Time on Fire: My Comedy of Terrors (22 page)

And that’s the way it was.  I could only try to keep her play as far from becoming the truth as I possibly could.

Although I was skeptical, I continued to stalk the world of psychic healers in search of a miracle.  I got another recommendation from my friend Didi, and she gave me the address of a man who lived just two blocks away from my apartment.  My eardrum nearly popped when Didi squealed into the phone, “You’re gonna love him, Buballa.  He’s
amazingly
psychic.”

Jameson Coutourier told me to meet him in the back room of his crystal shop on East Fourth Street.  The neighborhood, in the years that I’d lived there, had become a hub for purveyors of accessories for the enlightened.  I imagined his store to be much like the others, with incense burning, and New Age music playing as an astrological lamp projected images of the constellations on the ceiling.  After ducking through the hole in a chain-link fence, and then cutting across a playground carpeted with broken glass, I got to the storefront, which was painted with various mystical symbols and quotations, and I banged on the door.  There was no answer.  I banged, I pounded, I was about to give up when the door was pulled open by a huge man with an alarmingly red beard and an equally red face.

“C’mon in,” he said.  And he turned away from me and walked into the back room.

Following him, I walked down a narrow aisle that was formed by hand made bins constructed out of plywood that had been nailed together and painted white.  The bins stood on the bare concrete floor, also painted white, on legs made out of two-by-fours, and they were all filled with stones, seemingly divided up by type and size.  The pipes and electrical wiring above were exposed, looping and tangled with each other, and all, of course, painted over in plain white.  The rough-hewn white boxes of rocks had prices scrawled with Magic Marker on the side of each compartment.  It was the first no-frills, generic-brand crystal store I’d ever seen.

Jameson sat in a swiveling desk chair, and I sat on the edge of a very low massage table that was covered in ruby red vinyl.  I wasn’t sure what I had come to Jameson for, but Didi said that he gave incredible healing massages, so when he told me to take off my clothes and lie down, I wasn’t completely nonplussed.  As I lay on my back, stripped down to my underwear and staring up at the corroded tin ceiling, Jameson prowled the room and talked about war.

“I been shot.  Been shot six times.  But I can’t be killed.  Because I’ve got an Indian warrior that lives inside of me.  That’s what you need, an Indian warrior.”

I started to think up believable excuses for why I might have to grab my clothes and go running half nude into the street.  Jameson was between me and the door.  I was waiting for him to cross the room and give me an opening.

“I lived in the jungle for eight years,” he went on.  “I been bitten by snakes fifty-seven times.  Copperhead.  Rattlesnake.  Coral Snake.  Moccasin.”

I was looking around his room.  There were pictures of snakes on the wall.  Thin, torn, peeling pictures, taken right out of magazines and taped up by their corners.  There was a wooden statue of an Indian Chief, a quartz crystal hanging on a string around his neck.  There was a very large hunting knife.

I was drawn back to Jameson’s voice.  What he said next soothed my anxiety and spoke directly to me.  It seemed as if a message was being given to me from somewhere else, with Jameson as the conduit by which it was communicated.  In the middle of his lunatic monologue, Jameson Lasassier spoke out loud a fighting technique  that I had been living for years already.  I couldn’t have described it until I heard it.  I wasn’t even aware of it until he gave it form.  But his advice, in his strange little rock shop on East Fourth Street, perfectly summed up what I’d been through for the past two years, and became my conscious battle plan for the months ahead.

“The trick is to let the venom in,” Jameson said.  He was standing still now.  Not looking at me, but staring off, sadly, as if remembering the events that had taught him the lessons he was passing on.  “Make it part of you.  And when the bullets come, there ain’t no way to dodge ‘em.  You gotta know that the bullets are gonna hit.  You just let ‘em pass on through.  Then they can’t hurt you.  You gotta run and meet the bullets, then let the bullets pass on through.”

This image was immediately branded into my psyche.  I had fairly vast experience, by this point, in rummaging through people’s muddled philosophies and picking out the nuggets that I felt might serve me.  I was already applying the principle to my anticipation of what lay ahead for me as Jameson rummaged through a closet filled with junk.  When he came back to tower over me, he was holding a four-foot-long sword, with a blade five inches wide.

Great, I thought.  I can see the headlines now.  “Dismembered Body Found in East Village Dumpster.”  Then, a week later, the big revelation:  “Murdered Man Had Just Survived Cancer!”

