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.
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.
Caring and Aging with Pride, the first national federally-funded project to examine LGBT aging and health, recently released a report of its findings. The study included a national community-based survey of over 2,500 LGBT older adults from diverse walks of life. This research provides a “historic new window into the health and lives of LGBT elders in America.”
The report is comprehensive and examines several areas of older people’s lives, including: Physical health, mental health, healthcare access, health behaviors, services/programs, HIV disease, and caregiving. From their intensive research this group of recognized scholars conclude that LGBT older adults are a “resilient yet at risk population.”
Some key findings illustrate the complex reality of LGBT aging in America. In the 88-page report a few statistics were particularly disturbing to me. Respondents reported high rates of loneliness, disability and depression, and fewer social supports than found in the general, non-LGBT aging population. Most had been victimized at some point in their lives, and many had been victimized multiple times, because of their perceived sexual orientation or gender identity. The participants reported significant barriers to accessing health care, including discrimination, receiving inferior care, and inadequate care from providers who they can not “come out” to or who are insensitive to LGBT issues.
Yet, there were findings in the report that point out the strengths of LGBT older adults. Many were involved in their communities and engaged in wellness, as well as physical activities. They were contributing members of their communities and have distinct networks of support consisting of peers, partners and friends. And, a large majority feel positive about belonging to the LGBT community.
The report concludes with a strong call to action that addresses steps we can all take in the areas of policy, services, education, and research.
I am excited and encouraged by the breadth and quality of this research. This project represents a significant step in addressing the needs of Lesbian, Gay, Bisexual, and Transgender older adults. The findings will help researchers, policy makers and service providers, like myself, do our jobs more effectively.
I encourage you to go to the Caring and Aging with Pride website to read the full report or to view the brief Executive Summary.
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?
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
I was recently asked by a reader of Aging with HIV: A Gay Man’s Guide to comment on the term the Lazarus Syndrome. This man, a gay man living with HIV in middle age himself, wondered why I don’t refer to the term in my book and why it seems to be out of favor in the field. I thought it was a very interesting question, and I thought I would share my response with you.
You raise a very interesting point. I, too, remember when the term, “Lazarus syndrome” was used by researchers, clinicians, people living with HIV, and the media. With the introduction of protease inhibitors some people with HIV found a new lease on life. (I say, “some” because I knew many people for whom these early advances were not helpful. There continued, and continue, to be deaths to AIDS and many experienced debilitating illnesses and side effects even with the advent of HAART.) But, people were surviving, and for many this felt, as you put it, “miraculous.”
I think the term, Lazarus syndrome, emerged to describe the experience of people who, spared from imminent death, had to concern themselves with the challenges of living with HIV. In retrospect, I see how using that term helped people put a name to the feeling that they had lived longer than expected, and, having identified themselves as survivors, could then set out to “live” with HIV.
I am not sure, however, what the “syndrome” was that the term was meant to describe. Doctors use the term “syndrome” to identify a collection of symptoms that occur together. I don’t believe a syndrome was ever identified in people living with HIV who had survived longer than expected. Perhaps, that is why the term has fallen out of favor. I have also read the term Lazurus Effect, which seems to me more accurate.
Instead of one “syndrome” we see several dynamics impacting people living with HIV. Concerns related to managing chronic illness, stigma, depression, financial concerns, survivor guilt, etc. have all been studied, but, as far as I know, there is not one clinical picture of people living with HIV.
And, now, a whole new set of issues are arising as people are facing the unanticipated challenges of aging with HIV – which is why I wrote the book.
So, my long winded response to your question is, yes, the Lazarus effect, is still a concern. However, in my opinion, the longer people survive with HIV and the virus evolves into a chronic illness, the term will only describe a part of an increasing complex picture of what it means to live with HIV.
Do you think the “Lazarus Effect” accurately describes the experience of living with HIV today?
In San Francisco this weekend I attended ArtSpan’s Open Studio tour of artists’ spaces and work in the Castro, Noe Valley, and Mission Districts. I had the opportunity to meet with many of the artists and talk to them about their work. These discussions reaffirmed my belief in the transformative and healing powers of creativity, and the important role that artistic expression has in gay aging and adapting to aging with HIV.
