May 2, 2011
Gay minister (Love Alive International Sanctuary of Praise NYC), believer, positive for 24 years.
June 5, 2011, marks 30 years since the first published accounts of what
became known as AIDS. For this anniversary, we asked 31 long-term
survivors who’ve appeared in POZ what
moves and sustains them and whether they think they’ll live to see a
cure. Why 31? One for each year, and one more for good luck.
What’s the most helpful thing anyone has said to you over your years living with HIV?
Over the years, the most helpful thing anyone has ever said to me was, “How may I be of help to you?” The key behind the gesture was its sincerity.
What change or development in your treatment for HIV has most affected your life—for better or worse?
The development of drugs for treatment, for at the time of my diagnosis none existed. AZT was being tested. I was told that death was imminent soon. In terms of what has been the worst change, I can’t really think of any. There have been moments that I felt there was no “worse” imaginable. However, once I mustered past the illusions of fear the mind sometimes projects, I was able to stand long enough to witness that in reality, it only became better. Even in 1999, when I was told there was irreversible damage to my liver from medication, believing the best kept me strong. And things turned out so well, it has been called a miracle. I learned in the long run that stress was making me sick, not HIV.
What is your refuge from thinking about and dealing with your health?
My refuge lies in the sustenance of my faith. My sanctuary (the place where Spirit and I dwell, not the physical building of church, synagogue or mosque) is of the utmost importance to me. Maintaining a strong spiritual base gives me the ongoing ability to see that the world I live in consists of more than just me and my issues. The totality of my life is not wrapped up in and around me, for no individual is an island. I have learned that the same way that I stand in need of help, healing and a miracle, many others occupy that same space. Taking a moment away from my own private pity party to help someone else, or becoming that which I need, provides me great healing and empowerment.
What has been your major economic challenge since testing positive?
Recovering from the “last days” mentality—that is, living as though there were no tomorrow. When I received my diagnosis by certified mail, the military doctor told me I had six months or less to live, and for a little over five years I lived like it was true. This mentality created a financial nightmare. It was a time of “I don’t care. I will not be here to worry about it.” Of course, facing reality was the curse that tagged alone with the blessing of survival. Wisdom, the result of taking responsibility for my actions and facing my mess, has taught me that I cannot do much about yesterday, but the plans that I make today (financially) will be my guiding rod and compass for tomorrow. Financial counseling, coaching, workshops and training have made a major difference. There are so many resources to tap into. If we seek them, we will find them. Restoration is possible, even in financial disasters. If I can recover, believe me, anyone can!
What one thing has most aided your survival, and how difficult is it to overcome stigma?
Along with my faith in God, which has richly increased within the experience of my HIV journey, my survival has definitely been aided by the wonderful support of family, church, health care providers, friends and the community at large. This combination of love (filled with correction), support and engagement has been key in my continued health care maintenance and the continuum of overcoming stigma. At the same time, my facing stigma in all its ugliness is making me stronger as it is helping many others confront it too. Many are HIV positive, and more are not.
Do you think there will be a cure in your lifetime—and if so, will you benefit from it?
I am very optimistic that a cure will manifest in my lifetime and that I will benefit from its discovery. Why? Because I have been planting (working and volunteering in research and community for over 20 years), and because the Creator has already surpassed so many of my expectations during the past 30 years, that a cure really seems like a small milestone for Spirit, compared to what I’ve already witnessed.
What advice would you give to someone newly diagnosed?
To the newly diagnosed brothers and sisters: As much as you may feel that this does not help you right now, I plant this seed of hope in you with love, as others planted and watered me. Know that I can relate to desperation, uncertainty, fear, anger, heartache, loneliness and hopelessness. I am also a living witness that if you hang in there (maintain your treatment and make plans to live) and don’t give up, it will get better.
I’ve used William Ernest Henley’s poem “Invictus” for encouragement from time to time—I learned it in my college days. It begins, in part, with, “I thank whatever gods may be/For my unconquerable soul,” and it ends with, “I am the master of my fate/I am the captain of my soul.”
to read this article as it
appeared in the June 2011 issue.
read more of our "30 Years of AIDS" coverage.
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