H. Wayne Schow
World Out of Joint [August 1991]
[p. 111]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 [p. 112]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 appendec-[p. 113]tomy 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 [p. 114]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 [p. 115]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.
Brad’s condition worsened through the fall. In late October life-threatening pneumocystis pneumonia set in. There followed ten days in the intensive care unit and concurrent announcement in the local newspaper of southeast Idaho’s first confirmed case of AIDS (the patient’s anonymity was preserved). In the face of these developments, we could no longer avoid disclosing to additional members of our greater family the nature of Brad’s illness. Particularly those who were likely to visit our home. We thought they should be able to decide if they wanted to see Brad before he died and if they wished to risk exposure to the disease—to eat at our table, to use our bathrooms. Some of them, as it turned out, didn’t.
But with other acquaintances, we stayed closeted. Besides inertia, there were compelling reasons to do so. Nineteen-eighty-six stands out as the year the general public finally got the message that AIDS was real and a threat to the whole population. You could not pick up a newspaper or magazine or turn on the television without hearing about this frightening disease and those who transmitted it. No longer was this a phenomenon confined to San Francisco and New York. Everyone in the provinces was now being explicitly warned. Misinformation about its transmission was widely re-[p. 116]peated. Suddenly fear was rampant, a lot of anger and intolerance expressed, even violence was perpetrated against some AIDS sufferers and their families. With rhetorical excess, prominent politicians advocated identifying publicly those diagnosed with AIDS, isolating them on islands, branding homosexuals. One did not have to be paranoiac to recognize how much bigotry was out there, and how explicitly it was expressed, even in Pocatello.
Whatever inclination we may have felt to acknowledge openly our son’s illness and his gay identity ran up against that awareness. And so we kept ourselves in isolation partly imposed, partly self-chosen. We seldom invited people to our home—an awkward and uncharacteristic stance, especially at a time when our friends and acquaintances were curious about our new dwelling. (“We’d like to come and see your new house.” “Sure, that would be nice. We’ll give you a call—sometime soon.”)
In addition to this ongoing necessity of responding to well-intended inquiries (what do you say, for example, in the drugstore when casual acquaintances ask what brings you to the prescription counter?), we faced other pressures. Not least among them were all the decisions and uncertainties and frustrations that come in dealing with the health care establishment when a loved one is seriously ill.
How do you choose a personal physician, the one who is most knowledgeable about your disease and how to treat it, one who will be supportive, tolerant, accessible? If you have an exotic new killer disease that few physicians in southeast Idaho have even seen, does it make sense to remain here for treatment when in Los Angeles there are doctors who have been treating AIDS patients by the score for half a decade? More than a few of Brad’s friends in L.A. urged him to return to southern California. He weighed the alternatives. We in our supporting role pondered the matter.
Inevitably, in deciding among health care alternatives, one must consider financial implications and support resources. Where would he live if he went back to L.A.? Who would care for him when he required constant assistance? Unable to work, without a [p. 117]job and an income, how could he meet living expenses? While these difficulties were not insurmountable, they were nevertheless formidable. On the other hand, if he stayed in Idaho he had a haven and ready support from us, though coming home and living under the parental roof when you have been independent for six years is not particularly what a young man desires. As for medical care, Brad reasoned that doctors in L.A. had no miraculous cures, that a competent practitioner in Pocatello could probably do as well for him. Moreover, he had quickly come to respect Gene Ratcliff, with whom he developed a fine rapport. Having decided to put his case in Dr. Ratcliff’s hands, I do not think he ever entertained doubts about it.
Nor, after our initial uncertainty, did I. Ratcliff proved a tremendous support for him—and for us. He respected, cared about, and became emotionally involved in Brad’s case. With local hospital administrators and staff, state health officials, news media personnel, and others, Ratcliff was a fierce champion of his patient’s rights and interests.
