HIV Diary: AIDS Elder

9.28.2004

By Robert Levithan

I am an AIDS elder. I have had almost every possible relationship with HIV and AIDS except dying from it'which, of course, always remains a possibility. In 1984, as part of a study, I was tested for HIV antibodies before the test was available to the general public. If I were to identify the flu-like symptoms that go along with HIV seroconversion, I would say the summer of 1975 is my starting date. Amazingly, my immune system held out until 1994 when it crashed and I was critically ill. For several terrifying days, I lay in a hospital room in Santa Fe with PCP (pneumocystis carinii pneumonia), with just one job: the next breath. It was a challenge not to believe that I was a goner. However, in spite of the gloomy prognosis, I harbored the strong, if unreasonable, belief that I would somehow leave the hospital in one piece and complete the master's degree in counseling that had become my passion. I did, in fact, graduate five months later after limping through my internship with New Mexico AIDS Services. I retired from my consulting business and went on disability. Several months later, I closed up my practice in Santa Fe and moved back to New York to work part-time as a crisis counselor at Friends In Deed, an organization that provides emotional and spiritual support to people dealing with illnesses like HIV/AIDS and cancer.

My next chapter with AIDS began with a stroke of good fortune: Within days of my arrival back in New York, I entered my name in a lottery for early access to the first successful protease inhibitor, Crixivan, and won! By the time the FDA approved this class of drugs, I was experiencing a new phenomenon: With HIV suppressed, my immune system was actually rebuilding. Until then, we didn't know that this was a possibility. I have been extremely blessed to be at the right place at the right time, remaining ahead of a disease curve that was swallowing people I knew on a weekly basis'friends, lovers, relatives, colleagues, neighbors, and comrades'but for some reason, not me. My T-cell count skyrocketed from 22 to an all time high of 804, two months ago.

All along, in spite of the dire headlines, common sense told me that the jury was still out. No illness in the history of epidemiology had ever been fatal for 100% of the people who had contracted it. Why would this one be different? And it helped to come from a family with good genes (my dad is 93)'a family that also believes, not in statistics, but in our ability to survive the unsurviveable. I channeled my fear and outrage into activism, fighting the stigma of AIDS, and discovering my current life as a workshop leader and psychotherapist. The paradox is that AIDS destroyed much of the world I had known, brought me to my knees, and then opened the door to a whole new life. I'm not grateful for the virus'that would be simplistic'but I am grateful for the growth, strength, intimacy, and drive to live ever more fully that it created in me.

There are fewer and fewer of us around'we AIDS elders who remember when'who carry this cultural history within us. As younger generations come of age, there is a danger of not taking AIDS seriously enough. Medication ads can make it look like a walk in the park'it is too easy to justify careless and risky behaviors. It is true that the world doesn't end with an HIV diagnosis, but it is changed irrevocably.

My goal here at Out.com is to share my journey: Both my history and my present, as a 53-year-old man living a life he once doubted he would ever have. I hope that you will take the time to join me on this messy, glorious ride.

September 20, 2004
New York City

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