On this site, you will find links to my published articles, particularly my monthly column, “Years of Living Precariously”, for A&U Magazine, my chronicle of the early years of the AIDS epidemic. You will also find other articles, radio broadcasts, podcasts, and video performances.
To access all “Years of Living Precariously” chapters (each about a 6 minute read), type “aumag” in the search box. It’s best to start at pt. 1 (“Last Dance”) and work your way forward. Then you’ll be all caught up until the next installment! 😎
Please feel free to comment and share, if you feel moved to do so. Comments are always welcome! And thank you for reading.
On this very evening, 53 years ago, two men walked on the surface of the moon for the very first time. I was 11 years old, and a camper at Camp Mar-Ven in Wellfleet, Massachusetts, on Cape Cod.
The significance of the event was lost on us pre-pubescent youth, but we knew it must have been one of those “important events that we will always look back on and remember where we were”, because all of the campers were let out of our bunks, at what should have been “lights out”, and we were ushered in to the rec hall, each wearing our pjs, where a tiny black-and-white TV had been set up. The reception was so poor that someone had to stand next to the TV and continuously adjust the “rabbit ears” that served as the television’s antenna.
Campers and staff alike sat cross-legged, or sprawled, across the floor, in rapt attention of the event that was before us. I remember several of the campers and counselors and staff members. My cabin was particularly challenging, with juvenile delinquent Mitch, obese and bullied David, sensitive me, and my best friend, Doug, on whom I secretly had a crush, even though I was “dating” his 10-year old cousin, Karen. My bunk’s CIT (counselor-in-training), Jimmy, would comb his pubic hair in front of us. Which was bizarre, but, of course, pretty impressive to an 11-year old gay boy in-the-making, who was just beginnng to sprout hair in the proud places.
What I remember most about that night in 1969 was not the moon landing itself, but of many of the details surrounding our special dispensation to stay up late. Huddled around the tv screen, like 1920s hobos around a garbage can fire, we campers, boys and girls, ages 9-15, shared a sense of camaraderie that night. We didn’t know WHY it was special, but we knew it was special, because we were allowed to stay up late.
And when the broadcast was over, and we all ambled back to our respective cabins – sleepy, yet somehow wiser in the knowledge of life beyond Earth, we knew that nothing would ever be the same again, and that tomorrow would be a more knowing, and less naive, day than today had been.
It was the dawning of the Space Age. And now our horizons were so much broader, and our responsibilities so much greater, than those on just this planet.
Of course, none of thus knew that then. Tomorrow would be volleyball, and arts & crafts, and play rehearsal, and color wars. And we would go back to picking on some, and idolizing others.
Life, for a bunch of campers on Cape Cod, would go on just as it had been going on all summer. And tomorrow would be another day.
The earth kept spinning. Yet everything had changed.
Re-posting this piece from last year, in commemoration of HIV Long-term Survivor Day, which is today, June 5th. As always, thank you for reading. We are still here.
A New Normal Part XIV of an Ongoing Chronicle of the First Fifteen Years of the AIDS Pandemic by Bruce Ward
One Sunday, about fifteen years ago, I was visiting my then eighty-five-year-old father in Massachusetts. We were sitting at his kitchen table, and each of us was silently filling our 7-day pill organizers, top for A.M., bottom for P.M.
That’s when I realized that, at age forty-six, I had been sorting pills much longer than my eighty-five-year-old father. In fact, the process of sorting pills had become completely normalized.
Over the years, I have continually had to adjust to a “new normal.”
I was diagnosed with what then was called HTLV-111, in 1986. This was ten years before the pharmaceutical treatment we all know now as the protease inhibitor “cocktail” changed the course of the epidemic, in 1996.
My T-cell count, at the time the marker for viral progression, was 217. A normal T-cell count is 500–1500.
I was living in New York City, and had already been working as an AIDS educator when I received my diagnosis in ’86. And it was my nature to take the bull by the horns and take immediate action.
Of course, there was little to be done at that time. I found a prominent doctor in the West Village who had a primarily gay practice, and was now steeped in all things AIDS. There were a few experimental treatments that worked in separating the virus from healthy T cells, but only under the microscope.
One such treatment was only obtainable through an underground AIDS guerrilla group, the PWA (People with AIDS) Coalition. It was called egg lipids. So, in 1986, I took the subway to their makeshift office downtown and purchased a huge jar of this viscous, peanut-butter-like concoction, paid them a lot of money, and brought it to my tiny fifth-floor walkup studio apartment in what was then the seedy area known as Hell’s Kitchen.
What you would do is scoop the substance into individual ice cubes, freeze the tray, and, in the morning, pop out one of the cubes, let it melt, and then spread it on a piece of toast, and eat it.
Although the egg lipids did nothing to increase my T cells, I continued to do my daily routine, and, in fact, went to purchase a second jar at the PWA Coalition. And left it on the subway. I probably cried on the street when I realized it. And never purchased it again. Around the same time that I was diagnosed in ’86 and taking the egg lipids, the first pharmaceutical drug was released into the market: AZT. I was working as an educator for the New York City Health Department AIDS hotline, and TIME Magazine came into our offices to photograph the operators for the breaking story. And so my photo appeared, twice—phone receiver to ear, a head full of curly brown hair—on the inside cover of TIME, and again, larger, accompanying the story, under the headline: “A Ray of Hope in the Fight Against AIDS.” I was the unwitting face of hope.
Two years later, in 1988, I began taking AZT, myself. It signified a new marker for me. Now it was serious. I held that tiny blue and white pill, imprinted with a unicorn—the symbol of Burroughs-Wellcome pharmaceuticals—in my hand. I took a breath and swallowed it. Little did I know that I would still be swallowing antivirals, every day, for the next thirty-six years. And counting.
But then that became the new normal. Until I became anemic. And then a constant plateauing of “new normals” would occur, every year and a half, when I was switched from one antiviral to another.