During that year and a half, numerous others in our local health care community responded in their various capacities with similar professional competence and compassion—some hospital and home care nurses, for example, physical therapists, hospice workers, lab personnel. Remember that in 1985 and 1986 this could not be taken for granted. In the provinces few health care workers knew much about AIDS beyond its killer reputation, and many felt very much at risk in dealing with someone afflicted by it.
Brad’s hospitalization in November 1985 underscored this point. He had firmly resisted this step, but with the onset of pneumonia his condition deteriorated so rapidly and dramatically, culminating in a fever-induced convulsion, that we had to summon an ambulance. To our surprise and irritation, what arrived at our curb in response was not merely an ambulance but also a large fire truck, lights flashing, siren wailing, with a resuscitator and four attendants. They charged in with good intentions, insisted on completing a time-consuming protocol of questioning that seemed [p. 118]less than fully needed, managed to knock over a humidifier full of water, and generally created mini havoc. When they discovered that the person they were conveying in all likelihood had AIDS, they were angry and almost refused to complete their task. They arrived at the emergency room full of complaint, and only warnings from Ratcliff silenced them.
After a lung biopsy confirmed pneumocystis and, now officially, AIDS, Brad was taken to the intensive care unit. The next day, when his blood oxygen level fell to a point incompatible with life, he was attached to the respirator. In the ICU stringent protocols were established for nurses and visitors. Initially, all of us had to wear masks, gowns, gloves. We had to wash our hands on entering and leaving. Some of the nurses, obviously reluctant and terrified by exposure to the carrier of this plague, covered themselves most meticulously. (Two or three even declined to work in this dangerous situation.) The attending physicians, who knew more about transmission of AIDS, did not bother to put on this protective armor, nor did some of the more confident nurses and technicians.
The extreme sanitary measures were doubtless well intended, and I understand that they function to protect the patient. Nevertheless, the protection was symbolically apt: it bespoke, and underscored for emphasis, the “unclean” status of this patient, an uncleanness that for some of the nurses included the abhorrent and “untouchable” condition of homosexuality. If the patient feels feared or in some way despised by those who provide his care, and Brad rightly recognized such attitudes in several of his nurses, that state of mind is hardly conducive to comfort and healing.
I remember vividly my gratitude to those nurses whose natural manner and conversation consistently rose to the challenge of this special case. One ICU nurse in particular caught Brad’s imagination. This fellow was an avid falconer in his spare time. He described vividly to Brad the care and training of the raptors. “When you’re feeling better,” he said matter-of-factly, “why don’t you drive up and spend some time with me and my guys out in the field. And you can watch them tear apart the chicks I raise to feed them.” This [p. 119]as if Brad’s recovery were a foregone conclusion. Though precariously ill and silenced by a breathing tube in his throat, he seized eagerly on the prospect of this outing.
One year later when Brad was hospitalized during the final week of his life, the nursing staff had grown in experience, knew more about AIDS and how to deal with it safely and confidently. I remember one nurse especially whose compassionate, accepting manner eased that ordeal for all of us. One morning a couple of days before the end, she was, with gloved hand, helping him to overcome the effects of severe constipation. “Now bear down,” she said; “I can feel it coming, that’s good; we’ve got to get it out, keep pushing.” Brad, lying on his stomach and only semi-clear headed, opened his eyes and fixed them on his mother seated at the bedside: “What is going on here?” he said incredulously. “Am I having a baby, or what?”
Even under the best of conditions, with the greatest good will on everyone’s part, the delivery of health care can be laced with stress and frustration. When a loved one is suffering, delay seems intolerable, inaccessibility is maddening. Waiting for a return call from a busy physician leaves one feeling so powerless, so off stride. One paces back and forth, physically, mentally. And when someone is assigned to cover for an absent regular doctor, one doubts that the substitute “fully” understands the situation with all of its contextual nuances. After all, the choice of a personal physician involves a personal relationship, built on familiarity and trust. When that reassuring element is missing, even impeccable treatment by a stubstitute seems to fall short. Then there are the times when the problem is not the physician’s inaccessibility but rather the question of whether, given ambiguities in the condition of the patient and given one’s own exaggerated anxieties, one ought to bother the busy doctor at all. I remember more than a few occasions when I fretted over whether a call was justified.
