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.
Please feel free to comment and share, if you feel moved to do so. Comments are always welcome! And thank you for reading.
(Re-blogging for those interested in learning about Harm Reduction as a therapeutic alternative for drug and alcohol recovery)
Marco’s success story is remarkable, given his rapidly escalating drug addiction, many relapses, and descent into physical and emotional darkness.
Harm Reduction: An Alternative Approach to Managing Addiction
In September, 2013, at the age of 45, Marco* tried Crystal Meth (also known as “Tina”) for the first time. Someone smoking from a pipe blew it into his mouth. A month later, he smoked it directly from a pipe. By the start of 2014, he began smoking every weekend. By March, he was smoking almost every day.
By August of 2015, Marco had lost contact with all friends and family members, and had lost his career. He smoked more, which added to his depression. He stayed at home, arranging Party and Play (PnP) encounters with other users, where they would consume the drug in order to enhance sexual activity.
He states, simply: “I knew I wanted to die.”
What is “Harm Reduction”?
When we hear the words “addiction” and “recovery,” many of us think of the 12-step model, founded in 1935 as Alcoholics Anonymous. For decades, however, there have been alternative roads to recovery, and the “harm reduction” model is one such approach that has gained in popularity and effectiveness in recent years.
While Harm Reduction may be used for all substances, this article focuses on the outpatient group program of “Crystal Clear,” at Mt. Sinai Hospital’s Addiction Institute in New York City, which works to treat crystal meth addiction, primarily among the gay male population.
Harm reduction is defined by a focus on reducing the negative effects of substance use, rather than trying to prevent or stop the usage itself, incorporating a spectrum of strategies that includes safer use and managed use. Advocates of harm reduction support the goal of people working towards abstinence, but recognize that, for many, this process takes time and that setbacks do not amount to defeat.
Harm reduction isn’t a new idea. While the term can be dated back to 1987, the idea of minimizing the harm caused by substance use disorder can be traced to the 1920s. The International Harm Reduction Association (IHRA) was founded in 1996.
Principles of Harm Reduction
The IHRA lists eight principles of harm reduction. The first two of these principles embody the non-judgmental approach toward managing addiction:
1. Accepts for better or worse, that licit and illicit drug use is part of our world, and chooses to work to minimize its harmful effects rather than simply ignore or condemn them
2. Understands drug use as a complex, multi-faceted phenomenon that encompasses a continuum of behaviors from severe use to total abstinence, and acknowledges that some ways of using drugs are clearly safer than others
A common misconception about Harm Reduction is that it condones or encourages drug use. The eighth and final principle combats this fallacy:
8. Does not attempt to minimize or ignore the real and tragic harm and danger that can be associated with illicit drug use.
Joseph Ruggiero, phD, is a clinical psychologist who has worked in the field of addiction for twenty years. He is the co-founder and director of the Crystal Clear program, the only program of its type for crystal meth addiction in New York City.
With crystal meth use among the gay male population reaching epidemic proportions at the start of the 21st century, Dr. Ruggiero saw the need for a program that specifically addressed the needs of gay men and crystal meth addiction.
Dr. Ruggiero does not believe that the harm reduction and 12-step approaches are in conflict. In fact, many of the program’s clients take advantage of both models. But he does believe that the harm reduction approach is more integrated, in that it can include tools such as psychotherapy, skills building, pharmaceutical interventions, support groups that encourage “cross talk,” and a deeper understanding of the complex of drug use in people’s lives.
Ruggiero states that “harm reduction is about working on goals that the client wants to work on and not making assumptions, and meeting people ‘where they’re at.’” He describes an approach in which relapse, ambivalence, and struggle are often a part of that process.
Making Choices
Kaitlyn Murphy, M.A., MHC-LP, co-leads the Crystal Clear program, and runs many of its outpatient groups. She sees the program as one which helps people make choices by looking at their motivations, while also giving them tools to achieve their goals.
During the COVID-19 shutdown, Murphy’s groups have been meeting virtually. With consistency in membership, over time, comes trust in one another. Members talk of shame and trauma and shared experiences.
Murphy believes that success in the program is about someone reaching their goals and living a life that is happier or has meaning. It is about living a life within the person’s own values — which generally goes hand in hand with using less, and often leads to abstinence.
Both clinicians talk about the amazing transformations they see in their clients.
This is one of those transformations.