Jameson laid the sword on top of my body.  The handle rested on my forehead, and the tip of the blade dug deep into my groin.  Jameson sat at the foot of the table, and he started massaging my left leg.  He rubbed the same spot, the muscle of my calf, first with his thumbs, then his elbows, and then his heels.  The pain became excruciating, but I put up with it, because Jameson said he had found “a blockage,” and it was important to get the energy flowing again.  I lay there, grinding my teeth, thinking, Hey, let him fix it.  Maybe he found the blockage that caused the leukemia.  Maybe Jameson Coutourier will turn out to be my cure.  And, of course, there was still the sword.  I didn’t want to upset him.

Jameson prescribed a tea made from boiling herbs in water for  several hours.  The tea smelled like dead, rotting animals, and it tasted just a tiny bit worse.  My apartment reeked of decaying flesh for days after each batch was cooked.  But I continued to see Jameson and to drink the tea, because he continued to talk about venom and bullets and war.  He told me stories about the Indian warrior that lived inside of him.  A lot of what he said was pure madness.  But buried within were small gems, flakes of ore with which I was confident I could build my own shield, my suit of armor.  In the back room of that shop, where I never saw a customer in over two months, I was sorting, sifting through the worthless pebbles, mining for gold.

When I was at last well again, shortly before entering the hospital for my bone marrow transplant, I took a trip to California to see some old friends.  There were large groups of people who, due to my preoccupations of the past few years, I hadn’t been able to see very much of.  In addition to them, there were a number of friends whom I’d been in touch with, but not since the recurrence of leukemia.  I had been informed of their concern; I may have spoken to some of them on the phone; but mostly, I had effectively barred anyone from gaining access to me since falling ill once again.  Besides the personal anguish over my prospects for recovery, I was deeply ashamed at my failure to accomplish the victory I had already claimed.  Between my celebratory return to Sundance Institute, and the advertisement I had taken out announcing my arrival back on the Broadway stage, I had embraced my position as the unlikely survivor of the unsurvivable ordeal.  In fact, at Sundance, as I took up jogging and logged in my two miles each day with the other fitness fanatics, I wore a T-shirt I’d had printed up before leaving New York.  It was a bright blue, tight-fitting shirt, the better to show off my newly gym-crafted muscles.  On the back, in large white letters, was the proclamation:  “LIVING PROOF.”  My posing was intended more to help convince myself of my safety than anyone else, but seeing how much others were inspired by my victory was one of the major enduring inspirations for me.  When all my claims were proven false, on top of my personal anguish and rage, I wore a blanket of humiliation.  I felt that I had let everyone down by failing to achieve the miracle that had allowed so many to believe that miracles really do exist.

Although I had become pretty accustomed to the idea of the risks involved in the treatments I’d had and the ones I was facing, that doesn’t mean they didn’t scare the hell out of me.  I was terrified.  But it was much easier for me to broach conversations in which I would casually mention the 20 percent mortality rate of the transplant procedure than it was for my friends to hear about it.  Especially friends in California who hadn’t seen me in some time and whose only exposure to the whole mess had come from reports they’d gotten from other mutual friends.  I called them all, one by one, and would meet them for dinner, or just to hang out for the day.  I’d fill them in on the last three years of my life.  Then I’d tell them how one out of every five people who check into the hospital for a bone marrow transplant never comes out.  And I’d watch their faces change.  And then I’d watch them realize that their faces were changing.  And then I’d watch them try to change their faces back.  But that only made them change once more, into something else entirely different in itself.

I actually had no idea what I was doing.  I mean, I thought that I was just visiting with my friends.  Just filling them in on what had been happening in my life.  I had no notion of the burden that I was dropping on these people by encumbering them with such dire information in the midst of a jovial dinner.  It was only much later that I began to realize how eager I was to share my load, how aggressively I was testing their reaction to my possible disappearance.  Inevitably we parted all hugs and smiles, and I drove back to the place where I was staying, sobbing the whole drive home in the car by myself.  Once I could see it clearly I began to refer back to that trip as my “farewell tour” of California.  The most astonishing fact about it now is how well my friends all handled it at the time, one after another, right down the line.

Back in New York, on one of my last visits to the outpatient clinic of Sloan-Kettering, I was walking past the open door of the blood lab.  I was thinking what a waste of humanity that hospital made me feel: sick people packed like rats, lined up to receive their painful procedures; all hoping that it might pay off someday, when they would run far away and try to forget it ever happened.  I heard the bell ring and sped my steps to cram myself into the overstuffed elevator when, out of the corner of my eye, I saw a familiar face sitting in the chair of the blood lab twenty feet away.