The world and its institutions are imperfect, and in the throes of illness one resents that. I remember one summer evening taking Brad to the hospital emergency room. He was nauseated and [p. 120]feverish. We were ushered into a brightly-lit examination area to wait. The room was excessively air-conditioned. I was cold, Brad was shaking. I could not find anyone who was able (or willing) to alter the room temperature, and it was a long time before I could get anyone to supply him with a blanket. We waited—and waited—and waited—before he was finally seen by a brusque on-call physician, who, I thought, discussed Brad’s symptoms as if he were dealing with a crop report. Stonefaced, he showed not the slightest recognition of the human dimension.
We lapsed into Kafkaesque absurdities in other areas. Anyone who has had to consult numerous specialists, visit care centers for tests and treatments, purchase prescriptions and other medical supplies, knows what it means to be buried under billings and insurance forms. Nothing seems to be standardized: the neurologist’s forms are unlike the opthalmologist’s; the surgeon requires that you file your own insurance claims; the insurance company’s communications value convenience more than clarity; every office or agency has different systems, different policies. When one is ill or stressed and taxed for time, such idiosyncracies afford little amusement.
One thinks of Kafka’s protagonist K. who, having reached the outer precincts of the inscrutable Castle, encounters with amazement a seemingly endless array of files and official paperwork. He senses that they may relate importantly to his case, but he has no clue how to access them. Like Kafka, I found in this confusing and irritating battery of business documents a bizarre symbol of disjunction—the impersonal face of the health care establishment, seemingly impervious to the existential anxiety that derives from human illness.
The pressure of dealing with the outside world became increasingly compounded by intrafamily stresses. It is natural that tensions arise in families due to differences of temperaments, priorities, generational and gender perspectives. Under the best of conditions, these are accommodated and minimized. But when there are too many demands, too few resources to meet them, and too little outlet [p. 121]for emotion, normally good relationships become brittle. I state the obvious. Over the years our family has done, I suppose, as well as most in managing our differences, but before Brad’s ordeal was over we all felt the lacerations of blame and frustration.
Toward the end Brad’s temper was uneven. Mostly he was gentle and patient. But as his sense of autonomy declined, as he grew increasingly dependent even in small matters, his frustration could erupt in sarcasm or anger. Those who stood by, who loved him and tried to ease his pain, were on those occasions the innocents on whom his wrath fell. He would apologize—but the hurt lingered.
One facet of this internal tension was sharply focused in late October 1985 as Brad slipped into the throes of what proved to be pneumocystis pneumonia. It can be difficult for laypeople to assess just how ill a person is and how much immediate professional attention is needed. Brad emphatically did not want to be hospitalized, and he protested that his symptoms could be treated at home. Ambivalently, I accepted his assessment of the situation. Sandra, more sensitive to his real condition than I, pressed hard to give Ratcliff power to hospitalize him. We had a standoff for forty-eight hours during which time she remained in his room to minister to his needs. She knew his condition was sinking rapidly, and she was frustrated with our denial and male stoicism. For her, it was a confrontation of masculine and feminine ways of understanding and evaluating. Following this incident, she felt increasingly isolated and powerless in an otherwise all-male household whenever her feelings ran counter to Brad’s and to my wait-and-see, tough-it-out mentality.
