Tuesday, December 06, 2005
Think It Through
It's not the end of the world, I know that, it's just a bit of a jolt. My friend still loves me, my friends at large still care. It certainly makes some sense of the overactive metabolism, the weight loss, the night sweats I've had since diagnosis. I've got a dentist's appointment tomorrow, where I'll ask her to look for any evidence of opportunistic infection in my mouth and if there is any, I'll go to the doctor I like the most out of the ones at the clinic and say to her not to worry about confirming the result, but start talking medication.
I Am Disabled
Previously, people who are HIV positive were not protected by the Disability Discrimination Act on the grounds that the virus in and of itself didn't constitute an illness or disability that prevented a person from carrying out normal everyday tasks, but once someone was ill as a result of the infection, then yes, they could say that they were disabled by their illness, but while they were well, their employers could fire them for being positive, could deny them promotions and spit at them in the street on the way to work, as well as any other humiliating treatment they felt like dishing out to us vile positive people because, hey, we're so dirty and it's our fault.
Well, it looks like the DDA has finally gained some concept of the notion of the Social Model of Disability, whereby it's not that the person with a disability has a problem, it's that society fails to provide what is needed by those people. For instance, wheelchair users aren't disabled by their legs, but by the lack of adaptations for their wheelchairs. In a similar way, finally, HIV positive people are disabled not by the virus that resides in their blood and their brain, but by the shocking stigma branded upon them by "Them" - those people who don't have this little parasite.
I think this will make disclosure in the workplace more possible, since it also means that disclosure is bound by the same confidentiality requirements as the disclosure of other disabling conditions.
I do wonder, then, if this now means that HIV+ people will be able to claim Disability Living Allowance, because that uses similar terms to define disability. It might be worth attempting to claim, since it's an entitlement that isn't dependant on financial circumstances or on inability to work. However, it's very much based on ability to carry out day-to-day tasks, so I don't think that's a winner, unless they also shift more towards a social model.
Well, it looks like the DDA has finally gained some concept of the notion of the Social Model of Disability, whereby it's not that the person with a disability has a problem, it's that society fails to provide what is needed by those people. For instance, wheelchair users aren't disabled by their legs, but by the lack of adaptations for their wheelchairs. In a similar way, finally, HIV positive people are disabled not by the virus that resides in their blood and their brain, but by the shocking stigma branded upon them by "Them" - those people who don't have this little parasite.
I think this will make disclosure in the workplace more possible, since it also means that disclosure is bound by the same confidentiality requirements as the disclosure of other disabling conditions.
I do wonder, then, if this now means that HIV+ people will be able to claim Disability Living Allowance, because that uses similar terms to define disability. It might be worth attempting to claim, since it's an entitlement that isn't dependant on financial circumstances or on inability to work. However, it's very much based on ability to carry out day-to-day tasks, so I don't think that's a winner, unless they also shift more towards a social model.
Fuck.
After having done my research and thought that I would have a few years before I had to even think about getting medical intervention, my doctor just phoned me to let me know my results. My CD4 count is half that it was at my first test and my viral load is more than 3 times what it was. The viral load change isn't significant, but when CD4 attrition is usually about 40 points in a year, to go from around 520 to 280 within 4 months doesn't bode well at all for me. I'll get retested in the new year to confirm, but it does mean a very harsh decision for me to make about state intervention in my life and what that means for my prognosis.
And there was me telling my beloved friend none of it mattered. Suddenly I'm the one frightened and uncertain and he's the one heading home contentedly and I'm still so certain there's no difference between us? Fuck.
And there was me telling my beloved friend none of it mattered. Suddenly I'm the one frightened and uncertain and he's the one heading home contentedly and I'm still so certain there's no difference between us? Fuck.
A Friend's Result
There's a friend of mine who has been enormously, enormously supportive of me through the whole process of having a positive diagnosis who wanted to test, not having tested for a very long time, so, of course, I didn't think twice about offering to go with him to the clinic. It has, however, been a really, really interesting thought process for me because the friend in question is someone to whom I feel immensely connected, so rather than just being a matter of holding his hand in the waiting room and making him laugh, it's sparked off some thoughts that I hadn't expected.
