June 5, 2001
The Heavy Hand of AIDS
by MARY MCNAMARA from the LOS ANGELES TIMES
Even though the disease is now considered 'manageable', it continues to be a constant struggle for one man still in search of a treatment that would improve his life.
When my friend Sam lists the medications he is on, it sounds as if he is reciting the periodic table of the elements. When away from home, he used to carry all his meds in one big bottle. At various times of the day, he would spill them out and sort through them as if they were jellybeans--two red, one blue, one yellow--but that became too complicated and now he has an elaborate pill tray, divided into little compartments by days and times, a larger version of those favored by older folks. Sam is 33.
Sam is not his real name because the world is not perfect, not always supportive of people with AIDS, even after 20 years. I have known Sam for seven years; he has been sick for nine. He has only been hospitalized three times--twice for pneumonia and once for kidney failure caused by the drugs treating the pneumonia. Three years ago, his doctor told him that, on paper at least, he should be dead by now. Two years ago, after prescribing everything that was available, his doctor looked at him accusingly. "You're not responding to anything," she said. "It is very frustrating for me."
A month after that, Sam got a new doctor.
His T-cells, which have slipped at times into the teens, and his viral load, which is in the hundreds of thousands, have improved recently but they are not even close to approaching normal. (A normal T-cell count is between 500 and 1,600.) Many of the new drug combinations do not work for him--Sam is allergic or resistant to many of the "best" treatments. Currently, he is on a new cocktail, and we're all keeping our fingers crossed because the next step is called "salvage therapy"--he will try small increments of every drug his doctor can think of--and none of us, especially Sam, wants that to happen. Most AIDS drugs have side effects; Sam has experienced nausea, diarrhea, dizziness, bloating, wasting, hives. He has tasted metal for weeks and lost his sense of taste completely. He has gained weight, lost weight, fought the potbelly that is part of a larger problem called lipodystrophy--a mis-distribution of fat cells that affects many long-term AIDS patients. It drives Sam crazy--he's been to several seminars on how to control it. "Diet and exercise," he says, rolling his eyes. "Like I want to hear that. Give me a pill. I've got pills for everything else, for heaven's sake."
He actually does have a pill or two for the lipodystrophy, which, besides being annoying can cause diabetes and high cholesterol. This means he is taking drugs to fight the side effects of other drugs, a concept that makes him laugh when he thinks of it.
He is also plagued by AIDS-related viral warts on his fingers that must be lasered off regularly and painfully. His fingernails have been cracked and discolored in the process, and his fingertips are often swathed in gauze and Band-Aids, sometimes making it difficult to drive, impossible to type. When Sam sees one of those pharmaceutical ads so often found in gay publications or on billboards--the ones full of buff, tan young men purportedly living with HIV--he arches an eyebrow and holds up his raw, scarred hands. "They should take a picture of these, slap it up on Sunset," he says.
In a way, it has become harder to be a person with AIDS, especially if you are one of the 25% who are not responding miraculously to the new drugs. Sam has felt isolated even in AIDS support groups where everyone else has imperceptible viral loads and the conversation was about getting off disability and back into the workplace. Sam has never been on disability and continues to work--but he is still more concerned with managing the disease, with finding perhaps a new course of medications than with moving on. It's frustrating, he says, to hear everyone talk about HIV rather than AIDS, discuss it as if there were no longer cause for immediate concern.
Because a crisis, by definition, is short-lived and dramatic, the AIDS crisis is over. Unless, of course, you have it. Or someone you love has it. Then the swollen glands accompanied by a 104-degree fever, the sudden wan look, the labored breathing, still feel very much like a crisis.
People continue to die from AIDS--millions in Africa and 16,000 in the U.S. just last year. An editor of the gay newspaper Frontiers died just last month, HBO's presentation of "Wit" was dedicated to Derek Anson Jones, the play's original director, who died last year. Yet AIDS and HIV are increasingly portrayed as "a chronic condition," "a manageable disease." This may, in part, explain the recently rising transmission rates. Young people believe themselves immortal as a rule--a chronic condition is not going to worry them much.
"Anyone who thinks this is manageable should come talk to me," Sam says.
