Time on Fire: My Comedy of Terrors (31 page)

Another  inevitable aspect of our visits, as well as any time I visit with my parents, is reminiscence.  There has rarely been a conversation with Jackie in years that hasn’t gone back to those days.  Often she will be able to recall in great detail events that I have completely forgotten, and I’ll roam through her memory, exploring its hidden corners, as my mind gropes to uncover and dust off its own.

A few years ago Jackie took me out to dinner to celebrate my thirtieth birthday.  We sat together, across a candlelit table, and we found ourselves roaring, hysterical, as we pored over the most gruesome details of the years of suffering.  No one’s agony was spared.  We laughed, and cried, over the horrors that we’d experienced as well as those that we’d witnessed others going through.  Eventually we paused and looked up through our tears and asked each other, as we always do, why it is that we spend so much time on such a twisted ritual.

I had the distinct feeling, that particular night, that I was at a seance.  Here were two old lovers, catapulted out of their youths and away from any protective denial of their own mortality, who would convene every so often to conjure the spirits of the kids that they once knew each other to be.  Children, really, whom they had loved and who had loved each other.  Children that they had watched die, from across the room, with only the other as witness.  There seems to be in each of us a barrier, impenetrable without the other one’s presence, between that child and the adult that was fashioned out of its corpse.  There was no gradual transition, no lengthy metamorphosis.  Only an execution and reincarnation, and so, no traceable path back.

Mixed in with all the sorrow and breast beating, there is also, between us, an astonishing sense of accomplishment.  In Jackie’s play, the one written in the apartment we shared during the depths of the ordeal, the dead boyfriend, in the scene where he appears to the heroine, asks her, “What’s the most important thing you ever did?  What are you most proud of in your life?”

“Helping you,” she says.

When Jackie and I get together, the absurdities that once provoked such anger now mix with them a sense of triumph, and those triumphs are looked back on with some degree of…longing?

Because that was our youth.  The last gasp of it.  And no matter how painful the passage into adulthood might have been, it still holds the closest ties to a childhood that’s missed.

* * *

As I began looking through the notebooks I’d kept during the first six months of the medical crisis, I read entry after entry about a man deeply in love with the life he was in fear of losing.  A man who swore on his soul that he would never – could never – again be so foolish as to feel anything other than privileged about his existence, regardless of where it took him.  “Just give me life,” this man had written, on page after page.  “Just give me my life back, and I will never need anything more than that again.”

Reading those notebooks was a jarring and surreal experience.  It was difficult to believe, as I sat hunched over them, in the same rooms of the same apartment where they had been written, that those thoughts had come from me.  And yet, I had a clear memory of having written them.  And the rereading of those passages reinfused each cell of my body with the physical sensations of terror and desire that had originally inspired me to write them down.  So, what had happened between then and now?  The idea of my own inability to maintain the lessons learned in the struggle, especially since I had assigned the learning of those lessons as the
reason
for the struggle, was a horrifying concept to confront.  I had no explanation for how a man who had once felt the preciousness of life so clearly could lose hold of it so quickly, and I was forced to ask myself the question, If being miraculously rescued from the clutches of an almost always fatal disease wasn’t enough to leave a lasting sense of wonder and appreciation, then what hope could there possibly be of my ever gaining lasting contentment?

I began, slowly, to write down some of the war stories.  I tried to infuse them with the issues they were raising for me as I reexamined them and, eventually, I hoped to collect them into a theatrical piece I might perform.  The isolation I felt from others, prompted by the glaringly different experiences we’d had over the past several years, was dissipating terribly slowly.  I hoped that sharing with other people where I’d been might help to bridge the chasm that had opened between.

