When a woman with HIV realizes that she’s lived longer than she ever expected and begins to rebuild her life, that’s an aha moment.
When a doctor and patient sort through the complexities of HIV, the medications used to treat the virus, and the realities of aging to identify an effective treatment, that’s an aha moment.
When a group of gay men acknowledge how the AIDS epidemic has impacted every aspect of their lives and start the healing process together, that’s an aha moment.
When a politician recognizes that AIDS is not over and funds programing to meet the challenges of HIV and aging, that’s an aha moment.
In the past two years since the release of Aging with HIV I’ve met many amazing men and women who are living with HIV longer than they ever expected. Throughout the country we’ve created conversations that have expanded our understanding of aging with HIV. Together we’ve exchanged information, shared experiences, processed feelings and built communities. It’s been a real learning experience filled with aha moments.
That’s why I’ve decided to start the AHA Project (Action for HIV and Aging) to facilitate discussions that empower people to define for themselves what it means to optimally age with HIV.
In the coming weeks agingwithhiv.wordpress.com will become ahaproject.org. I appreciate your patience as I develop the site to reflect its developing mission.
In a recent article for the American Society on Aging, Nathan Linsk, considers the issues faced by older adults as the significant challenges for the fourth decade of HIV. The article discusses the physical and emotional challenges long term survivors face as they live longer than ever expected. Linsk summarizes recent research developments in the field, offers links to articles, and lists resources available.
To read the article go the the ASA website.
It has been an exciting year since the publication of Aging with HIV: A gay man’s guide. I have met a lot of great people around the country and overseas who are keeping conversations going about the challenges of aging and how people living with HIV can define optimal aging for themselves.
There have been many developments in the field: SAGE developed a policy paper on Aging with HIV; There was an historic White House meeting on HIV and aging; Interesting findings were discussed at the Baltimore Conference on HIV and Aging, the SAGE constituent conference and the 2nd Annual Conference on HIV and Aging in Austin; The HIV and Aging Group built community on Facebook; The National LGBT Aging Resource Center was created; Clinical Guidelines for Medical Management of HIV and Aging were released; and Caring and Aging with Pride published its report on LGBT Aging in the United States.
Aging with HIV was discussed in print and on the web: I talked with Mark S. King on MyFabulousDisease.com; The Philadelphia Gay News; The New York Times; Edge Magazine; And, the book was reviewed in The Bay Area Reporter, Lambda Literary Review, and The Gerontologist. And, I’m looking forward to the publication of an interview with Neal Broverman in next month’s Advocate.
It’s been quite a year!
I am looking forward to keeping you posted on new developments in the field. Aging with HIV is an expanding field. I am hoping that readers continue to share insights, information, and personal stories with me, so that I can pass them on to the community and keep the conversation going in 2012.
In today’s New York Times Austin Considine writes about gay marriage and the bittersweet victory it represents for men in midlife who have lost loved ones to the AIDS epidemic. Considine interviewed several gay men who share their feelings about this previously unimaginable day in New York history. There is happiness and rejoicing, but also sadness and grief. I talked with Considine about my experience and how even successes can trigger old feelings of loss. I think that many gay men will relate to these men and find support in their stories.
Do you remember, remembering? When we used to take a moment of silence at gay pride? When every meeting we attended on HIV began with an acknowledgement of those that were no longer with us? When every World AIDS Day we talked about AIDS, and the overwhelming impact it has had on all of our lives?
Did you take that time today? I’m not sure if I would have if I weren’t writing this blog.
But, as soon as I stop what I am doing to reflect on World AIDS Day. In less time than a blink I am flooded with memories. I remember Roger who died in 1991, five years before Protease Inhibitors would reshape for so many what it meant to live with HIV. He took so many medications, only in the end to stop everything and attempt to fight his illness with the power of love. I remember Michael who died the following year. I was 24 and I think he was a year or two older. Just a child. But, I didn’t know that at the time.
I remember so many lovers and friends who are no longer here. So many strangers on the street, whose faces I will never see again. A generation wiped out by the epidemic.