Gay themes were present in many works. There were sculptures, paintings and photography that depicted the beauty of the male form. Some of the work was homoerotic, and I thought of gay men’s reminisces of San Francisco in the 1970’s and 80’s when I saw the open, playful sexuality expressed in these pieces. Some of the artists included political statements about HIV or gay rights in their work. And, others were fun and campy reflections of the gay sensibility. When talking with the artists I learned about their craft and the dedication and commitment it takes to master a form and develop a work to completion.
The qualities found in creativity (playfulness, self-expression, empowerment, and mastery) can be utilized for continued growth in adulthood. When we engage in creative pursuits, as professionals or amateurs, we discover new parts of ourselves, engage with our environment in new ways, and express our unique perspective of the world for others to share. We can use our creativity to re-engage in life, to reconnect with forgotten parts of ourselves, to mourn losses or bridge former views of ourselves and experiences of others into the present. As one artist explained, “The work expresses itself through me. I am not sure what the final product will be until it emerges.”
For many gay men, HIV interrupted the flow of life. Caring for yourself and others, grief and anticipating mortality knocked you off course. In order to get back on track you need to review what you have come from, consider where you are, and determine what to take with you as you move into the future. Creative expressions, like painting, sculpture and photography (or music, dance, writing etc.) can free you up to experience yourself in a new way. If you make the time, you may be inspired by what emerges.
Please feel free to share your creative expressions on aging with HIV here or on the community page.
In a 2005 study of HIV over fifty Shippy and Karpiak described this group as having “fragile networks of social support.” The study participants had little support from family, and relied mostly on the involvement of peers, many of whom were living with HIV themselves. This finding concurred with earlier research on HIV over fifty. Study of this population found that people over fifty had a smaller network of social support, had fewer emotional and instrumental supports, were less involved in social service organizations, and reported less satisfaction with their support networks than younger people living with HIV.
A recent ACRIA needs assessment of older clients at GMHC conducted by Brennen, Karpiak, London and Seidel concluded that lack of support continues to be of concern. They found that the limits of social networks documented in earlier studies were also found in this population. And, that perceptions of support availability and adequacy were also low in this group. (A copy of this report will be available soon.)
There are many reasons why middle aged and older people would have less support than younger people living with HIV. As we age our networks of social involvement do get smaller. We tend to rely on smaller groups of more intimate companions. And, loss of family and friends can contribute to smaller circles of social support. Research in this area has also shown that middle aged and older people experience a double stigma of HIV and age and that anticipated stigma affects one’s interest in asking for help from friends, family, and service providers, including AIDS care organizations.
In my research I found that loss plays a significant role in limiting the support networks of middle aged and older people living with HIV. This generation of survivors have had their social networks decimated by HIV. Their peer group is gone, the very people they would rely upon to deal with the challenges of aging. And, many are reluctant to make new friends, for fear of opening themselves to further losses.
However, as this research implies, it is imperative that your social support system be strong to meet the challenges of aging with HIV.
To begin to assess the strength of your support network, ask yourself these few questions: How satisfied are you with your support network? Do you have someone to rely on if you were ill? If you needed someone to take you home from a medical procedure? To offer advice or assistance if you got caught in a financial jam? To talk to when you are stressed out? Is there someone you can lean on if you are feeling down? Someone who would drop everything if you needed them right away?
How often did you rely on the same person? What if they weren’t available?
Now, consider what steps you have taken to expand your social networks, to keep in contact with friends and family, to reach out to people, or make new friends. What gets in the way of doing more to build your social support?
Rebuilding, maintaining, and enhancing your social supports takes effort. In Aging with HIV: A Gay Man’s Guide I discuss strategies for developing a strong social support network. The book offers tools to assess the adequacy of your support network, strategies for overcoming obstacles to social involvement, and guidance on how to rebuild your networks of social support. Maintaining adequate social supports is an integral step to optimal aging with HIV.