[Speech for World AIDS Day, 2015]
A couple of weeks ago, I got four different calls from journalists and radio stations asking how I felt about the announcement that actor Charlie Sheen had publicly admitted to being HIV+. I had to come up with an opinion, and I thought, well – good for him, public openness by a celebrity, etc. – but, for the most part, I found it hard to feel very interested.
That’s not because there’s anything wrong with Sheen – even his public behavior in the past few years might be explained as his own reaction to the news, and I do have more sympathy for him than I did before. It’s more that he doesn’t seem particularly special to me – not more so than any of the many people I’ve known over the past thirty-three years who have dealt with HIV and AIDS in different ways, in different circumstances, with different emotions.
Like all the members of our own Newcastle patient group, he’ll have to figure out his medications – which may or may not be rough for a few days, or weeks – though most medications are much easier now than they used to be. He’ll have to figure out what he thinks about sex and relationships, and what to do with the relationships he already has, and how to talk with anyone new he might meet.
He’ll learn to work with his doctors, nurses, perhaps counselors – to figure out what support he needs, and how to take care of himself – of his health, of his general well-being; and he might have to learn not to give up, not to retreat from living his life. He’ll have to pay attention to his body, and learn to figure out what is a real problem, and what isn’t – which is tricky for anyone of course, but even trickier when doctors are checking up on you. So he may have night sweats, or side effects, or feel a bit off… but he can get through all those things, too.
Hardest of all, he’ll have to face how he feels about the possibility of illness, the possibility of dying. Statistically, of course, if he takes his meds, he should have a normal life span, with the treatments we have now; but there’s no way to have this infection and not think that you might have to look illness or death in the face a lot sooner than you would have hoped.
I guess that he will have to get through all this in a different world than the one that we live in – he’ll have paparazzi, lawsuits, chat shows, public pressure – but a lot of what will come up for him are the same things that all of us deal with, every day….
***
It can be hard work for people with HIV and AIDS to manage it all – but it’s also true that we are very lucky, compared to those who went before us. At this vigil we remember everyone who has died, and that is a lot of people – close to forty million over the past thirty-four years. If you’re like me, you can’t even imagine that many people – but we all remember one or two who were especially dear to us, or ten perhaps, or for some a hundred or more. And those memories are important: the people we have lost have changed our lives, even made our lives, and we remember them in our dreams, or when we’re thinking of something else…
and there are the memories of what it was like thirty years ago, and how it has all changed: from the utter confusion of the early 1980s to the panic and anguish of the late 1980s; the first appearances of medications and the frustration at how toxic, how hard to get, they could be… we settled down in the early 1990s to a certain toughness, a ruthless determination to keep going; and then in 1996 those new medications that have made such a difference. A lot to be grateful for, and a lot to grieve for.
***
Here in the Northeast, we’re also grateful for the extraordinary support that’s available: the many clinics and doctors in the NHS who take care of us, MESMAC and the Blue Sky Trust with their workshops and support groups, Mark’s work with Eyes Open, talking to schools and the community; and I’m proud that the PPT, our patient support group, has finally got a website, brochures, and a new self-management program for people who want to take care of their own health. (Sorry about the commercial, I needed to say that.) And all of these groups work together to take such good care of us…
And we’re grateful that we can be here today: vigils like this one have gone on all over the world for many years now, and we can use them to share our memories, our grief, and also our confidence in the future. We’ve worn the red ribbons since 1991, to remember those we have lost, in fact to remind us that we should never forget them.
So, you can see just why: I’m glad that I’m here – and I’m glad that you’re all here.
Thank you.
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