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Robert Levithan

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Outliving Myself: Advice from an AIDS Elder

Posted: 11/16/11 07:06 PM ET

I am 60. I have lived half my life with HIV/AIDS. This is my normal. When I tested positive as part of a study in 1983, no one would have expected me to be here, let alone be thriving. Not many of the first wave are here.

When AIDS was first identified 30 years ago, I was sure it would impact my life. I remember the first person I knew who died of AIDS: a charming, handsome young writer and editor. How am I different from him? Did he do something I didn't do? Can I dodge this bullet? As my brother once said to me, it must be odd to find out in retrospect that you were playing Russian roulette without even knowing it. Today's youth, in contrast, should know it.

I am a psychotherapist and workshop facilitator, in private practice and at Friends in Deed, The Crisis Center for Life-Threatening Illness. I observe firsthand the extraordinary capacity for adaptation and reinvention that manifests for many when faced with catastrophe. I have also lived it.

Nevertheless, I have never counseled a newly HIV-positive man or woman who didn't wish that they had done things differently.

What they do say:

"I jumped into the East River the day I found out I was HIV-positive."
--R.J.

"I went on a drug binge that lasted two weeks."
--P.

"I thought I'd feel relieved. I feel stupid."
--G.

"I can't get my mind out of 1985 thinking -- even though it's 2011."
--S.

Often it takes time for clients who are newly diagnosed with the virus to learn how to adapt with survival rather than despondency. This is tricky territory. I don't want to come off like one of those old codgers who act like the young have it so easy, but 30 years of balancing life and death does give critical perspective.

What I've learned is that long-term survival is a combination of luck, genetics, resiliency, attitude, and the interplay amongst them all. Challenges such as a diagnosis also bring us surprising gifts, but you have to walk through a lot of darkness to find it. This isn't Pollyannaish, just the hard-earned truth. My trajectory from darkness to hope started with terror: will it be me? This in turn led to activism: I'll save myself by being at the front lines. I volunteered at GMHC and then as an active member of the alternative support community. One was The Healing Circle, an unstructured, ad hoc series of weekly meetings, with up to 200 people or more at a time. We discussed living with illness rather than preparation for dying. Then there was the brilliant AIDS Mastery Workshop, which taught that "the quality of life is not determined by the circumstances." Hope and possibility were radical concepts in the dark days of AIDS.

My activism, my survival mode, led to personal reevaluation. It also led me to a new career. I went to graduate school for a degree in counseling psychology. When I started my four-year program, my life expectancy was considered two years. I just barely lived to get my degree in 1994 and move back to NYC with a T cell count of 22. I subsequently won a lottery for compassionate usage access to the first workable cocktail ("compassionate access" is a code term in the pharmaceutical world that "you are so far gone that we will throw out the rules"). That was in October 1995. Obviously it worked. I recently had a T cell count of 822 -- like money in the bank but better! My motto was "live for now." I had actually, I realized, outlived myself. I doubted, however, that I would ever have a partner again, that I would ever feel sexy again, that I would ever believe that a future was possible. And then it did get better: the life I am living today -- gay, HIV-positive, and at the top of my game as I reach 60.

I am sure that if I had been HIV-negative, my life would have been interesting and challenging. That just wasn't my life to live. Therefore, I have no major personal regrets. HIV is as much a fact now as my age and my eye color. Intrinsically, things, events, and illness are neither good nor bad, just opportunities for growth!

In 2011 (in the developed world) we have left the era of AIDS. We are however still very much in the age of HIV. There is an entire generation that did not live through the dark days of AIDS. Some of them have little or no fear of HIV: "You just take a pill every day." Or, they might consider it a part of the landscape: "I'm going to get it eventually, so I might as well have fun while doing it."

My message is a mixed one: one can have a wonderful life living with HIV. I want people with HIV to not feel stigmatized, while I want those who are negative to remain so. Therefore, I speak out as an AIDS elder.

I am fortunate. I have the privilege and honor to work with men and women facing their biggest challenges, and that helps keep me awake to the importance of life now in the present. I still get caught up in petty problems and vanities, and my life is filled with constant reminders: Does this really matter? Will I even remember this in a year?

I would love for the younger generation to learn their lessons from another teacher. Being HIV-positive is to be avoided.

In any moment of joy -- and I have many -- I know that my entire journey, including AIDS, familial tragedies such as murder and suicide and overdose, heartbreaks and triumphs, all of it is part of the exquisite beauty of the present. I cannot be who I am without any of it.