Aside from Brad, it was Sandra who bore the brunt of the long ordeal. Gene Ratcliff observed that it was she who steadied us all and kept us from unraveling. He admired her for her grit and was surprised that she had held together so well. She had done so at considerable cost. She had been the essential care giver, day in, day out. She had done most of the nursing, had been the manager who dealt with all the daily details. She was the first line of advice and support, the listening ear when Brad (or any of the rest of us) needed [p. 122]to talk, or the closest target when he needed to vent his anger. It was she who was always half awake at night, listening for him much as she had done twenty-seven years earlier, she who could sense when he needed assurance to get him through the night. Mostly it was a twenty-four-hour-a-day job, and she filled it for eighteen months.
“What kind of support system did you have?” people have since asked her. The fact is, almost no one knew what she was enduring. Of the few family members and friends in whom she had confided, most were not nearby or were seriously troubled by the socio-religious-health aspects of the situation as they perceived them. There were no organized groups in the community at that time to assist people confronting homosexuality or AIDS. Even I was not there sufficiently to share her load.
Incredibly, I was still trying to carry on business as usual, taking care of most of my faculty responsibilities, not telling anyone in the department about things at home, keeping up minimally with church duties. And I continued to do this until almost the end of Brad’s life. Some of us are creatures of our training to such an extent that we do not even ask if there is any virtue in continuing to pull in harness. Not that I was detached from what was happening at home. But why didn’t I see at the time that I could give myself permission to miss some working hours and to let others assume my church tasks?
Perhaps that was my way of coping. Clinging to the reassuring familiarity of the daily round was my informal support system, a feeble attempt to hold absurdity at bay. But near the end this subconscious strategy was not enough. I remember during the last week of Brad’s life being so full of grief that I broke my closeted silence. “My son is in the hospital; he is dying,” I told one of my longtime colleagues. I fought back tears. He was so surprised, and so full of compassion for me. It had not occurred to us that our friends would understand and stand by us.
After Mike’s marriage in August, he left with his bride to live in Boise, and we saw them infrequently. Ted departed for Uruguay in [p. 123]early September. About the middle of October, Roger resigned his position as office manager of a small manufacturing firm in Santa Barbara and came home to be with the three of us. His intent was partly to buoy up Mom and Dad, partly to take his leave of Brad, his brother closest in age and boyhood experience. For him this was a family thing, and he wanted to be involved.
When we moved to 20th Street in late May, Brad occupied a bedroom on the second floor. He felt no enthusiasm for the new house, partly because he preferred places with some history or antiquity, even more perhaps because in the final months of his life he wanted to be surrounded by a familiar environment. We did not yet have a landscaped yard, and there were still unfinished interior details about the house. I believe he felt, after we moved, as if he were camping.
This uprootedness was not lessened when in late July his aching legs could no longer negotiate stairs without difficulty. His second floor bedroom was problematic, but the main floor possibilities were limited. There was only a sun room connected by French doors to the dining room. The former was not large, but it was light, and it had the further virtue of being sufficiently close to the living area so that Brad could occupy it without being cut off from the life of the household. So we set about organizing it as a bedroom, fitting its numerous windows with louvered blinds, installing an air conditioner. The brick-faced tromb wall, with its thermal mass, provided effective sound insulation from household noise.
In an effort to make his days pleasurable, we set up a TV in his room, brought in some books by Mann, Marquez, and Faulkner, and subscribed to The New Yorker, The Nation, Vanity Fair, and Atlantic. But he found little satisfaction in reading during those last few months. He could not focus or sustain his attention: I do not know if that was because his illness wearied him and drained his concentration, or if as the sand of his life ran out the ideas and issues of those books and periodicals simply lacked relevance. As for television, which as an adult he had not watched much anyway, I thought he might find some programs to pass his time. It engaged [p. 124]him almost not at all. “I can’t stand watching one more nature program,” he said in summary.
A year earlier I had urged him to write about what was happening to him. I knew that he had raw talent, that he was a keen ironist as well as a good observer. I thought writing might be something for him to look forward to each day and that, if it engaged him intensely, it might offer some detachment. But the compulsion was not in him. It came as a somewhat disillusioning revelation that this young man with such strong literary and aesthetic interests found so little consolation in them at the last.
