Time on Fire: My Comedy of Terrors (9 page)

In spite of this, visitors flooded in to see me.  The blood bank of the hospital was deluged with people clamoring to have their fluids drawn, stored, and transfused.  My mother and her sister had formed a fund to take donations to be used to pay medical and living expenses for me and the family.  Several people in the theater community banded together and organized benefit performances of two shows running off-Broadway that raised a great deal of money and drew a wide assortment of people, many of whom didn’t even know me.  They all wanted to know how they could help, and I’m sure they were surprised when their offers were accepted, and they were told that Jackie and I had just bought ten gallons of “hint of peach,” and the apartment walls were waiting.  While I lay in the hospital, a group of my friends, both close and merely distant, painted my home for my release and arrival.  Each day Jackie would tell me who had shown up, and I would be so moved that I could barely breathe.

I don’t know how to describe it except to say that the ending of the movie
It’s a Wonderful Life
had suddenly jumped out of the TV set and become my reality.  Clarence the angel’s inscription to George Bailey that “No man is a failure who has friends” was etched into my soul and comforted me in my anguish over having been torn from my competitive race against so many perceived opponents.  Opponents who were now rushing to be by my side, to shop for my girlfriend, to wash our clothes, or just hold our hands.  I still see my life, the fact that I’m alive, as a kind of crazy community project.  I like to be around so that the people who helped out can see their work.  Their blood runs in my veins.  Literally.  I have my life because other people pumped some of theirs into me.

And this relatively easy, love-filled ride that I got my first time through really seemed to piss off the people who had led me to expect worse.  It was like the doctors were angry at me for proving them wrong by doing better than they’d predicted.  As my family and I celebrated the first success in the quest to win back my life, Dr. Zweig was pouting.  He looked like a crusty old war vet who can’t stand to see some-snot nosed, cherry private escape the front lines without watching at least one of his buddies get his head blown off.

There seems to be a great fear of something known as “false hope.”  I’ve heard the phrase used by doctors and nurses again and again, in very self-congratulatory ways, as if, by exterminating it, they were providing a great philanthropic service to the community.

Now, I scratch my way through this world as nothing if not a pessimist, and I will state, unequivocally, that there is no such thing as false hope.  It’s an oxymoron.  It can’t exist.

Hope has no connotations of certainty.  Hope carries no assurance of success.  Hope is the one thing in this world that can never, ever, be false.  Hope is just exactly what it says.  A longing.  A desire.  Is there such a thing as a false, aching desire?

I think, too often, that some doctors are protecting
themselves
from the aching desires, the hope, of their patients.  It must be very painful to fail to save the life of someone who never concealed their passion to survive.  Their hope.  Much more painful than the death of the patients willing to hide the intensity of their wish.  If only they could learn what a potent source of energy they’re wasting.

After Zweig had left the room, after my family and I had finished with our hugs and our tears, I walked back out to the hospital corridor.  I saw families clustered outside the rooms weeping.  I took a number of hard looks at the fear in the faces of the husbands and wives, sons and daughters, nieces, grandchildren, nephews.  Never was the terror more pungent, the anxiety more palpable, than when they were searching for hope in the face of a doctor.

I walked down the hallway past the nurses’ station.  I remembered that the purpose of a hospital is simply to provide around the clock nursing care for a great number of people at once.  Doctors are secondary to the equation.  They wield most of the power but do very little of the hands-on care.  Some of the nurses that I saw through the glass, and many of the nurses’ aides, had proven to be genuine exceptions to the hard rule of most of the higher-ups.  Olivia Squire and Gisella Sanchez-Ortiz, Debbie Brown and Sharon – several others whose names I never learned – had all lived up to the classical images of generous, compassionate, and devoted nurses.  There was also Dr. Pisters, a Canadian woman who, at twenty-three, was younger than I was.  We sat up together many nights, sharing stories of being the youngest person in our separate professional peer groups.  We had laughed together, as she haltingly applied her medical knowledge and struggled through procedures with me.  I had endured most of them dozens of times while I was her first attempt at their application.  I had no problem with her admitted lack of expertise and appreciated her allowing me to instruct her on how to best approach them from a patient’s point of view.  She, much to her credit, had freely encouraged me in my daily battles, often offering me favorable comparisons between my condition and others she had seen come and go.  When Dr. Pisters heard of my remission, she jumped up and waved to me through the glass window of the nurses’ station.  She shrieked and burst into tears of joy.  Two older doctors, attending physicians, on either side of her, immediately shot her ferociously scolding stares, and she looked away from me, wiped her eyes, and went back to work at the computer.

