The latest edition of the journal, Achieve, is devoted to HIV over fifty. I contributed on stigma entitled: Managing the Triple Threat: Strategies for Older Gay Men with HIV. Here is the link to the publications page where you can download volume 7, number 3.
Today the United States Supreme Court struck down the Defense of Marriage Act (DOMA) paving the way for gay marriage. I am exhilarated and so deeply moved that it will take me some time to process the significance of this event. I would like to write a few immediate thoughts as I take in the ramifications of this day.
On a national level the ruling raises the concerns of LGBT people to their rightful place in the discourse on human rights. And, on a very personal level, it means that my marriage is now federally recognized.
Yet, there is so much more.
I am deeply grateful to Edith Windsor. In fighting for her rights as a married woman, she took up a cause that will have implications for all of us. I applaud all the activists who participated in this case and who are fighting for LGBT rights in so many other battles. There are too many people who continue to experience the pain of abuse and oppression.
When I heard the news my mind went immediately to my lover who died of AIDS in 1991. He participated in changing his world for the better and I think he would have been so proud to know how far we have come. There is a long history of activism in our community that has led to this event, and I want to honor those who came before and are not here to reap the rewards.
In my psychotherapy practice I often have to help people through feelings of sadness that accompany a joyful event. They wonder why they should be crying when they are so happy. I let them know that it is normal to feel grief when we get what we want. We are encountering the feelings of loss that have been kept at bay when we couldn’t have what we were longing for.
As with any change, including changes for the better, there will be a period of adjustment. For many of us this ruling will create shifts in how we relate to ourselves and others. We must reexamine the walls that we created to protect ourselves from the homophobia of our pasts. We might find that defenses that were necessary at the time may no longer serve us. As someone I spoke with today said so eloquently, “I need to learn how to be accepted.”
I feel such love for my husband. I have to wonder whether the lack of recognition of our marriage might have affected the quality of our relationship and how this judgment could offer us an opportunity to deepen the commitment we have to one another.
I’m glad to be alive on this momentous day, to learn and grow. Lets keep the conversation going and help each other adapt to the changes ahead.
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.
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.
Mark S. King attended the 2011 ADAP Advocacy Association conference July 5-7 in Washington, DC and reviews the event on his blog.
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.
Once again, Stephen Karpiak, PhD, has forwarded me the latest research commentary from ACRIA (AIDS Community Research Initiative of America). In a review of the literature, Karpiak finds that the data is “conflicting and inconclusive.” The panel of experts concludes: “The jury is out as to whether HIV alone is a significant factor contributing to cognitive dysfunction or dementia. There are likely many other factors, some of which might be controlled to prevent or ameliorate cognitive decline.”
I have met many midlife and older people with HIV who are worried about dementia. While many people living with HIV may evidence cognitive impairment on tests, few have the diagnosis of dementia. There are many variables that may effect mental functioning, including: depression, socioeconomic variables, drug toxicities, trauma, other illnesses, and diet. HIV alone may very well not cause dementia and there may be many other treatable c0-factors that influence cognitive functioning in people aging with HIV. As new research on this issue emerges we will, hopefully, get more clarity on the relationship (if any) between aging with HIV and mental functioning.
In her blog post, Nurse Practitioner Bethseba Johnson discusses her path from work with the elderly to people living with HIV. I enjoyed reading her story and related to some of her experiences.
In the early nineties I went back to school to get my Masters in Social Work. Before graduate school I had worked at the New York City Department of Health, Office of Gay and Lesbian Health Concerns and the New York City AIDS Hotline and had been an HIV educator and activist. I had also just lost my life-partner to AIDS and had decided to dedicate my career to social work and HIV.
So, one day while at my job at the AIDS Hotline, I received a call from Hunter College to tell me that in the coming fall I would be Interning at SAGE (formerly, Senior Action in a Gay Environment.) “Old people!” I thought, “I don’t want to work with the elderly!” I had a million reasons why this would not be a good placement for me: I was an activist, work with the aged is boring. I was a very young man, myself and couldn’t relate to older people. I wanted to do HIV work. Looking back, I know now that I was afraid. I was intimidated by the idea of working with older people, and thought I had little to offer them.
I look back on that year with a deep sense of gratitude – to my supervisor, Arlene Kochman, to the staff and volunteers at the agency, and to the clients I worked with. I think I got back far more than I gave. The work was far from boring. I was constantly busy – doing home visits, helping people get entitlements, doing individual counseling, running support groups. I learned so much about aging in general: the physical, emotional and social changes that accompany growing older. And I grew to appreciate the importance of the gay community for that generation of older adults. I was privileged to hear the life stories of gay men and women who were part of the early gay rights movement. I observed their strength and resilience in the face of discrimination and abuse. And, I saw the impact that stigma can have self-esteem and social involvement – a potentially damaging combination for older adults. I received training on end of life care. And, I learned a strengths-based approach to help people make the most of older adulthood.
Because of my background in HIV education, I was assigned several older gay clients who were living with HIV. Eventually, I took over a support group for people living with HIV. Ours was one of a handful of groups for people aged fifty and older. Many men came to the group, because they felt like outsiders in HIV-support groups for younger men, they couldn’t talk about HIV in mixed settings and they wanted to be in a group of their peers. This was before the era of Protease Inhibitors, so much of our time was spent discussing mortality. I continued to run this group for several years after my placement ended. During those years, we lost several members, and the group was a supportive environment (for me, and, I believe, for the members) to deal with the losses we were experiencing inside and outside the group. But, the group wasn’t just about death, it was was about life, and each week people brought in their concerns, challenges, achievements and hopes, and they knew they could talk about whatever they needed, that they wouldn’t be judged and that people would understand. It was through this work that I developed my appreciation for the healing power of group work.
My experience at SAGE was a great foundation to build a career in social work and psychotherapy. And, now that people are living with HIV into midlife and beyond in increasing numbers, I appreciate my early training in the intersection between HIV and aging even more. By 2015 over half the number of people living with HIV in the US will be aged 50 or older, and we will all need to educate ourselves on the realities of aging with HIV.
To read Bethsheba Johnson’s story go to The Body Pro.