Heaven's Coast: A Memoir

Prologue: Is There a Future? April 1993
In 1989, not long after my partner Wally and I took the HIV test, the pain in my back--which had been a chronic, low-level problem--became acute. I went to a chiropractor I'd seen before, a rough-and-tumble kind of guy with a strange, cluttered little office on a shady part of Main Street in the Vermont town where we lived then. Dr. Crack, as I thought of him, was his own secretary, and furnished his office with all manner of cast-offs and inspirational posters, along with many implements of vague and mysterious use. In general, he did not inspire confidence. He snapped me around with considerable force, and though I felt much better after being treated by him, I also felt a mounting sense of nervousness about the degree of force he used. One day the crack my neck made as he whipped it into place was so loud that I resolved to see the new-age doctor my friends had spoken so highly of instead. She had cured one friend of a nervous tic in the eye simply by massaging a spot on her spine; others swore by her gentler style of manipulation.
On my first visit, as I lay on my stomach in a room full of ferns and charts marking the locations of chakras and pressure points, she touched one vertebra which throbbed, seemed almost to ring, painfully, like a struck tuning fork. I felt she'd touched the very center of the pain in my sacrum, the weak spot where my ache originated. When I told her this, she said that the particular vertebra she was touching represented "faith in the future."
Under her tentative touches--delivered with less pressure than one would use to push an elevator button--my back simply got worse, but her diagnosis was so penetratingly accurate that I never forgot it. After a while, I went back to Dr. Crack, and my back got better, but not the rupture in my faith.
The test results had come back negative for me, positive for Wally, but it didn't seem to matter so much which of us carried the antibodies for the virus. We'd been together eight years; we'd surrounded ourselves with a house and animals and garden, tokens of permanency; our continuance was assumed, an essential aspect of life. That we would continue to be, and to be together, had about it the unquestioned nature of a given, the tacit starting point from which the rest of our living proceeded. The news was as devastating as if I'd been told I was positive myself. In retrospect, I think of two different metaphors for the way it affected me.
The virus seemed to me, first, like a kind of solvent which dissolved the future, our future, a little at a time. It was like a dark stain, a floating, inky transparency hovering over Wally's body, and its intention was to erase the time ahead of us, to make that time, each day, a little smaller.
And then I thought of us as standing on a kind of sandbar, the present a narrow strip of land which had seemed, previously, enormous, without any clear limits. Oh, there was a limit out there, somewhere, of course, but not anywhere in sight. But the virus was a kind of chill, violent current, one which was eroding, at who knew what speed, the ground upon which we stood. If you watched, you could see the edges crumbling.
Four years have passed. For two of them, we lived with the knowledge of Wally's immune status, though he was blessedly asymptomatic; for the last two years, we have lived with AIDS.
His has not been the now-typical pattern of dizzying descents into opportunistic infections followed by recoveries. Instead, he's suffered a gradual, steady decline, an increasing weakness which, a few months ago, took a sharp turn for the worse. He is more-or-less confined to bed now, with a few forays up and out in his wheelchair; he is physically quite weak, though alert and responsive, and every day I am grateful he's with me, though I will admit that I also rail and struggle against the limitations his health places upon us. As he is less capable, less present, I do battle with my own sense of loss at the same time as I try not to let the present disappear under the grief of those disappearances, and the anticipatory grief of a future disappearance.
And I struggle, as well, with the way the last four years have forced me to rethink my sense of the nature of the future.
I no longer think of AIDS as a solvent, but perhaps rather as a kind of intensifier, something which makes things more firmly, deeply themselves. Is this true of all terminal illness, that it intensifies the degree of what already is? Watching Wally, watching friends who were either sick themselves or giving care to those who were, I saw that they simply became more generous or terrified, more cranky or afraid, more doubtful or more trusting, more contemplative or more in flight. As individual and unpredictable as this illness seems to be, the one thing I found I could say with certainty was this: AIDS makes things more intensely what they already are. Eventually I understood that this truism then must apply to me, as well, and, of course, it applied to my anxiety about the future.