As I walked the hall, swearing that October 16 would forever be my new birthday, it seemed clear to me that those who were closest to the patients for the greatest amount of time were the most helpful and caring.  I know that I got the most encouragement from the men and women who filled my water pitcher and emptied the urine container that hung on my bed.  My personal hydrationists.  All day and through the deep night they would visit me.  Always with sympathy, compassion, and tales of those who had triumphed.  Many times, from many mouths, in several different lilting accents, I heard the same mission spoken:  “It’s my job, mon, to go see de patient after de doctor get tru wit him.  Dat way I tell de patient he don have to die like de doctor tell him he do.”

As a nonpracticing Jewish man, I was, at first, bewildered by a vision I had of myself, crucified on a hospital bed, sacrificing my life for the sins of my family.  If I was going to have a religious epiphany, couldn’t I at least stay within the faith?  I had, though, in recent days, been feeling more and more troubled by underexamined memories from my childhood.  Periods from my growing up that had never been discussed, and events that had been treated as if they had never occurred.

I first met Dr. Yehuda Nir, a psychiatrist, only a week or two after being diagnosed with leukemia.  His name came to me from Jackie, who had gotten it from her brother, who had gotten it from his friend, who happened to be a psychotherapist.  This was how things got done.

Our first meeting took place in his office on Park Avenue.  I had never visited a psychiatrist before, but even in my ignorance I was surprised by the small, drab, gray-green waiting room whose window looked out only onto an air shaft that was grayer still.

Dr. Nir was a small man, either of a nondescript physical nature or simply not vivid enough for me to form a clear impression upon a first meeting.  He was balding and dressed crisply in trousers, shirt, and tie, and he spoke with what, at the time, sounded to me like a parody of a psychiatrist’s mysterious European accent.  Nir had once been on staff at Sloan-Kettering himself, but he now worked out of his own office, where he treated what seemed to be a steady stream of Hasidic Jews and wrote self-help books with his wife.  Our first meeting consisted mostly of gentle questioning by Dr. Nir, as he prodded me for information about my idols while growing up and asked for brief descriptions of my childhood and the happenings of the past few weeks.  The intensity of the sessions picked up quickly though, as he began to probe my beliefs about myself and the world around me.

Nir began to stress that my perception of things was not necessarily in complete agreement with an absolute reality.  He would correct me when I despondently referred to the “miracle” I would need to ever see my fortieth birthday.  “Lots of people get well,” he said.  “And they stay well.”  I had no idea if this was true or not.  But it made me feel a lot better to hear him say it.

Then Dr. Nir would remind me of the ways that I had been taught, throughout my life, to scrupulously avoid danger.  To always consider and prepare for misfortune, for catastrophe.  I was, in fact, so entrenched in my accepted way of thinking that I would argue with him over the significance of bizarre Handler family rituals.

For example, it was an unquestioned practice that whenever both of my parents went away together on a plane, they would leave a sealed envelope for their children, “in case the plane goes down.”  This envelope was said to contain the information that we would need in the event of their deaths, such as the location of safe-deposit boxes and wills, the names and numbers of lawyers, and, we were told, the envelope was to be opened only in the event that both of them were killed.

All of my life, this had seemed perfectly logical to me.  Not until I started to question, with the help of my therapist, the messages behind this drama did I even consider any alternative methods of action.  Such as, instead of turning every parental plane trip into a potential tragedy — with the envelope serving as a constant reminder, from departure to return, that we might never see each other again — simply leaving a permanent file in a drawer somewhere with all the information necessary in case of emergency.  It was only during my therapy with Dr. Nir that I finally decided that this preoccupation with disaster was somehow desired by my parents because, in spite of my asking them to refrain from leaving the “farewell note” in the future, upon their next vacation, there was the envelope once again, sitting prominently on the kitchen table.

“I’m going to open it and see what it says,” I told my sister and brother.

“I don’t think they want you to do that,” Lowell said.

It was astonishing to witness grown, adult children unflinchingly obeying destructive commands.  I, myself, was frightened to assert my independence and blatantly disregard my parents’ wishes, even though they had disregarded mine by, once again, leaving the ghostly reminder of their mortality to stand in for them in their absence.  When I opened the envelope my anger dissolved.  It melted, instead, into a lukewarm puddle of sadness.  Inside was a sweet-natured, upbeat good-bye message, written in my mother’s hand, wishing us wonderful lives amidst her directions of how to arrange all of her and my father’s affairs.