Jesus, I thought.  Jesus Christ, it’s Willie.  Willie Dingle.  I couldn’t believe that Willie Dingle had made it out of the hospital.

Just then Willie caught my eye, and he smiled.  His eyes were clear and his teeth flashed a healthy bright white against his dark skin.  He looked good.  I forgot about the elevator and took a couple of steps closer, and we waved.  I stood staring at him, just outside the door, in the hustle and the bustle of the crowd.  I chuckled to myself at the memory of our cryptic, monosyllabic communications some months before.  Every morning, the same lines.  “Hey, Willie.  How’s it goin’?”

Willie’s inevitable response had since become a favorite of my own.  When friends or relatives would call on the phone to ask me how I was feeling, I’d get a private laugh out of adopting Willie’s exhausted expression.  “Ohhhhhh…You know.”

I was nearly knocked over by a man on crutches who had bandages wrapped around his head.  I caught my balance and saw Willie laughing at me as the blood lab technician jabbed a needle into the crook of his arm.  “Hey,” I said, grinning at him like a dope.  “Hey, Willie.  How’s it goin’?”

Willie smiled a little wider.  His expression was much more sly than I’d ever noticed before.  He was wearing black, stone-washed, oversize jeans and a neon blue shirt and brand-new Air Jordan sneakers.  I realized I’d never seen him wearing clothes before, nothing but a hospital gown.  Willie sat looking up at me.  He took a long deep breath, and he said, “Ohhhhhh…I’m pretty good, man.  How ’bout yourself?”

While riding a train, I stepped out onto the platform to stretch my limbs at one of the station stops.  Amid the swirl of passengers heading onto and off of the train I glanced briefly in each direction, trying to form some impression of the land I was passing quickly over.

On one side of the tracks was an outdoor barbeque.  A jumble  of people milling about in a dusty yard, or playing volleyball while beer sloshed up and over the brims of their plastic cups.  A three man band played twenty-year-old, second-rate rock songs as crusty-faced toddlers danced in drooping, muddy dungarees.

On the other side was an enormous field, broken only by the image of an old man and his dog.  For every bit of random chaos that cluttered the scene across the way, here was only stillness and quiet.  Suddenly, in one fleet whip, the old man flung out his arm, and out flew a red plastic disc.  The disc floated on the air, spinning and sailing, never rising or falling in altitude.  The disc travelled an impossible distance, really, as the man signaled and the dog took off in pursuit.

With wild abandon the dog ran.  His paws pounded furiously on the silent grass and dirt.  The man stood watching the dog, himself again as still as the rest of the field.  With ears flopping and tongue wagging the dog leapt and turned , snaring the disc in the grip of his sweaty teeth.  The man watched, struck dumb by the sight.  His useless body trying to comprehend how such a feat was possible.  How anything could be so young, after he had grown so old.

I was on my way to Baltimore, to have a bone marrow transplant.

After a search that rivaled the International Olympic Commitee’s perpetual quest for the ideal locale, we’d set our sights on Baltimore, Maryland, and the Johns Hopkins Hospital bone marrow transplant program.  Johns Hopkins was still having the greatest success that I was aware of with autologous bone marrow transplantation.  And the statistics from their studies, while nothing to leap up and celebrate over, did offer enough hope to help me envision a better future – that is, any future.  In addition, Baltimore was a city I knew and liked, and its proximity to home and friends made the move somewhat less daunting.

Jackie and I were traveling separately from my parents while they drove down with most of our luggage and their business supplies loaded up in their car.  Once again my parents had halted their lives in order to help me rescue my own.  Their efficiency in managing the swings between the tender calm of everyday existence and the frenzy of crisis had grown into that of a well-oiled, precision-tuned engine.  As I had been forced to do over the past few years, with each new upheaval my parents would disassemble their lives to match the degree that mine had been shattered.  Then, whenever time allowed, they would pick up the pieces and patch them back together, hoping that this time the glue would hold.  Although I continued to carry a residual fury toward them, they only rarely complained, and almost never retaliated.  Both they and Jackie had rented apartments in Baltimore, in order to be close to me as often as was possible.  It was going to be a long stay, and my parents and Jackie were prepared to set up life in a new city.

