Remembering Brad: On the Loss of a Son to AIDS (17 page)

Family portrait, just before Brad left home to attend the University of Utah, 1978.

Living in Los Angeles, 1981.

Self-portrait in dorm room at Utah State University, 1984.

With friend Donna during last visit to Los Angeles, spring break, 1986.

On the front step at home in Pocatello, with best friend Scott, Wayne, and Boots, September 1986.

Sandra created this panel for the National AIDS Quilt.

Chapter 4

World Out of Joint [August 1991]

As I look back on that period from June 1985, when Brad’s illness became unmistakably apparent, to December 1986, when his life ended
—
as I consider the events that led up to it and followed from it, what stands out for me is the pervasive irony. It was a time when the smooth fabric of our lives was turned inside out, a time when the dependable vehicle in which we were riding unpredictably jumped the rails.

It was a time of contradictions, of incongruities. During that period we built a new house and moved into it, a process normally associated with optimism: but from the outset it was a dwelling in which our son was dying. The delight we felt on the occasion of Mike’s wedding in August 1986 was undercut by the inexorable decline Brad was living out. When Ted left for a two-year proselyting mission in Uruguay a month later, our knowledge that his life was opening outward was companioned with our awareness of the closing down of Brad’s.

It was a time when we donned masks and wore them every day. We never intended for it to be that way. We did not like the duplicity. But fate and society’s ignorance and prejudice and our own pride and fear made actors of us. In front of the curtain we played our normal roles as well as we could, concealing our most urgent preoccupations. Sometimes we muffed our lines, sometimes we grew angry with our fellow actors. Behind the masks our turmoil seethed. We were bursting yet had to be contained.

Nothing from this period was more paradoxical than the experience of time. There were moments when day-to-day coping with small practical problems seemed like a sentence of perpetual tedium. On the other hand, we often felt as if on a roller coaster, careening through the weeks toward inevitable fatality with a momentum that was terrifying. At such times, this particular story had all too clearly not only a beginning and a middle but the prospect of a stark end. We discovered how near life is to death, yet how incredibly difficult it can be to reconcile them.

I want to describe here the existential disjuncture of this period. I want to write about that unending stream of illness-related practical problems with which we had to cope, about the practical implications of the philosophical and theological issues we were trying to untangle, about our struggle to salvage interpersonal relationships whose foundations were shaken. In a way these experiences were all so miscellaneous that I’m afraid the examples I cite may seem a hodgepodge. But keep in mind that that is partly the point.

Though the plot complication of our family story from this period blindsided us, not all the ironies that followed from it were bad. When it became apparent on Brad’s return from college that he was not well enough to take up his tools as a family carpenter in the construction of our new house, he scheduled an appointment with an internal medicine specialist. Was his student health insurance in force over the summer? I asked him. Summer coverage was optional for a small additional premium, he said, but he had neglected to extend it. Was it now too late to do so? He telephoned that same afternoon, a Thursday, to find out: the deadline for summer coverage was the following day. Next morning he drove one hundred miles from Pocatello to Logan to sign the request form and pay the premium.

That student health insurance covered the cost of the appendectomy he underwent two weeks later. It covered a subsequent hospital stay to overcome a serious postoperative infection. It covered the ongoing consultations and tests over the summer. Even more crucially, that renewal of student health insurance, so narrowly accomplished, carried with it a conversion privilege that enabled him in September, no longer a student, to secure as an individual subscriber a health insurance policy with Blue Shield of Idaho. While the new monthly premium was substantial, it amounted over the next fifteen months to only a small fraction of the sum Blue Shield paid toward defraying subsequent treatment costs. Without the conversion privilege, and with knowledge of his pre-existent condition, Blue Shield would have rejected his policy application.

The blood analyses done early that summer disclosed worrisome irregularities, indications congruent with several dire diagnoses, including AIDS and leukemia. That kind of news gets one’s attention. But I have always felt that the worst scenario is usually not the most likely to occur, and so initially I persuaded myself that a less serious explanation would eventually surface. In fact, the confirmation of the presence of HIV antibodies was not long in coming.

But antibodies do not mean necessarily that one will develop AIDS. Even if the patient exhibited preliminary symptoms such as fever, night sweats, appetite loss, weight loss, nausea, and cough, which in combination were in 1985 called the ARC syndrome (a precondition of AIDS), it was believed based on evidence available then that ARC would lead to full-blown AIDS in only about 35 percent of cases. In the years of which we are speaking, a formal and official confirmation of AIDS required diagnosis of either pneumocystis pneumonia or Kaposi sarcoma, opportunistic diseases characteristically associated with acquired immune deficiency. After 1987 the official AIDS definition was expanded to allow confirmation by the presence of several additional opportunistic diseases.

As the summer progressed, Brad experienced increasingly the symptoms of ARC. Yet we did not have a confirmed diagnosis of AIDS, and I kept my mind fixed on that percentage of cases in which ARC would apparently not reach AIDS. Gene Ratcliff, Brad’s physician, kindly did not disabuse me of my hope based on technical and somewhat arbitrary definition. But he did refer Brad to a communicable disease specialist in another city for evaluation. She did not mince words. “He has AIDS,” she said to Sandra in a curt voice devoid of any apparent sympathy. She was standing several yards away in the next room. “Most likely it will be a slow death. Come back when he has difficulty swallowing, or when diarrhea is unmanageable.” I dismissed this grim prognosis by simply blocking it out. How could she possibly know for sure so “prematurely”? What did she know about our faith and Brad’s will?

Meanwhile we had to deal with the PR and FR (family relations) demands of our situation. We hardly knew what to tell people. That Brad was homosexual was known within the extended family by only three pair of aunts and uncles. Among our general acquaintances, and among Brad’s childhood and teenage friends in this community, none had been told by him or by us. How were we now to explain this substantial illness he had developed?

As it turned out, with a good deal of hedging and vagueness: “Well, he has apparently some kind of virus which saps his strength. It has left him exhausted, somewhat in the way of mononucleosis. The physicians are still trying to pin it down, but there’s nothing conclusive yet. Could be quite a number of things.” Etcetera. Not quite a literal lie, strictly speaking (there was still no
confirmed diagnosis
according to official definition), but pretty evasive. We did not mention the overwhelming likelihood of AIDS. I remember in early August attending an extended family reunion, and after hearing our explanation my cousin’s husband, a chemistry professor, said: “It sounds a lot like AIDS.” “Oh good heavens,” Sandra replied, “I certainly hope not.”

It was a shameful deception, in more ways than one. Looking back, I find it incredible that we maintained this facade with our acquaintances (excepting only a few persons) for as long as we did. In particular, I find it ironic in the extreme that within an extended family I had always considered loving and closely knit, we could not express our anxiety. Whom were we trying to protect, and from what? Was it Brad, who, we thought, would suffer in the opinion of some of them when they discovered he was gay? Was it our parents, Brad’s grandparents, who we thought would be caused extraordinary pain by that revelation? Or was it ourselves, because we were still not able to accept the stigma of homosexuality in our immediate family? Were we all somehow afraid to acknowledge that we as an extended family were not perfect according to a prescribed pattern, or even more alarming that the pattern itself might be out of touch with reality and therefore flawed? As I view it now, this behavior on our part reveals the presence of dysfunctionality where I would like to have denied it. Somehow the religious attitudes powerfully established in our greater family made us false to one another.