For the next eight years, I managed to stay just one step ahead of the virus, from AZT to less toxic drugs: ddI, ddC, 3TC, Fuzeon, and then in combinations, that all may have slowed the progression of the virus, but did not stop its inevitable and relentless gobbling up T cells like the PAC-MAN video game.
And then, in 1996, seemingly out of nowhere, came the protease inhibitor cocktail. For the past twenty years, I have been on the same treatment regimen. I’m not one of those who can just take one pill a day. I’m on what’s called “salvage therapy.“ And the double A.M./P.M. pill organizer became the next adjustment, the new “new normal.”
I still take three antiviral meds, twice a day, for a total of ten pills a day. That’s in addition to the meds for all of the other ailments that I’ve experienced as a consequence of living with the virus for so long, like checking off items on a grocery list: two lymphomas and chemos, a heart attack, six stents, both hips replaced, high blood pressure, neuropathy, diabetes, depression, and chronic fatigue. And pills and injections for all of them.
I have estimated that I’ve ingested approximately 100,000 antiviral pills, since that first AZT tablet, thirty-three years ago.
I am basically held together by duct tape and Elmer’s glue. And the miracles of modern medicine.
Some research has stated that the typical long-term survivor is 13.3 years older than our biological age. So I’d like to think that I’m not doing too badly for a 76.6 year old man. (I am, in actuality, 63.)
I’m always adjusting to a new “new normal.” It’s the only way to stay afloat. So, I continue to sort my pills, every Sunday—just as I did with my dad, at that kitchen table, fifteen years ago.
Because we all—all of us—learn to adjust to new normals, throughout our lives. And I want to stick around long enough to see what the next one will look like.
This is the daily pill box that I fill every Sunday evening.
This is the story of how it got that way.
Part XIV of “Years of Living Precariously”, my ongoing column in A&U Magazine, chronicling my experiences during the early years of the AIDS epidemic. This is the text version of the oral “storytelling” event that I posted here in June. As always, thank you for reading.
I was interviewed by the fabulous writer, Tim Murphy, for this article on HIV and diabetes. Please take a look, if you’re so inclined. As usual, my take on the issue is slightly different from the other interviewees. 😬
Back in the 1980s and 1990s, most people probably thought that HIV is one of the most dire and challenging conditions for an individual to live with. Until 1996, no HIV medications had yet been able to suppress the virus to the point of blocking its deadly progress; HIV was a near-certain eventual death sentence.
Then came the HIV treatment revolution of 1996 and beyond. Suddenly, health experts, care providers, and advocates were declaring that HIV would become a chronic disease, just like diabetes. In fact, there are many chronic, manageable illnesses out there. But type 2 diabetes, perhaps because of its prevalence (more than 37 million Americans have it, compared with the roughly 1.2 million who have HIV), swiftly became the disease that HIV got compared with the most.
We wanted to better understand the realities of managing both HIV and diabetes, so we spoke with medical providers—as well as several people living with both HIV and diabetes—about their experiences. We learned that, for many, HIV has become far easier to manage than diabetes, although there were some exceptions—especially among those who have lived with HIV for a long time and have struggled at times to get to an undetectable HIV viral load, or with the side effects that have come from various HIV meds.
Mark Watkins, D.O., a longtime HIV care provider at Philadelphia’s landmark LGBTQ-serving Mazzoni Center, says that about 25% of his patients with HIV also have either diabetes or prediabetes. (Prediabetes means a higher-than-normal blood sugar level that is not high enough to be deemed diabetes but still should be addressed via diet or exercise.)
“I can treat someone with HIV with a once-daily pill or even a monthly or every-other-month shot in the glutes,” he says. “But diabetes [also] involves a change of habits. People have to learn to [make healthier food choices], cut down or quit alcohol, and exercise. They also often have to measure their blood sugar two to four times a day and be on multiple medications.”
Diabetes treatment has come a long way in the past few decades, says Janet Lo, M.D., an endocrinologist at Massachusetts General Hospital and assistant professor of medicine at Harvard Medical School who treats many patients living with both HIV and diabetes. In addition to metformin, there is now a class of drugs called GLP-1 receptor agonists that not only control type 2 diabetes but, relatedly, can induce weight loss and reduce cardiovascular disease risk.
Yet despite all that, says Lo, diabetes generally remains very difficult to manage. Even with meds, doing so “requires a complete change in lifestyle, which poses challenges for many [people].”
The Challenges of Living With Both HIV and Diabetes
TheBody put out a call over various Facebook group pages asking people with both HIV and diabetes to share their experiences living with both conditions.
“Diabetes is [extremely] challenging,” says Diane Miller, 61, of Albuquerque, New Mexico, who was diagnosed with HIV in 1995 and type 2 diabetes in 1999. “[I have] to check my blood sugar four times a day, [take] insulin before every meal, [take] the long-acting insulin at bedtime, [check my blood sugar in case] I give myself too much [insulin] and my blood sugar [gets] low, and always have a carb at meals. [I have] bruises on my stomach from insulin injections, risk of heart and kidney problems, numb legs when I’m walking or standing, neuropathy in my feet—and I have to exercise—and now a little nausea in the morning after starting a new diabetes drug, Trulicity [dulaglutide].”
On the bright side, she says, she has lost five pounds since starting on Trulicity.
In San Diego, Michael Donovan, 61, who was diagnosed with HIV in 1990 and diabetes around 2000, says, “Diabetes is far and away more complicated [for me] to deal with [right now]. HIV was a challenge before protease inhibitors, when I was on full disability and couldn’t tolerate food, so I was ‘eating’ intravenously. But once I started the protease inhibitor in 1996, I returned to work within months and stayed until I retired in 2018. HIV has just been a matter of blood tests and an occasional change in meds—not much of an issue.”
Diabetes, on the other hand, “has been a constant battle,” he says. “I’ve been on a long line of meds over the years. Sometimes my [blood] sugar level is fine, and then for no apparent reason it suddenly goes crazy. This leads to a round of medication changes and occasional insulin use in addition to the constant monitoring of diet and exercise. There are daily needle sticks to test [blood] sugar levels and a meter that sends [the readings] directly to my doctor. So it’s far more intrusive.”