Marco’s Journey
Marco was in a spiraling depression, with suicidal thoughts. He didn’t take his HIV medication for a year, and he weighed 90 pounds, down from his normal 145. That summer, his brother had made two attempts to check in on Marco at his apartment. During his third attempt, in October, he came with the police. The next morning, Marco admitted himself into the psych ward at Bellevue Hospital. No one close to him had ever suspected that drugs were involved with his deep depression; he had been adamantly “anti-drug” until the age of 45.
He was at Bellevue for 10 days, for suicidal ideation. Upon his release from Bellevue, Marco revealed his drug use to his brother.
But that didn’t stop him. As soon as he left the hospital, his drug use returned, and with a vengeance. In January 2016, Marco was out of a job and behind on his rent when a marshall came to evict him from his apartment.
In the summer of 2016, Marco’s use escalated further, from smoking to “slamming.”
“Slamming” is a term for injecting a substance into a vein, via a syringe and needle. Not all who smoke crystal meth slam. But those who do see it as the surest way to addiction, psychosis, and a precipitous decline in health, welfare, and social interaction.
Seeking help
In August 2017, Marco began attending Crystal Clear group therapy, along with occasional 12-step meetings. During his first year, he continued to relapse. But, slowly and surely, the tools he learned through the program began to take hold and, with an enormous amount of strength, courage, and commitment, Marco was able to turn his life around. In August 2020 he “graduated” from the harm reduction program after two full years of sobriety. He is now studying to become a drug addiction counselor.
Marco’s success story is remarkable, given his rapidly escalating drug addiction, many relapses, and descent into physical and emotional darkness.
Understanding relapse is, in fact, a vital part of getting sober, according to Marco. The key to his recovery has been in recognizing the triggers and using the tools he has learned.
When he first came to Crystal Clear, he didn’t believe he could do it. After months of sobriety, he began to believe, for the first time, that he could stop using totally. Through the Crystal Clear program, Marco was at first able to process his recovery in a more responsible way, in a non-judgmental atmosphere, until he finally reached his ultimate goal of complete abstinence.
Recovery Takes Commitment
Marco’s journey to recovery may be an extreme one, but it is not at all unique. Some in his support group continue to struggle with addiction, after many years of use. Many have periodic relapses. Others have left the group and continue to use. And still, others in the group have died from drug-related causes.
Despite the differences among the group members, there are striking commonalities: the progression from casual use to addiction; feelings of shame, trauma, and alienation that both fuel, and are the result of, addiction, as well as the sexual validation that comes from the drug’s euphoric and invincible powers.
The Harm Reduction model has helped group members make use of the tools they learn through the program. One member, Raphael,* states that, for him, the term “relapse” can be daunting, whereas a “slip” means that he needs to keep coming to group and committing, perhaps in a different way, to the tools he has learned.
Members are discovering the deeper meanings behind their use. And that helps them to use more responsibly, less frequently, or to achieve abstinence.
Through open, honest communication, often by revealing wounds that have been locked up in shame for their entire lives, members find that recovery is possible, in an atmosphere of non-judgmental support and encouragement.
*Clients interviewed for this article used pseudonyms in order to speak freely.
For those who missed this the first time around, and for those interested in exploring treatments for themselves or others – my experience microdosing with psychedelics, in this case ketamine, to alleviate symptoms of chronic depression. Thanks for reading,
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…
Did Rock Hudson understand his place in history? Both he and Doris Day undoubtedly knew the importance of their appearance together. But they did not know, we did not know, no one knew, how much it really signified. It was the beginning. It was the shot heard ’round the world, the first blast from the cannon’s mouth, it was the beginning of the end.
On July 16th, 1985, Hollywood star Rock Hudson (born Leroy Harold Scherer, Jr.) appeared at a press conference on Doris Day’s ranch in Carmel, California, to promote Day’s new TV cable show. The once-virile and muscular actor had not been seen publicly for a number of months, and his gaunt and frail appearance with Day, his former movie co-star, was shocking to the nation. He was a shadow of his former matinee idol self, and his speech…
4 years ago, I had the opportunity to perform a story of mine in front of a live audience at Boston’s WGBH-TV studio, which was then aired on the World Channel, and online. I was one of 8 storytellers that evening, each telling extremely different stories of having a “breakthrough” or “eureka” moment in our lives, loosely based around the topic of science. Here are 3 of them, aired together. I’m first up, starting with an interview with the host, followed by the story. 8 minutes total. But I encourage you to watch the 2 others, as well. Their stories are astounding, humorous, uplifting, and well-told. It was an amazing evening. Thanks for watching.
(An abbreviated version of an essay I wrote two years before my father died, three days after his 89th birthday, on Sept 4, 2010.)
