Everything changes . . . nothing stays the same.
Change is sometimes painful.
Change is definitely something I have experienced a lot of over the last 11 years. When I was first diagnosed with HIV in 1989, AZT monotherapy was my best option. That would now be considered substandard care, but at the time it gave me hope. I had by then lost dozens of friends, and would continue to lose more in the years to come. I can remember specifically one beautiful, warm, summer evening in 1989, sitting on the rooftop of the apartment I lived in at the time, gazing up at the stars and thinking how lucky I was not to have "caught it." Thanking God, and wondering why I had been spared.
In September I went in to my doctor for a routine checkup, and he suggested I get an HIV test. I had never had one before, but I figured it would be a good idea. I was at the time in a monogamous relationship, but that had not always been the case. I wasn't showing any symptoms, but decided to err on the side of caution, and got tested.
A week later, I went alone to get the results. It was a warm, sunny day of autumn. My doctor, while a very good doctor, didn't have a lot of experience with HIV patients. It was obviously difficult for him to tell me I had a potentially life-threatening illness, and after giving me my results, referred me to the HIV clinic at Northwestern Memorial Hospital in Chicago. I mumbled thank-you, numbly walked out of the office and made my way home. Everything looked different, and nothing would ever look the same again. Anyone who's been there knows what I'm talking about.
When I got home I plopped myself down in the chair and cried and cried, until I couldn't cry any more. Actually I wailed. Sobbed. Felt sorry for myself. Why me? So much for being spared. And later that evening, I had to tell my lover over the phone, while he was at work (I'm not a good liar, although I sometimes wish I was) that I was positive. I'll always remember the look in his eyes when he came home from work that evening, and the words "I'll always be there for you" and how much they meant to me.
You have to remember, back in 1989 there wasn't a lot of hope for those of us diagnosed with HIV. There was some hope, certainly more than our brothers and sisters had in the early and mid '80s, but it was way before the time of protease inhibitors. I remember thinking to myself, I had to make it to the year 2000, because I had always wondered since childhood what my life would be like in the 21st century. So that was my goal. And I made it.
And so have the treatments for HIV. When I joined TPAN as a member in 1990, there still weren't a lot of options. AZT, ddI, and ddC were the "alphabet" drugs. Many of the other drugs at the time were those used to treat or prevent opportunistic infections such as KS, CMV, or PCP. Today there are so many more options and drug therapies to help battle this virus. I probably would not still be here if it weren't for combination therapy and protease inhibitors. By my own calculations, at the time I tested positive, I had to have already been positive for at least 2 years, probably longer. My T-cells were at 500 when I started AZT, but they gradually dropped over the years, once dipping below 200. (Oh my God -- I have AIDS!) Protease inhibitors changed all of that, and for several years my viral load was undetectable, my T-cells up to 800. I actually looked and felt better than I had my entire life. I began taking better care of myself, working out, working on my inner-self, watching my diet.
My numbers are still pretty good, T-cells at 800, percentage at 28, and viral load, while not undetectable (it usually isn't on the second protease) is still relatively low at 2900. I still look and feel great, but lipodystrophy has started to take its toll. No paunch, no hump, just lots of veiny arms and legs and that hollowed out look in the face. But I could deal with all of that. The veins were eyed enviously by body builders at the gym, and the high cheekbones gave me that gaunt look that was sought after by Calvin Klein and the rest of Madison Avenue.
But the naso-labial folds that I've started to get around my mouth just make me look old. And I've always been told I look younger than I am. Now I'm starting to look my age. So, what, in two years when I'm 44, will I look 60? I never anticipated having to deal with looking sick, especially when I don't feel sick. But it really fucks with your head, and for the first time in my life I'm considering plastic surgery. Go figure.
So is this where I thought I would be in the year 2000? No, but I'm glad to be here. Working at TPAN these last eight years has been the most wonderful, fulfilling, scary, chaotic time of my life, and I wouldn't change it for a thing. I've helped to get information about HIV into the hands of those who need it most. People like me who are living with this disease, individuals who are incarcerated and denied treatment, those living in rural areas who have to teach their doctors about HIV, people in Africa who can't afford a subscription to the magazine because it's equal to one month's wages. Real people. Not prisoners, not patients, not clients, but people. I want to help give other people the hope that I've been given.
Because some things never change.
Jeff Berry has served as Positively Aware distribution manager and editorial assistant since 1992.