Time on Fire: My Comedy of Terrors (14 page)

“You know, Louise, I have been talking, week after week, about my screenplay.”

It was Bill speaking.  Bill was a slim man with close-cropped sandy hair who spoke with the barely contained distress of an unfortunate choice for a
Candid Camera
stunt.  His manner was reminiscent of the overly earnest victims who had to be rescued by Allen Funt before they collapsed into tears, too distraught to be viewed further by a family audience.

“Now I understand that my relationship to my father has kept me from feeling that I deserve any kind of success,” Bill was saying.  “I realize that I have tried to please him by remaining the failure that he expects me to be.  But I have been doing my affirmations in the mirror every day.  I have told Jason that he has to move out, because I know I need a lover who believes in me as much as I believe in myself.  I really know in my heart that I am a good writer, and I am sure that I am going to sell my screenplay.  I even have a figure that I’ve been visualizing.  Eighty thousand dollars.  I know that I am going to sell my screenplay for eighty thousand dollars.  So, if I am doing my affirmations; if I believe that I deserve success; if I know that I am ready to accept success into my life, why isn’t it happening?”

I already had confusing, mixed feelings about Louise Hay’s philosophies.  I looked to her books and tapes for the same comfort and inspiration as the others in the room with me – and I found plenty of it.   Louise was a survivor of serious illness herself, and many of her ideas had been incorporated into my own emerging amalgamation of techniques.  For instance, I could easily imagine that someone’s reluctance to confront specific obstacles in his life might inhibit his drive to get well.  It seemed reasonable to me to investigate if my illness was protecting me from anything and, if so, to wrestle with those fearful issues.  This practice fell into the category of grabbing control and influence where it might be available – again, to gain the
greatest potential
for success.  And the room wasn’t empty of positive examples.  A lot of what I saw and heard that night were miraculous accounts of love and will conquering fear and circumstance.  People who had been pounded by life, but never into submission.  People who insisted on scouring the terrain of every misfortune for a foothold, any aspect of it that might be turned into some form of opportunity.   Where I started to lose my connection to Louise’s work, just like that of most of her peers with whom I was familiar, was when they promoted their philosophies as formulas.  Theories that I found invaluable for increasing my conceivable influence over my illness were being seized on by others at the meeting as concrete equations, and those people were not being corrected.  As helpful as I found some of the talk in the room, at times I found the discussion swirling around me to be grotesque and dangerous.

Louise’s groups had expanded to several evenings a week after the explosion of the AIDS crisis.  Awareness of the epidemic was multiplying exponentially during the spring of 1986, when I visited California, and it formed a strong undercurrent to a lot of the searching going on that night in Santa Monica.  It is logical to wonder, when trying to wrest some reassurance that the world is a safe, protective place, about a virus that kills indiscriminately and ruthlessly.  This was the type of dilemma that made it impossible for me to agree with the more trusting, faith-oriented aspects of Louise’s, or anyone’s, beliefs.  While I found value in asking myself how I might benefit from my illness — how I could use it to improve my life once the danger had passed — I cringed when I heard people distort this kind of eagerness to improve into questions of why certain groups had brought disasters upon themselves.  There was some talk of how homosexual men had needed to confront the self-hatred that kept them closeted and their inability to love as symbolized by promiscuous sexuality, and so had somehow manufactured the virus as a means of accomplishing this positive evolutionary step.  When many in the group later began wondering aloud why the Ethiopians needed the famine that was starving their nation, why they had brought it upon themselves, I was staggered by the absence of a ringing denunciation.

There is a distinct difference between committing oneself to using a crisis for growth and improvement and deciding that those changes are the reason why the crisis occurred.  I said many times during the week spent at the Simonton Center, “If leukemia doesn’t kill me, I’ll probably live a better life as a result of having had it.”  But that didn’t stop me from viewing the entire era as an abomination.  Never once have I been glad it happened to me.  Nor have I ever felt that it was something that I needed or something that was as it should have been.

