Jim did not come to the funeral. Only a month earlier, he had found out he was HIV positive when the staff at a hospital decided to give him an AIDS test without asking permission. Jim had accepted the test’s result calmly, almost as if it were something he had assumed all along.
Despite Jim’s tranquil reaction to his own infection, my parents thought seeing Robert’s casket would be too stressful for him. Jim must have been uneasy about it also; when my parents suggested he skip the funeral, he did not disagree. So Jim stayed home with Denise, my sister, in Charlottesville, Va., where we had moved a few years earlier so my father could take a job teaching at the University of Virginia. Denise did her best to keep Jim’s spirits up with movies in the evenings and games of tennis in the afternoons.
On the day of Robert’s funeral, she planned a dinner with a few of Jim’s favorite foods: eggplant parmigiana, zucchini, fried mushrooms. The vegetables were cooking in a deep fryer when the oil ignited.
The smoke in the kitchen was becoming dense, and Denise was failing in her attempts to extinguish the fire with baking soda at the moment my parents called. Just back at my aunt and uncle’s house from the cemetery, they wanted to check on Jim.
My father and mother and I sat calmly around a dining-room table hundreds of miles away while Denise fought the fire on the other end of the line. My father offered careful directions: a plate that might smother the flames, then a blanket, ultimately a retreat from the house.
When the fire was extinguished, the kitchen had been all but destroyed, the family room damaged and the rest of the house penetrated by smoke.
I wondered how many parents could sit across the table so calmly. But the years of crises-trips to the emergency room with a hemophiliac son, later the psychiatric episodes, then the beginnings of AIDS-had enabled them to do just that. It had also given them a true sense of the important things in life. Jim and Denise are OK, my mother said, before she went back to comforting her sister.
The next time I saw my brother, several months later, my eyes immediately fell to the side of his face. A white, scaly growth-a fungus of some sort-covered part of his cheek. His breathing was heavy, his lungs laboring from the congestion of a lengthy chest cold.
He had lost a lot of his energy; all summer long he had been sleeping 12 hours a night. That week, however, he managed to keep up with everybody. The occasion was a family wedding, and there were parties and dinners all week.
The wedding was on his birthday, Aug. 19, and the next night we all went out to a restaurant to celebrate his turning 24. He opened presents, laughed and ate. Occasionally, he would get up to go to the bathroom. My mother later found out he was throwing up from nausea.
My parents in some ways look back fondly on that time. After so many years of psychological episodes, the atmosphere was peaceful at home. The house we had moved to in Virginia is in the country, miles outside of town, on a slope in the foothills of the Blue Ridge Mountains. The repairs from the fire were finished by the end of the summer, and in the autumn, my mother and brother would sometimes sit together on the front porch. To one side, they could see horses in a pasture below. The sun would set on the other, through the trees, behind a pond.
Jim no longer worked or went to school. He would make ice cream for dessert and videotape television shows for my father. He and my mother became big fans of the University of Virginia women’s basketball team, attending nearly every home game together that winter. He didn’t complain about his nausea or the recurring diarrhea.
Much of his remaining energy he devoted to meetings: a support group for lithium patients, another one for recovering alcoholics and the Narcotics Anonymous chapter. He had always been most comfortable in the more youthful NA and that fall recruited two people he met at another meeting into his NA group: John, a man who had once mutilated his own hand while drunk; and Andy, a grossly overweight blind man whose alcoholic parents would harass him into drinking. Jim would go to an NA meeting even when he was ill so that Andy would be sure to have a ride.
Late in February he threw a party for one of the NA members, a man who had just gone five years free of drugs. The event was a big success; there was a lot of laughter in the house that evening and cheers when Jim presented the guest of honor with an “anniversary” cake. People played pool, Ping-Pong and Pictionary, and one guest brought his guitar. My mother and father danced to the music in the foyer.
Jim had planned a weeklong trip back to the Midwest early in April. By the time he was to leave, he did not seem well, and my mother suggested he put off his trip. No, Jim said, he wanted to visit his friends while he could. “You never know what might happen.”
My mother’s voice sounded sad as I played it back on the answering machine in Houston, Tex. I had just come home from work, and I called back right away. Jim was dead, she told me. He died earlier in the day, April 19, 1990.
I had never thought he would go so quickly. In the end, I had expected we would all be together, gathered around him, and there would be plenty of time to say goodbye. But his death wound up being as sudden as if he had been in a car crash. And I was equally unprepared.
I got on a plane the next morning and headed for Virginia, staring out the window the whole way there.
A week after Jim had returned from the Midwestern trip, he had been hospitalized with his first case of pneumonia. At the time, the doctor did not seem to think the case was too serious and even left the decision to hospitalize Jim up to my parents. His condition started to improve, and the doctor said he would soon be ready to come home.
My parents were eating breakfast when they received the call that Jim had gone into cardiac arrest. By the time they reached the hospital, the staff was wheeling carts of equipment out of his room. Nobody had been there when he died.
My father, I think, took some solace from something that one of his fellow faculty members, a Pakistani, told him. The moment of Jim’s death was on the second day of the sacred month Ramadan, and Muslims consider those who die on that day especially blessed.
Both my parents seemed to need to find some purpose in Jim’s suffering. God could not let something so terrible happen without at least a little good coming from it.
My mother had been closest to Jim in the final years of his life; she quit her job as a social worker when we moved to Virginia, partially to take care of him. She drew her comfort from a spiritual lesson she attached to those years she spent with him through the drug use, the mental illness and the AIDS. He could have become completely bitter, she said, but instead, on the whole, maintained his cheer.
The suffering of a son can contain in it a small gift, she told one of the parish priests while he was comforting her. Jim did have real joy in his life, joy he pursued determinedly, despite a lifetime of hurts, both large and small. If he could not do some things, he took pleasure in what he could manage, even when it was just watching basketball games.