For William Carter in Philadelphia, 57, who works part-time recruiting other people with HIV for studies at the University of Pennsylvania’s mental health and HIV division, once his HIV was diagnosed in 1997 and he started treatment, it wasn’t that big of a deal.
Before that, he says, “living with diabetes’ complications was physically, emotionally, and mentally depressing.” Whereas “with HIV, once I learned to swallow my pills, I was OK.”
He is echoed by Philadelphia’s Andrena Ingram, 67, a retired Lutheran pastor diagnosed with HIV in 1988 and with type 2 diabetes around 2000. “Diabetes has given me more complications than HIV,” she says. “There’s the constant testing, sticking myself, and worrying about what to eat,” she laments. She’s gotten good, she says, at mainly eating salads with things like corn and chicken—and occasionally, she’ll treat herself to ice cream, pizza, or half a Snickers bar. “It’s better to give in to the cravings a little bit than to avoid them completely and then binge,” she says.
And she makes herself walk around the block three times a week or do some leg lifts in bed, even though she doesn’t enjoy it. “The word exercise bothers me,” she laughs.
In New York City, Bruce Ward, 64, who was diagnosed with HIV in 1986 and with diabetes around 2010, believes that his diabetes and all his other health challenges have sprung from his HIV and/or his HIV meds—especially older, outdated therapies that were indeed found to increase risk for diabetes. As for an HIV-diabetes link, people with HIV do have higher rates of type 2 diabetes than the general population, but that’s likely because of higher rates of diabetes risk factors like obesity and older age; it’s unclear whether chronic low-level inflammation caused by HIV contributes to diabetes.
Ward says that his HIV has been harder to manage than his diabetes—in part because he’s had HIV since before medication became effective and easy.
“Managing my health with HIV has been a full-time job over three decades,” he says. “After years of swallowing handfuls of HIV pills twice a day, plus giving myself other HIV-related shots and various remedies, giving myself a tiny pinprick of an insulin shot once a night is not that much of a challenge.”
Changes to Diet and Exercise Often Demand Special Help
Of course, eating a healthy diet low in sugar and empty carbs and exercising regularly is good for everyone, with or without HIV and diabetes. But for people with diabetes, it’s a must. “You simply can’t give someone diabetes medication [and] give them free will to eat whatever they want,” says Watkins.
And that’s where things get tricky; it’s not easy for people to change habits built over a lifetime. That’s why Watkins advises baby steps. “Start by getting rid of soda [and sugary beverages],” he says. “That’s one of the biggest offenders. Then, if you eat Frosted Flakes for breakfast, switch to Corn Flakes or oatmeal.” With the latter, he says, “You can make a big batch on weekends so you don’t have to make it from scratch every morning.”
As for lunch, he says, “take something [from home] with you instead of buying it, when [available] choices [are more likely to be unhealthy]. Then ask what you can do to increase your daily physical activity. Take a walk? Hit the gym? Take the stairs instead of the elevator at work?”
If you work on the 12th floor, he says, even getting off the elevator on the 10th and walking two flights can help.
Lo says that nutrition counseling can greatly help people with diabetes revise their diet, if they can access it. She points out that for patients experiencing food insecurity, controlling diabetes can be especially difficult due to challenges accessing nutritious foods. That’s why she and other researchers partnered with the nonprofit organization Community Servings to better understand the benefits of providing medically tailored meals and nutrition counseling to such patients.
She urges people to ask their primary care providers or local HIV/AIDS service organizations if they can connect them to free nutrition counseling—or, for that matter, to free fitness classes or training.
Ward, for one, credits diabetes with making him improve his diet and exercise regimen. “In the last two months,” he says, “because of a new trainer I’m working with at my gym, I’ve taken the most active approach to diet and exercise in my entire life. And it’s working! I’ve lost body fat, and my blood sugar and blood pressure, for which I also take a daily pill, are completely normal. I’ve been giving myself less insulin.”
He adds, “I’d like to think that I could wean myself off it eventually. We’ll see!”
Bruce Ward is an author, actor, educator, and HIV advocate who has been chronicling HIV and AIDS since early in the epidemic. His creative work includes his solo show, Decade: Life in the ’80s, performed at festivals and universities across the country; his award-winning play, Lazarus Syndrome; and acting in television and film. (You might just catch him in a Law & Order episode from a few years back!) Bruce has written articles for HuffPost and A&U magazine, has a memoir just waiting for a publisher, and even sings with the New York City Gay Men’s Chorus, which are just some of his talents, interests, and accomplishments. Bruce is a terrific guy, warm-hearted, smart, and charming as hell. I was grateful to share the air with him on the Dec. 2 broadcast. Here are some excerpts from that conversation.
World AIDS Day means many things to many people, but I think it has special meaning to those who have been living with HIV for decades. I wanted to honor long-term HIV survivors by featuring on the weekly Instagram At Home With broadcast.
This interview has been edited for content and clarity.
Charles Sanchez: How are you? What’s going on?
Bruce Ward: I’ve had a busy World AIDS Day week. World AIDS Day is like Christmas for people who are positive, and especially long-term survivors. It’s like one day we get to tout our wares and hope people can pay attention a little bit.
CS: You live in New York City.
BW: Yes. I’m right across the street from the Chelsea Market, by the High Line and Meatpacking District. I haven’t had to close my blinds in a year and a half because of the back offices. There’s really nobody there. Once in a while, a janitor walks by and I’m like, “Oh, I better put some clothes on!”
CS: What did you do for World AIDS Day?
BW: Last night, I participated in a really wonderful event that was organized by the author Tim Murphy. There were 10 HIV-positive people of a wide variety, diversity, ages, gender. We all read from authors who had died of AIDS in the ’80s and ’90s. We read like four minutes, and my piece was by a writer named David Feinberg, who wrote two amazing—oh, you would love them, Charles! They’re sarcastic and witty and bawdy and sexual. Unfortunately, he died very early, in .
