My family does not cry much. Especially not when other people are around. On that rainy spring day in 1989, my aunt quietly choked back her tears while my uncle held onto her silently. My cousin Barbara trembled when she dropped a flower into her brother Robert’s grave. My mother made barely a sound as she dabbed her cheeks.
It was Robert’s girlfriend whose sobs grew louder as the burial continued, who threw herself on the ground, who would not leave even after the ceremony ended and the rain turned into a downpour. We all waited in our cars for five minutes, then 10 minutes, until another uncle convinced her to come back to the house with us.
At 26, Robert had died of a fungal infection in his brain. His vision and his hearing had faded away, and he seemed not to recognize his family in the last hours before he slipped into a coma. But the disease progressed quickly, and we were all thankful for that. My aunt and uncle initially had found it hard to accept Robert’s refusal to be treated, but by then they understood its wisdom.
Why go through a painful treatment with an uncertain chance of success only to suffer and die from the next disease to come along?
The real problem had not really been mentioned much in our family. “Robert doesn’t look very well,” my mother would tell me on the phone sometimes. Or, she would say, “Aunt Theresa and Uncle John are worried about him.” Most troubling, that the T-cell count in his immune system had dropped very low. The term is understood when hemophilia runs in your family.
Only when we were walking out of church from the funeral Mass did my mother say it directly: “Robert died of AIDS, you know.” She spoke the words just before she told me that my brother, Jim, had tested HIV positive a month earlier.
So at the graveside, it was difficult to tell whether the tears I was holding inside myself were more for my departed cousin or my living brother. Mourning for one, I could not help but start to mourn the other. The whole funeral began to feel like a preview of the next one, and I wondered how long it would be in coming.
My parents at that moment were thinking similar thoughts, wondering how long Jim would have to live, how much suffering he might have to bear. Grief at an AIDS funeral can take on a strange shape; it lacks a certain finality. The sense of loss for one person we love pours into anxiety for another.
Hemophiliacs, in particular, know the effects of this epidemic. They have experienced AIDS in a way unlike any other group. Proportionate to their small numbers, the nation’s approximately 20,000 hemophiliacs have suffered unmatched casualties. An estimated 50 to 60 percent of all hemophiliacs were infected by 1985, the year heat treatment to kill the HIV virus that causes AIDS vastly improved the safety of blood products they use, according to the National Hemophilia Foundation.
Hemophiliacs inherit a condition that deprives them of one of the proteins that makes blood clot. Except in rare cases, the condition only affects men. The only way for them to avoid serious, even life-threatening injuries is to inject concentrates of the missing protein, made from donated blood.
Robert and Jim took the blood concentrates twice a week, every week. To produce the concentrates economically, pharmaceutical companies make them in large batches, mixing together blood from many donors and then separating out the clotting factor. A hemophiliac would, in many cases, be exposed to blood from well over 100,000 donors in a year, according to the Hemophilia Foundation.
That number grew perilous for my brother and my cousin as people started dying of AIDS. Odds were that a hemophiliac eventually would receive blood from someone with the HIV virus. And sharing blood is the surest way to transmit the disease, far more so than sex.
Some 10,000 of the hemophiliacs still living today are believed to have the AIDS virus; more than 1,700 already have died. Few of the infected boys and men, if any, are expected to survive the decade.
My family is fairly typical of those with hemophilia, a genetic defect that is passed from mother to son. Women carry the gene, almost always without any physical effect, as do my mother and her sister, Theresa. Each son of a carrier has a 50-50 chance of receiving the gene. Robert and Joey, my aunt’s only two sons, were born hemophiliacs. So was my brother Jim. I was the only male in the two families born free of it.
Joey was the oldest of our generation. He died at age 9, after hitting his head one night while bouncing on the bed with Robert. The hemorrhaging in Joey’s brain went undetected at the hospital emergency room that night. He was released and went home to bed. The next morning, he could not be awakened.
Jim and Robert grew up knowing they, like Joey, could die suddenly. They suffered injuries constantly. Their legs and arms were almost always bruised; minor sprains swelled painfully from the blood that would pour into their joints, pressing against bone and cartilage.
Robert, in some ways, seemed able to adjust his life to physical fragility. He was quiet as a child. Shy, really. Never interested in team sports, he preferred less competitive activities like badminton. He liked board games and introduced Jim and me to chess, Chinese checkers and Risk during our visits out East to his family’s home.
His usually cautious parents once gave Robert permission to go horseback riding. He decided against it. Too much risk of an injury, he said.
Jim, however, went horseback riding over the objections of Mom and Dad. He would come home in pain, having fallen from his horse, and spend days in bed. It didn’t matter. He went riding again.