He came to stay with me the night before the test and it was heart-wrenching to see the fear and uncertainty he was experiencing, not at the horrific prospect of a positive result, but at the thought of the period of adjustment, the transition to becoming, in his words, "One of them." That was something that has been on my mind for a while, the sense that there should be some feeling of discordance between me and people who do not share my serostatus, but also that I should have some sense of kinship with other people who have the virus, as though the thing in our blood and our brains carries some kind of family tree which becomes evident in our lifestyles, our thinking, our relationships. I don't like that thought at all.
I found myself saying to him, "If you are one of us..." which really made my head spin and perhaps was unnecessary to remind him that the thing he was so anxious about was the thing that I live with now and largely forget about (much as the clinic themselves forget to send me my results by email - STILL, but never mind) but I do understand totally his anxiety about the period of transition. Not in terms of seroconversion, the sweating at night, the weight loss, the symptoms of primary infection, but in terms of the knowledge that this thing is always hanging over you like a shadow. At least, that's how he was seeing it, that it's a spectre, it's something to always bear in mind, to think about disclosure, to think about the prospect of discrimination and the state's involvement in your life after a positive diagnosis.
It's been good to be reminded of the significance of the journey I have been on for the last few months, how far I've come from the tears and horror of the initial revelation to the kind of casual nonchalence there is about it now.
I'm not going to talk about the test itself, that's his business to talk about, not mine, but I will remember the assurance I felt that I was telling the truth when I sent him a SMS message saying, "You're in the other room getting your results right now, so I know you won't read this until later, but whatever the result, you'll always be my friend."
It's true. He has blue eyes, I have brown eyes. There's no sense of disassociation because of it and if his eyes became brown, I'd feel no deeper sense of kinship than I felt anyway. It is significant, but it doesn't matter, and I guess there's my lesson that I've learned from this.
It may be the end of the world, but some things are far more important.
He came to stay with me the night before the test and it was heart-wrenching to see the fear and uncertainty he was experiencing, not at the horrific prospect of a positive result, but at the thought of the period of adjustment, the transition to becoming, in his words, "One of them." That was something that has been on my mind for a while, the sense that there should be some feeling of discordance between me and people who do not share my serostatus, but also that I should have some sense of kinship with other people who have the virus, as though the thing in our blood and our brains carries some kind of family tree which becomes evident in our lifestyles, our thinking, our relationships. I don't like that thought at all.
I found myself saying to him, "If you are one of us..." which really made my head spin and perhaps was unnecessary to remind him that the thing he was so anxious about was the thing that I live with now and largely forget about (much as the clinic themselves forget to send me my results by email - STILL, but never mind) but I do understand totally his anxiety about the period of transition. Not in terms of seroconversion, the sweating at night, the weight loss, the symptoms of primary infection, but in terms of the knowledge that this thing is always hanging over you like a shadow. At least, that's how he was seeing it, that it's a spectre, it's something to always bear in mind, to think about disclosure, to think about the prospect of discrimination and the state's involvement in your life after a positive diagnosis.
It's been good to be reminded of the significance of the journey I have been on for the last few months, how far I've come from the tears and horror of the initial revelation to the kind of casual nonchalence there is about it now.
I'm not going to talk about the test itself, that's his business to talk about, not mine, but I will remember the assurance I felt that I was telling the truth when I sent him a SMS message saying, "You're in the other room getting your results right now, so I know you won't read this until later, but whatever the result, you'll always be my friend."
It's true. He has blue eyes, I have brown eyes. There's no sense of disassociation because of it and if his eyes became brown, I'd feel no deeper sense of kinship than I felt anyway. It is significant, but it doesn't matter, and I guess there's my lesson that I've learned from this.
It may be the end of the world, but some things are far more important.
Saturday, December 03, 2005
World AIDS Yesterday
Well, two days ago, yes, but you may have noticed my conspicuous lack of comment on that date. If you've seen me around, you won't have seen me wearing a red ribbon and you won't have seen me at the fundraisers or vigils. Partly this is because I was never that involved with that whole process before diagnosis, so I'm not quite certain why it is that I should change over, but I'm aware that I kind of feel as though it's a bit stupid for me to be wearing a ribbon saying I'm AIDS aware, when clearly, I wasn't quite aware enough to stop me from catching it.
