooden floors and a claw-foot bathtub. It looks like paradise compared to the six-person graduate housing apartment I recently fled.

“When my boyfriend lived here, this was our living room.” She points to the empty room that I am here to stake a claim to. I nod empathetically. “Oh, he left these.” She wanders to a small storage nook behind the kitchen. Two sets of beady, begging eyes look up at me from inside their cage. Rats. Rats and I have a complicated relationship. I am not disgusted or disturbed by them, but if I handle them I break into hives.
It should be fine as long as I don't touch them,
I think to myself. She says, “I kind of hate them. I bought them for him for his birthday, and he wouldn't take them when he left. I guess that's what you get for buying someone an animal for their birthday.” She shrugs, cueing another empathetic nod from me.

“So how do you want to do this?” I ask tentatively.

“Just make the check out to me. It's month to month, so you can leave with a month's notice. Or I can kick you out.”

I laugh nervously and hand her a check for more money than I've ever handed a stranger who didn't work at a bank.

The apartment is precisely decorated, if cramped. I try to think of the dominant colors in her decorating scheme, light blue and brown, as our team colors. The blue and brown towels, carpeting, curtains, living room table are all cheerleading us on as a team! I try to reconsider the owl as our mascot, to make peace with the owl pillows, the owl candlesticks, the small porcelain owl and the stone owl, the owl dishes, the owl potholder. When she reorganizes my groceries and my toiletries, I try to think of her as a spatial savant, rather than OCD.
I can handle this,
I think.

The night that I moved in, Stacey left a key under the doormat for me. She's been away from the apartment for several days. Alone in the apartment, I try to find space for my stuff. No luck—the cupboards and hall closets are all filled to the brim with her things. I leave most of my stuff in boxes until she turns up. Finally, one afternoon she comes home and heads straight for the bath. I'm in my room with my college friend and former Portland roommate, Kristy, who now lives a couple of hours away from me in Sonora.

“This is ridiculous. You get in there and say hello to your new roommate, Cole.”

“What? Get in the bath?”

“Once she comes out and goes to her room, count five minutes on your cell phone, and then go knock on her door.”

“Ugh.”

I gently knock on her door.

“
What?
”

I seem to have come to call at a bad time, but now there's nothing left to do but soldier on.

“Hi!” I say brightly. “I'm here, and I just wanted to say hi.”

“Hold. On,” she says firmly, then slowly answers the door.

I wave my hand frantically, more of a drowning, out-to-sea look than a felicitous gesture. Smiling broadly, I look as if I'm about to enter an incredibly gracious seizure.

She is holding a makeup compact and standing in front of a mirror.

“Well, I'm getting ready to go to class.”

“Oh, OK. Sorry. We'll talk later then.”

I retreat to my room, my heart pounding.

The next night, she apologizes and welcomes me with a big hug. She smells like burning plastic.

 

July 2009

Tucson, Arizona

Charlie and I are staying at a Motel 6 in the desert. CalArts granted me a stipend for the trip before I graduated, to be recouped in receipts once I return. For now, though, everything has to be paid for up front. This is why we don't have a rental car and we're staying in the cheapest hotel we could find. Tomorrow, our plan is to take the bus together to the ornate hotel hosting the annual Society for Disability Studies conference, where I'm speaking as part of a panel on disability studies and the arts. This is my first academic conference.

Charlie's presence is the insurance I have taken out against myself. He translates the maps for alien bus routes. To me, reading this picture of tangled loops in order to get where I need to go is akin to looking deep into a plate of spaghetti to find my fortune. He also enters into lengthy negotiations with the motel for towels. I've already been rebuffed twice by housekeeping.

Since we couldn't afford to rent a car after all of my stipend allowance went to lodging and plane tickets, we walk across the motel parking lot in the blazing heat to the closest food source—a Carl's Jr. The Internet at the motel is down, leaving me unable to access my paper, which I had, of course, emailed to myself at the last minute. The night before the conference, we take a couple of buses to the hotel where it will be held.

Each of the conference rooms is named after a different species of cactus. My panel will be in the Agave Room. Charlie walks with me through the hotel to the room where I'm assigned to speak, pointing out visual landmarks—a water fountain, a plaque, the bathrooms—so that I won't get lost on my way to the room where I'm going to present.