But there was one activity that, surprisingly, did occupy him in the final months. He purchased a short wave radio, and during the long nights when he could not sleep he listened to a variety of overseas broadcasts. In the morning he was pleased to tell me of the far-flung places and issues he had encountered. I have not fully grasped why this interested him so.
Eventually we all came to the point of acknowledging that time was short, that what remained was at most a matter of several weeks. We were kept sane by the intensified demands of nursing: food, water, medication, clothing and bedding changes, bathing, massage, conversation about practical matters, consultations with physicians and other healthcare people. As long as there are demands, one responds.
But this was inevitably the culmination of the year-long summing up process. A letter Brad wrote in November to Joyce Parsons, a friend from his school years, captures the mood. Living in Arizona, Joyce heard from friends that Brad was ill, and she wrote to him a note of concern, delicately avoiding direct mention of AIDS.
“Dear Joyce,” he responded,
Your card was, as you said, a surprise but a very nice one, near enough to my birthday to be like an unexpected present.
It’s funny that you should have written just now. I have talked with my mother many times recently about you and about how much the childhood years spent on South 9th with you (especially), [p. 125]also the friendship from high school and college, have meant to me. I have been completing a scrapbook and had cut out that wonderful picture of you at the Poky tricycle races from the old yearbook. It was a favorite of mine and deserves a place in my book. And too, I would like you and James to know that I think of your reception often. Your wedding and garden party afterward were delightful, exactly what I would have wanted had I married.
Unfortunately, this is now closed to me. I was diagnosed with AIDS in July of last year, the result of my profligate life in Los Angeles. Most likely I have been carrying the virus several years since my departure, but it came as no real surprise. In November ’85 I was admitted to the hospital with pneumocystis pneumonia (common in AIDS patients). Ten days in intensive care, subsequent recovery, a short remission of the disease, and then rapid decline. I have been living at home with my parents since my diagnosis. Things at this point are quite difficult. Although I have been lucky to have suffered less than some patients and have experienced tremendous, almost incredible, support from my family and friends, quality in my life at this point is basically nonexistent. My body endures, it seems, only to suffer, and I am at a loss to understand the usefulness of this. I hope and pray to die soon, and although I feel some ambivalence about this, I do not feel afraid but look forward to death’s tranquil peace.
I hope my telling you about this does not seem inappropriate. I tell you because I have spent much time during the past year in reflection on my life, and I find that I am delighted to have known you. You played an important part in my story, and somehow I feel that connection is not going to be broken.
As I said, it was wonderful to hear from you. I hope you and James are happy and content. So it sounds. I think of you often with affection.
Several weeks later when Brad’s ordeal ended, we were left to deal with the aftermath and to try to regain our equilibrium. I remember so vividly, now after five years, my feelings relative to his [p. 126]passing: death seemed so awesome, so outrageous, so terribly final, yet under the circumstances so welcome. Like Brad, we were ready to regard it as a blessed release for him, and no doubt for us as well. Though you would like to think your feelings are entirely selfless and focused on your loved one, in the last days when death is inevitable you anticipate the lifting of the burden. But you do not think of that when your son is lying there in the final throes of dying. I remember yet how, on returning home from the hospital that night after one o’clock, it was like coming numbly into a vast emptiness.
Following death, practical arrangements must be made, details attended to. It is not a time when one feels like seeing to them. There is (usually) a public ritual that must be gotten through, a communal process that sums up a life and allows those who remain to express their grief formally. We had pressing decisions to make relative to this process, but they did not lead to the post-mortem rituals characteristically practiced in our religious community.
