Twenty Years and Counting

I never expected to be around this long. I was there twenty years ago, when "life"-- as opposed to "quality of life"-- was the only thing on the agenda. I was admitted to the hospital in June of 1980 and told I had a compromised immune system, with pneumocystis carinii pneumonia (PCP), persistent generalized lymphadenopathy (PGL), non-A/non-B hepatitis, and exposure to tuberculosis. I survived. In 1985, when the antibody test became available, my HIV/AIDS status was confirmed.

During those early years, I was an observer, fiercely maintaining a sense of denial. It didn't hit home until I lost a sister and a cousin to the virus in the early '90s. I slowly began to accept the fact that I was positive and took steps to deal with it. Unfortunately, I had a lot to overcome internally when it came to getting medical care. I harbored the same fears as many other people in my community about the medications and a well-founded distrust of many in the medical community. Overcoming my reservations, I started on a regimen of AZT and Videx (ddI) in 1993, which resulted in serious side effects -- unmanageable pancreatitis and peripheral neuropathy. So I stopped medications.

Life didn't seem worth living if I had no control over it. I fell into a very depressed state and was forced to confront another taboo, seeing a psychiatrist. Thankfully, I overcame that taboo. During this time, some people from the People with AIDS Coalition (PWAC) convinced me to become a volunteer. That's when things started to change for the better. I allowed myself to become involved with AIDS issues, focusing on the medications and managing drug side effects.

I also restarted antivirals (Zerit [d4T] and Epivir [3TC]) because of a decline in my CD4 count. I was able to deal with the medications a little better this time, but now I began to experience feelings of guilt. I wondered why I was still here while family members and friends were not. I continue to address these issues as life goes on for me.

In 1996, with the introduction of protease inhibitors and the advent of triple combination therapy, things started to look a little better for those of us living with HIV/AIDS. In 1997 I added Viracept (nelfinavir) to my regimen. Major problems with diarrhea interfered with my lifestyle and destroyed my image of being in control. My lipid levels became dangerously high, and I never attained the undetectable viral load that some others had achieved on HAART. Life was still here, but not the way I wanted to live it, with barely any control over my bodily functions and risking a possible stroke. I didn't revert back to "woe is me" but continued to strive on.

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"Major problems with diarrhea interfered with my lifestyle and destroyed my image of being in control."

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An experience I went through at that time defines what quality of life means to me. I had promised to help with a seminar for people who are HIV+. When I awoke the morning of the seminar, my diarrhea was uncontrollable, and I could have canceled. Being a very active person, I decided to go anyway. The diarrhea wasn't going to stop me. I took along some Depends, diapers for adult incontinence. I learned many valuable lessons that day, not the least of which was that Depends hold up pretty well. But you have to change them quite often when you have diarrhea, so that you don't feel so soiled.

Today I am on Kaletra (lopinavir), the most recently approved protease inhibitor, and have finally achieved an undetectable viral load. This should make me happy, but I continue to contend with increasing lipid levels, and I had a stroke last year. I'm weighing whether or not to stay on the protease inhibitor, whether or not having an undetectable viral load is worth the possible downside. I do all I can medically and holistically to control my lipids without increasing my lipid-controlling medications.

I continue to go out into various communities to talk about HIV prevention, testing and treatment. I don't need Depends any more, but there are plenty of other complications going on. I love this work, and it makes a major contribution to my quality of life. It's something I look forward to on a daily basis.

So twenty years and counting -- counting on twenty more.

Paul Muller is currently volunteering with the AIDS Training Center at St. Vincent's Hospital in New York City.