Yeah, you’re right: I’m dreaming. Imagining what life might be like if I won one of those recent jackpot prizes with Lotto. Until I realise that such dreams don’t really matter. I’ve had more than my share of luck in life, surviving HIV and AIDS. I can hardly spend too much time wishing Lady Luck would shine on me: she’s already given me a reasonable amount.
As we move into 2003 and I commemorate my fourteenth year with an AIDS diagnosis (and over twenty years with HIV) I still find it hard to believe that I’m still here. How I managed to squeak through with less than ten T-cells for five years and be around for the treatments revolution in the mid-nineties. And, even then, that my body has not given up on taking highly toxic drugs for so long and has kept enduring such a range of side effects.
Not that I’m crowing about it. I’m no better than anyone else for this achievement, certainly no stronger or cleverer than my many friends who have died with AIDS over the last couple of decades. I put my survival down to medical expertise, life-saving treatments in the last seven years, some wonderful support from friends and family and a bloody big dose of luck.
The support of close friends and family was particularly important in helping me through my difficult patches. Coming out about my AIDS diagnosis to my family had the most powerful effect on my relationships with my parents in particular as somehow it healed a lot of misunderstandings between us and helped me to feel truly accepted by them for the first time in my life.
I was lucky in this respect because as we all know from the stories of friends, revealing important things like the fact that you are gay or have HIV to family, workmates or even close friends can go terribly wrong and not work in your favour. My parents just happened to appreciate my honesty (after years of big secrets) and, whether it was because they thought we only had a short time left together or just because they loved me anyway, we got on famously after my big pronouncements and it helped my survival enormously.
I was also lucky with the pattern of my illness. I happened to contract six AIDS-defining illnesses over a five-year period in the early nineties but none of them concurrently. What I saw happen with many of my friends is that they came down with several conditions all at once and the combined burden on their immune systems was too much for them. In many cases these conditions were worsened by chemotherapy or radiotherapy for cancers like Kaposi’s sarcoma or non-Hodgkin’s lymphoma. Or their livers and kidneys failed after long periods of treatment with toxic drugs to treat CMV infections, particularly retinitis.
For whatever reason, I never developed those particular conditions that required such toxic immune-suppressing treatments that ultimately your health was compromised as much by the medicine as by the virus itself. All my illnesses, while pretty nasty at the time, were self-limiting and they all responded to treatment, sometimes against medical predictions. When HAART came along my body was ready for more torture, surprisingly, and I have cruised along reasonably well ever since.
I am mentioning this, not to give myself some undeserved pat on the back, but to try to give a positive perspective amongst the madness of HIV. Many of my friends regard their contracting of HIV as the worst luck they have ever encountered in their lives. While they are often prepared to admit responsibility for the situation, they look at negative friends who have pursued similarly risky sex lives and ask, “Why did this have to happen to me?”
A friend of mine who recently became positive has sensibly not dwelt on the reasons for his seroconversion. What’s done is done, he says; let’s cope with it and move on. However he does seem to be mentally stuck on what he regards as his enormous bad luck in being infected with a particularly aggressive strain of the virus. He can fairly accurately pin down the time he picked the virus up but couldn’t believe the speed with which it started to knock off his T-cells and his immune system. Within about three months his T-cells were in the low 200s and his viral load above 50,000.
We’ve all heard of increases in viral load in the early weeks of infection but the depletion in T-cells and the continuing viral load problem after six months had him in a state of panic. Quite rightly, I think, he started treatment much earlier than he would have expected. He has been quite depressed to find himself in this situation so quickly.
My friend’s situation shows me that even in a time of real promise and efficacy around treating HIV, some people can still have a hard time getting the virus under control. Still worse off are those who find they have some sort of reaction or severe side effect to nearly every antiviral they try — if there is an adverse event to be had, they get it and end up hospitalised for their trouble.
And the people doing it the hardest are those who are not responding to treatments at all — although my perception is that with new treatments coming along, like T-20 and tenofovir for instance, the numbers without any options left these days are fairly small.
But rather than see our particular pattern of illness or our experience with HIV as one that is dictated by fate, by the stars in the heavens, or some other nonsense, I want to make the point that, to some degree, we all make our own luck. You see, I have chosen to see the way AIDS has played out for me as a fortunate one. I have always done so, taking an optimistic outlook despite some fairly gloomy prospects. I could have dwelt on what might have been: on a life without the stigma and fear of discrimination associated with HIV, one where it was not so difficult to find a partner or to fulfil my career goals. Instead I went with whatever circumstances came my way and tried to adapt accordingly. Resilience and endurance have to be two essential qualities for surviving any chronic illness.
My friend with the aggressive virus can chose to focus on the problem it presents for him or he can thank his lucky stars that he is still likely to survive the ordeal. Not many of us with HIV are living on the edge in terms of our prognosis these days: take it from someone who has been there, that is definitely something to be grateful for! The treatments climate, while far from perfect because of all its side-effects and complications, has given us some security that we will be around for a few more years — and, with any luck, survive until something approaching a cure is found.
Our mental approach is still important. It affects the way we handle having to take drugs, how carefully we take them, how easily we are put off by their side effects and how optimistic we can be when our clinical markers are not as we’d wished. Or for those who don’t need to take treatments yet, how you look after your immune system in the best way you can. We can be thankful that we can still lie on our backs and look at the stars: only don’t trust everything you see in them!
Ultimately you are the master of your own destiny.