His second book, Spontaneous Combustion, was published in . I read part of the epilogue, which is his prediction of what the world would be like when the cure was found in 1996, which was very prescient. I mean, no cure, obviously, but that’s when the cocktail came out. Yeah, it’s very bawdy, it’s mostly sexual. It’s like, gay men will throw away their condoms and give them to the artist Christo to wrap around the Empire State Building.
CS: Well, that would be great. I’ve always said, if they find a cure for AIDS, there’s going to be fucking in the streets. I hope, anyway! I hope I live to see the day.
BW: I feel like we’ve kind of adjusted in small ways to it, with the cocktail, then with PrEP and U=U. So I don’t know if it would be as dramatic as it would be if that had been the first thing that happened.
CS: How long have you been living with HIV?
BW: Tim pointed out at the reading last night, I’m probably the longest-living HIV-positive person that was there last night. Anyway, I know exactly when I acquired the virus, in 1984 in Honolulu, but they didn’t know what caused it back then. They knew it was probably a virus, but they hadn’t discovered what was called HTLV-III at the time. The next year, there was an antibody test. In 1986, I was officially diagnosed. It changed from the very unwieldy HTLV-III/LAV to HIV.
CS: I don’t remember it even being called HIV for a long time. AIDS was the word that was always used in the media. Whenever people got sick, it was, “I’ve got AIDS,” or “You’re going to get AIDS”—I mean, it was AIDS. I think the transition from using “AIDS” as the word that we see in the media to now, it’s sort of a kinder, softer “HIV.”
BW: I think it was called AIDS at first because HIV hadn’t been discovered. In ’86, once it came out, the whole AIDS moniker, a lot of it had to do with eligibility for insurance and disability, things like that. I categorically was diagnosed with AIDS, and once you’re categorized as that … you know, it’s like being in recovery: Once you’re an addict, you’re always an addict. And, well, it’s just a word. But you needed to have under 200 T cells at the time to go on disability and to get some insurance.
Tim also wrote an article recently for TheBody on discrimination, and he quoted a story of mine.
I had a discrimination suit against the New York City Health Department Dental Clinic, which was ironic because I was working for the health department. I went to their clinic, and they had me sitting in a chair for hours. Then they said they couldn’t treat me because of HIV. They would have to scrub the walls and the floors and autoclave the instruments for 24 hours, which was not true. So there was an eventual lawsuit, but at that time, a reporter from ABC television heard about it. I wasn’t as vocal about my status as I am these days. This was 1986. I asked the reporter, please, if you’re gonna call me anything, I’m a person with HIV. I don’t have AIDS. Sure enough, I watched the news program that night, and the caption said, “Bruce Ward, AIDS patient.” Of course, a relative in New Jersey saw it and called my mother. My mother knew about my status, but to see me on the news as an AIDS patient!
I have another story. It’s someone close to me, who’s known I’ve been positive for a very long time. We were talking about something, and I mentioned, “I, as a person with AIDS,” and he looked at me in shock and said, “You don’t have AIDS, you’re HIV positive.” That’s when I realized that there’s a distinction that [is] something that people have with the word. It was OK if I was HIV positive because there’s the treatment now. “AIDS” had such a connotation to it that it wasn’t the same thing to him.
CS: I think that there is great power in acknowledging your diagnosis as being that of AIDS, as was mine. That’s my diagnosis, and the HIV is like, yeah, that too. I mean, it’s all together. I think that in this day and age, it’s really good to let people know [that] people still get diagnosed with AIDS. People still have AIDS. There [are] still people dying of AIDS around the world and in this country. People need to be reminded of that.
BW: There [are] still people living with it, you know? I write primarily about HIV and AIDS now, and I really focus on the first 15 years, because I don’t want the memory of those years to disappear, because it could so easily if you look at the Holocaust deniers. It’s very important for me to remember those years. I lost 93 friends in college because I worked in the field, so I knew lots of people.
But the other thing I focus on is long-term survivors. I know we’ve had this discussion and you’ve talked about the word survivor, and of course, yes, we’re all survivors. Maybe there’s another term we should be using, like, “fabulously living with HIV” or something. But even within the HIV and AIDS community, there [are] some different strata. We all should be one big family. You come together on any of these issues, but there are different issues for long-term survivors diagnosed before 1996, in terms of the illnesses we’re getting and our reaction to the AZT. I was on AZT and a lot of toxic medications.
I had a life coach for a very brief period of time. He said to me once, “Maybe you don’t need to use that term, ‘long-term survivor,’ it’s kind of off-putting to people. I understand that, but I also feel like it’s a way for people who have been living with HIV for a long time to have some notice about ourselves and to acknowledge our existence. Because I think many of us feel very dismissed, and especially as we’ve gotten older. Many LGBT people feel dismissed as they get older anyway.
CS: I think as far as the phrase, “long-term survivors,” in regards to people living with HIV, [it] envelops history. It envelops a unique experience of having so many of your contemporaries, boyfriends, friends, whole communities of artists, etc., that were vanquished. At a time also when we, as a country and as a world, really didn’t even want to talk about AIDS or HIV. I remember people saying, “Well, they deserve it. Whoever gets it, they deserve it.” I hope we’re a little bit past that now. I love that you’re acknowledging the health disparities that are unique to people living with HIV that are older, as I am creeping up into an age category that isn’t as pretty as, you know, 35.
BW: Yes, well, you’re always going to look pretty, Charles.
CS: Oh, wow. When we talk about long-term survivors, it’s not just that we’re getting older or that [we’re] afraid of things being forgotten, but it’s also the wealth of experience that you bring with you.
BW: People are used to honoring the dead and thinking about the people who died, which is extremely important. There’s less focus on other people who are still here, the people who went through it. It’s not just about the grief for us. It’s about the effect that living with the virus has had on our bodies and our minds and emotions. I’m one of the very lucky ones. I’m not worried financially. I live in a great apartment. There’re many people out there who got isolated, not living in New York City or other large areas. Thankfully in the last few years, there [have] been some wonderful communities that have cropped up.
