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Feb. 1st, 2002 01:30 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
rivkaWednesday's Salon had an essay by a man who has been living with AIDS for eighteen years. He was 23 when he was diagnosed, and was told he could expect to die shortly - so, he says, he stopped traveling along the path to adulthood. He never built a career or put down roots or invested his money, because he never expected to be around long enough to need them.
He started getting sick in the early 90s. Those were still the days before protease inhibitors, which didn't really start making a difference in mortality rates until 1997, and about which he says
For some it was too little too late. For others, it was the moment in the movie when the ticking bomb stops seconds before everything is destroyed. For me, it was both.
and then
My first round of protease inhibitors were even less resilient than I'd been.
and finally
I've developed resistance to most current meds available yet my health remains stable. [...] I'm too healthy to die, too ill to assume "normality."
Here's the thing, and it's a card that is very often palmed in these kinds of stories: if he's in this situation with his meds, that means he's been taking them inconsistently. If he's developed resistance to all the protease inhibitors, that means that he threw away regimen after regimen by skipping doses, by stopping and starting, by disregarding instructions. There are other ways to develop resistance - for example, most long-term survivors are resistant to AZT through no fault of their own, because it used to be prescribed as a single-drug regimen before anyone knew that you couldn't do that. With the protease inhibitors, though, and the other recent drugs, it's all about nonadherence.
Does this make his story any less sad? I don't really know what to say. I don't see many people like him in my clinics, children of privilege and gay high society brought low by AIDS. But I see lots of people in his situation: still alive long after having given up on life.
The thing about his predicted death sentence, likely enough when it was imposed upon him at the age of 23, is that it didn't just absolve him of the necessity of becoming an adult - it left him permanently excused from the responsibility to care for his own health. When he was diagnosed, there was nothing that could be done for people with HIV, and precious little they could do for themselves. Comfort care, mostly.
The state of the art has changed, but many of the underlying attitudes haven't. Hopelessness. Fatalism. Often the same people who rage against the doctors for not doing enough, or "the system" for not having a cure, are the ones developing resistance to drug after drug because they haven't really committed to their treatment. Because they don't really believe, at a deep and maybe unconscious level, that anything can be done. Because in their hearts they are dead men walking.
This author, this Hugh Elliot, has to know that the reason for his drug resistance is his own nonadherence. After they've had to change your regimen a couple of times, they tend to harp on it. But he doesn't acknowledge it. Most AIDS narratives don't. I've become so acutely aware of that omission. Probably sometimes it's self-serving, a desire to appear the innocent victim. More often, I think it's a matter of learned helplessness, the conditioned absence of a sense of control over one's situation.
I do my best. But sometimes I feel as though I'm trying to sweep back the sea.
He started getting sick in the early 90s. Those were still the days before protease inhibitors, which didn't really start making a difference in mortality rates until 1997, and about which he says
For some it was too little too late. For others, it was the moment in the movie when the ticking bomb stops seconds before everything is destroyed. For me, it was both.
and then
My first round of protease inhibitors were even less resilient than I'd been.
and finally
I've developed resistance to most current meds available yet my health remains stable. [...] I'm too healthy to die, too ill to assume "normality."
Here's the thing, and it's a card that is very often palmed in these kinds of stories: if he's in this situation with his meds, that means he's been taking them inconsistently. If he's developed resistance to all the protease inhibitors, that means that he threw away regimen after regimen by skipping doses, by stopping and starting, by disregarding instructions. There are other ways to develop resistance - for example, most long-term survivors are resistant to AZT through no fault of their own, because it used to be prescribed as a single-drug regimen before anyone knew that you couldn't do that. With the protease inhibitors, though, and the other recent drugs, it's all about nonadherence.
Does this make his story any less sad? I don't really know what to say. I don't see many people like him in my clinics, children of privilege and gay high society brought low by AIDS. But I see lots of people in his situation: still alive long after having given up on life.
The thing about his predicted death sentence, likely enough when it was imposed upon him at the age of 23, is that it didn't just absolve him of the necessity of becoming an adult - it left him permanently excused from the responsibility to care for his own health. When he was diagnosed, there was nothing that could be done for people with HIV, and precious little they could do for themselves. Comfort care, mostly.
The state of the art has changed, but many of the underlying attitudes haven't. Hopelessness. Fatalism. Often the same people who rage against the doctors for not doing enough, or "the system" for not having a cure, are the ones developing resistance to drug after drug because they haven't really committed to their treatment. Because they don't really believe, at a deep and maybe unconscious level, that anything can be done. Because in their hearts they are dead men walking.
This author, this Hugh Elliot, has to know that the reason for his drug resistance is his own nonadherence. After they've had to change your regimen a couple of times, they tend to harp on it. But he doesn't acknowledge it. Most AIDS narratives don't. I've become so acutely aware of that omission. Probably sometimes it's self-serving, a desire to appear the innocent victim. More often, I think it's a matter of learned helplessness, the conditioned absence of a sense of control over one's situation.
I do my best. But sometimes I feel as though I'm trying to sweep back the sea.
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no subject
Date: 2002-02-04 07:14 am (UTC)no subject
Date: 2002-02-04 09:44 am (UTC)I understand your hesitation. I suppose if I was going to open that can of worms I'd use the standard "now, I'm not blaming the victim" dodge, and word things as considerately as I could. It still seems like an important counterpoint to make. Do you suppose someone will make it?
no subject
Date: 2002-02-04 10:01 am (UTC)You forgot the regular church attendance. I know, it's awful. Soon I'l throw out my last tie-dyed T-shirt and my old Birkenstocks, and my liberal friends won't even recognize me.
It still seems like an important counterpoint to make. Do you suppose someone will make it?
It's a counterpoint made more often in the AIDS press, where this kind of misdirection is harder to get away with, than in the mainstream press. After all, HIV drugs are a complicated subject, and (for example) it's unlikely that the Salon "Life" editor understands them.
I'll see if I can come up with a way of wording "Look, you forgot to mention to all these nice people you're hitting up for some pity that you had a chance at a second life with protease inhibitors, and you threw it away" that sounds a little less hard and unforgiving. The problem is that AIDS is such a cultural and moral bonanza of symbols: it's God's punishment, it serves you right for having such an immoral lifestyle, it's an outward sign of your inner awfulness. There's been a rightful backlash against that, but one that's gone a little too far - such that it's hard to criticize AIDS patients for anything at all without being seen as one of those nasty moralizers. Even when you're talking about blatantly obvious things, like "it's wrong to have unprotected sex if you're HIV-positive."
Okay. Maybe I'll work on it. Without getting all frothing-at-the-mouth and indignant, if I can manage it.