“OK, now, do you want to try it yourself?” he asks.

I nod. My independence is won by careful preplanning. I walk the route from the hotel lobby, noting the water fountain, the bathrooms, the plaque for the Agave Room, then walk back.

“OK?”

“OK.” I feel brittle, overwhelmed and nervous, but I'm doing my best to keep it to myself.

“Look!” On the walk back to the bus stop, Charlie points out tiny birds living in holes in the cacti. He can tell by my silence that I'm anxious, and he's wisely attempting to divert my anxiety by drawing my attention to tiny, cute animals. But tiny birds cannot save us now. As soon as we get back to the motel, I exhale in a torrent of tears, “This is like living in a fucking Sam Shepard play!” and then retreat to the bathroom, where the floor is cool, still slick in spots with moisture from our showers. He waits, betting correctly that I will feel embarrassed shortly after. I come out of the bathroom to crouch tentatively on the corner of the bed. He sits on a Formica chair by the window. We've kept the shades drawn ever since a van pulled up next door and a man began unloading a series of large plastic vats into the room next door.

“What do you want? Do you want to move to another hotel?”

“No,” I sob. “We can't afford the difference.”

Neither of us says anything for several minutes until Charlie breaks the silence in his measured, quiet tone. I have to stop sobbing in order to hear him.

“Right now. All. I. Want. To. Do. Is whatever. It. Takes. For you. To stop. Crying.”

I pick up my head from my hands and smile, sheepishly.

He has begun scribbling on our receipt from Carl's Jr.

“What are you doing?”

“Hold on.”

He continues scribbling, then opens the phone book.

“I am going to get us a rental car.”

“A car?”

“A car.” He is all business now. “OK, if I'm going to catch the bus to the rental place in time, I have to leave now. I'll use my credit card, and we'll split the cost when we get back.”

“Here.” Lacking a credit card, I give him all the cash in my wallet. “In case you need to take a cab.”

He returns with a red SUV. The next morning, I swallow a handful of herbal antianxiety medication with a swig of bottled water, and we peel out of the parking lot and head for the hotel.

Academic conferences infer expertise, exclusivity, a conferring of like minds. They're another respite from the body, a meeting about ideas. At the disability studies conference, this difference feels uniquely pressurized.

I'm the last to speak on my panel. My video clips of Orlan, the performance artist I'm speaking about, won't load, and I struggle with the mouse on the unfamiliar computer. I scroll up instead of down, losing my place multiple times as I'm reading my paper aloud. I've almost run out the clock on my allotted time attending to these issues. “Just go on to the slides, then,” the moderator says gruffly, but my PowerPoint refuses to load.

During the Q&A, I take a question from a woman in the front row whose skin looks as if it's melting off her face. She's boney with thin blond hair. A pale pink pillbox hat is perched on her head. My first thought is that I wish that I could pull off a hat like that. My next thought is that I can see her tongue and that it reminds me of the dry pebbly tongues of my dad's cockatiels.

“I'm just curious about what you were going to say about Orlan's use of body modification as plastic surgery … because I've had several surgeries and each time the surgeons would tell me ‘You know, we could change your nose. We could work on your face.' And I just thought …
No thanks
.” She tightens her lips into a small, wry smile.

I look down at my notes about the French performance artist.

In Orlan's surgery series, her own face became her mask, a highly personal canvas portraying the malleability of identity. However, this is only the first level of her masking. Her greater masking is what draws your attention to her work: the inherent female carnival grotesque involved in plastic surgery as body modification art. Through this mask, Orlan is able to draw your attention to the face and subvert our attachment to physical identity.

What the hell do I know about “subverting our attachment to physical identity” that the woman in front of me doesn't know already? My head swimming, I look up at her and back down at my notes.

My mask is not just in the hiding of my disability; it is also inherent in how I choose to reveal it. My body, my head, is a physical container for my brain—the site of my neurological disability. It is also a mask of normality, carrying in my physicality the outward assurance that I am just like everyone else. This is only one mask that I wear. The other I put on when I choose to reveal my condition in writing. In articulating my difference, I make textual choices in tone, style, and construct that reveal as they hide.