The ones I know about are on Facebook, and that’s really helped me and a lot of people to connect finally for the first time. I consider myself to be held together by Elmer’s glue and duct tape. I’m the poster boy for everything that can happen. I’ve had both hips replaced. I have diabetes. I have neuropathy in my toes, fatigue, PTSD or depression, or whatever it is they’ve categorized as AIDS Survivor Syndrome.
There are issues out there, and it’s hard to talk about with people and with friends because either they want to express their pity or they don’t know what to say.
CS: Yeah. I understand that. This year was my 18th year [living with HIV], but I was alive during the AIDS crisis. I was in New York. I was a young actor. I was doing all that kind of stuff, even though I wasn’t involved in the HIV community in that way. How do you feel, as someone who acquired HIV early on, about someone like me, who—I don’t consider myself a long-term survivor, I don’t talk about myself that way—or people who are involved with the community but who just don’t have HIV, but who have been a part of the fight the whole time? They’re also long-term survivors. How do you feel about them acknowledging themselves that way?
BW: I’m in a group called Honoring Our Experience, it’s San Francisco–based. We talked about that quite a bit because there [are] not just people who’ve been living with HIV, but also the allies. It’s really important to recognize that.
CS: I think there’s room for both. We’re all also still living with HIV or fighting the good fight, like you said. I think those are really important conversations to keep having.
CS: What are you working on right now?
BW: I do have a memoir that I wrote and finished seven years ago. So if anyone has a good agent or a publisher … ! I used excerpts from the memoir in the magazine I’ve been writing for, A&U magazine. I did 14 chapters. It was my version of Tales of the City or Dickens. It’s basically about me coming to New York City as a 22-year-old gay boy coming out for the first time, just as AIDS hit. I was also in very interesting places at certain times, kind of like Forrest Gump. I worked for the city health department hotline when Rock Hudson died, and I saw how dramatically that changed public perception, really overnight.
I have a play called Lazarus Syndrome that’s had a few productions.
We all have our own voices, and I think that’s important. That’s what keeps me going when I think I want to get this published because there are other AIDS memoirs out there, but they’re all different. Some are more political, some have more celebrities involved. Mine’s sort of coming from the Joe Schmoe point of view. You know, Joe Schmoe comes to New York as a gay boy at 22 and all this happens around him. I did play an active part, I became the director of the CDC National AIDS Hotline, and that’s a chapter in itself. I’m sure it has some scoop in it, but I’m not sure how many people would be interested outside of the CDC or AIDS community.
I feel like it’s so important to share these stories, to share all of our stories. I don’t have children. One thing I can leave behind is just some chronicle of the time we’re living in. And I certainly encourage anybody who’s watching this to write your own story. No matter what part you play in the epidemic, or even whatever you have to write about, get to it. It’s important. Your voice is important.
CS: Wonderful. Thank you so much, Bruce. You’re such a wonderful guy. I’m so glad to know you’re in my community and in my life.
Charles Sanchez is a Mexican American, queer, writer/director/actor/producer living with HIV. His award-winning musical comedy web series, Merce, is about a fabulous HIV-positive guy living in New York who isn’t sad, sick, or dying.
We all lived together in a large four bedroom apartment in Evanston. I believe this photo was taken on the last day we would be together, before Bob took off (for San Francisco?), and Robert, Bill & I rented an apartment across from Wrigley Field. We each paid $90/month rent for a 3-bedroom apartment. That neighborhood was a ghost town then. Made even more ghostlier by the huge monolith of Wrigley Field, which I walked past every day. We were there from like October to April, when there were no games being played (because, of course, the Cubs were not in the playoffs.)
And I still remember the -80 degree wind chill, waiting for the El to take me into the city, where I had a waitering/bartending job at a Rush Street restaurant.
This photo was also taken, I think, a day or two after our most bonding experience, one which we will never forget. It involved all of us dropping acid, playing frisbee on the lip of Lake Michigan, looking at ants and flowers in the Shakespeare garden, listening to Mozart, and examining the many colorful layers of a candle.
These days, kids do drugs to dance and have sex. But then, especially as theater majors, we used it for mind expansion, and as a conduit to an intense bonding experience.
I couldn’t sleep at night, and around maybe 6 AM, I went for a run. It was late August, and most students were not on campus,
Lake Michigan was beautiful and serene.
It was that lovely early morning time when no one was around. It was if I were jogging past my home of the past four years, the cocoon of college, and savoring the experience the four of us had just shared.
It was if I were running away from the safety of college, but also running towards something – the unknown. It was scary, but also exhilarating. We were 21 years old, our whole lives ahead of us. I ran towards the possibilities.
Today, December 1, is World AIDS day. Please take a moment during your day to reflect, in whatever way is meaningful to you.
This year, I am involved in several events. Here are just 2 of them. I hope you will be able to participate or listen to one of them. Thank you.
On December 1, 5 PM EST, I am joining 9 other folks with HIV, reading from works of authors who died of AIDS. Organized by the author Tim Murphy. We will be at the NYC AIDS Memorial Park, on Greenwich Ave. at 5 PM, followed by the annual candlelight vigil. In you in NYC, please join us, for what should be a powerful and interesting event. Thank you.
This has been my cover photo since I saw the City Center revival of “Sunday”, 4 years ago. It is a photo of the lobby signage. It is my favorite Sondheim lyric, from the show that changed my life when I first saw it in 1983. It represents my belief in the transcendence of art as communication.
I have so many. But these are the 2 standouts:
Susan Perlmutter running up to me in our high school corridor, in 1974, waving the album of “Company” in my face, saying, “We have to do this as a student production!” And we did. I directed it, and played Bobby. And she played Joanne. I think she just really wanted to sing, “Ladies Who Lunch“. And who can blame her? Though, if you’ve seen the movie “Camp“, you’ll know what it’s like for a 16-year-old to be singing that song. I think we were the second high school in the country to do it. It is a great credit to our school, and to our drama and music teachers, that I don’t believe I ever heard one word of caution or censorship. The whole cast is still close, 47 years (!) later. It was a pivotal moment for us all.
