It's Only Temporary: The Good News and the Bad News of Being Alive (3 page)

Nancy smiled a wan smile and pulled away. We sat in silence for the next hour, embarrassed by our heartiness and privilege, and waited for the boat that would take us back to Manhattan. Where beauty and hope, brutality and destitution, possibility and limitations coexist in quantities large enough to be selectively ignored by those who choose to do so. I’d rather not admit it, but I must be one of them. Because that was over ten years ago, and I never rode the Staten Island Ferry again.

I’m in the miniscule, windowless bathroom of my apartment in Manhattan’s East Village. I’m standing over the sink, in the most cramped region of a poorly designed space, holding a scrap of fabric embedded with human hair. My own head is only partially covered with clumps of billowy wisps resembling what you’d find on newborn babies, or people with eight toes in the grave. I’m twenty-eight years old. I’m preparing to put on a wig.

I attach a large piece of double-sided tape to the wig’s fragile fabric, known as “netting,” at each side of the wig’s neckline in back. This is done by carefully peeling off just one side of the tape’s paper backing, then pressing the exposed sticky side into the wig’s interior. The netting of the wig is really hardly “fabric” at all. It’s a loose weave of delicate threads nearly as slim as the tens of thousands of hairs that have been hand-tied onto them to give the impression of a full head of hair.

Once the piece of tape is attached, I fold back one corner to aid in peeling off the other paper side once the whole contraption is on my head. It’s a tricky procedure, as the tape will often stick to my fingers more securely than it will to the wig’s netting. And, of course, that netting is nearly as delicate as tissue paper. I’ve got to be careful not to tear it. Once this step has been accomplished, I attach smaller pieces of tape inside each temple and the base of each sideburn. I bend forward to fit the helmet of hair over my skull. When I lift my head and see myself in the mirror, it’s like I’m looking back in time.

Not very far back. My hair expired in April of 1988. I’m in the bathroom in January of 1990. I’m trying to grow accustomed to a routine that I wish wasn’t.

My hair follicles suffered permanent damage as a result of medical treatments I’d completed just eighteen months earlier. I bought the wig to pursue acting jobs, the work I did before my career – and everything else in my life – was swept aside by a diagnosis of acute myeloid leukemia. The wig makes me look exactly the way I looked before I disappeared from view some years earlier. It is used to disguise myself into appearing unchanged.

Wearing the wig is uncomfortable, both physically and psychologically. Perhaps this has something to do with the odd looks I get from neighbors when they see me in the elevator, suddenly transformed from completely bald to sporting a full head of hair in the hour since they last saw me. That response has been less discomfiting than the friends who don’t recognize me, and whom I’ve had to re-introduce myself to, whenever I wear the wig in public. A Pakistani shopkeeper in the neighborhood looked as if he was going to faint during my second trip to his store one day. The first time I had hair, the second I didn’t.

“Do you have a brother?” he demanded, over and over. “Do you have a brother? There is someone else…someone just like you!”

Just like me indeed.

I’m putting on the wig for an important audition. Not only is it for an exceptional play at a top-tier off-Broadway theater, but the casting director working on the project is a man who has refused to see me since I offended him several years ago. We were at a party, surrounded by mutual friends from the New York theater community. The casting director was gracious enough to offer me a compliment.

“You’re a good actor, Evan,” he said.

“The best,” was my response.

Everyone who heard the comment was taken aback. Some conversations stopped.

“There are a lot of good actors,” he countered.

“Yes,” I agreed. “But I’m the best. I’m the best actor in New York.”

It was an appalling statement, especially in light of the company we were in. The room was filled with friends and coworkers of all the actors I’d just backhandedly disparaged. It was an idiotic and immature thing to say, even for a twenty-two year old. A desperate attempt to elevate the compliment as high as I wished it would have gone.

For years afterward the man at the party didn’t call me in to audition for a single role in any of his projects. When I heard about a new play everyone was excited about from other actors who’d been in for appointments already, I decided some old-fashioned groveling was in order. I called up the casting director and asked if I could come in to talk. I hoped that an apology, coupled with my near-death from leukemia and the four years I’d lost fighting to overcome it, might be enough to wipe the slate clean.

