It takes more than fictitious ghouls and goblins to frighten me these days. I have more realistic horrors to deal with, mostly because I've been haunted by the ghost of HIV for so long. But I've come to the conclusion that, like the imitation Darth Vaders and Draculas you see at Halloween, many of these scary things aren't quite as frightening once you take a good look at what you're dealing with under the surface.
For example, a drop in my T-cell count or an increase in my viral load used to freak me out. When my CD4s got under a hundred, I would wake up in the middle of the night in terror, positive that I was going to die in my sleep. When they got under 50, I signed a living will and started giving away my possessions. Then one day, my count got down to zero. Convinced I was a walking corpse, I asked my doctor how much longer he thought I could hold out. He just shrugged, smiled and said, "Well, I have one patient that's been at zero for over two years now, and he's doing fine." And what do you know, one year and a new protease inhibitor later, my count was back over 50 again. That was nearly five years ago. T-cell counts don't frighten me as much any more.
It scares me when I hear people talk about how HIV has been "cured." You might be surprised at how many people are convinced this is the case. Working at an AIDS service organization, I have heard this more times than I would have thought possible. Just the other day, in fact, I heard someone at AIDS Treatment Initiatives ask Guy if he could buy some of "that stuff that's the cure for AIDS." I thought people knew better by now. It sends shivers down my spine knowing that a lot of these folks have probably gone right back to having unsafe sex and abusing their bodies. I try not to let this upset me, however; I simply remind myself how important it still is to educate anybody and everybody about the facts. I take advantage of every opportunity possible (like right now) to do just that.
Just this week, my friend Bruce Almond, a former contributor to this publication, died after fighting off HIV for many, many years. It saddened me because, like many others around AIDS Survival Project, I will miss his positive attitude and kind demeanor. But I just couldn't go to his memorial service. I told myself that I have been to too many of them, and that I just couldn't go through another one, even for someone I cared so much about. But the truth is, every time I go to one, it reminds me that the next one could be mine. And let's face it, it's not an irrational fear for me to have. I hope Bruce will forgive me, and you know, this is one fear that I think he would understand.
I guess the thing that scares me the most has to do with the way some people (and many organizations) see AIDS these days. Some see the whole crisis as being over, despite the fact that millions are still dying from it, not just in Africa, but here in the U.S. as well. Some still believe they're not in a high risk group, even though the transmission rate among heterosexuals continues to climb higher every day. Even some gay folks refuse to discuss it any more; they're burned out from dealing with it for so long and point to the latest medications as a sign that the worst is over now. I wish I could share their point of view, but common sense tells me that's just not the case. There are still way too many Bruces passing away.
Maybe things aren't like they were in the early days of the epidemic, but it truly frightens me to think that many folks have been lulled into a false sense of security. I've watched as volunteerism has decreased at most ASOs, including ours, over the past couple of years. I've consoled myself by saying this is because more people are going back to work. While this may be the case for a few people, I think apathy about AIDS may be responsible for more of this drop than some would like to admit. And that's really scary.
Getting frightened doesn't help the situation, though -- only action will. As I said before, every time I hear new, scary statistics or talk with someone who thinks that HIV is in the past, it renews my resolve to continue doing what I'm doing. Change is scary for everyone, and the HIV/AIDS community has gone through a lot of changes in a very short time. As always, it will be up to those of us who are infected or affected by HIV to resist giving into the fear or the apathy, and come up with new solutions to the new problems that face us in the next century. I didn't stay alive this long by giving in to my worst fears, and I'm not about to do it now, no matter bad things my get for me personally.
One thing that gives me hope for AIDS Survival Project is how well we have always reacted to discouraging circumstances. A lot of agencies simply fumble the ball and stop providing quality services when the going gets tough. But AIDS Survival Project, despite the fact that there have been several changes in our staff and volunteer base, has consistently dealt with these changes in a positive manner. This month, in fact, despite the departure of our beloved Lesley Brogan (sniff, sniff -- see her article here), we can be glad that Gerry Hoyt will be taking over the peer counseling arena for her, and that Terri Wilder (who has worked with us in several capacities over the summer) will be our new Operation: Survive! Manager. Also, a new position has been created to help us deal with the incredible growth of the agency over the past few years; Lisa Lunsford comes on board this month as our new Associate Director. And Special Events has now been taken over by Anthony Dean. It's kind of scary to be assaulted by so many changes all at once, but I take great comfort in knowing that there's one thing about this organization that never seems to change: its spirit.
I may get frightened about Y2K, or pneumonia, or even the next Kevin Costner movie, but I don't get scared when it comes to AIDS Survival Project any more. It is still manned by the most caring people in the community. Of course, knowing that we've expanded so much that this article will now be going out via the Internet all over the world still makes me tremble a bit. "Just think, Joe," one of my friends said to me recently, "people in Australia can read all about your diarrhea!" Eek! Now that's really scary. (My pleasure Joe! -- Webmaster)