It was my introduction to Sondheim. It might seem just as ludicrous for a 16 year old boy to be singing “Being Alive“. But I knew, even then, that there was something in that song that spoke to me. Suddenly, I felt that someone understood me, the part of me that I kept hidden from the rest of the world. And I wasn’t so alone.
2. And, in 1983, a guy I was dating took me to four plays in four nights for my birthday. (I know, what a mensch!) The last was “Sunday in the Park with George“. We couldn’t get up from our seats afterwards, we were so moved. And, once again, I felt as if Sondheim was looking directly into my heart, and touching something nobody else had ever seen.
Out on the street, a man came up to us, asking if we understood what we just saw. His wife was probably gushing over it, and he didn’t get it. So of course he approached the two gay guys who were bawling.
It was at that moment I understood that there were those in this world who “get it” and those who don’t.
We are so fortunate to be among those who get it: the visual artists, the performers, the composers, the writers, the directors, the appreciators, the creatives, the visionaries.
RIP Mr. Sondheim. You got it, and you gave it right back to us, helping us each to feel just a little bit less lonely in the world. “No one is alone.”
When it comes down to it, everything is a Sondheim lyric.
It’s not always easy to make the decision to embark on a major transformative experience or healing journey. At Mindbloom we receive many questions from well-intentioned individuals with some concerns or confusion around the process, if this is the right fit, or if there is anything else that they should know.
This piece explores five common concerns about psychedelic therapy, and how to think through them on your own. Ultimately this decision is yours to make, it is for your process and your healing journey. Seeking out additional information like this to make an informed decision is a great first step to take.
“How Do I Know If Psychedelic Therapy Is Right For Me?”
You’ve explored traditional treatment options
Many people come to explore psychedelic therapy after they have exhausted other routes to alleviate symptoms of conditions such as depression, anxiety and PTSD. This could include traditional psychiatric medicines, such as SSRIs (selective serotonin reuptake inhibitors) or talk therapy. The first FDA designation for ketamine was actually for people who have tried several other treatments like SSRIs and not had a significant reduction of their depressive symptoms.
Aside from looking at the alternative treatment options out there, it could also be helpful to look at what you are doing currently as a form of treatment and your overall health. Have you spoken to your current prescriber about other medications or adjusting the dose of what you may be currently taking?
If so, has there been some effect, an unwanted effect, or little to no effect? Have you been on antidepressants, participated in a sleep study, changed your diet, or even explored herbal and other non-Western remedies? Have you had thorough medical evaluations that include things like lab work, genetic testing, or in some cases, digital imaging studies, to rule out possible medical reasons for your symptoms?
Evaluations by licensed practitioners are generally required for psychedelic treatment in a clinical setting. At Mindbloom, you will have an initial consultation with a clinician who will monitor your progress through your course of treatment to provide you additional support when needed, assure that the therapeutic benefits of the medicine are maximized, and assess your well-being.
You’ve considered the options
Just as with making medical decisions, it is important for you to do research, get multiple opinions, and weigh your options. It is likely that different medical professionals will have different medical opinions in regard to your course of treatment and even your diagnosis. Perhaps you will want to look for a psychiatric clinician who specializes in psychedelics, or a practitioner who thinks “out of the box” regarding traditional Western medicine, or maybe you have chosen to follow the more traditional models of psychiatric treatments.
At Mindbloom, we do not require you to have exhausted other treatment options and currently receiving other forms of treatment or therapy would not automatically disqualify you. What is important is that you approach this treatment opportunity with an open mind to the nature of this process and a commitment to yourself to do the growth work around the medicine, through integration, with the support of your clinician and guide team.
The opinions of medical professionals, friends, and researchers are indeed important. But, in the end, only you can decide what is right for you, and if you are ready to take a new step in your treatment.
You Have Set Intentions or Goals in Mind
Mindbloom believes in looking at ketamine treatment as an integrative process. Any insights you may experience during your hour-long sessions may become more therapeutic or longer lasting through journaling, meditation, talk therapy, and other proven integrative tools.
One of the integration exercises that Mindbloom asks of its clients is to set intentions before each session and for your overall treatment: how do you hope to grow or heal through this experience?
The same question may be used in choosing to explore psychedelic therapy. What has brought you to look at psychedelics as a therapeutic tool? What are your intentions for healing or behavioral change?
“How Do I Know Which Psychedelic is Best For Me?”
The Legal Options
You’ve decided that you are interested in psychedelic therapy. Which treatment or medication is best for you?
There are many factors involved in making an informed decision as to which is right for you, such as: availability, accessibility, legality, and methodology. Outside of participation in research studies, Ketamine is the only legal option currently available. Clinical trials that are using psilocybin and MDMA as a treatment for a variety of conditions are another legal avenue to explore these medicines. However, keep in mind that they follow rigorous selection protocols, defined by the nature of the study.
The discussion around psychedelics like these, and others such as LSD and ayahuasca, continue to be explored as the scientific community searches for safe and effective treatments for a variety of conditions.
If you want to try the route that is most readily accessible, ketamine therapy may be right for you. As of this date, ketamine is the only psychedelic approved by the FDA for therapeutic use, though FDA approval for psilocybin mushrooms and MDMA is currently in progress, and for some specific designations have been granted “break-through therapy” designation for specific indications in current clinical studies. Private companies like Mindbloom offer a professional, and safe experience, in the privacy of your own home.
Ketamine treatments can also be shorter-duration experiences than the other psychedelics. Ketamine therapy typically lasts about an hour (not including the time spent on journaling, meditating, and integrating the experience), and the medicine’s effects wear off fairly quickly. The effects of other treatments such as psilocybin and MDMA could last for several hours.
There are excellent documentaries, podcasts, videos, and books to be found on each of the psychedelics, as well as on psychedelic therapy and concepts like microdosing, in general.