And the writing and performing of the piece, the reimmersion in the memories and the revisiting of the emotions, did have an effect.  When I first started telling the story to people, their reactions filled me with feelings of triumph that I had rarely been able to reach on my own.  I remembered that one of the goals I had set for myself years before at the Simonton Center in California – one of the purposes I’d assigned to my life that made the effort to save it worthwhile – was to hold myself up as an example, so that others wouldn’t have such a hard time imagining their own success.  As I began the process of performing the piece regularly in theaters, I got a tremendous sense of exaltation in recounting the determination and commitment that had resulted in my being able to be in the room to speak about it.  Dressed ceremonially in the blue linen blazer, blue T-shirt, and blue jeans I’d chosen to compliment the subtle blue-tinged lighting scheme, I felt like the subject rendered in a mesmerizing pastel drawing I’d been given as a gift. 
The Blue Warrior
was a depiction of a round hairless head, done in hues of yellow and blue, whose face was streaked with what looked like war paint.  The expression was one of sadness, with a thinly concealed ferocity lingering just beneath.  The title was clearly intended to convey both a literal and figurative description of the character portrayed, a duality that I was experiencing in my performances.  Each time I stepped in front of the audience to tell my story, I felt like a blue warrior, with a painted face, heading into battle.  And it was those battles, that reengagement, that helped me to then walk down the street with the awestruck amazement I’d imagined would inspire every waking minute of the rest of my life.  I felt I was floating through a private reunion with all the tiny wonders of the world.  I tried to accept as a natural human drive the desire to submerge the painful memories, and so, to submerge the knowledge gained through those experiences as well, and I vowed to always be on guard against it, and to fight my way back whenever I felt myself losing ground.

About an instant after making those vows, a familiar cycle began repeating itself through the few short months of the off-Broadway run of that show.  While at first there had been a pure joy in the telling of my story, it wasn’t long before those feelings were upstaged by more current demands.  Like the ad wasn’t big enough; the review wasn’t good enough; the audience isn’t laughing hard enough.

On one particular day, as I trudged my way up the dingy, graffiti-scrawled stairway of the Second Stage Theatre in New York, as I entered the green room backstage – the “Ian McKellan Green Room,” as the plaque read – a room that was as fresh and clean as any boiler room I’d ever entered in my life, I was dreading the performance that lay ahead of me.  I don’t remember if it was the special “Family Day Matinee,” or the “Singles Night” that time around, but neither one of them seemed a very good marketing strategy for a bare-stage monologue about one angry man’s leukemia.  Sitting slumped on the filthy, sagging couch that was kept outside the dressing rooms, I tried to talk myself down from the spinning rage I was working myself into.  I reminded myself of some of the promises I’d made years before in various hospitals, in various stages of decay and recovery.  There was the time in Johns Hopkins when all I wanted was a cooler.  An ice-filled cooler chest to take to the beach and keep filled with cold drinks and fresh fruits.  At that time, I hadn’t eaten any food in five weeks.  The chemotherapy had utterly destroyed the flesh lining my mouth and throat, and, while I was being fed intravenously, due to the indescribable pain, even my saliva had to be spit out rather than swallowed.  By the time the tissue healed, my sense of taste had been completely destroyed.  I would sit in a state of sad bewilderment as Jackie ate meals in the room.  I’d smell the roast chicken, the buttery mashed potatoes.

“How is it, sweetie?”  I’d ask.  “Taste good?”

“Mmmmmm!  Ummm Hmmmm.”

I would hold a piece of fruit — a piece of sliced orange, say, or maybe a fresh peach.  The smell of the fruit would fill my head, it would fill the whole room.  I was fascinated by how intense this aroma was, and I would become convinced that if I could smell it so strongly, I must be able to taste it.  I would pop a section of the orange into my mouth, bite down and wait for the flavor explosion.  Then I would weep from frustration as I was left with what felt like a mouthful of wet ash.  Not to worry, though.  I was assured that the problem “almost always” went away within a few weeks.

This particular horror was happening in the midst of various mind-blowing fevers, and I began to dream, out loud, about what I would do with my life once I had it back.  With Jackie in the room I talked on and on about this cooler and what kind of things I’d keep inside.  This was not a passing fancy.  I became convinced that this was how I was going to spend my days once I was well.  This was going to be the focus of my life.  Jackie would bring catalogues to the hospital, and I would spend hours fantasizing over the most impressive models; drooling, literally, over the shiny plastic ice chests and the sophisticated features that I could never have dreamed existed.

