Time on Fire: My Comedy of Terrors (32 page)

When I get a call on the phone, as I often do, asking my advice or assistance for someone confronting an unthinkable diagnosis, I tend to have a knee-jerk reaction that would have sent me into a blind fury when I was ill.  I almost inevitably think, Oh, Jesus.  The poor bastard hasn’t got a chance.  I have to stop myself, and try to remember what I’ve learned.  I have to remind myself of what I’ve proven to the world.  The fact that I’ve been among the first to lose sight of my own example baffles me still.

My friend Lisa called me recently.  I’d known since we met less than two years before that she was “dealing with” cancer.  She told me as soon as I was introduced to her.  “So it’s in remission?” I’d asked her then.

“No, no,” she said.  “I’m
dealing
with it.”  Some months into our friendship, looking back on that day, she told me, “You should have seen your face.  Your eyes turned into little toy guards.”  I decided then that I was going to try to open my heart to Lisa, to push through whatever it was that made me want to hide from anyone facing similar obstacles to those I had faced.

On the phone Lisa sounded sad and frightened.  She rarely shared her medical trials with me, and when she did it was usually with an upbeat sardonicism.  Today, though, there were tears in her voice.  And fatigue.

“Oh, I saw my doctor this morning,” she said.  “It was eleven-thirty and he asked me to come back at three.  I looked at him and said, ‘Okay.  Why don’t you just tell me now?’  He told me he wanted his partner to be there with him.”  My friend Lisa, thirty-four years old and riddled with cancer, had already lost her vision in one eye, and suffered from nerve damage that severely limited the use of her left hand.

“I already know what they’re going to say, Evan,” she went on.  “But I don’t want them to  amputate my left hand.  I know the cancer is in my wrist, but I’m extremely attached to that hand.  And I want to stay attached to it.”

I just thought, How am I supposed to leave the house and relate to anyone after hearing something like that?  And I’ve got no excuse, I thought.  No excuse for wasting away the time I never should have had to begin with.

Later, Lisa had her suspicions confirmed.  “They told me the cancer was spreading at an alarming rate.  They feel the best treatment would be to amputate my left arm just below the elbow.  I told them no.”

After a pause she went on.  “So I’ve been told, unless one of the experimental treatments work or the cancer stops of its own volition, that the time frame for everything will be much shorter than what I was originally told.”

We spoke about her decision, and I tried my best to be helpful.   But I felt as lost and inept as I’d found my visitors years before.  I had no idea how to face my friend who was so stoicly facing her own death.  The fact is, I never confronted death as anything more than a terrifying specter that I always managed to push away.  If anything, my experiences have left me with an even stronger
denial
of death than ever before.  I know the fear of it well.  But as for acceptance, I never got close.

A lot of young people I’ve known have died since I was first ill.  At least a dozen in ten years, the oldest of them not much over forty.  Jeff Lowenthal; Kevin Gheen; Rema Hort; Greg Handler; A.J. Antoon; Jonathan Alper; Martin Herzer; Linda Spoor; Ralph Marrero; Andy Louie.  And, yes, I’m sorry to say, Willie Dingle.  Though I didn’t learn of it until several years later myself, Willie Dingle died on March 13, 1988 — less than two months after I saw him looking so well.  Willie was twenty-three years old.

Where did these people go, to where did they disappear?  I’ve heard about the concept of “survivor’s guilt,” and I’ve always kept alert for the pangs of it.  I’ve definitely felt embarrassed in the presence of an obviously doomed companion, and I have felt like hiding from the parents of deceased friends or aquaintances.  Because of the relationships that were forged during my horrible years, it’s always seemed an odd reversal of fortunes to confront someone else’s grief over an early death that I’d thought was meant for me.  But mostly I walk away from such encounters feeling lucky.  Shaken; frightened for my own future in this treacherous world; and glad it wasn’t me.  I classify myself as one of the very luckiest of the unluckiest people to have ever lived.