That's as close as he's ever gotten to complaining about his disease. At least to me. I am sure he does to his partner, to his therapist, to God, but I have never heard him speak resentfully or with anything like self-pity or bitterness. I have sat next to him in the hospital when the nurse ignored his sweat-soaked sheets and a doctor kept trying to put him on a drug to which he is hideously allergic. Oh, right, this man would say, you told me that.
I have watched the face of an emergency-room doctor change when Sam told him he has AIDS. And how were you infected, that doctor asked, as if that mattered. It took Sam years to tell some members of his family about his condition because he was afraid that the tenuous ties they had would snap.
Wrestling With the Ups and Downs of the Disease
There have been times when Sam has been tired, months when he has been tired. There have been times when he hasn't been able to muster the energy to be aggressive about his treatments, about getting into test programs. There have been times when he didn't take all of his meds all of the time because he just couldn't stand to swallow another handful of pills or face another painful hour in the bathroom.
He has had bad times, when those who loved him watched helplessly as his strength waned, as colds hung on for months, as the drugs seemed to be doing way more harm than good, as he grew listless and depressed. Is this it, we would wonder, is this how it works now? Not a big dramatic illness, but death by degrees? And then he would rally. It was rarely the drugs, though sometimes they helped for a while. But if Sam's immune system is compromised, his spirit is not. There are times when many of us forget--sometimes for months at a time--that Sam lives with a fatal disease.
When Sam joined a support group, he discovered that he was not the only person to feel angry and slightly ashamed to have contracted the disease after "safe sex" became a public priority. Infection dates have become a bit of an issue these days. Even within the gay community, there is some judgment attached to when one became infected. Before the late '80s, OK; in the '90s, you should have known better. AIDS fund-raisers say they encounter the same kind of attitude: that because AIDS is a preventable disease, a certain amount of personal responsibility is required to fight it, and money can't buy personal responsibility.
Sam thinks he should have known better, even though he didn't--because even in the early '90s, there was confusion and misinformation. Studies proving that HIV can be transmitted through oral sex without the presence of abrasions or cuts were published just a year ago.
The problem with a sexually transmitted disease is that it's a sexually transmitted disease. Sex has ever been at odds with reason. Since the beginning of time, women have known that unprotected sex--even just once--can change life forever, yet unwanted pregnancies occur every day. STDs of all varieties and degrees of severity flourish. As a nation, we cannot agree on something as simple as condom distribution; and anyone who's never had unprotected sex, please stand on your heads.
A Determination to Live Life to the Fullest
Sam's partner of seven years is not sick. Sam told him about his condition on their second date, and his partner decided it was not a deal breaker. Such was the depth of their love even from the beginning. Seven years later, they are the most stable couple I know. Living with someone who has AIDS, Sam's partner told me once, makes it hard to get upset over little things because you just never know how much time you have.
When I heard this, I swore that I would live my life just like that, because even without AIDS you just never know how much time you have. But of course I don't, not every day, and neither do Sam and his partner. They fight and sulk just like the rest of us, and the disease is stressful to both of them. Sam's partner sometimes gets tired and resentful and then ashamed and angry at himself for feeling that way.
In a way, their relationship is a threesome--the two men and the disease. Sometimes the disease goes down into the basement and naps for weeks at a time, sometimes it sits in the middle of the dining room table and throws a screaming fit, and sometimes it wraps itself around Sam and pulls him to the ground. But it never, ever goes away.
When I had an infection that left me exhausted and feverish a while ago, I realized that this is how Sam feels a lot of the time. And for the life of me, I cannot understand why he doesn't hate the rest of us, complaining about our menstrual cramps and our little colds. But he doesn't. He and his partner calmly face down every health crisis or discouraging batch of results and celebrate the triumphs.
When the drugs fighting his pneumonia caused his kidneys to fail and sent him back to the hospital, they explain what was going on with a sense of relief. "It's just the drugs," Sam said, with a shrug. "I'll be home in a day or so."
I ask him what the most difficult thing is about having this disease now, and this is what he says: "The hardest thing is accepting graciously all the things people have done for me. I want to be able to return all the favors, and I wonder when will the time come that I can."