One day, as I was speaking with the doctors, I idly popped a slice of fresh peach into my mouth, and…I thought it was burning up my flesh.  An enormous eruption on the right side of my tongue.  I could taste the peach.  I could taste the peach!  I ran to the doorway of my room and shouted to the nurses who had suffered through my suffering with me.  “My taste came back!  It’s coming back!  My taste is back!”

I had fallen in love.  I fell in love and I swore that every bite of food I ever took from that moment on, every bite of life, would taste as sweet and surprising as that first taste of peach.  And that was the beginning of my problem.  I had gotten well, and I never went to the beach.  I didn’t own a cooler.  The fact is, even if it’s a sad fact, that as circumstances change, as options change, so do desires.  When I again came to trust that I would have the next five days, the next five months, the expectations grew.  Grew even greater than the expectation that every moment should feel just as miraculous as that first taste of peach.  The trick, I told myself, would be to learn to relish the mundane, to have an excited involvement with it, in spite of my disappointment that anything could ever become mundane again.

I pulled myself up off the couch, determined to give the Second Stage subscribers the best goddamned singles night they’d ever seen.  I passed into the long, skinny dressing room and I turned toward my chair — the one farthest on the right, with sixteen empty ones to my left — and I noticed a large gift-wrapped package sitting on the counter in front of the mirror.  Opening night had come and gone, so the sight was unexpected, and the package was a mystery.  I opened the card that was attached, and I saw that it was from Jackie.  “Congratulations,” she had written.  “Happy Springtime.”

I reached down and started to tear the paper off.  As I peeled through the layers of wrapping, I saw that it was some kind of a handle that caused the odd shape.  Narrower at the bottom than at the top, and tenting up in the middle.  And then I gasped.  As I saw enough of the gift revealed I made a sound that I’d never heard come out of myself before.  Because it was a cooler.  A miniature, red-and-white, hard-plastic Rubbermaid cooler, just big enough for a six-pack.

I stood still for a long time, with my hand clamped tight over my mouth.  When I had calmed down enough, I reached for the cooler so I could move it to another table.  I was already late in getting ready for the show, and I figured I’d give myself a chance to get as emotional as I needed to after it was done.  But, when the cooler was much heavier than I expected it to be, I realized that there had to be something inside.  I snapped the handle down from the top to release the lid, and the smell hit me hard, like a fist in my face.  I pulled the red cover aside, and I saw that the cooler was filled with peaches.

* * *

While the love, admiration, and appreciation I feel for my family now doesn’t diminish the memory of the anger and disappointment I felt then; neither does that anger or disappointment in any way diminish my awareness now of how much my family sacrificed for me.  My feelings are difficult to reconcile.  I owe my parents my life – twice over.  They responded to a crisis with every ounce of energy in their souls, and better than most people ever could have.  My survival is no less their victory than my own.  In spite of that, at the time, I still expected more.  It undoubtedly says much more about me than it does about them or their abilities.  My perceptions tend to run toward the recognition of what is wrong, and the impulse to make it right.  It is that level of demand and expectation that helped me to survive.

I think often now about my parents and what they must have gone through as a result of my illness.  What they must have been steeling themselves for.  I’ve spoken with them about it since, and my father has told me, “I had to protect myself.  I had to pull away.  If you had died…I couldn’t allow myself to go down with you.  I had to think about the rest of the family, about keeping us together.”

When I hear a comment like that it shows me that the pragmatism I brought to my fight was no accident.  It’s clear where it came from.  And I’m grateful that he passed it on.

The doctors and nurses and hospital staff; my parents and siblings and friends — it is not only these others by whom I’ve felt let down.  For my chronic discontent I blame no one but myself.  I cannot satisfy myself any more than others have satisfied me in the past.  I am a man impossible to please.  It’s what got me through.  And it’s what keeps me from finding contentment here on the other side.  While I try to continually remind myself to live each day as if it might be my last one, the knowledge that every day could be my last usually makes me too sad to enjoy them.