Louise ended the meeting as I had hoped she would, with a series of hands-on healings.  This was the aspect of the meeting, of the whole holistic healing movement, that I found most thrilling.  The notion of human beings offering the power of their own souls to another in need; the transference of the gift of life force from one individual to another, was something that I found mesmerizing.  I suppose it is the only blind faith that I have ever allowed myself to indulge in.  While I prayed often in times of danger, I never felt certain there was anyone who heard.  But in Louise Hay’s living room I could feel her hands on my shoulders and chest.  I could look up from my position on the floor to see the fifty or sixty other people, each touching another, making a human chain to the point where one of them touched Louise.  I experienced a rejuvenating rush of strength as this undeniably powerful woman willed the energy of the entire room into my body.  This was, for me, the apex of my journey so far.  The culmination of months spent trying to convince myself that human beings possess the ability to create the circumstances they crave and that others can help them to conquer the forces teamed against them.  That the world is full of miracles and that a miracle was available to me.  I rose up off the floor intoxicated with my willingness to open myself up to the goodness available in the room, even when I disagreed so feverishly with much of what was said.  I nearly floated back to Barbie’s side, so sure of my destiny; so worried that time might come to mock me by proving me a fool.

I left Louise chuckling to myself at what I thought of as the silliness of her parting advice.  As I said good-bye and angled for the door, Louise warned me of the power of color in affecting people’s outlook and potential.  She cautioned me about the muting qualities of black clothing, and recommended that I wear colors such as green and blue, which symbolized growth and life – the colors associated with the water and the plants of planet Earth.  I thanked Louise profusely, and headed out the door.  I had been aware of her beliefs before heading over to her house that night, yet I had chosen, in spite of them, to wear my favorite sweatshirt to the meeting.  It was made of heavy jet-black cotton, and it was printed with a subtle logo from the Sundance Institute, a script-development workshop founded by Robert Redford that I was proud to have been a part of.  Sundance was the last professional community I had bonded with deeply before becoming ill, and it was a major inspirational goal for me to return there as quickly as possible after I was well.  Many of the friends who saw me through my treatments, who had called and encouraged me, I had met at Sundance.  I commented silently to myself on the ridiculousness of branding colors with universal connotations.  After all, my black sweatshirt was a reminder of some of my most treasured memories.  How could it be harmful to wear something that made me feel good?  I told myself that I was above those superstitions, that I had no need to play those kinds of games with myself and with my mind.  And I didn’t wear another stitch of black clothing for the next seven years.

The last few days at the Simonton Center were filled with even more good advice and solid techniques for, if not overcoming illness, at least managing it well.  To Carl’s credit, he noted this distinction and emphasized the equal importance of both.  He imparted the familiar wisdom that just as important as long life was the courage to live fully the life one had left — and neither Carl nor any of his staff was ever at a loss for an aphorism to illustrate their points.  “More perfect in being, than trying to be perfect.”  “The process of struggle needs to be worthwhile.”  “It’s not what I do, but how I
think
about what I do.”  “Be committed to beliefs, but not attached.”  “The opposite of TRUST is FEAR.”  The collection scrawled on the meeting room’s blackboard was truly impressive.  Most of the slogans, in the context of the lectures, managed to avoid the patronizing quality of the platitudes they so closely resembled.  They were enthusiastically, if less than judiciously, used as helpful illustrations of whatever concept was being discussed.  But one of these trite sayings went far beyond the realm of illustration and became a source of illumination by itself.  It made an instant impact on me and has remained a challenge to live up to ever since.

In the midst of a compelling talk about relationships, including an analysis of the concepts of “rescuing” others when help is not asked for, and thereby “victimizing” oneself when their gratitude is insufficient, one of the therapists made a  pronouncement of an infallible technique for happiness in life and peace in personal relationships.  When he spoke theHis words took my breath away.  Partly because he was right; it was a perfect formula.  But on some intuitive level I must have also recognized the deceptive difficulty of this exquisitely complex equation.

“Always ask for what you want one hundred percent of the time.  Be willing to hear no.  Be willing to negotiate.”