Three hours after my mother’s funeral, my father began going through the closets. I had driven him from the cemetery, back to the house (his house, no longer their house) and we both lay down to take naps. I awoke to the sound of his rummaging through the bathroom closet.
I had looked in that closet a few weeks earlier, when my mother was in the hospital with Myelodysplastic Syndrome, a pre-leukemia auto-immune cancer. While searching for some of her medication, I had discovered a cardboard box filled with prescription bottles dating back thirty years.
“Dad! There is a bottle of Valium here from 1972! Can I toss it?”
“Whatever.”
I don’t know when this phrase of the slacker generation became a part of my father’s lingo, but it suited him now. “What do you want for dinner?” “Whatever.” “What time do you want to eat?” “Whenever.” “Do you want to put your shoes on or are you going out like that?” Etcetera.
After more than a year of my mother’s daily medical appointments, experimental treatments, hospital stays and progressive deterioration in the “Rehab Center” (a.k.a. nursing home), my eighty-four year-old father was defeated, depressed and disillusioned. He could make no more decisions. He hadn’t slept in a year. He had lost thirty pounds.
After sixty-two years of marriage, my father, already the embodiment of constant worry and anxiety, had finally faced the one thing in life he could not control: his lifelong companion was going to die before he did.
It was supposed to have gone the other way. My father, though in relatively fine health, has spent the past thirty years of his life obsessively planning for the disbursement of his estate.
Mom, a product of the Betty Crocker/Bird’s Eye frozen food/pre-1960s women lib generation, was clueless when it came to finances. Balancing the household budget was my father’s job. He had been an electrical engineer. He was good at math. He liked math. The day could only be considered complete if all numbers were in order, if all figures were balanced, if everything added up.
My mother, though no good at numbers and money, was in charge of everything else. She was wife, mother to three boys, cook, maid, caretaker of her own mother who lived with us in the house, graduate Psychology student and, eventually, workplace professional.
At one point, my father’s brother also lived with us, along with my Bubbi (my mother’s mother), and a cat named Taffy. One Sunday afternoon, when I was around thirteen, my mother, who was in the kitchen listening to opera on the radio, turned the volume up to LOUDEST and proceeded to smash every plate in the cupboard. The circuitry in her multi-tasking Motherboard overloaded.
I assume that’s where the Valium circa1972 entered the picture.
* * * *
After my mother’s death, my father needed order. He needed activity. And so began the cleaning of the closets, the dispersal of the heirlooms, the organization of sixty years of household items – things saved by my mother, “just in case”.
In addition to thirty years worth of useless prescriptions, there were, in the same bathroom closet, fifty little washcloths, four inches by three inches – red, yellow, green, blue, white, all neatly piled on top of one another.
There were also sundry colored and sized bath towels, beach towels, sheets (fitted and regular, twin and single), miniature soaps in the shapes of seahorses and seashells, topical ointments, bottles of Bactine, and band-aids so old that the adhesive was missing.
In a kitchen cabinet, there were hundreds of plastic containers, of every shape and size. On the chance that the Israeli army should stop by for a meal (you never know), the troops could take a little something home with them – some leftovers from Passover, perhaps.
In addition to a kitchen refrigerator freezer packed with meat, chicken and ice cream, there was an additional freezer in the basement filled with birthday cake from two years prior, cookies labeled and color-coded, even meals my mother had cooked before being admitted to the hospital, so that my father wouldn’t starve.
Next to the freezer in the basement, there was another cabinet filled with enough canned peas, carrots and corn to last a good half-year, in case of nuclear fallout.
In other areas of the house, there were rubber bands, plastic bags, kitchen gadgets from the 1950s, notes from classes she took throughout her life. Of course, there was also the good stuff: the pictures, the books, the letters.
My mother collected; my father removed what she collected. Now there are five bath towels, five hand towels, five washcloths. There are just enough plates, bowls and pans to cook what is needed for a small family meal.
My father is throwing everything out.
“Dad, you still live here.” “I don’t want you to go through the trouble, so I’m doing it now.” He does not want to be reminded that he might live to be a hundred.
About a year after my mother’s death, I came to the house and saw that dad had moved mom’s bed out of their bedroom.
Ever since I was born (and conceived, I imagine), my parents shared twin beds – not the kind from ‘60s sitcoms where there was a night table separating them, but two conjoined separate beds, with two sets of twin sheets and two separate blankets. I suppose the cuddling is one of the first things to go after the initial forty years.
My parents were, however, connected by a single headboard, which was wide enough for both beds. Dad had moved her entire bed – mattress, box spring, metal frame – into the basement, by himself. And then he moved the headboard.
