Time on Fire: My Comedy of Terrors (6 page)

The next day the doctor would apologize for the mix-up and promise to write clearer orders, and a nurse would stop by my room to tell me, “I hear your girlfriend has a bad attitude.  You know, that can affect your care.  Why can’t you be more like Andy down the hall?  He comes around with us and helps us make the beds.”

My poor mother and father didn’t escape the nurses’ wrath either.  When they made such heroic gestures as driving an hour into Manhattan during a blizzard, or walking six deserted blocks in the howling winds and flying glass of a full-fledged hurricane – all at my request – to be by my side during procedures that frightened me, they were scolded mercilessly.

“Do you know how many parents get sick while their kids are in the hospital?” the nurses would chide.  “Do you know how many parents we have to admit because of heart attacks?  Do you know how many die in car accidents?”  The message being imparted made complete sense, but the manner of delivery put everyone even more on edge.

In spite of these harsh warnings, or perhaps due to the added stress of them,  my mother was given a prescription for Halcion by a doctor not connected to Sloan-Kettering.  Halcion was the drug preferred by all the hospitals that I visited for helping the patients to sleep.  One didn’t need to request it; it was standard issue, handed off at dusk with a collection of other colorful tablets in a tiny paper cup.  Halcion is a drug that has been in the news of late.  It’s been banned in some countries, and there has been at least one movement to remove it from the U.S. market.  Many believe there is evidence, available even then, that Halcion may occasionally cause severe depression, mania, and suicidal or homicidal tendencies in anxious individuals.  Great stuff to give to people torn out of their lives and thrown into an institution days or hours after learning they have cancer.

My mother was told to take a portion of a pill whenever she felt tense.  A few weeks into my first hospitalization she took some before getting on the New Jersey Turnpike for a two-hour drive.  Half an hour later she drove off the road and wrecked her car.  My father had, himself, taken to drinking tall iced tea glasses filled to the brim with bourbon and water, and, within a week, he also ruined a car in a potentially catastrophic single auto accident.  They both vehemently denied that their automobile accidents had anything to do with my illness, and became furious when I suggested that they were crumbling when I needed them most.  I began to feel even more alone and cast off from anyone whose sanity I could recognize.  I started to think that perhaps I was losing my mind and everyone else was behaving rationally.  Jackie was my only connection to anyone who seemed to make sense, and we insulated ourselves with greater and greater determination.  This upset my parents even more, as I limited the frequency of their visits, and Jackie and I grew closer together and farther and farther away from everyone else.

Before long, there was little or nothing that my parents could do right in my eyes.  Every genuine effort on their part was marred by my lack of tolerance for the smallest slip.  If I asked for a Coke, and my father brought back orange soda, in my totally dependent condition, this was enough to set me off.  On the occasions when they did something truly wonderful, like ordering me a telescope for my birthday, an item I had always wanted, I exploded at them for being overly generous only in the midst of a crisis.  I cried and screamed and accused them of trying to comfort me with gifts because they really had no faith that I was going to survive.  I greedily took for granted, as my birthright, the sacrifices they were making, in terms of time, money, and emotional investment, and showed them very little gratitude for the hours they spent shopping for my comfort, or for the swarms of people they steered toward the blood bank to make donations for me.  I’m not claiming that I was anything other than a holy terror myself.

Rightfully or wrongfully, I was unable to forgive the particular manifestations of my parents’ state of shock and the hypervigilance that it necessitated on my part.  I craved, I dreamed of a scenario, where I could have broken down myself.  Abandoned all sense of responsibility, while feeling safe and well protected from any more danger than I was already in.  But that wasn’t the situation as I perceived it, and so I learned to fight.  I learned that I must always remain in control, double-check everyone’s work, and trust no one completely.  I must have been sheer hell to be around.  But I know that my cantankerousness saved my life on several occasions.