I put on the wig for our meeting. The casting director hadn’t seen me since I vanished from the scene years earlier, and probably had no idea how drastically my appearance had been altered. That was another reason for my seeing him. I wanted to show myself off as relatively unchanged before he ran into me on the street and formed opinions of his own.

I walked through the cold underground corridors of the theater where the casting director worked, my scalp slick with sweat. The tape holding the wig had already worked its way loose on one side in back. I kept pressing my fingers into my temple, hoping that the tape wouldn’t give way there as well, and reveal me as the impostor I was. On a mission of reparations, impersonating the young man I used to be.

Over the preceding five years, my existence had been all but erased. I had been everything but obliterated. In January of 1990, the fact of my existence was the only thing I possessed. And I was lucky just to have that.

Not that I was feeling fortunate. I knew the statistics, and how unlikely it was for me to simply be alive. But having barely survived acute leukemia; having lost the majority of the previous five years to its treatment and the treatment’s aftermath; having lost my status as a “promising newcomer” in the theater and film worlds (hell, having lost my ability to ever qualify for “newcomer” status again); having exhausted the girlfriend who’d seen me through the illness, but who’d finally left me to be with someone else (“He laughs at comic books,” was the final reason she gave, while I’d lost my ability to laugh at all); having lost my hair and all vestiges of the youthful exuberance it symbolized; having lost, in a sense, my very place in line, “lucky” is not what I was feeling. Don’t get me wrong, I knew I was. But I sure wasn’t feeling it.

The casting director and I had a pleasant chat. We discussed agents, and he gave me advice for reinvigorating my career. I made sure to tell him that, despite the overwhelming odds against it and the supposedly “incurable” nature of the illness I’d encountered, I was now officially categorized as permanently cured of leukemia.

I’d had several courses of the most intensive chemotherapy known to man at Memorial Sloan-Kettering Cancer Center in New York. It was a hospital I’d found to be saturated by arrogance and rife with practices that made the chances for recovery even more remote than might ordinarily be expected from an incurable illness. There was a drastic nursing shortage when I was a patient at Sloan-Kettering and the staff seemed overburdened and under-inspired. Over the course of my hospitalizations there I’d been medicated with intravenous drugs labeled with the names of patients other than myself, pressured to accept ill-advised and invasive procedures, and handled by staff members who refused to follow the hospital’s posted hygiene precautions for touching immunosuppressed patients like myself. Worse, whenever I complained about any of those transgressions or tried to improve the quality of the care I was getting I was scolded and derided as being ungrateful. “Why can’t you be more like Andy down the hall?” a nurse once asked after administering my crucially timed antibiotic three hours after its prescribed hour. “He comes around and helps us make the beds.”

The facilities were in worse condition than the staff. The wheels of IV poles were stuck or broken off, rendering patients immobile for the duration of their stays that could last weeks or months. I went on daily pillaging expeditions to other floors because there weren’t enough sheets and pillowcases to go around.

The illness and the institution weren’t the only treacherous aspects of the ordeal. The chemotherapy regimens I endured were extremely dangerous. By the time I’d passed through a first remission, had a recurrence, and achieved a second remission, half of those who’d been diagnosed and treated over a similar two-year time frame were already dead.

The problem with second remissions was that they were known to last, on average, only half as long as a first remission. Another recurrence was expected, it would most likely occur quickly, and third remissions were essentially unheard of. I traveled two hundred miles south to Johns Hopkins Hospital in Baltimore, where I was admitted to the bone marrow transplant unit. That procedure would offer what I’d been told was the only remaining hope for survival. It also offered the possibility of a host of complications that added up to a 25 percent risk of death from the transplant procedure itself. Of those who survived the transplant, a full 50 percent would soon relapse and die of leukemia anyway.

I didn’t share those details of my past with the casting director. I’d already learned that the majority of the information pertaining to my recent existence was too much for most people to absorb. I don’t blame anyone for that. I wouldn’t want to be cornered by anyone who’d been through what I’d been through, either.