How many times, since my childhood, has she done this, I wondered.  And at what cost to herself?  Why would a parent want to sit down and deliberately imagine a scenario in which they must say good-bye to their children, over and over during their lifetime?  And to impose the ghoulish fantasy on the offspring as well?  But this was the first time that any of these questions had occurred to me, and for the first time I was thinking that I would have to learn how to protect myself from that kind of chronic preoccupation with the worst that might be in store.  I would have to closely examine and adjust my own ingrained reactions to living, and to the risks involved in it.  I would also have to guard myself against the constant pressure within the family to continue to uphold the structure that had been in place since before my birth.

I had no idea how difficult this process would prove to be.  I was working so furiously myself, desperate to distance myself from whatever traits might have made me “susceptible” to the illness, that anyone would have had a hard time keeping up.  I was, by the time I checked back into the hospital for round three, actively working with both Dr. Nir and Laura Day, usually twice a week each.  I was also seeing another psychiatrist, Dr. John Patten, whom I dubbed the “death therapist” due to his specialty of helping patients and families deal with issues surrounding life-threatening illness.  My parents were eager enough to preserve some family unity that they agreed to meet regularly as a group to try to discuss the anger tearing us apart.  While I was enraged at them for the awkwardness of some of their early attempts to assist me, they were angry at me for turning on them when they were trying their best to help.  I was seeing Dr. Patten once a week with my family, as well as having an occasional private visit to help me master the technique of self-hypnosis.

In addition to my hypnotherapy, my “death therapy,” my family therapy, my personal therapy, and my psychic, I was usually consulting simultaneously with any number of nutritionists, astrologists, massage and aroma therapists, as well as working on my own to come up with any insights that might, if not lead to an actual advantage, give me the perception of having one in my fight.

From my earliest awareness, I had felt a compulsion to bring pleasure to the adults around me.  My brother’s Tourette syndrome had, quite typically, first manifested itself as severe behavioral problems.  Hyperactivity, obsessive-compulsive behavior, all kinds of perplexing, frustrating symptoms with no apparent explanation other than some form of psychological disturbance.  He had, from an extremely young age, been carted to psychiatrists, and even, occasionally, been prescribed medications to “calm him down.”  This is a terribly common story for people with Tourette.  In even the most well-informed and caring families, which ours was, it often takes years to find a doctor knowledgeable enough about the disorder to correctly identify it.  This is a dual tragedy in that, not only is the child misunderstood, but the parents, working furiously to give enlightened help, are often unwittingly compounding the problems by trying to convince a neurologically impaired child, under orders of a physician, that they are emotionally ill.

Being the youngest of three, for most of my childhood I witnessed an older, tormented child venting his rage by tormenting his siblings and his parents.  The more my parents tried to control him, or tranquilize him, much to his credit, the harder he would fight back.  We took one vacation to Canada that was an absolute nightmare.  My parents were quiveringly tense the entire trip, as they tried to get my brother to take the medication that had been prescribed by the latest professional on the case.  Lowell had replaced the prescription label on the plastic pharmacy container with a hand-lettered one of his own that read “SICK PILLS,” and he insisted that it was not him, but the two barely contained furies in the front seat of the car, who needed tranquilizing.

Since my sister’s way of dealing with her confusion growing up was to withdraw from the family, to reject the values and lifestyle that my parents worked endlessly to support, I was aware of a vivid level of pain and difficulty within my parents surrounding my two older siblings.  I took it upon myself, with a lot of encouragement from Mom and Dad, to be the bundle of joy.  The child whose success came easily and would multiply to the point where the entire family could rest secure.  I labored tirelessly to be the one who needed nothing in return; a child who was self-sufficient emotionally and who would provide, at no cost to himself, a ceaseless supply of pleasure and fulfillment to the adults who had been denied it elsewhere.  I was to be the “savior” of the family, it was silently agreed.  And not only did I keep my needs and fears and vulnerability to myself, but eventually, I stopped being aware that they existed at all.

Years later, as I pondered and probed, as I meditated and spun myself through hypnotic reveries, besides falling deeply in love with life and yearning to recapture my chance at it, I was becoming angry about the ways that I had agreed to live it so far.  I thought back and remembered the level of tension in the house when I was in my teens.  I remembered a brief span of time at the height of my sister’s teenage rebelliousness.  My father, never a heavy drinker, had begun to consume more alcohol than before, and he would become frightening in his antagonism toward Lillian.  I recalled one episode when, alone in the house with them, I watched him taunt her, threatening her with physical punishment, until she locked herself, crying, into the bathroom.  I stood and watched, feeling furious yet helpless, unsure of what I was supposed to do to my father in order to protect my sister from him.