In spite of this tidal wave of hostile bombardment, over the next few weeks I became the most optimistic human being I had ever met.  I learned what I would call a kind of  “opportunistic optimism.”  The basis for the transformation was the simple realization that I could, out of sheer will and necessity, alter my beliefs about things.  I began to embrace any notions that would enhance my tendencies for hope, while practicing powerful mental techniques to banish any thought patterns that might interfere with my ability to wholeheartedly concur with the new belief system.  These techniques included scrupulously adhered to sessions of meditation and visualization, with the goal being to increase my body’s tolerance for the toxic agents, to maximize their destruction of the unwanted cells in the body, and to train my mind and body to expect success in each stage of the event.

These were no small adjustments to make.  I was then, as I am now, an unyieldingly logical person.  It would have been nearly preferable for me to die, rather than to be duped out of desperation.  I knew that the orange liquid in the metal carrying case posed a danger to every cell in my body.  The trick was to convince myself that I could instruct my healthy, useful cells to decline to absorb any of that orange juice, while letting those mutant cells bathe and drink to their heart’s delight.  I  drew pictures of the chemotherapy drugs hugging my organs while poisoning leukemia cells; I held conferences with the captain of the heroic orange cavalry, riding his orange horse.  We planned elaborate strategies and designed fantastic orange laser weaponry.  Our plans were coordinated with the anti-terrorist SWAT specialists of my immune system.  I called them into action, educated them in the tactics of the enemy, and sent them on bloody missions to destroy the vulnerable foe.   I then visualized my immune system cells disposing of the destroyed opponent.  I went to sleep each night to the tape-recorded voice of a legendary figure from the healing arts.  A woman I’d never met, who told me every night that she loved me, and that everything that was happening to me was for the greatest good.  I even had conversations with a mental image of myself twenty years into the future, who guided me, and assured me that he was the proof of my inevitable survival.

This middle-aged manifestation of myself wasn’t difficult to conjure up.  Just as my spirit was being rejuvenated by leaps and bounds, my physical being was hurtling along in the opposite direction.  While I’d open my eyes from every meditation session having regressed a little further into the youthful era of curiosity and discovery, I’d be met by an image in the mirror of a rapidly aging man.  Each day I’d become more debilitated, a bit slower, my posture more stooped.  My hairline was receding hourly, and the pace of its retreat could be manipulated simply by reaching up and removing a clump of hairs with my fingers.  With that simple gesture I’d scroll forward on my lifeline to see myself reflected back from five, ten, twenty years down the road.  The mirror became the window through which these different chronological incarnations would greet each other and try each day to build a new bridge to reconnect the ever-widening chasm between.

The techniques I learned were a result of the reading I was doing.  Immediately after the diagnosis I had begun collecting what would soon grow into a library of inspirational books and articles.  This collection started with a few well intentioned gifts from friends and relatives, but soon exploded with the addition of obscure pamphlets promoting alternative cures; letters from long-lost friends; letters from the friends of those friends; all giving hazy anecdotal testimonials of miraculous recoveries, typed out on worn typewriters and scrawled over page after page of personal stationery.  Several of the submissions contained audiocassettes of speeches given by the New Age gurus of the day, or bootleg tapes of their smaller support group meetings.  These tapes were often referred to as if they were treasured gems of the underground holistic healing circuit.  Their owners would pass them on to me with the solemn reverence of a devoted Dead Head, certain that it was
this
tape, of
this
particular performance, that would make me see the light, and change my life forever.

Some of this stuff was brought in at my request – I was aware of and eager to read what Norman Cousins had to say about illness.  I devoured his book
Anatomy of an Illness
, and found even more valuable information in his later one,
The Healing Heart
.  In these books, Cousins explicitly states many of the discoveries I myself was making.  Namely, that disease was not the only obstacle to be overcome.  The institutions supposedly devoted to making the sick well could easily exhaust the stamina of the heartiest souls.  Even before I’d read his books, when I had first arrived on the twelfth floor of the hospital, the first thing I was told was that I couldn’t keep the VCR I’d brought with me.  Plugging it in was “against the rules,” as the only available electrical outlets were reserved for emergency medical equipment in case its use became necessary.  I learned then, and reading about Norman Cousins’s experiences confirmed for me, that my ability to survive was going to be closely related to my willingness to disobey.  I also started to try to emulate others of Cousins’s survival techniques, such as getting the nursing staff to consolidate their repeated requests for my bodily fluids.