When we spoke of these arrangements with Brad late in his life, he was adamant that he wanted neither a public announcement of his death nor a funeral service. That seemed sad to me, almost a denial of his existence. Perhaps he saw it also in that light and preferred it for that reason. He was still not willing to announce in his home town, even indirectly, that he was homosexual, that his life had finally come to this. At least that was the inference I drew. And when I remonstrated that we were proud of him, that we wanted his life acknowledged, and urged him to give his consent, he would not relent. “Maybe you could just have a happy wake here at home with a few friends,” he allowed finally. I am absolutely certain he did not want to have a Mormon funeral, at which in the end the last word would be pronounced by someone who would find his identity unacceptable.
Our dilemma was compounded by the fact that we had been so close-mouthed about his illness. How could we now respect Brad’s express requests and still communicate these developments to others in a suitable way? Though it was not an ideal solution, we [p. 127]decided to send a letter to relatives and friends. In all, we sent out roughly two hundred and fifty letters, as follows:
We are writing this to let you know that Brad, our eldest son, passed away on Friday, December 5. Prior to his death he asked that there be no public announcement of the fact and that there be no funeral; we intend to honor these requests. But since you are among those who care for him and for us, we want you to know something of the circumstances of a life which ended prematurely.
There were several physical conditions that contributed to Brad’s demise, all of which are traceable to an undermined immune system. He had AIDS, a fact of which he and we became aware in the summer of 1985. He had returned that June from his studies at Utah State University to assist us in the construction of a new home. As it turned out, he was not able to join in our family carpentry, but during the next year and a half, while he was living with us, he shared with us a far more significant experience, one that expanded our awareness and changed our lives.
Following an appendectomy in that first month, his condition worsened through the summer and fall. In October pneumocystis pneumonia crept on him, confirming definitively the AIDS diagnosis. Early in November he spent two weeks in the intensive care unit, where he very nearly died. But outstanding medical care and the support and prayers of friends and loved ones, together with his own renewed will to live, helped him to survive. There was then a period of remission during which he gained weight and strength and made plans for the future. He took a course at ISU during spring semester, though often he was, in fact, feeling too miserable for it; still determined, he took another course during the early summer and finished it sheerly on will power. Meanwhile, the remission had ended in April, and his suffering recommenced and steadily intensified. AIDS is indeed a formidable antagonist; he fought it to the best of his ability, courageously. In the process he learned—and we learned vicariously—what it means to have a vigorous healthy body dismantled, ounce by ounce, nerve by nerve.
[p. 128]You could not call him lucky, but he was at least more fortunate than some AIDS victims. He did not develop Kaposi Sarcoma, the skin cancer that often occurs with AIDS; though he lost the sight in one eye toward the end and experienced occasional limited paralysis and, of course, dramatic loss of weight and strength, his mind remained alert and clear virtually to the end.
The extra year granted him after his near death in November 1985 was a beneficial gift to him as well as to us. He did not fully understand the necessity of the added suffering he experienced, nor do we, but he profited from the time to sort out and evaluate much in his personal philosophy. We will not forget the conversations we had as the days and nights passed. That year encompassed a time of profound emotional and spiritual significance for all of us.
Brad’s last week was spent in the hospital after it became impossible for us to provide for his medical needs and his comfort at home. The end was not easy, but there were some periods of tranquility for him during the last several days. We were with him when he died. He had wished to be cremated, and so we helped to prepare him and to dress him in the clothing he had chosen. At that point we stood as a family around his hospital bed and thanked God for the gift of Brad’s life among us.
We are very proud of our son and of the courage and integrity with which he faced the difficult circumstances of his life. In this we refer not only to his terminal illness but also to the fact of his homosexuality, of which we have known for some eight years. Our experience during that time has taught us that society generally and organized religions in particular have much to answer for in their treatment of homosexual men and women. We earnestly pray that our own church as well as others will come to regard these people with greater tolerance, accepting in the spirit of Christian love those whom God has so created.