Maybe when I'm not sweating at night, maybe when my metabolism has calmed down, maybe when I feel like I can be responsible and adult about not placing other people are risks they may not realise or when I'm celibate and wrapped up in so much armour I will never bleed or even sneeze again, then I might feel like I can say I'm AIDS aware again. At the moment, sure, I can talk about reinfection, I can bore you to death about standard rates of CD4 degradation, I can sound very convincing when I tell you about relative risk levels and I can tell you again and again how it's not the death sentence it once was, but, really, I know nothing.
You don't ask a drug addict for diet advice, so why ask an HIV+ man for safe sex advice? Clearly I don't have a clue what I'm talking about, but perhaps the critical difference now is that I'm aware of how little I knew. I don't think I was quite a part of the generation who grew up thinking AIDS was something that only happened to old men who go to the King's Arms and that anyone positive is a skull-faced crystal zombie; I'd have always said I was more aware than that, but in the end I wasn't. I was so righteous about my knowledge of HIV prevention that I'd make a point of not serosorting and still having sex with someone knowing that they were positive just so I didn't look like I'm being prejudiced, but really, if you know someone's got measles, you don't kiss them, so why fuck positive guys?
No-one has yet turned me down for my status when I've told them of it, and most of the time they turn out to be positive too, but I'm not sure that's the happy miracle I hope it is, but I wonder if it just means that sooner or later, I'm going to infect someone, cost the state about £1m in a lifetime of medical costs and be accountable for someone going through the strange re-evaluatory period I'm just coming out of when I know I'm emotionally tough. And, even though I know it's not my fault entirely, I still dread the thought I might have unknowingly passed it on in the past before my diagnosis.
It's not in the forefront of my mind nearly as much as this blog suggests, though, bear in mind that a single-issue blog is always going to give a skewed perspective on the person behind the issue. There's still so many other things that worry me more, make me happy, engage my mind, but for the sake of exploring the issue, it's what I talk about on here, rather than tell you about what I've had for breakfast, but perhaps once I've been to the dietician, I might just have to start doing that, too.
Maybe when I'm not sweating at night, maybe when my metabolism has calmed down, maybe when I feel like I can be responsible and adult about not placing other people are risks they may not realise or when I'm celibate and wrapped up in so much armour I will never bleed or even sneeze again, then I might feel like I can say I'm AIDS aware again. At the moment, sure, I can talk about reinfection, I can bore you to death about standard rates of CD4 degradation, I can sound very convincing when I tell you about relative risk levels and I can tell you again and again how it's not the death sentence it once was, but, really, I know nothing.
You don't ask a drug addict for diet advice, so why ask an HIV+ man for safe sex advice? Clearly I don't have a clue what I'm talking about, but perhaps the critical difference now is that I'm aware of how little I knew. I don't think I was quite a part of the generation who grew up thinking AIDS was something that only happened to old men who go to the King's Arms and that anyone positive is a skull-faced crystal zombie; I'd have always said I was more aware than that, but in the end I wasn't. I was so righteous about my knowledge of HIV prevention that I'd make a point of not serosorting and still having sex with someone knowing that they were positive just so I didn't look like I'm being prejudiced, but really, if you know someone's got measles, you don't kiss them, so why fuck positive guys?
No-one has yet turned me down for my status when I've told them of it, and most of the time they turn out to be positive too, but I'm not sure that's the happy miracle I hope it is, but I wonder if it just means that sooner or later, I'm going to infect someone, cost the state about £1m in a lifetime of medical costs and be accountable for someone going through the strange re-evaluatory period I'm just coming out of when I know I'm emotionally tough. And, even though I know it's not my fault entirely, I still dread the thought I might have unknowingly passed it on in the past before my diagnosis.
It's not in the forefront of my mind nearly as much as this blog suggests, though, bear in mind that a single-issue blog is always going to give a skewed perspective on the person behind the issue. There's still so many other things that worry me more, make me happy, engage my mind, but for the sake of exploring the issue, it's what I talk about on here, rather than tell you about what I've had for breakfast, but perhaps once I've been to the dietician, I might just have to start doing that, too.
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