As invaluable as I found the Cousins books, there was another small blue paperback whose pages I adopted as my personal manifesto.  The book became my Bible. 
Getting Well Again
, by Stephanie and O. Carl Simonton was the book that planted most of these ideas in my head.

Carl Simonton was a radiologist in the Dallas area who became intrigued with the question of why two individuals with nearly identical diagnoses and treatment protocols might come to have completely different treatment histories over the course of their illnesses.  Some patients recovered and lived long lives, while others succumbed almost immediately, in spite of identical interventions.  Dr. Simonton focused his investigations on the emotional makeup of these individuals; the stresses in their lives prior to diagnosis; and their ability and willingness to reexamine their life choices and belief systems.  One of the key theories put forth by Carl and Stephanie Simonton in
Getting Well Again
, and later by Dr. Bernie Siegel in his book
Love, Medicine and Miracles
, is the idea of “taking responsibility for one’s illness.”  Each of their books, as well as many others’, speaks at great length about lives lived out of sync with an individual’s true desires, and how easily we can come to accept roles for ourselves that are not necessarily of our own choosing.  The books recommend adopting an attitude toward illness as one of being presented with an opportunity.  The reader is encouraged to view the illness as a message to be heeded, a state of dis-ease in the body, and to strive to break free of commitments and responsibilities that are causing feelings of despair and hopelessness.  A great deal of space in these books is devoted to what might make up the curriculum for a basic assertiveness-training seminar.

I have no idea what caused me to develop leukemia.  My own intuition tells me that growing up three miles from a nuclear power plant is probably not the best way to avoid health problems.  Nor would I recommend the game my brother and sister and I used to play every Tuesday evening in the summers.  That was the night when, in the humid, glowing, sunset swelter, The Fog Man made his rounds.

The Fog Man wasn’t a man at all.  Or, while there was a man involved, he wasn’t the object of our interest.  What captivated us was the small green tractor-like vehicle with the engine that revved like machine-gun fire.  Each Tuesday evening, after the sun had set but before darkness fell, the sputtering of the engine would build as The Fog Man approached.  His tractor moved slowly along the side of the winding road, while the elevated chute protruding from the right back side of the rumbling machine spewed insecticide in billowing plumes up into the shrubs and trees.

We would wait, listening for The Fog Man’s call.  When we heard him rounding the bend, his truck whining higher as it struggled to climb the hill, we would sneak out one of the seven back doors of the house we’d dubbed “Somanydoors.”  Hiding in the bushes, we would watch as The Fog Man pulled over onto the dirt shoulder of the road and, slowing down for his pass by the homes of the subscribers to his service, blasted the moist, white smoke from the asshole of his engine.  We would pull our T-shirts over our mouths and noses, and, giggling and shrieking, we would run and play in the mist.  We would follow him down the road, from house to house, trying to get as close to the thickest meat of the fog as we could without actually shoving our faces into the chute itself.  We would become lost in the clouds, hearing each other’s laughter but unable to locate one another with our eyes, until we escaped, choking on the sweet fumes, spent and out of breath.  We would collapse on top of each other, bragging about our bravery, and vowing ever more daring stunts for the next week, when The Fog Man would return.

Seventeen years later, in the midst of my treatments, I celebrated a birthday with a small group of friends who had all grown up within a few miles of each other in the lower Hudson Valley.  In the group of six men and women, all under the age of thirty, three of them had been treated for some form of cancer.  I myself was aware of two other young people living in the same area who had been or were currently ill.  Since none of these cancers were “related” in terms of their location in the body, this shocking outcropping would never be classified as a cancer “cluster,” and so, never investigated.