That memory, in turn, reminded me of when my brother had reduced my mother to hysterical tears by refusing, or being unable, to respond to her for hours except to say, over and over, in a high-pitched, teasing voice, “Cheese and crackers…cheese and crackers.”  Lowell had to be seventeen or eighteen years old at the time.  Whatever she said to him, whatever he was asked to do, “Cheese and crackers…cheese and crackers.  Cheese and crackers…cheese and crackers.”  It’s not hard to imagine why in Medieval times people with Tourette syndrome were thought to be possessed by evil spirits.

I stood outside the kitchen window that day and watched my mother first shriek back at him, in a voice much more Satanic and terrifying than the one he was using, “CHEESE AND CRACKERS!  CHEESE AND CRACKERS!”  She then collapsed at the table, sobbing, completely lost as to how to deal with her son.  I was never able to forgive myself for not being able to rescue her then, but I couldn’t get myself to tell him to stop.  It somehow felt as if that would have been too open an admission of the situation, an adult unable to cope with a child, and so being saved by a younger one.  Or maybe it was just too ridiculously insane to admit I’d even seen it.

These somewhat traumatic memories, to which I hadn’t given much thought for many years, began to occupy more and more of my consciousness.  As I attempted to clarify them with some of the newfound insights being gained during my therapy sessions, I felt that I would need the help of some of the other players in order to fully disarm those memories of their potency.  And there were other, even darker, secrets I was wrestling with.  Amidst my own tentative, fearful attempts at forming sexual relationships, my brother, nearly five years older and much more experienced, had seduced and slept with a succession of my female friends, including my girlfriends.  Eventually, I confronted him and threatened him with losing his brother forever if he didn’t learn to treat me with respect.  But much worse were the injuries from a time when I had no way to defend myself.  Years earlier, somewhere around the age of eight, when Lowell would have been about twelve or thirteen, I was regularly offered, and given, money for performing sexual acts on my older brother.  None of those events had ever been mentioned since.

This is, I suppose, a shocking (if nowadays more routinely revealed) history.  But I don’t recall any feelings of horror or shame from that time.  Those responses all came years later, when it seemed terribly out of context to dredge up the perverse experimentations of a younger age.  Not only do I believe that what went on is a more common occurrence than is readily admitted, but I’m also not convinced it’s an entirely unnatural one – in terms of realizing its potential to occur and in warning children about it and taking steps to protect them from it.  We are still, in childhood and as teenagers, before the socialization expected in adulthood is complete, instinctual animals.  The attempt to exploit weaker animals by older, stronger ones is something that should be anticipated.  The damage is often worsened, in my opinion, by a lack of acknowledgment of the injury.  Wounds that might have been superficial are compounded when there is no open discourse about these events and the pain they can cause later, when newfound maturity and comprehension reveal the implications that a child would be unable to perceive.  My perception at that young age was that it would have been greedy for me to complain about anything.  After all, I was the child with no problems.  Attention was needed so much more urgently elsewhere.

I honestly have no idea if any of the emotional traumas of my youth contributed to my developing leukemia.  Those events, though troubling, were aberrations on a long, steady graph of tender upbringing.  They have all since been thoroughly discussed and, if not resolved, at least accepted.  Put back into the context of my entire upbringing, and considering the families that many others suffer, I was blessed with a charmed childhood, filled with love and genuine expressions of that love.  Just as clear, even at the time of my illness, were memories of boundless generosity, as exemplified by gifts of elaborate drum sets and the steady, encouraging presence of my parents at what must have been excruciatingly tedious Little League baseball games.  What became tremendously important, though, in my fight to recover from the disease, was that the painful memories of those more haunting, unresolved events
now
felt like burdens to me.  When I “woke up” that day, having imagined myself nailed to a hospital bed, wearing a crown of hypodermic needles, I was convinced that the effort of maintaining the silence about difficult times in our family history was draining energies that I could not afford to spare.  Keeping up the status quo, which had always seemed to be the path of least resistance, now revealed itself to require an enormous amount of exertion.  Although I was convinced, at the time, that the role I’d played in the family
had
contributed to a level of exhaustion that left me vulnerable, I was also mindful that more important than discovering the unknowable cause of my illness was the gesture of resigning my post as the keeper of our family secrets.  If nothing else, this would once again be demonstrating, to myself, that I was willing to confront any demons, to pursue any path, to give myself the greatest potential for survival.