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.
The Journal of Gerontological Social Work is publishing an article I’ve written entitled “A Shrinking Kind of Life: Gay Men’s Experience of Aging with HIV.”
Here is the abstract:
More people are living with HIV into midlife and older age. Although increased longevity brings new hope, it also raises unanticipated challenges—especially for gay men who never thought they would live into middle and older age. Middle-aged and older people are more likely to face multiple comorbidities, yet many lack the necessary supports to help them adapt to the challenges of aging with HIV. This article presents the findings of a qualitative study developed to explore gay men’s experience of aging with HIV. Multiple in-depth exploratory interviews were conducted with 15 gay-identified men living with HIV/AIDS over an 18-month period. A systematic strategy data analysis consistent with grounded theory revealed a pattern of subtle adjustments to living with HIV that resulted in diminishing circles of social support and social involvement. This dynamic is referred to as “a shrinking kind of life,” an in-vivo code built from the participant’s own words. Four themes from the research (physical challenges, a magnitude of loss, internal changes, & stigma) are discussed. Conclusions include recommendations for future research and implications for practice in the field. Practitioners knowledgeable of the factors that impact their social involvement can empower gay men through individual and group interventions to confront a shrinking kind of life and define for themselves what it means to optimally age with HIV.
Taylor and Francis has given me 50 free downloads. Just click on the link above to access the full article.
The night of the SCOTUS rulings on DOMA and Prop 8, my husband and I celebrated with dinner at Brooklyn Fish Camp, the restaurant we stumbled giddily into after filing for domestic partnership in 2007. (We subsequently married in San Francisco during the window period of 2008.) Announcing our federally married bliss we struck up a conversation with other diners seated at the bar. As a straight couple quietly exited our waitress told us that they had paid our bill. We caught them and had a nearly wordless exchange, the two of us trying to express our gratitude while she with tears in her eyes conveyed her deep understanding of the day’s significance. Stunned by their generosity we neglected to ask their names. For two middle-aged gay men so accustomed to defending the legitimacy of our love, the evening confirmed that we will need time to adapt to the realities of acceptance.
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 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.
I just got back from a wonderful trip to visit friends and family in Paris. It had been a long time since the last time I was there. 25 years. (It is hard to even conceive of that amount of time passing.)
While I was there I tried to live in the present: Take in the architecture; soak up the culture; sit in the cafes and experience the life of this timeless city. Underneath the surface, and without my conscious awareness, my mind was in the past. I was fantasizing about a life trajectory if I had never left Europe 25 years ago. And, those thoughts merged so seamlessly with my experience in the present that I didn’t even know that they were affecting my experience in the moment.
When I got back to New York, I went to see the film, “Midnight in Paris.” The spectacular cinematography transported me back to vacation. IMDB describes the film as follows: “A romantic comedy about a family traveling to the French capital for business. The party includes a young engaged couple forced to confront the illusion that a life different from their own is better.”
I identified with the main character who struggles with a tendency to live in an idealized past.
The film reminded me that living in the past is a theme that emerged from my research on aging with HIV. Throughout my interviews, the men talked about the past. In “Aging with HIV” I introduced you to “Paul” (not his real name.):
Entering Paul’s apartment is like going through a time warp. The walls are filled with photos of Paul and his friends in their twenties and thirties. All of his artwork and decorations are from the 1970s and 1980s. Even Paul’s moustache, his clothes, and the way he styles his hair are reminiscent of the clone look of the 1970s. During an interview with Paul I drew a line with one end in the past and one in the future and asked him to point to where he was. He said, “Right there. Oh, yeah, I’m in the past.”
After interviewing Paul, I saw more subtle examples throughout these men’s lives of the conflict between living in the past vs learning from the past. Living with HIV can reshape one’s sense of time. Life can feel as if it stopped with diagnosis, or the death of friends. And memories of a fun-filled past can be comforting when illness and age make life seem dull.
There is a lot to learn from the past. The act of reminiscing can help us live more fully in the present. When we reflect on our past we remember people and places that were important in our histories, and we remind ourselves of aspects of our identity that have been lost over time. Even painful emotions like loss and regret can be an important learning tools as we live in the present and look toward the future.