“He was able to have the good things in life: have relationships with us, relationships with other people and have empathy for other people’s suffering,” she said. “He taught me that I should not be a complainer, that I should not be self-centered, and that I should be able to enjoy things. . . . He didn’t remain passive, even when he was sickest and at his most tired.”
The night before the funeral, Dad was up past 4 a.m. working on a note to the priest. Maybe some good would come from Jim’s death, he thought, if the priest spoke at the funeral about compassion for people with AIDS.
Few of the university faculty members, parishioners and other friends of ours at the service knew Jim had AIDS. Telling them might make a difference. So might a sermon from the priest, asking them to show charity toward those with AIDS, regardless of the disease’s origin. Our pastor agreed. The theme became part of Jim’s eulogy.
After the funeral, Jim was cremated. It was his wish, a wish that is now accepted by the Catholic Church. Jim’s NA group came with our family to the private cremation ceremony. And we all said our final goodbye together.
But for my father, there was something about the finality of claiming Jim’s ashes that he could not bear. He kept on delaying that moment. The funeral home was on the road into town. My father passed it twice a day, on his way to work and going home. Each time he drove by, he thought about picking up Jim’s remains. Each time, he put it off another day.
Six months passed, and he began to worry the ashes somehow would be discarded as unwanted. Finally, he stopped the car and walked inside the building. The ashes are in my parents’ bedroom, still inside the cardboard container Dad received from the mortuary. Mom and Dad haven’t decided what to do with Jim’s remains.
The day after the funeral, Denise, my sister, went back to her apartment. She was a 20-year-old senior at the University of Virginia and needed to prepare for her last exams. But the events overwhelmed her-Robert dead of AIDS, and now Jim. She began to wonder about the children she might have. Would they also be dying of AIDS?
She always had assumed she carried the hemophilia gene. Each daughter of a carrier has a 50-50 chance of receiving the gene, just as the sons do. Except in Denise, as with almost any woman, the gene would spare her only to be passed on to her own sons. She bruised easily-a sign, we all assumed, of the defective gene.
It had never worried her before. The few times she thought about it, she accepted the probability as something she could live with. She would tell a potential husband before they married, but she herself felt able to handle a child easily injured. Our family had managed; so would hers.
But injured ankles, weakened knees and a bruised body are one thing; slow death by a progression of diseases is another. Denise did not know if she could bear to witness it again in a little boy of her own. Heat treatment and AIDS tests now make the blood supply relatively safe, but she knew those precautions would never lift the anxiety from her mind. A child with hemophilia would use countless units of blood through the clotting factor, and he could be infected by just one mistake.
For the first time, she began to consider the possibility that she simply would not have children. Growing up, falling in love and having children had always seemed to go together. But was it really necessary to have children to be happy?
The question was still on Denise’s mind two years later when Barbara, Robert’s sister, decided to take a DNA test to find out whether she carried the gene. Some of the same thoughts had, naturally, occurred to our cousin. Denise and Barbara took the test together last summer. The 50-50 odds were reflected in the results. Denise’s were negative; she does not carry hemophilia. Barbara’s results were positive.
Barbara, 26, is now uncertain whether she will have children. She sometimes talks about adoption but says any decisions can wait until she is married.
So much depends on a single strand of DNA. Even odds, and I would not be alive now at age 28. If I had inherited the gene, I am certain my fate would have been the same as my cousin and my brother: suffering, nausea, parasitic infections and an early death.
It’s a thought I find myself consciously relying on at times. When I’m frustrated or when I’ve failed or when I’m depressed, it puts things into perspective. Trouble with a girlfriend, problems at work are not much compared to the consequences of the wrong gene. I do not forget that I was the lucky one.
The dreams I began to have of Jim started before he died, as far back as Robert’s funeral. My brother would be sick, suffering, sometimes blind. Later, the white, scaly fungus I had seen on his cheek would be growing over his face.
The dreams would include some potential cure, something doctors needed just a little more time to finish. In the dreams, Jim would be getting worse while time continued to pass. How much time would it take for a treatment, and how much longer would he last?
The strange thing was that the same dreams continued for more than a year after he died. And in the morning, in that long gray dawn between sleep and full consciousness, I would forget that he no longer was alive, that there no longer was a reason for the worry inside me. Then, once my mind cleared, it would come back: He already had died.
Those dreams had stopped-and so had my interest in the recurring newspaper accounts of AIDS treatments-by the time Denise first told me of her worries. The possibility Denise might go without children was a blow. One day, I had always assumed, my children would play with cousins, just as I had. That, too, seemed in jeopardy.
Denise’s fears, although they proved unfounded, made me realize AIDS has not simply run its course through our lives, taking the ones at risk and passing from our family. Its presence will continue, on the periphery of our lives and in the center. Barbara will worry about children as yet unborn. There will be more news reports of the disease in men and women to whom we have given our affection from a distance.
I remember when I heard Magic Johnson was HIV positive; he had been Jim’s favorite basketball player. Arthur Ashe,m who died Feb. 6, had spoken at Denise’s college graduation; my father liked the speech so much he wrote away for a copy.
It is only a matter of time, I know, before AIDS again touches the life of someone close to me. That’s nothing more than mathematical probabilities at work. A friend, or perhaps a colleague from my office, will start to tire more easily, maybe begin to lose weight. They will get sick more often. Gradually, the reason will dawn on me-or be whispered to me.
AIDS will bring more pain, more tears to hold inside. Whatever it does, though, it has already delivered its deepest wound to my family. The wound still aches, but we have drawn strength from it.
It would be wrong to say we won-no one wins against AIDS-but we were not defeated. That counts for something.