But I did make sure to bring to the casting director’s attention a graph that had been published in the
New England Journal of Medicine
. It showed that the overwhelming majority of recurrences of acute myeloid leukemia after bone marrow transplantation occurred within twelve months. After that, the expectation was that the leukemia would not return. I wanted to make sure he understood, and that the world would soon know, that I was four months shy of two years. I would have liked to have a whole lot more meadow behind me, but I was officially out of the woods.

The casting director listened, and responded with appropriate expressions of sympathy over what I’d been forced to endure. He asked, as people sometimes do, just how lucky I’d needed to be to make it all the way through. “What percentage end up okay?” he asked.

“Beginning to end? I think about one in ten.”

Letting loose with that kind of information tends to put a crimp in any conversation, so I used the inevitable lull to offer my apology. I told him I was aware that I’d handled my past frustrations badly. I attributed my tactlessness to youth, and to the misguided notion that the way to be considered superior was to behave as if I were. I’d been more than humbled, I said, and I hoped that whatever had transpired in the past wouldn’t interfere with our being able to work together in the future.

“Oh, Evan. That’s all water under the bridge,” he told me. “That was all a long time ago. I’m just glad to hear you’re feeling better and are ready to work.”

Excellent, I thought. This is going very well.

Then he added, “Of course, I think a person’s emotional health has a lot to do with their physical health, so I wasn’t surprised to hear you’d gotten sick.”

I felt my face flush, then did my best to push the color back down below my neck. I took a few breaths, but chose not to get angry. Or, more accurately, I chose not to show how angry I was. I didn’t ask the questions that formed in my mind: “So, I got what I deserved? Is that what you’re saying? Acute leukemia in exchange for acting like an asshole?” I did some quick estimations, figuring that if arrogance and insensitivity were all it took to cause cancer people would be getting diagnosed by the tens of millions every day. But this time I didn’t say anything stupid. In fact, I didn’t say anything at all. I just nodded. I accepted the blow, and waited for what I hoped would come next.

“Here,” the casting director said as he reached toward a stack of scripts behind him. “We’re casting a new play by John Guare. You should take a look at the role of Doug.”

And so I got the chance to audition for Lincoln Center Theater’s world premiere production of
Six Degrees of Separation
.

John Guare’s play, to be directed by Jerry Zaks, was already the most coveted gig in town, months before rehearsals were scheduled to start. The gossip circulating around was that the role of Doug was already all but locked up by a young actor I’d often competed against for parts. He’d already had a big success a few years earlier at Lincoln Center with another Guare play,
House of Blue Leaves
, which had also been directed by Zaks. Some of the same competitiveness that landed me in hot water in the first place started to reemerge. If I could snatch this role away, I thought, I’ll have not only won a battle, I’ll have won the war. That other actor will be vanquished. And get the role I did.

The other actor’s name was Ben Stiller. Now you know my level of skill in military analysis.

I wore the wig to the first day of rehearsals. Since I’d gotten the role based on a certain appearance – a certain deception, if you will – I felt it was my responsibility to show up for work looking the same way I’d looked when I’d convinced them to hire me. As far as I knew, no one at the theater was aware that it wasn’t my hair they were seeing on my head. If I’d shown up for the first day of work without the wig, it would have looked as if a different actor had walked into the room.

But I didn’t want to be stuck with putting the damn thing on every day, and I didn’t want to spend my whole life pretending and hiding behind it. It made me self-conscious, not to mention more than a little concerned about the possibility of it getting accidentally knocked askew, or falling off. Even if all eventual revelations of my wig-wearing status were intentional, that lifestyle had the potential for some mighty awkward second and third dates. Sexually active singles are generally used to taking off their clothes in front of each other. I’m not sure how many women have seen their date remove the hair from his head.

At the end of the first day’s rehearsal I approached Jerry Zaks. My assumption was that everyone in the theater community knew the general facts of my health history. People like to talk, and a prominent twenty-four-year-old diagnosed with a dreaded illness is fairly big news. But that didn’t mean they knew my still-hirsute appearance had been so handcrafted. Jerry only knew me from my auditions and whatever reputation I might have had, so I tried to explain the situation.