As the years pass, so with them does much of my immediate terror.  But it is always accessible, and rather than feeling that it has dissipated, it seems more to have gone slightly dormant.  In the days leading up to and stretching through the illness I became convinced that illuminated street lamps would switch themselves off whenever I passed underneath.  This was a phenomenon that had first started occurring, or that I had first noticed, shortly before I met Jackie.  On my very first date with her I mentioned it, only to have, in the middle of the next sentence, a streetlight go dark as we walked beneath.  I came to believe, after the diagnosis about a year later, that this was a manifestation of some kind of anti-life force.  Each time it would happen I was filled with dread, certain that it was a sign that there was still some terrible spiritual imbalance that was affecting the electrical currents around me.  It still happens every so often, and I’ve got to drive it out of my mind immediately or else I will obsess endlessly about its symbolism.  I’ll begin to worry about my health to the point where I can’t look at my hand without noticing the arch of the blue stripe of vein under the skin, and the pulse beating steadily within it.  Against my own will I’ll imagine the blood passing through those tunnels and I’ll sense each individual cell careening through, wondering if they are all right, or if, against all odds, something evil is brewing inside there again.

And then there are the funeral parlors, with their gracious awnings and the glow of soft lamplight from within.  For years after my illness I would cross the street to avoid walking past one.  I felt them calling to me.  I felt that their energy was drawing me in, like a slow-moving but irresistible whirlpool, against whose steady pressure there was no defense.  I began to imagine that my image might be posted inside, on a “most wanted” list, issued by the Association of the Angels of Death, and that if I crossed too close I might be recognized and picked up for bounty.

As I go on and on while others drop off the face of the Earth with regularity, as the casualties mount around me, the impact of each unfathomable confrontation with death grows increasingly strong and constant.  It is knowledge I would erase from my psyche in an instant if I could.  Yet every so often, it is that knowledge that lifts me above any exaltation I have ever known.

When I’m suffering through my periods of difficulty, when I find myself locked away from the appreciation I know I should feel in my journey through this life, I’m always aware of a little doorway that exists down near the floor of my conciousness.  It’s a doorway that I never open without great effort, and most times I only succeed at crouching low and peeking through.  But when I do open the door and bend down to its level, I feel like Alice after she passed through the looking glass.  A giant peering into a world I’m much too clumsy to inhabit.  It’s the world where all my concerns carry no weight, and where nothing that has caught hold of me in recent years has any sway over my soul.  It’s the land that I inhabited when all I craved was a day free from pain, and when I knew how to cherish such a luxury.  Even more occasionally I can, through means I don’t fully understand, pass easily through the doorway, and play like a child on the other side.  Those are the moments of my life.  The moments I thought my life would forever after be.  The quickest way – sometimes the only way – to conjure one of those moments, is to have a brush with death.

I’ve heard it said that whatever doesn’t kill you makes you stronger.  I’ve also heard it said that whatever doesn’t kill you fucks you up for a really long time, and it’s a miracle if you ever get it back together again.  I have a great doctor now.   Her name is Julia.  Julia is a very attractive, warm, energetic woman, who is not so very much older than I am.  I see her every few months, just for a checkup, and every time I do, she loves to tease me about a TV sitcom that I once made.

“Oh, boy!  Did that stink,” she says, every time I see her.

On a recent visit I told her, “Hey.  That TV show has allowed me to turn down quite a few other things already.”  And I started to tell her about a play that I had just turned down that day.  Not because it wasn’t any good, I just couldn’t get excited about it.  “It’s a lot of work,” I said.  “If it doesn’t mean something to me, personally, I don’t want to spend my time on it.”

I told her that I had been writing about the illness, and about a passage where I talk about “spending time.”  How I want to “spend” my days.  I said, “I’ve become a miser, Julia.  I don’t want to give them away.  I want to possess my time.  Hoard it, save it up, and collect interest on it.  The more time that I keep for myself, the more the interest will build up, and my time collection will grow and grow and grow.”

I expected her to laugh at me for being such a sensitive, artistic type who’s afraid of hard work.  Instead she looked into my eyes, and she said, “That’s great.  You’ve been through a lot.  Your perspective has changed.  That’s a good thing.  You don’t know how long you’re going to be around – no one knows how many years they’ve got – but you’ve learned that better than most people ever have to.  You should only do what you want to be doing with those moments.”