I wondered at the terror these three bland sentences threw into my heart.  The simplicity of the message made it seem almost tender.  But the design was hard-edged, and I knew instinctively that living up to the dare would be, unless I were to dramatically alter my ways, nearly impossible.  I didn’t know why always asking for what I wanted should be such an alarming proposition.  It seemed to be a perfectly sensible way to behave.  In fact, I couldn’t quite pinpoint when, or why, I had stopped doing just that.  I don’t know what effect, if any, this tidbit from the week at the Simonton Center had on the other participants.  But for me, it began to alter my life almost immediately.  Especially in that great bastion of negotiation and compromise:  the long-term romantic relationship.

Jackie and I were deeply in love.  On page after page of the notebook I kept through the first six months of treatment, I had written about my love for her.  In trying to outline graspable goals for myself beyond our time at the Simonton Center,  I wrote about our future together.  I spent hours visualizing images of domestic bliss, symbolizing the depth of our love.  I imagined our children and held fatherhood out to myself as the ultimate purpose in life; the foremost reason to persevere in spite of anything that might happen.  We would both fantasize, hour after hour, about parenthood.  We laughed at each other for the ways in which we expected the other to be an overprotective mom or dad.  We poked fun at each other’s worst physical characteristics, blaming the other in advance for the agony our imagined offspring would have to endure in elementary school for having such a funny nose; such giant elephant ears.  Jackie seemed proud of me for the way I had handled the catastrophe my life had become, and I was something much more than proud of her.  I felt that I had been granted the privilege of sharing my time with the most generous, admirable, like-minded woman the world had to offer.  A woman who, when times got tough, was capable of feats of strength I had only heard told in legends from the past.  One of the dominant goals I had set in confronting the adversaries that consumed my recent past and my forseeable future was to forge an enduring love with Jackie — the love of my life.  The only problem was, in the weeks leading up to and including our Simonton stay, we never had sex anymore.

Confronting death before I had gotten to form a secure sexual identity for myself had felt like one of the most frustrating and tragic aspects of the whole episode.  Many of my pledges over the past six months had revolved around eliminating what now felt like the ridiculousness of the inhibitions surrounding my sexuality.  Indeed, during months spent locked away from life, wondering whether I’d ever get another chance at it, any type of timidness or reluctance had come to seem like a ludicrous waste of opportunity.  The reason for living was fantasy fulfillment, I concluded.  I had made the mistake of tiptoeing my first time out, but I wouldn’t play the fool twice in a row.  I promised myself that if I got my time back, I was going to become the free, adventurous being that I’d always wanted to be.

This formed an important aspect of my earlier and ongoing therapy in New York with Dr. Patten, my “death therapist.”  In counseling me to deal with the issue of my own mortality and the possibility of its imminence, he also helped me explore the converse occurrence:  How would I deal with life if I were able to get it back for myself?

My answer to that question was to launch into a laundry list of “never agains.”  Never again would I settle for apathy or discontent; no longer would I allow other people’s fears to intimidate me; from now on, I swore, I would insist on boldness and candor not only from myself, but from anyone who wanted to spend time with me.  I issued the challenge to myself in Dr. Patten’s office to seize hold of life and wring every drop of drinkable moisture out of it.  I was going to explode out of the starting block, and anyone who couldn’t keep up would simply have to be left behind.  Dr. Patten’s response to my weekly harangue was a languorous, admiring half-smile, followed by another question.

“Well.  You’ve certainly made it very risky for yourself to survive, haven’t you, Evan?”

For a while, Jackie and I had kept a sex life going, even in the hospital.  At first, when the shock of the diagnosis was fresh and our fear of losing each other caused a swelling in the intensity of our feelings, we fooled around on a pretty regular basis.  The difficulty of accomplishing that was one more indignity that we latched onto as fuel for our outrage over the conditions of confinement.  Hospital sex became a militant act.  “We are young, vibrant people,” we would rail on to each other.  “How dare they deny us any privacy, any access to a space where we might feel comfortable to engage in what is probably the most life-affirming activity available to a human being?”