Jim never did seem to achieve a peaceful coexistence with disability. He was almost incapable of accepting defeats. Constraints of any kind frustrated him, and he seemed determined to test the limitations of hemophilia. Flouting the risk of injuries, he wanted to prove himself in athletics. He played Little League baseball, pickup basketball games and made the varsity tennis team his freshman year in high school. He even wanted to try out for the high school football team.
Hemophilia, as always, had a way of intruding. Jim was the star of his Little League team-he pitched and batted cleanup-until one day while rounding the bases, he twisted his ankle so severely he was on crutches for weeks. My parents worried he might be crippled and put an end to the baseball. When his high school tennis team won a place in the state tournament, he sprained his ankle before the match. He couldn’t play.
His ankles were what most often failed him, the joints having been weakened from repeated injuries. Taping his ankles in the locker room before high school tennis practice, he sometimes would let loose a string of expletives, directed at the joints he could no longer depend on by the time he was a teenager.
By the time Jim was taping his ankles for tennis practice, word of AIDS had reached Urbana. It was the early ’80s-Jim was Class of 1983 at Urbana High-and news accounts were already including hemophiliacs among the groups at risk.
But for all the horrifying details we heard, the disease still seemed almost as remote as the San Francisco datelines on the newspaper stories. Nobody we knew had AIDS. And the only way to reduce the risk of AIDS was to stop taking the clotting factor, which would leave Jim even more prone to injuries.
So we went on as before, and the disease seemed to affect us only as a nagging worry, one we placed in the backs of our minds along with so many other unlikely possibilities. My father, a nuclear scientist, continued to teach his classes at the University of Illinois; as always, he would become preoccupied with his research, habitually arriving home late for dinner. My mother was readjusting to life in the work force, returning to social work after more than a decade and a half devoted full time to raising her children.
Jim was a good-looking teenager; his straight blond hair had turned into curls, and his frame was muscular. There were other things in those days that caught his attention: for a while, it was a certain member of the girls’ tennis team.
But shortly after his final tennis season at Urbana High-sometime in the late summer or early fall of 1983-Jim unknowingly began injecting himself with the HIV virus. Unlike most hemophiliac AIDS cases, the specific source of my brother’s contaminated blood was identifiable.
My parents found out through a phone call from a pharmacist. A batch of clotting factor we had purchased was being recalled by the producer; one of the donors had died of AIDS. When my mother checked the freezer, she found only three of the 20 vials from the batch. Jim had used the rest.
My father was outraged at the pharmaceutical company. The blood had been donated only a few months earlier, obviously taken shortly before the donor’s death. There was no test for HIV at the time, but blood centers were supposed to be checking donors for physical symptoms of AIDS. Surely, Dad thought, the donor must have shown some sign he had AIDS by that point. How could the blood lab be so sloppy?
Initially, my father wanted to sue the manufacturer. But in time he changed his mind. Too many lawsuits might push the company out of the business of producing the concentrate, he reasoned. And then what would happen to Robert and Jim?
There also was a more pressing matter: My parents by then suspected Jim had a drug problem. They had been less worried than annoyed when my brother had been caught a few times over the years smoking marijuana. But something had happened a few weeks before the pharmacist’s phone call that made them worry a great deal.
Jim had left for college in August, two months before the pharmacist’s call, planning to study engineering at the University of Wisconsin in Madison. He had not been gone long, however, before my parents began to think he sounded strange on the telephone. When they made an impromptu weekend visit, his responses did not fit into conversations. A test at the university hospital showed he had been smoking large amounts of marijuana. Also, there were traces of PCP, used at the time by some drug dealers as a cheap way of cutting marijuana.
His behavior deteriorated by the time my parents began driving him home to Urbana. In the car, he didn’t seem to recognize them; he turned to my mother and asked what high school she went to. At home the next day, he woke up with an expression of anguish on his face, as if he were in terrible pain. He ran full speed around the house again and again, then stopped and began talking to the trees. The only thing my parents could think of was to take him to the psychiatric ward at a local hospital, where he was placed in the drug-abuse program.
He was still in the hospital, going through the drug program, when my parents received the phone call about the contaminated blood products. Jim had enough to handle as it was, my parents decided. Being told about the AIDS exposure might be too much, and nothing could be done anyway. So my father and mother kept it a secret.
Not a day went by without my parents wondering whether withholding the information from Jim was the right thing to do. But they always decided nothing constructive would be accomplished by telling him. Nor did they see any point in telling anyone else; it would only worry friends and family, or worse yet, perhaps change the way they treated Jim. The secret lasted 5 1/2 years.
Those years were tumultuous. It became apparent that Jim had deeper psychological problems than simple abuse of drugs and alcohol. He would go through periods of bizarre behavior and periods of normalcy. He could manage a load of courses at a community college for an entire semester. Then there were times when he disappeared for weeks on end, only to turn up living on the streets of distant cities. One time, he turned up in a mission near Comiskey Park, another time in an abandoned building in North Carolina. There were several suicide attempts. We hid all the medicine, and we got rid of all but a few sharp knives, which we kept carefully concealed.
