Remembering Brad: On the Loss of a Son to AIDS (18 page)

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 repeated. 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 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 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 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 substitute 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 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 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 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.