When I first got sick back in late 1980, no one knew what was making me ill, so there was no hope. I went on living and things changed. Eventually, they concluded that I had this new disease called AIDS (recently renamed from "GRID"). They said that everyone who contracted it would die within three years. The cause of the disease had not been identified. People who had it were considered to be in a very small minority and were often shunned or ignored, so there was no hope. I got sicker, but I went on living, anyway, and things changed.
Later on, they discovered that the disease was caused by a virus; but they didn't know how to cure viruses or how to treat AIDS very well, so again there was no hope. I kept getting sicker, but I kept on living, and again things changed.
Years later, they found some drugs that seemed to be effective against the virus, but the drugs themselves often made people feel sick. The drugs didn't seem to work very well, or to be effective for very long, so there was little hope. Many people died, and I got even sicker; but I went on living; and things changed.
Then they found drugs that worked better and lasted longer if you combined them with all the other drugs; but, since I had already become resistant to those other drugs, the combinations didn't last very long for me. But, I did get a little better for a while, and became a little more hopeful, so I went on living. And things went on changing.
It turned out that the combination of medicines is too hard on my liver. Since I also have cirrhosis from chronic Hepatitis B and C infections, I can probably not tolerate any of the drug combinations for very long. Until recently, liver transplants were not available to people in my condition, so there was no hope. I went into liver failure and nearly died. But I survived that, so I went on living. And later, I survived liver failure yet again, and went on living yet again. And things changed yet again.
They've started experimenting with liver transplants in people with HIV infection, now; and they tell me that better drug combinations are on the horizon, so things seem more hopeful at times. But I know things can change.
Some doctors and scientists have told me frankly that I represent a very small minority; and that, given the advanced state of disease that I'm in, my chances of survival are not good. Many have entirely written off people like me. Often, we feel shunned or ignored. Sometimes I think, "Maybe things change, but people don't." Meanwhile, I keep getting sicker and sicker. I've lived a life of constant illness and pain. I've seen myself robbed of hope at a time when others were given back their lives. It often feels as if those who are still sick have been abandoned and forgotten. That has been the worst thing of all to deal with. People ask me why I bother to go on living at all if things seem so hopeless. I smile and tell them the only thing I have learned from this experience that I know to be true: Things change.
Dick Remley facilitates a Being Alive support group for persons with HIV/AIDS experiencing treatment failure. The group currently meets at Being Alive in West Hollywood on Thursday afternoons from 3pm to 5 pm. For more information, call Being Alive at 310.289.2551.