If you have determined with your care team that a psychedelic medicine other than ketamine is the appropriate next step for you — you will need to apply and enroll in clinical trials. There are a number of ways to do this, view this resource for more information. Keep in mind that during COVID-19, clinics and trials may be operating in a different manner.
Another option, albeit one not likely during this time of COVID, is to seek treatment options outside the US, where other options may be available. But even in pre-Covid circumstances, this could be a costly and time-consuming endeavor.
Mindbloom, which currently provides ketamine treatment specifically, sends you a kit called a “Bloombox”,” that has everything you will need: the medicine, a journal, an eye mask, and a heart monitor, as well as an online portal that serves as your digital guide with time sequenced integration exercise, education, and audio programming, as you progress through the course of treatment. Each session is accompanied by a curated soundtrack that aids in taking you through your journey.
“What Are the Risks?”
Potential Medical Risks During the Experience
As with any substance introduced into the body, it is important that you are screened by a medical professional to rule out risks and assure safety before continuing.
At Mindbloom, we follow a scientifically backed dosing protocol based on your weight and titrated based on specific clinical markers. Our ketamine is in the form of tablets that are produced by regulated compounding pharmacies that are held to the highest of quality standards.
There is great risk in self-medication through the purchase of ketamine via other channels, as there is no control for dosage and quality. More and more, substances such as ketamine when being sold on the “streets” are being cut with deadly, high potency, substances such as fentanyl. Various reports showing this occurring in as much as 40% of the supply.
If you are considering ketamine as a treatment option, we recommend you make an appointment to consult with a clinician. Psychedelics have a variety of physiological effects and during a consultation, the clinician will determine if any of these effects are possible risk factors for you. They will also provide you with the education, tools, and support to manage some of the side effects in a safe way.
Risks of Surfacing Trauma During, or As a Result of, the Experience
For some, the goal of psychedelic therapy is to find healing around traumas that may be buried deep within our psyches or up in the forefront of our consciousness. Maybe then, also finding relief from the secondary effects of the trauma that can be manifested in a variety of ways such mood (depression and anxiety), PTSD (which includes a collective of symptoms) and somatically (felt physically in the body). As Stated by Dr. Stanislav Grof, one of pioneer researchers and practitioners in the therapeutics of non-ordinary states of consciousness states, psychedelics can be understood as “non-specific amplifiers of the contents of consciousness.”
In this context, we can understand how these medicines can, in a sense, stir things up from deep within us, bringing them to the surface. In many ways, this is the point. To access this content so that we can heal through closure, acceptance, change in perspective, and even just a release of pent-up psychic energies. For some, things may get worse before they get better. However, with proper support with set/setting, processing, and integration this does not have to be an unsettling process which is why professionally trained support along the way is vital.
People have a variety of experiences with these medicines. Some experience love, empathy, and a connection with something greater than themselves. When working with trauma, there is a possibility of coming into contact with a part of you where trauma lives which can be overwhelming without thoughtful set/setting and plans for processing and integration support.
This is one of the things that will be discussed during your consultation with a clinician prior to moving forward with treatment at Mindbloom. Based on your needs, your clinician may make recommendations to establish care with a therapist outside of Mindbloom prior to moving forward with this treatment. The first two treatments are facilitated by our guide and clinician teams. It is also a requirement that you have a trusted person at home with you when you take the medicine. This person is referred to as a “peer treatment monitor” and they are a vital component of safety in set and setting.
What if I Don’t Feel Any Benefits from Ketamine Treatment?
Some people do experience dramatic changes immediately after a single dose. But, for some, the benefits come later in the week, or after many weeks and multiple doses. Psychedelic therapy is often a journey of life-long healing work after the start of treatment.
Whether you continue to seek this treatment on a regular basis, or work with its potentially long-lasting benefits after your last session, it has the potential to reward you through lasting growth and behavioral change.
You will know when you feel you have gained benefits or not. And, if not, you may choose to try a different treatment. Like most things in life, we don’t always get it right the first time. But, also like life, the only way to know is to try.
Today is National HIV/AIDS and Aging Awareness Day. I acquired the virus in 1984: 1 year before the virus was isolated and named LAV/HTLV-III; 2 years before the ELISA antibody test became available; 3 years before I was officially diagnosed 4 years before I began taking the only FDA-approved treatment, the toxic AZT; 12 years before the pharmaceutical “cocktail” treatment (HAART) changed the face of the epidemic I have had 2 lymphomas, with their accompanying chemos and infections, a heart attack, both hips replaced, 6 stents in my arteries, I have diabetes, high blood pressure, neuropathy, chronic fatigue, and dysthymia. I have consumed approximately 100,000 anti-viral pills in my lifetime, and I continue to take 10 pills/day.
I was 26 in 1984. I will be 64 next month. I will continue to advocate for longterm survivors, through my writing and public speaking, even (especially?) if it irritates you. Because we are here. We have a LOT to contribute. And we will not be dismissed. Here’s one thing you can do today: if you don’t know what U=U means, Google it. It’s important. Thank you. 😎
Last year, I embarked on a journey with ketamine microdosing, as a treatment for chronic fatigue, depression, and dysthymia, a type of chronic trauma. This is my story, for those who are interested in it, and for those who are interested in possibly exploring microdosing for themselves, or for loved ones struggling with depression or trauma, or looking to explore within themselves.
Written byBruce WardMedically reviewed byChelsea Tersavich, PA-CPublished onMay 21, 2021
Readers Note: This is an account from a recent client experience, written in the first person.
In 1988, four years after acquiring the virus we now know as HIV, I began to experience a continuous, unrelenting fatigue. This is what I have dubbed my “brain frog,” which has continued to persist to this day, for thirty-two years.
During those years, I have consulted with a multitude of medical professionals, and none have been able to ascertain whether my chronic malaise has been caused by the virus, the medications, depression, trauma, or a combination of them all.
Searching for Psychedelic Treatments
After years of searching for answers —everything from brain scans to exercise to meditation to antidepressants— I stopped being concerned with what caused the fatigue. I just wanted to feel even just five percent more “alive.”
