A Rough Day

My client Frank died today. He is survived by a wife, a teenaged son, a host of extended family members, co-workers, and friends, and 1 million others who live with HIV and AIDS in the United States today.
This death is particularly sad for many reasons. First, 40 year old men are not supposed to die. They are certainly not supposed to die in nursing homes, unable to feed themselves or to talk. Secondly, his young family is already struggling to cope with the loss of their beloved father, husband, and breadwinner and their rapid fall from the upper middle class into near poverty. Finally, it was a preventable death. Frank never saw a doctor, had bloodwork done, or took a single medication before falling suddenly, ultimately fatally ill just 2 months ago.
I have about 80 clients at a time, most of them have been living with HIV for many years. Some are more recently diagnosed, but the average length of life with HIV on my caseload is about 10 years. In 1996, the anti-retroviral medications came out and changed the way my clients, and all HIV+ people live and die. With regular medical care, and medications when necessary, life expectancy for positive people is indefinite. Frank’s wife recognized this. Both of them were diagnosed after a routine blood test for a life insurance policy. When it came back positive on both, they panicked, hid the letter that stated their positive result in their car, and drove 40 miles from their suburban home to my office to ask someone who knew more about HIV than they did how long they would live. They found me, and I sat with them 3 years ago, both of them shellshocked and humiliated, sure that they would die before their then-preteen child grew up. They had no idea how HIV entered their world. They both stated that they’d been faithful to each other, with only 2 other sex partners total and both of those before their marriage a decade and a half earlier. Neither claimed to have used drugs or had any transfusions or needle sticks. We never determined their risk factor, but does it really matter in the grand scheme of life? To some, who want to determine guilt or innocence in this epidemic, it does matter. But in this case, this young couple wanted information about their future. Their past was not mine to question or judge.
I told them about HIV, how it progresses, what they might expect if they went to a doctor. I told them about the medications, about how some people don’t need or want them but for some they are the answer to continuing a productive life. We talked about disclosure and both of them were adamant that no one know their status. They had their son tested, he was negative and his parents opted not to tell him about his their new crisis. They told me they felt dirty, damaged, and that if their friends and family knew then surely they would be abandoned. This couple made too much money to qualify for any of the services that my agency offers, but I made sure they knew that they could call at any time with any questions or issues or even just to talk. Frank was quiet, his nature and also this intrusion upon his very personal life by first a life insurance company, and now a strange social worker unwelcome. His wife worked up the nerve to see a doctor one year later. She began meds immediately. Frank never did. He collapsed at work 2 months ago, after days of debilitating headaches and double vision.
His brain was ravaged by an unusual opportunistic infection. His CD4 was 8, while a healthy immune system has 600-1200. He never walked or talked again, though his wife said he was conscious behind his closed eyes and that he communicated with her.
He died an AIDS death straight out of 1983. Uncomfortable, rapid, and away from the comforts of home. Few knew his HIV status. His obit will likely read “unexpectedly” and a possible reference to a brain tumor, but nothing about HIV.
Frank’s wife is left to pick up the pieces and decide how she will live. She will be told over and over again that Frank’s death is not her future. I’m not sure she will believe it. Right now, with the powerful meds, her immune system is as strong as any other 36-year-old woman’s. Her husband did not have to die as he did, and she has to live with that anger at him as much as with her own illness.
Many believe that the mere existence of such successful medication regimens encourages promiscuity and wreckless abandon in HIV prevention. If you can take a pill later, why use a clean needle or a condom now? It is, of course, more complicated than that. Anyone on an HIV med regimen can talk a blue streak about the lipodystrophy, the diarrhea, stomach pains, weight loss and gain, the loss of sex drive and the meticulous schedule one with HIV must keep of eating, sleeping, water consumption, and bathroom time when they start a med regimen. It’s no picnic, but it is survival.
If Frank’s wife chooses to stay in care and take her meds, she is highly likely to see her son grow up, to get older and to experience whatever hurdles aging and family history have in store for her. She might get diabetes, cancer, or heart disease. She might be in an accident, she could die of any of these or she might die peacefully in her sleep at 85, as we all should hope to do when we meet that ineveitable conclusion of a life well lived. She will probably not die of AIDS-related causes.
Frank chose denial, and it killed him. This was his choice and it saddens me, though compared to the heartbreak of his wife and son it is nothing.

(The story is true, some identifying details are altered)

The beta that keeps me company here in my cube at work also died today. It is the anniversary of the Oklahoma City bombing and Waco, and tomorrow the anniversary of Columbine.