We said at the outset that Brad died prematurely; that is true only in a narrow sense. In the larger perspective, we perceive a completeness within the span of his twenty-eight years. He managed to live intensely, to burn brightly while he was among us. We feel his experience will be immensely beneficial for those who have known [p. 129]him and for others who will come to know indirectly what he stood for. But mostly we believe his experience will be valuable to him as he now goes on to continue his eternal progression. At the time of his death, as we contemplated the features of a face sharpened by starvation, his mother said, “He looks like an eagle, and now he is soaring beautifully.”
We will miss him greatly.
If the weeks ahead afford an opportunity, we will be glad to speak with you about Brad and our experience with him.
Sandra and Wayne Schow
Some of those who got this letter shared it with others. In an irregular fashion, the word got around. And then, quite suddenly, we were free to talk about it all—mostly. After virtually hiding Brad’s illness for eighteen months, his homosexuality for nearly eight years, we had them out in the open. It was as liberating as if a great blockage were removed and real honesty were finally possible. How strange but how good that felt. What a pity that it took us so long.
I say “mostly” free to talk about it. At least there were now no practical dangers to Brad in the revelation. And the ice was surely broken in terms of the knowledge becoming public. The only remaining barriers to openness with others were those vestiges of fear, shame, or inertia within ourselves which sometimes were unpredictably manifested. One ironic example remains fixed in my mind. About three weeks after Brad’s death, Roger encountered at the mall just after Christmas two sisters whom he and Brad had known well in high school. He had not seen them for several years. After some conversation, one of them asked: “How’s Brad?” Clearly, she knew nothing of his illness.
“Is he home for Christmas?”
“Yes,” Roger replied, “this Christmas he’s home.” End of topic.
[p. 130]”And you left it at that!” exclaimed his mother incredulously when Roger told us that evening about the encounter. “Why didn’t you say what’s happened, why didn’t you explain yourself?”
“I don’t exactly know,” he said. “On one level my answers were true, and I didn’t feel like going into it just then.”
The next day he called Margaret and cleared up the dramatic irony in their previous conversation, doubtless with ambivalent feelings. Vestiges. We all showed them at times. I think they lingered somewhat longer in our sons than for Sandra and me, but for them too it grew easier in time to speak with others of Brad’s death and its causes.
How ironic it is that AIDS, which in the United States has found its most frequent target in gay men, has done more to advance understanding of homosexuality than virtually any other influence. Not because AIDS directly explains homosexuality—its causes or its particular ethos—but simply because for the general public in the United States, AIDS made confrontation with homosexuality unavoidable. By several means, the virus has become the most powerful closet door opener in modern history.
On one level, it made the public aware that homosexual people are to be found all around us, often where we least expect them to be, that they include people whose lives and achievements we have admired. Highly publicized cases have certainly had an impact. But for most of us AIDS illustrates these realizations nearer to home. Today there are but few who do not know someone—a family member, a friend, or a colleague—who is HIV positive, has AIDS, or has succumbed as a result of it. And where this occurs, it most often comes with a revelation of homosexual activity as the cause.
Public dialogue about homosexuality is commonplace today. What is said in the media and elsewhere would have been unthinkable a decade ago. People talk about real gay men and lesbians rather than stereotypes, reevaluating the premises on which their intolerance was based. Most knowledgeable men and women now recognize that there is not just one homosexual lifestyle but a variety of [p. 131]lifestyles—like the variety found among heterosexuals. Public exposure has brought home the realization that homosexual lives, like heterosexual lives, ought to be judged on their merits, and that gay and lesbian lives can be richly rewarding, beneficial to society as well as to individuals.
Paradoxically, the world that was for us not long ago so far out of joint begins now to show some evidence of better alignment as a result of what has happened. I wish we had not lost Brad. It seems so pointless and unjust. But there is some satisfaction in knowing that his shortened life contributed to this adjustment of cultural consciousness, this opportunity to reassess our attitudes and values. His case is not one of the famous examples, to be sure, but among them all he is the person who influenced one particular circle of family members and friends. Through them the rings of that influence continue to emanate outward as when a stone is thrown into water.