A few years earlier, I toured in the play
Master Harold…and the Boys
, including a four-week run at the Morris Mechanic Theater in Baltimore.  While there I stayed at the Belvedere Hotel.  The Belvedere, at that time, was a grand old building, faded, but with an obvious glamour from days gone by.  The hotel reminded me of an ancient, stooped old woman whose beauty is gone but can never be forgotten, due to her own remembrance of it and all that it once entitled her to.  The Belvedere’s lobby housed the Owl Bar, where one could still purchase a “yard” of beer, an old Baltimore tradition apparently, which is just what it says: draft beer served in a glass that’s three feet tall.  When the plans to go to Johns Hopkins Hospital for the transplant were finalized, both Jackie and my parents had, at my urging, rented rooms at the Belvedere.  Since the manager of the hotel was friendly with friends of my family and aware of the reason for their stay, he moved them into spacious suites at no extra cost.

In spite of the fact that we were arriving in style, with fine accommodations and secure finances, we approached both Baltimore and the new hospital like a pack of skittish refugees who’d suffered for too long in too many different lands to ever let our guard down again.  What we found there challenged our beliefs about the medical establishment, as well as our perceptions of ourselves as savvy, all-knowing New Yorkers.

The quickest way to compare the levels of compassion and humanitarianism of neighboring  cultures, judging from what I experienced in New York and Baltimore, would be to visit their sperm-banking facilities.  On a hunch, I had gotten myself tested before leaving New York and discovered, much to my amazement  and that of several medical professionals, that I still had a viable sperm count.  After four intense rounds of blistering chemotherapy, somehow my fertility capabilities were still kicking.  Considering what they’d already been exposed to, this was like discovering that I’d originally possessed some remarkable strain of super sperm.  Before checking into Johns Hopkins Hospital, I made an appointment at a Baltimore medical center and went to visit their Andrology lab.  This time, when I visited a woman in a window, I was given no small plastic container, I was given no thick manila folder, and no key.  I was simply asked my name, very politely, and, after completing some paperwork, told to go into the room with the green light over the door.  Once inside, I was to open the small wooden cabinet on the wall.

When I let myself in, I was amazed to find a spacious, comfortable room.  The room was ever so slightly decorated with a throw rug and the main feature, one of those giant, padded reclining chairs.  As soon as I opened the cabinet, I heard a bolt slide electronically into the door that I had entered through, and the green light over the door changed to red letters spelling the word “locked.”  In the small wooden cabinet on the wall was…What else?  My little plastic container, with my name and patient ID number already printed on it.  There was also a small, embossed plastic plaque that instructed me, when finished, to return the specimen jar to this cabinet, and then to leave through the other door, marked “exit.”  When I unlocked that door to leave, a flashing light would alert a technician on the other side of the wall to open the little wooden cabinet and retrieve the specimen.  This done, the technician would replace the jar with a fresh one and change the light outside the room back to green, ready for the next occupant.

What a system! I thought.  I was spared having to acknowledge to anyone face-to-face what was happening there in the room.  The plastic container, the physical representation of the act, was touched by no one but me.  It simply appeared and disappeared; there were no hand-offs.  And the magazines!  The magazines were in the room already, above the big recliner, arranged in a magazine rack suspended on the wall.  Not arranged just any old way, either.  These magazines had been arranged, on ascending shelves, in order of explicitness, with the milder ones in front.  That way someone who wanted to look at, say,
Playboy
, but who would have been offended by something more graphic, didn’t even have to glimpse the cover of the coarser material.  How incredibly, how brilliantly considerate and civilized.  The only way it could possibly have been more genteel would have been to serve tea.

The best part of the whole arrangement, though, was that when I left the room, when I left my deposit behind, I exited into an empty hallway that led right to the building’s exit.  There was not only nothing to be handed over and weighed, there was no one to face, period.  There was privacy.  After my odd, doctor-prescribed orgasm, I could leave with my thoughts and feelings intact, without having to cover them for any kind of social interaction.  Thanks to their well-thought out plans, in Baltimore, once I came, I were free to go.  Once I came, I was gone.

The storage fee in Baltimore was, and continues to be, a flat hundred dollars per year.  In New York, the fees have risen to more than twelve hundred dollars a year.  They started climbing after a lawsuit was brought against the lab a few years ago that was settled with a large payment out of court.  A white couple had stored semen there and used it to get pregnant.  Nine months later, the woman gave birth to a black child.

Returning to Johns Hopkins almost three years after Jackie and I had first visited and seen Dr. Rein Saral’s “When all you have is a hammer, everything looks like a nail” credo, I began to see that every aspect of life there was infused with the same attitudes we had seen then.  Even before our arrival, several weeks before my scheduled admission for the transplant, I received an information package in the mail.  Included was a twenty-page document that outlined not only the treatment – how it would be conducted, and what to expect – but also gave advice about the lifestyle changes that would be necessitated by such a long hospitalization, and how best to cope with such things.  The information included a telephone number for contacting the bone marrow transplant office and an invitation to call with any questions, large or small.