In recent years, I finally decided to entirely stop looking even for a remedy. I resigned myself to the idea that this was going to be how the rest of my life would be. And I tried to adjust to that.
Then I began to hear about psychedelic treatments, and that gave me new hope.
After a year of doggedly pursuing clinical trials with psychedelic medicines, to no avail, a colleague who knew I had been interested in ketamine treatment told me about Mindbloom.
From the very start of my journey with Mindbloom, in October 2020, I have been impressed with the staff’s professionalism, knowledge, and care. I felt safe, which, in my mind, was of utmost importance, since I really didn’t know what to expect of ketamine as a psychedelic medicine.
Preparing for the First Treatment
The Support Team
Mindbloom provided me with a step-by-step treatment plan. The first step was choosing a virtual “guide” from Mindbloom’s list – someone who has been trained to answer questions and to be a steady person of support during the first four sessions. The next step was to choose one of Mindbloom’s clinicians, who assessed that this treatment would be appropriate and safe for me.
I had assumed that I would be going into a clinic for my treatments, and that the ketamine would be delivered through infusion. Because of COVID-19, Mindbloom was providing their support virtually —through Zoom conferencing— and the medicine came in the form of lozenges.
I was both impressed, and a bit humored, by the “Bloombox” kit that Mindbloom sent for my initial treatment. Along with the lozenges, there was the largest eye mask I had ever seen, a wrist heart monitor, a Mindbloom journal, a pen… and a pack of Listerine strips. A thoughtful touch.
After dissolving the lozenges in your mouth for seven minutes, one is instructed to spit the remaining liquid into a vessel. The Listerine strips are there for those who want to dispel the taste of the medicine, for that “fresh breath feeling.”
Beginning the Journey
With an emphasis on safety, Mindbloom requires that a supportive individual called a Peer Treatment Monitor be nearby (in another room, perhaps). This is often a friend or family member who checks on you during the journey, every fifteen minutes, and gently rouses you when the hour’s treatment is up.
This was such an important part of the experience for me. Knowing that a friend was in the living room (along with my two cats), while I was in my bedroom eyemasked, headphoned, and on a psychedelic with which I had no experience, enabled me to relax and “go for the ride.”
Whenever I felt slightly anxious during the session, for whatever reason, I could relax knowing that I was safe with a trusted friend nearby.
For my initial treatment, Mindbloom’s clinician prescribed my first dose based on a clinical evaluation. I didn’t know what to expect with this dose, but knew I was in good hands with their clinical guidance.
After talking with my guide, I learned Mindbloom provides choices of music tracks to listen to during the session. Some music tracks are specifically chosen for each step of the treatment, and range from “binaural beats” to the sound of a consistent heartbeat.
I chose to listen to the music they provided. With the ebb and flow of the music’s intensity, together with the peak of the ketamine’s efficacy, the psychedelic element began to emerge. With the eye mask tightly covering my eyes, I could see the “sky” opening up above me, as I shot into space and rocketed among the stars. At another point, I was floating above the tall buildings of Manhattan. These images never frightened or alarmed me. I never felt disassociated from my body (though this ultimately can become the goal, in a sense, in later sessions).
For the initial session, I wanted to feel safe. And I did. I knew that I could, at any time, take off the eye mask and the headphones and stand up. That knowledge, together with my friend in the other room, allowed me the freedom to enjoy the experience and to take in whatever images or feelings came forth.
During my initial treatment, some images of memory did emerge: images of childhood, and of people somewhat forgotten, in the back of my mind. Phrases, such as “let go,” also appeared, It felt like an exploration into a new world, and it was even joyous. I felt an overwhelming sense of peace.
The insights I had during the treatment lingered through the week. My fatigue remained unabated, but I knew that this was a process. And I looked forward to my second treatment, the following week.
The psychedelic aspect of the second session was similar to the first after adjusting the medicine’s dosage. But now I was totally comfortable with the experience, and I kept saying, to myself, “Show me more.” I was eager to gain insight. But I was also not paying attention to the suggestion of stillness: instead of letting each experience just happen, I was forcing them, wanting to see more, to experience more, to have more insight.
By the third and fourth sessions, phrases such as “trust,” “be open,” “peace”, and “opening my heart” now accompanied the ever-present “let go.” Certain musical passages would bring on memories as well: the sound of children laughing, the ringing of a bell. But, through it all, I knew I was always in control of my body.
During the period of these first treatments, Mindbloom also introduced me to a series of “Integration Circles.” These were Zoom meetings, in which a handful of clients from across the country took to discuss our experiences. I found these sessions to be extremely useful, and I found it interesting to hear others’ stories, realizing that my experience was both unique and universal.
Following my fourth session, after a month’s hiatus, I decided to do another four sessions. What Mindbloom refers to as “Going Deeper”. The clinician again adjusted my dosage based on our clinical conversation.
These four sessions continued along the same path as the first four, yet the adjusted dose did, indeed, bring with it a sense of going deeper: deeper insights, a greater sense of peace, and more fodder to include in my post-treatment integration. Gratitude, a concept I struggle with, became more of a reality to me, and I embraced it.
Having completed eight sessions, I now am assessing what’s next for me. While I have not experienced the ultimate cure for my fatigue, I have accessed tools to lessen the accompanying depression.
The key is in the integration. And it is up to me to follow through with it. Like any integration, using the insights from ketamine treatment is like going to the gym, or eating right. It is a muscle. And by integrating journaling, meditating, and using these tools in everyday life, it makes sense that positive results will follow.
Through treatment, I experienced a bit of happiness and color to break up the grey in my world. And that counts for a lot, especially during the modern reality of pandemic quarantining. I feel stronger, knowing that I am continuing to try and find new ways out of my fatigue. In other words, I have a renewed hope.
During the final audio recording of my eight-session journey, the narrator gives some suggestions for the mind, body, heart, and soul. He ends with:
“The journey of a thousand miles begins with a single step. The journey is all we have, in the end.”