There is now a very respectable guest bed next to the furnace. When I asked why he had done this, without calling me or my brothers to help, he replied, “Gimme a break. It was easy. I just pushed it along, and then I shoved it down the cellar stairs.”
He had placed his own twin bed towards the center of the bedroom wall, and there was now a dingy, grey outline of the headboard that had lived in that position for the past twenty years, the period that my parents had lived in this house. Now, with the headboard gone, the outline looked eerily like a headstone looming forebodingly over the sleeping figure of my father.
My father and I are friends now, something I never thought possible when I was a thirteen year old boy, frustrated because he didn’t understand me, had no capacity to understand me.
Every night during my junior high school years, we would sit around the dining room table, collaborating on my math homework, and every night, it ended the same way: I would become discouraged and impatient, and he would get agitated and depressed.
I now spend as much time as I can with him. I live in New York City, and he is still in suburban Boston, but there have been periods, because of my work, when I have stayed with him in his house – for a month, two months. I enjoy cooking for him (something I never do on my own), and keeping him company. Unlike my mother, my father only occasionally watches television or listens to music. I am always keenly aware of how quiet the house is. But when I am there, I often look in at him at night, in that bedroom with the solo bed and the grimy headboard/ headstone outline. At night, he does watch the T.V. in the bedroom, and he invariably falls asleep with it on. His glasses are at the tip of his nose, and he is snoring softly. He is wearing his powder blue pajamas, and a hint of one pale, thin, hairless, ankle will be exposed slightly above a crumpled white sock. I will creep into his room, take off his glasses and turn the television off. It is at those times I can see the young man at twenty – madly, insensibly in love with a beautiful young bride, so full of hope and dreams and a future wide open to him, the son of poor Russian immigrants. In his wedding pictures, he is handsome and lean in his crisp khaki Lieutenant’s uniform, and he is smiling, standing next to the stunningly vibrant woman with whom he would share the next sixty-two years.
It is the routine that keeps him going. Every night he makes the same salad. He refuses to buy the store-bought, ready-to-go concoctions. He needs to create the same salad his wife made him for all those years. He chops the lettuce (he has recently taken the bold leap from iceberg to romaine), tomatoes, onions, green peppers. He does not like celery. When I am there to join him for dinner, we will set the dining room table. He very purposely (though it’s never been stated) now sits at the place at the table where my mother used to sit, and I occupy his spot. I suppose he does not want to look across the table, to the place where he directed his eyes during so many dinners, and look at the place where my mother once was. So he sits in her seat, instead, and faces his old chair, which I now occupy. It takes a death in the family to realize the intricacies of ritual table settings.
He will always put out at least five different types of salad dressing. I will always include a vegetable and starch. We will have dessert later – usually a bowl of ice cream – as a late(r) night snack. This is what he is used to. The consistency is comfort to him and, for me, it is the consistency that I wish I had, that I once had, that I grew bored with, that I long for once again.
When I was there recently, he confided that he was having “trouble making the bed in the morning”. When I asked him if by “trouble” he meant physical or emotional, he confessed that it was emotional. He wasn’t sure what the point was anymore. I certainly understood this, having experienced the same sense of depressed fatalism during much of my life. Why make the damn bed when no one sees it? This feeling passed easily for him, though, as it invariably does for me. We each understand that although others may not see the unmade bed, we see it ourselves. And that is enough to propel us to make the bed, one day at a time.
Sholom Aleichem, the 19th century Yiddish storyteller, wrote, “No matter how bad things get, you’ve got to go on living, even if it kills you.” There is a time to collect things and a time to let them go, and there is benefit to both. Like Aleichem’s ever-suffering character, Teyve the Milkman, we try to find the balance, to live in the thin fissure between hope and despair, between regret and fulfillment. We hopefully live long enough and wise enough to learn the difference between “letting go” and “giving up.” And this is what I’ve learned by observing my father. Whether pushing a bed downstairs, giving away washcloths or simply maintaining his daily routine, my father, at age eighty-six, is trying, in his own quiet way and in his own time, to locate the balance.
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.
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.
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.
Conversely, complications from diabetes led to multiple operations to try to save his foot before it was finally amputated. Seven years ago, he had gastric bypass surgery—which, he says, plunged his weight from 400 pounds to 152 and put his diabetes into remission. Research shows that many people with diabetes have this outcome after weight-reduction surgery.
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 [1994].
His second book, Spontaneous Combustion, was published in [1991]. 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.
BW: Absolutely.
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.
Bruce Ward 