“They make it like going to summer camp,” I told Jackie.  I rifled through the materials they’d sent me looking to find my equipment list, where I would be reminded to bring along insect repellent and a flashlight with extra batteries.

The treatment protocol at Johns Hopkins called first for a bone marrow harvest.  To me, “bone marrow harvest” is one of the most precious terms any civilization has ever come up with.  Referring to the marrow of one’s bones as a crop to be harvested, the pungency of the agricultural overtones, evoked wonderfully homey values.  The only thing missing was a wood-burning stove in each of the hospital rooms.  In reality, what this meant was, they were going to take me to an operating room, knock me out, screw needles into my hipbones, and suck out about a quart of bone marrow.

This was a procedure that I had already been through once before, at Sloan-Kettering.  However, Johns Hopkins insists on using marrow that is harvested just a few days before transplantation.  This, we were told, was for “administrative” reasons.  Upon further inquiry we learned that by keeping stored marrow, the hospital was inviting the uncomfortable situation in which a desperate individual, who’d stored marrow months or years before, but who was no longer a good candidate to survive a transplant, might plead for a course of treatment that now  held little chance for success.  By harvesting only those patients whom they intend to transplant immediately, they treat only those patients who they truly believe will do well.  In recounting to the Johns Hopkins doctors my harvest in New York, I described how the doctors there had removed marrow from the back of my hipbones; how they had then flipped me over and removed marrow from the iliac crest, the protruding bones that slope toward the pubic area; and they had then even taken marrow from the sternum, running down the middle of my chest.  Using this last location, I had been told, carried with it the risk of puncturing a lung with the needle.

“The sternum?” said the doctor at Johns Hopkins.  “The sternum?  We haven’t used the sternum since 1975.”

So much for New York being on the cutting edge of medical advances.

After one day off to recover from the harvest, the drugs would be given.  Four days of drugs are to be taken in the form of pills, and then four days of drugs would be taken intravenously.  These “superlethal” chemotherapy doses would effectively kill off all of my body’s blood-making capabilities.  Then, the marrow that had been removed from my body would be reinfused, just like a blood transfusion, to begin re-populating the bloodstream.  This marrow would be first, with more metaphorical terminology, “purged,” using chemotherapy agents directly on it to kill off any residual leukemia cells.  If all went well, the “purged” cells would travel through the bloodstream back to their home deep inside the bones, where they would lodge and begin to reproduce.  The reinfusion of marrow is referred to as the “rescue dose,” which is appropriate, as without it one would quickly cease to exist.

An elaborate maze of euphemisms, to be sure.  But they symbolize how at Johns Hopkins Hospital they are in the business, above all else, of trying to save lives.  When I had glanced at my medical chart in New York – something that I felt afraid of doing openly, as if I were breaking some kind of law – I found within the two fourteen-inch stacks of rubber band-bound pages a completely different type of invented language.  I read in my records that I had “refused” an unnecessary test, and I wondered why it couldn’t just as accurately have stated that I had “declined” the procedure.  I read that “the patient
denies
any unusual pain,” and thought it sounded an awful lot like I was under suspicion of withholding information.  When I read of doctors lamenting the way patients have developed “adversarial” stances toward them, I wonder if the origins of the adversarial aspect of the relationship can be traced to the language taught in medical schoos.  Language more compatible with interrogation than collaboration.  And I doubt many of the textbooks have been written by patients.

When I showed up on the floor of the bone marrow transplant unit at Johns Hopkins Hospital, I found not a door with a number, but a door labeled with my name cut out of colorful construction paper.  I was given a giant calendar for the month to hang on the wall, on which I was encouraged to record my daily blood counts and to cross off the days until I was well enough to go home – an active demonstration of the fact that the staff
expected
me to reach that milestone.  I was visited – like a social visit – by most of the doctors on the unit, who would say things like, “I’m working on this service until the middle of next month.  Hopefully you’ll be out of here before me.”  When I would call for a nurse, the request that was relayed over the PA system wasn’t “Jenny to 307,” but “Jenny, Evan needs you.”  The treatment was still hell.  There’s nothing that anyone could do about that.  But these people realized it was therefore a pretty good idea to do as much as possible about everything else.