June 5, 2001

None of Us Ever Know Why We Are Lucky




I was checking my mailbox when a neighbor asked me if I'd heard that a mutual friend, a doctor, had suddenly died from pneumonia. I thought he must have gotten his story wrong. It was the beginning of 1981, and no one died from pneumonia anymore, especially not a doctor. A week later the same man mentioned a producer of high-profile Hollywood parties who had apparently died with "that strange cancer some people are getting."

Without realizing it, I'd just heard about what was eventually named AIDS, a disease I would come to know a lot about and that I would nearly die from.

My cancer began as gelatinous ink-like stains on the roof of my mouth. It spread to my gums, frightening me with its mold-like ubiquity. I was willing to try anything to stop it.

"Are you taking shark cartilage?" a close friend asked. "No cancers are known in sharks." He had the same cancer in his mouth and had researched the topic, but, despite the shark cartilage, it spread to his throat, to the passages in his ears, to his brain.

I keep a picture of him on a bookshelf. In it he has a rogue's grin, and his hands are jammed into his pockets, a trickster plotting a prank. Sometimes when I look at it, I laugh, not just for the good times, but at both of us gobbling shark gristle in our attempt to live, to continue.

When I stopped counting, after five years or so, 73 people I had known had lost their lives while I lived on. Plagues are funny that way. I think about it from time to time.

If at the edge of death and given a chance to live again, most people would say they know exactly how they would change their lives; they could be sure of what's important. But, I ask myself, have I, who until now have cheated odds and survived a plague, really changed? What do I know now that I didn't know before of life and death, or of suffering and grief, or of love? What do I know that someone who has endured war, or poverty, or racism doesn't know? I have to ask myself if there is anything special in all this.

The great Argentine writer Jorge Luis Borges, in speaking of his own blindness, said, "We have a very precise image--an image at times shameless--of what we have lost, but we are ignorant of what may follow or replace it."

Once I helped care for a sick and very cranky friend for whom nothing seemed to be enough. I finally asked, exasperated, "Damn it, what do you want?"

"I want to be held," he said.

So I picked him up and took him to a couch where I sat with his skin and bones in my arms and watched the afternoon light fall across the walls and disappear. We spoke intermittently of people in our lives, come and gone. Like Borges, he had become blind. Like Borges, I did not know what would come next. I moved to the mountains in an attempt to escape.

My pneumonia began as drenching night sweats. I had been around long enough to know what that meant, but I blamed it on too many blankets and a thermostat set too high. Although it had been an early autumn and snow sat on the ground, off went the heat and blankets while I slept under only a sheet and kept the windows open. When denial failed, as it always does, I went into a hospital and faced what had to be faced.

My friend Sylvia brought my boom box, my Puccini and Verdi discs, reminders of life's passion and beauty. Against the wall, opposite my bed, we set up a Buddhist shrine, a reminder to accept impermanence, and then I settled in for the long haul.

When my veins began to burn out from twice daily intravenous therapy, I would stare at the shrine and listen to "La Boheme" cranked up loud while the nurses poked and stuck, searching for veins to hold the lines. Once the music was off for some reason, and one of them asked, as she cracked the staples from my open-chest lung biopsy, "Where's the music? You think this is any easier on me than you?" Watching patient after patient die took a toll on caregivers that has never been acknowledged.

A middle-aged Mexican woman of great dignity cleaned my room. It must have been a source of constant anxiety for her to scrub the toilet of an AIDS patient. Too often the small braveries of life pass unremarked. But it pleased her that I spoke Spanish, and she began to show me pictures of her family, one day informing me that her eldest son had just won something called a Rhodes Scholarship. I didn't believe it until she unfolded the newspaper clipping. I asked to see the clipping often after that, both of us reading it together, laughing, shamelessly inspired by life's ability to provide the unexpected gift.

When I left the hospital, I knew I was very sick and would probably die within the year. Finally, after nearly a decade of preparing for it, I was leaving the penumbra and entering the shadow itself. When friends came to visit, I was content to sit without talking, listening to music or taking small, slow walks in the garden examining the flowers. It bored some of them. Such slowness. I felt the grief of my father. What parent expects to outlive their child? My son visited often. Our love deepened in the shortness of time.

And then, suddenly, it seemed from nowhere, the drugs appeared. Enough of my immune system was left to respond, but for several friends it was too late. Even so, one of them left too slowly, the cancers on his leg releasing a stench so intense it was difficult to sit beside him at the end. One of the last things he said to me before drifting into morphine's silence was, "You are so lucky, John."

None of us ever know why we are lucky, get the right roll, are born with possibilities laid out endlessly before us. Perhaps that's why it's difficult for me to be certain of anything from the past 20 years except what Camus observed: "In time of pestilence there are more things to admire in men than to despise." That, and if we do not take care of each other in this world, the suffering will become unbearable.

And so, now, I have a life, albeit a different life. I am grateful for it.

John Fritzlen was a teacher in New Mexico and California before becoming ill with AIDS. He lives in Los Angeles, where he is finishing a first novel, and is a teacher in the AIDS Project Los Angeles Writers Workshop. For information about the free workshop, call (213) 201-1600, Ext. 1136.