Slowly, with many discouraging setbacks, he improved. Although the psychiatrists he saw never did come up with a formal diagnosis for his mental problems, medication for schizophrenia seemed to help a little. By 1989, a psychiatrist put him on lithium, used to treat manic depression, and his episodes of mental sickness abated. He was able to stay free of marijuana and liquor without slipping.
Even so, Jim had not been restored to his former self. The medication and the years of drug use slowed a once-quick wit. His athletic physique had become bloated. Instead of preparing for a career in engineering, he was working occasional odd jobs, sometimes assisting a local sculptor, sometimes loading moving vans. It still seemed necessary to keep the level of stress in his life low. Yet, he had achieved a measure of serenity. He had become one of the more active members of the local Narcotics Anonymous chapter. And he still played a good game of tennis.
All through those years, amid all the other troubles, my father’s first prayer every night would be that Jim would not get AIDS. Perhaps the virus might not have made it into those 17 vials of clotting factor. Perhaps the exposure might not have infected Jim; after all, not everyone who comes into contact with the virus gets AIDS. Or perhaps it would be a long time before he got sick, long enough that there would be a cure.
God listens to prayers, and my father always has been a great believer in their power. At least, he prayed, let Jim live as long and as happy a life as possible.
My father fought his natural instincts as a scientist to find the answer with an AIDS test. It seemed that actually testing Jim for HIV would do more harm than good. There was no treatment, and a HIV-positive diagnosis might be cause for discrimination by insurance companies or employers. We had read of at least one family whose house was burned when neighbors found out their hemophiliac children had been infected.
In the 1980s there was a hysteria in the country about AIDS. States passed laws requiring doctors to report the names of HIV-positive patients. If the mood worsened, my parents wondered, what might happen to the people whose names were on the state lists? The thought frightened both Mom and Dad and they were determined not to take chances with one of their own children in such a climate.
Neither my sister, Denise, living close by, nor I, on my visits home from newspaper jobs in distant cities, thought much about the extra hours of sleep Jim started to need late in the ’80s nor about the chest colds that lingered longer. Psychiatric medication is powerful stuff-Jim sometimes said he could feel it slowing down his mind-and the years of drinking and drug use must have taken their toll.
The increasingly frequent bouts of nausea and loss of energy in my cousin Robert, however, were more worrisome. There was no convenient explanation: He should, by all logic, have been completely well. Since high school, Robert had strictly followed a healthy diet of organic foods, no meat and vitamin supplements every day. Even as a teenager, he would not smoke or drink.
Then a close family friend, a hemophiliac we all had known since we were children, died of AIDS. Continuing to work despite his illnesses, he collapsed one day at his office, slipped into a coma and never regained consciousness.
Now there was a death, someone we knew, and it added to all our worries. But it particularly affected Robert. My cousin had never before had much to say about the possibility he would contract the disease, except that the right diet might provide a measure of protection. On the day of the wake, Robert’s frustration suddenly erupted into bitterness. He must have felt alone, singled out unfairly, and he turned to my mother. “I wish everybody got AIDS,” he told her.
The anger did not show again, but he must have been frightened. Robert soon decided to have a test taken of his T-cells. The cells are the components of the immune system the virus destroys, and his T-cell count registered very low: 160 on a test with a normal reading of 1,000 to 1,200. The implication was he had AIDS and probably would not live much longer. He never did take an HIV test.
Robert was in college at the time. He had spent years as a school bus driver before he decided to return to school for his degree in computer science. He still wanted to get that degree. The dispiriting test result did not stop him from staying up into the early hours of the morning completing class projects on the computer my uncle had set up in the corner of their living room.
But a year later, during exam week, Robert was lying in a hospital bed with the brain infection, his first serious AIDS-related illness. He stayed up most of the night, talking on the phone with a few friends, letting them know he was going to die. His voice on the phone was slurred, and his head periodically would slump to the side. He already was losing control of his body.
The next morning was sunny, the beginning of a warm spring day. It was a time to be outdoors, the type of day Robert had often spent walking with his girlfriend through nature preserves. He asked to go home so he could spend his remaining time in a chair in the back yard, his feet on the grass that once had been his badminton court and his gaze on the weeds invading the vegetable garden he had left unplanted that spring.
Robert went into convulsions after he signed the discharge papers, while he was being helped into a wheelchair. He never did leave the hospital room, although his senses soon retreated from it. Unseeing and unhearing, he ceased to understand his surroundings; his family ceased to understand his words.
My aunt was sitting by his side the following morning when he died.