I said, “No, Julia.  No.  Nothing’s changed.  I mean, I sure don’t wake up every morning just thrilled to be alive, not needing anything else, like I swore I would when I was sick.  No.  Most of the time, I’m just…sad, about everything that happened, and how much it cost me.”

I told her how, after I got well from the transplant, for a long time, I couldn’t get myself to get up off the couch.  I had my health back, but I didn’t feel like
doing anything
.  I just felt, well — If my life doesn’t depend on it, why bother?

“But that doesn’t last,” I said.  “Because when that play opens, I’m going to be jealous of whoever’s in it.  Even though I wasn’t willing to give up my time to do it.  See, I still want to be in that race, on some level.  To compete, just for the sake of the competition.  So maybe what I mean is, well…yes.  Everything’s changed.  But then, it all becomes the same again.”

Julia said, “Of course.  There’s an innocence in that.  In that race.  In being able to believe in that.  And that’s a very painful loss you’ve suffered, the loss of that innocence.”

And we walked out of the examination room, down a narrow hallway stacked with medical records.  Julia had her hand resting on my back, between the shoulder blades.  She gave me two pats on the back, and as she pushed me toward the door she said, “You take care –
Old Man
.”

 I left the doctor’s office laughing, and took the elevator down to the first floor.  I left the building, and I walked out, into a delicious, refreshing, cold winter rain.

While this book accurately reflects the state of advanced medical treatments during the mid- to late nineteen-eighties, many developments since then have already altered the landscape.  Primarily, in the arena of bone marrow transplantation, the advent of “growth stimulating factors” –  drugs that can selectively stimulate the regeneration of specific marrow cell lines – has substantially lowered the mortality risk from infection.  Since the stimulating factors can reduce the patient’s neutrapoenic period, many bacterial and/or viral infections can be either avoided or limited in their duration and severity.  At the time of this writing, mortality rates from infection during bone marrow transplantation at top facilities were close to one percent – similar to the risks associated with coronary by-pass surgery.  In fact, at many facilities, bone marrow transplants are done on a primarily (though not completely) outpatient basis. Additionally, improved anti-emetic (anti-nausea) medications have significantly reduced another aspect of the procedure’s former horror. As the understanding of genetic and cellular science continues to improve it is reasonable to hope that the treatments involved in bone marrow transplantation will continue to improve as well.  Eventually, perhaps, such drastic treatments will be rendered unnecessary.

In addition to the many heroes described or alluded to in the story, there are a number of people who deserve credit for helping this book to become a reality. First and foremost, my gratitude goes to Liz Tuccillo. She encouraged me to start writing, and her support and love and generosity never wavered. She is the hero behind the telling of the story, and for her wisdom and her friendship I will be forever in her debt.

Also instrumental in creating this book were Jackie Reingold and my family: Murry, Enid, Lillian, and Lowell. It was never their choice to expose themselves as I have done, nor would they all agree with everything I’ve written. Nevertheless, they gave me unlimiated access to their recollections and wide license to recount events as I perceived them. Their bravery, both during my illness and today, is astonishing.

Of course I’d like to thank my editor, Catherine Crawford, for her immediate and continued faith in the project, as well as all the caring professionals at Little, Brown, and Company. I have felt very well taken care of.

The director of my play, who was my very first editor, was Marcia Jean Kurtz. She handled the production, and me, with love, with grace, and with an abundance of talent.

Finally, there are a number of individuals and organizations who lent their support in all manner of ways. In no particular order, and with apologies to whomever I may have left out, they are:

Naked Angels; Paul Newman and Newman’s Own, Inc.; The Corporation of Yaddo; Lisa Kogan; Erica Silverman; Bernard Gersten; Gus Rogerson; Lenore Zerman; Don DeLillo; Larry Kramer; Jeremy Kagan, Michelle Satter, and Sundance Institute; Carole Rothman, Suzanne Davidson, and the Second Stage Theatre; Robert Brustein and the American Repertory Theatre; Kate Ruddon; Shelly Gidamer; Dr. Martin Abeloff; Craig Carlysle; David Eigenberg; Kenneth Lonergan; Beth Emelson; Jenny Peek; Fisher Stevens; Pippen Parker; Rob Morrow; Paul McCrane; Barry Singer; Kay Liberman; Loudon Wainwright III; David Black; Susan Raihofer.