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.
Last week the American Academy of HIV Medicine, the American Geriatrics Society and the AIDS Community Research Initiative of America (ACRIA) published recommended treatment strategies for clinicians managing older patients with HIV. This is a major step in the medical treatment of HIV recognizing the unique and complex medical issues faced by this growing population. It is the first time best practice guidance has ever been developed for HIV practitioners and other health care providers who treat diagnose and refer older patients with HIV disease.
The report contains specific guides provided for Diabetes, Cancer, Hypertension, HepC etc. as well as HIV testing and Sexual Health and more. While it is directed at practitioners, people living with HIV may want to familiarize yourselves with the recommendations and discuss their relevance to your care. The full report is 76 pages, but an executive summary outlines the treatment recommendations in each area.
To view the overview, executive summary, or full report go to the American Academy of HIV Medicine webpage.
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.
Earlier this week Jane Brody published an article in the New York Times on the difficulty distinguishing mild cognitive impairment from the effects of normal aging. She explains, “While most people experience a gradual cognitive decline as they get older (only about one in 100 lives long without cognitive loss), others experience more extreme changes in cognitive function, the neurologist wrote in The New England Journal of Medicine in June. In population-based studies, mild cognitive impairment has been found in 10 percent to 20 percent of people older than 65, he noted.”
For people living with HIV over the age of fifty, cognitive impairment is a serious concern, and many wonder if occasional memory lapses and subtle forgetfulness are signs of normal aging or the first stages of serious cognitive impairment or dementia.
The article explains how diagnoses are made and strategies one can use to preserve cognitive functioning, including: medical management (when appropriate); lifestyle changes (such as reducing cardiovascular risk and blood sugar); practicing cognitive improvement exercises; and physical exercise.
To read the full article go to the New York Times.
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 June 24th the New York State legislature passed a bill legalizing marriage for same sex couples. This was a momentous occasion for New Yorkers, of which I am one. The gay pride parade, held the next day, was the largest attended in its history, and everyone I spoke to agreed that the tone of the day was exuberant throughout.
On the day of the event, my mind took me back to another human rights advance in the City’s history – the passage of New York City’s gay and lesbian rights bill in 1986. The law protected gay and lesbian New Yorkers from discrimination for the first time in the city’s history.
I was a 19-year-old student at NYU. Our gay and lesbian student union was very involved in the issue. I remember we had been at an event the day before and stayed up late that night making posters for people attending the vote. The next morning, I was assigned to “person” the phone in the office. When I arrived I found that our officers had spent the night. So, I made them coffee and sent them on their way. I got the usual calls during the day – students asking about our programs or wanting to talk to someone about coming out. And, then I got the call: “We won!” It was so exciting. Even though I was in the office, I felt as though I was part of something really big. And, later that day the New York Times had a photo of the students from the NYU gay and lesbian union on the front cover of the paper.
I remember my parents talking about where they were when Kennedy was shot and what they were doing during other major events of their youth. For me, the passage of the NYC gay and lesbian rights bill was that event. I saw, first hand, the power of activism. My rights, and the rights of people like me mattered. And, it changed me. I felt a little prouder.
Yes, the passage of the same sex marriage bill in New York State is an important human rights victory. LGBT people deserve full equality under the law. The right to marry is an integral step in the promotion of equal rights for all.
But, it is also something more. It is a message to LGBT people everywhere that we matter. That the fight against homophobia in society, and the struggle that many of us must continue against the homophobia internalized within ourselves, is a worthy battle. Each step we take, whether it is a victory or a set-back, reminds us that we are worth fighting for.
People wished me “Happy Pride” all that week. And, I feel it. I am a little bit prouder, now.
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.
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