And, still, I remind myself that it is not over. That people all over the world are getting exposed, becoming ill and dying from HIV-related illnesses. That so many friends who have survived AIDS, continue to deal with heart disease, cancer, diabetes, lipodystrophy, cognitive challenges, and other HIV-related (or not HIV-related?) illnesses.
I consider the new challenges that accompany living longer than expected – Rebuilding lost careers, developing new social circles, managing survivor guilt, living through loss, and adapting to aging – to name just a few.
I reflect on the impact the epidemic has had on all of our lives. The losses, and the strategies we developed to cope. The opportunities that we could not avail ourselves of and the strengths we acquired fighting (literally and figuratively) to care for each other. And, I recognize the scars that I acquired from surviving those battles – how they are now a part of my constitution, just like my family and my sexuality shaped my identity growing up.
People sometimes ask me, “Why should I remember those things? They are just going to make me sad.” There are so many responses to that question. First, I say, “If just thinking about the past makes you sad, then you were probably sad already.”
Avoidance is a problematic coping strategy. When we don’t deal with our feelings they tend to get expressed in other ways. Just like a dammed river creates flooding in other low lying areas, unacknowledged feelings can leak out and create problems in other areas of our lives. When we know what we are feeling, we can choose what we want to do with those feelings.
I have seen so many reactions to grief: sadness, fear, excitement, guilt, anger. In my work I help people to have all their feelings. I’ve found that feelings tend to come and go. Happiness, sadness, deeply felt, still passes. Resilience means acknowledging losses without getting mired in grief.
Rituals help us to make our feelings tangible. Lighting a candle, visiting a significant place, talking with friends, writing a blog are gestures that offer us the opportunity to mobilize our feelings into actions that honor ourselves and those that we remember.
Reminiscing can be healing, especially as we age. Our memories connect us to the past, reminding us of who and what were once important to us. We can draw strength from people and experiences from our past, but only if we can allow ourselves to remember them. Reminiscing offers an opportunity to redefine ourselves in the present. Our recollections contain tools that we can use to manage upcoming challenges.
The men I interviewed for Aging with HIV talked about how living with HIV went from being a trauma to become “a part of our lives.” The landscape of AIDS has changed for all of us, and we can each benefit from taking the time to reflect this World AIDS Day.
In his blog for POZ magazine, Scott Daly reviews his experience of aging with HIV in the third decade of the epidemic.
To read the article go to: POZ magazine.
In his Op Ed for the New York Times, “The Death Sentence That Defined My Life,” Mark Trautwein shows us how not dying of AIDS “on schedule” has helped him learn “not to live life on one either.” His story offers insight into the financial, social, and medical challenges of living longer than expected.
My letter to the Editor, published yesterday by the Times discusses the delicate, and sometimes paradoxical, balance between finding your own schedule and getting back on track with life that accompanies aging with HIV.
You can follow the links to read both.
Linda Dahlstrom article for MSNBC tells one man’s story of aging with HIV. It is a touching and personal chronicle of the path so many gay men have had to travel from the trauma of diagnosis, living through innumerable losses, to facing the unanticipated social, emotional, and physical challenges of growing older.
For the full article go to: msnbc.com
On Memorial Day, the New York Times published an article by Dr. Lawrence Altman remembering the early AIDS epidemic of 30 years ago. His article poignantly reminds us of those desperate days when there was little scientific knowledge, and a great deal of misinformation, fear, and stigma. He memorializes those who died in the early years, for whom “the wait for effective treatments — a decade or so after the first reports of the disease — was far too long.” His report acknowledges how far we have come, yet does not deny the continued gaps in our knowledge and lack of progress made in developing an AIDS vaccine.
For me the timing of the publication of this article resonates strongly. The AIDS epidemic of the 80’s and early 90’s was a war that needs to be memorialized. A generation was lost to the disease and those that remain are scarred emotionally by the battle.
While it raises painful memories, Altman’s article offers us an opportunity to remind ourselves of what we have lived through, and to remember the friends that we have lost. I believe that the ability to reminisce is an integral part of healthy aging. This kind of life review allows us to learn from the past, not live in it, to draw on past experiences for life lessons and guidance to help us cope with challenges in the present. I am grateful to Dr. Altman for his work in the field of AIDS and for sharing his experience.