September 7, 1999
I remember a time when "living with AIDS" was a radical phrase. It took courage for anyone to claim that we were living with AIDS when I was first diagnosed with KS and lymphoma in 1984. But there were people who supported us in that concept, and we learned that we could indeed live with AIDS, even as we faced death.
Around 1989, I remember the Rev. Robert Pierce, who was living with AIDS while pastor of an MCC in Florida, publicly state that he wanted not just to live with AIDS, but to live through AIDS. Sadly, he died a couple of years later. But I witnessed his hope carry him through a full life until the end.
What a miracle that now there are many people who have indeed lived through AIDS: people who, like me, were critically ill with the complications of HIV and AIDS; but who, through new treatments, excellent self-care, and great faith in the possibility, are now living healthy, active lives.
Now, in 1999, I want to take the concept even further. I now like to say that I am living beyond AIDS. So what does that new leap of faith mean?
For me, that means letting go of my administrative, pastoral and creative efforts in AIDS ministry. It means rejoining life as if I'm going to live a normal life span. It means living the lessons I learned from facing death from AIDS. And one of the most important of those lessons is to truly appreciate and enter the present moment. Many of my present moments no longer include AIDS.
I know that in many ways, I will always be called upon to serve, to help others, and to share my "experience, strength, and hope." Living through AIDS has given me a richness and depth of experience, a new knowledge of what strength can mean, and a confident hope in my faith in God, all of which must be shared. I find myself now sharing that with people who are not living with AIDS, but people who are facing a myriad of life's challenges, from the everyday to the extraordinary.
So I'm living beyond AIDS now. Sure, I take a handful of pills a few times a day, have regular doctor's appointments, and read AIDS updates and news with interest.
But I'm healthy, with an undetectable viral load, CD4 counts in normal range, and my lymphoma and Kaposi's sarcoma in remission for over 14 years. My life is focused on my work with the Gay Men's Chorus of Los Angeles, my secular job in public relations, and discovering who I am apart from AIDS ministry.
I recognize that there are still very important issues to face related to AIDS. I began writing this column on the day that the LA Times reported HIV complacency among gay men, and the resulting resurgence of unsafe sex. This concerns me greatly. But I know there are others there to handle it. New life is important to any organization or movement, and I'm confident that the new generation of HIV/AIDS activists will do it differently and better.
I'm very grateful for this opportunity of the last few years to write for The Body. I'm grateful for the support and encouragement I've received from the staff at The Body, particularly Jamie Marks, who has been a cheerful and confident friend throughout.
I'm especially grateful for the gift of interacting with so many of you through my Question & Answer Page, and through the personal correspondence you have sent. Unfortunately, with the volume of correspondence and questions, I haven't been able to personally answer each and every question and concern. To those who waited in vain for a reply, I apologize. I trust that each of you have been able to find the answers you sought through my responses to others' questions, or through other avenues.
I'm grateful from all I've learned from answering your questions, from writing my reflections, and from the opportunity to share my story.
If I have anything to teach after 17 years of living with HIV and AIDS, it is this. Faith works. Laughter works. Responsible, mature self-care works. Joy works. Staying in the moment works. Music works. Love works. As more and more people learn to use these and other tools, there will be more and more people who not only live with AIDS, but live through AIDS, and live beyond AIDS.
From one who's done it, AMEN!
©1999 by the Rev. A. Stephen Pieters