The challenge is to be able to learn from the past (reminisce and have our feelings) without living in the past (getting mired in regret or fantasy) in a way that prevents us from living our lives fully in the present.
The drift into the past can be quite subtle and sometimes we need a gently push to return to the present. One question we can ask ourselves is: How can these memories, thoughts and fantasies of the past help me with the issues I face today?
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.
As a kid, I occasionally overheard my mother talking to herself doing chores around the house. She was a single parent and often came home from a day’s work to an evening of responsibilities. One phrase I remember her using as she opened bills or couldn’t get a stain out of the carpet was, “This too shall pass.”
I came to understand that she was reassuring herself that whatever challenges she faced, no matter how taxing or mundane, would be resolved. I didn’t know that she was quoting the Sufi poets who believed that all material conditions, positive or negative, are temporary.
Today, I thought of my mother and the phrase she uttered when overwhelmed. After several days of rain, I just couldn’t get myself going. I knew I had chores to do this morning before I went to work, but had no energy to accomplish them. So, after a great deal of procrastinating, I dragged myself onto my yoga mat and did a few sun salutations.
In the middle of my routine, stretching my body, breathing deeply and regularly, my mood lifted. And, quite by coincidence, but still remarkable, the sun came out.
In my psychotherapy practice I often counsel people who are afraid of talking about their anger or reliving sad memories. They fear that they will get mired in those “negative” emotions. I tell them, that in my experience, feelings come and go. Sadness, deeply felt, passes, and leaves room for joy. And, happiness too can’t last forever. When we try to hold onto any feelings we set ourselves up for disappointment (and sometimes compulsions and addictions.)
But, good advice is sometimes easier to give to others. So, I’m writing this entry, in the hopes that I can remind myself that no matter what challenges we face (large or small) they will pass and if we remain flexible we will be able to withstand our current experience until the next one arrives.
I walked past the elementary school and saw the teachers taking the kids out of the class to explore the neighborhood. I remember the feeling that started to set in this time of year. The weather is getting nicer; The school year is coming to an end; And, I just wanted to get outside and play. In the springtime I am reminded of the need to take time out of my schedule to play.
Play time is not just a luxury. Recreation is an integral part of a healthy lifestyle. And, being able to play is one of the 10 steps to optimal aging with HIV. Playful activities can keep us socially involved as well as physically, intellectually, and creatively stimulated – all of which can counteract stagnation and increase adaptation at midlife and beyond.
There are many opportunities for finding play time:
Organized sports can be great forms of play, when they are not taken too seriously, and are not beyond your physical capabilities. When you are involved in a strenuous sport you get much needed exercise and increase your endorphins. In team sports, such as basketball, you stay connected to others. You can play golf alone or with friends. And, bowling is a lower energy sport that can still work up a sweat. Even if you are not an athlete, you can find a sport that isn’t too intimidating. Jogging, rowing, bicycling, and kayaking are all independent sports that have meditative qualities. Less conventional sports such as ballet, ballroom dance, fencing, and yoga are all forms of play. Games such as cards, scrabble, and board games have the same opportunities for competitive activity, intellectual challenge, and socialization without the strain of physical activity.
Creative activities can be done alone or with others. Making art, writing, woodworking, and gardening are all creative activities in which you participate in making something new. Do you enjoy listening to music? Dancing to rock and roll or drums? Cooking, needlework, collecting? You can take a class to learn a new hobby or skill. Join an improvisation group. Care for animals. Any of these activities can broaden your sense of creative play.
If you need help developing your ability just spend time with a child. My biggest pleasure is watching a child who has just opened a present make a toy out of the box it came it. You can invent play from your imagination, too.*
There are many social clubs for gay and HIV positive people that offer ongoing recreation activities. Check out the list of resources on this site to find an organization near you where you can participate in an event or join an ongoing program. You can also take a retreat with organized activities. Blogger, Mark S. King has compiled a list of vacations and retreats (some at low cost) for people living with HIV. Follow the link to learn more.
Now, I’m going to listen to my own advice and get outside to enjoy a bit of this day!
*excerpt from Aging with HIV: A Gay Man’s Guide