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.
Some Resources
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. 😎
1985 TIME Magazine article on ”AZT: A Ray of Hope in the Fight Against AIDS”2021 Still Here
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.
Choosing Mindbloom
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.
The Kit
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
The Basics
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.
First Treatment
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.
After-effects
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.
Continued treatments
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.
Going Deeper
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.
What Next?
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.”
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.
Over the years, I have continually had to adjust to a “new normal.”
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.
A New Normal: Telling my story at The AIDS Memorial/NYC, June 1, 2021
Friends: This is a 1-minute “teaser” for my 7-minute storytelling gig this past June 1, as part of a collaboration between The Generations Project and the NYC AIDS Memorial.
On June 1 & June 10, ten long-term survivors and allies told our stories of resilience and survival, in a continuing effort bear witness to history.
To watch my full 7-minute story, and the stories of the other 3 participants from June 1, please click on the link below. Their stories will inspire you, no matter your background or experience.
Thank you.
One Sunday, about fifteen years ago, I was visiting my then 85-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 AM, bottom for PM.
That’s when I realized that, at age 46, I had been sorting pills much longer than my 85-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”.
One Sunday, about fifteen years ago, I was visiting my then 85-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 AM, bottom for PM.
Hey, folks. I was interviewed for this AARP Magazine article, for my perspective as a long-term survivor. Interesting and timely article, all-around. Take a look. 😎
“It is as if the residents of Provincetown are the culmination of all who have gone before: the Portuguese fishermen and their descendents remain, as do the parsimonious New England Methodists, the ‘60s hippie-artists, and the ‘70s Village People handle-bar mustached gay men. The iconoclasts, drag queens, lesbian comics, townies, high school students, even the babies: they all seem to know that they are in an enchanted place, a place untouched by time or animus.”
A friend recently asked to read this piece from 2007, so I am adding it here. For those who cherish the magical “specialness” that is P’town, and for those who have yet to experience its wonders, this is my Valentine to the little Portuguese fishing village, at the end of the world. I hope you enjoy it.
I am once again standing on the breakwater overlooking the Long Point lighthouse in Provincetown, Massachusetts. I come here off-season, to this tourist town that shrinks from 60,000 in the summer to 3,000 residents after Labor Day, when I feel the need to clear my mind. Provincetown in off-season is a place I often go for healing – from a crisis in work or family or relationship, or just for respite from the din and sensory overload of New York City life. Standing here, looking out to the immense Atlantic, I feel as if I am at the end of the world.
Located on the very tip of Cape Cod, Massachusetts, P’town (as it is affectionately dubbed by residents and tourists alike) is surrounded by water. If you were to walk to the easternmost point of the peninsula, you would encounter the Long Beach lighthouse, one of the oldest in the country, built in 1826. If you continued east past this historic landmark, you would fall into the Atlantic Ocean. After P-town, there is nowhere else to go. You either stay put or go back in the direction from where you came.
The Mayflower Pilgrims knew that when they landed in Provincetown waters in 1620. After a five-week sojourn, during which the adult males signed the “Mayflower Compact”, the Puritans determined that the terrain was too rocky and the water too salty for suitable colonization, and they turned their ships around and sailed back up the coast of Cape Cod. According to a timeline of Provincetown located on the online site, provincetowngov.org:
At last, in late December, the Mayflower and her company departed this harbor and sailed over to Plymouth, where they may or may not have noticed a certain inconsequential geological object known ever after as ‘Plymouth Rock.’
Ever after, Provincetown would be a place for the intrepid, the stalwart, a place that set man against nature. It would become a sanctuary for the idiosyncratic, the loner, the outsider, and a destination for those on the run: a place to hide, but also a place, once arrived, where you could be yourself. Many who ended up there were also running and hiding from something, from someone. You didn’t ask why your neighbor was there, just as you didn’t want him to question you.
Provincetown’s bad boy image probably began with the first settlement of fishermen’s shacks on the beach. It was known as a wild place inhabited by a cosmopolitan group of fishermen, smugglers, outlaws, escaped indentured servants, heavy drinkers and the “Mooncussers,” who were said to have lured ships to their doom by placing lighted lanterns on the beach at night, thus forcing ships to wreck on sandbars offshore and then salvaging the cargo.
In 1908, P’town became a safe harbor for black slaves, before heading north to Canada, as part of the Underground Railway System. During the early part of the 20th century, the town was a haven for writers, artists, and those living embracing the “Bohemian” lifestyle, including Eugene O’Neill, John Reed, Louise Bryant and Edna St. Vincent Millay. The 1960s brought counter-culture hippies and flower children; gay men and lesbians began to migrate there in the 1970s, and in the 1980s, many people with AIDS found in P’town a community in which they could live with comfort and dignity, and in safety from political and personal harassment.
* * * *
I first started to going to P’town in the 1960s, when I was a baby. My parents, who lived in suburban Massachusetts with my two older brothers and myself, would often rent a cottage in the town of Dennisport for two weeks in August. Dennisport, located about ninety miles from Boston and sixty miles from P’town, is almost directly situated at the halfway point of Cape Cod, which is marked by the Sagamore Bridge on one end and Provincetown on the other.
Those Cape Cod weeks, which stayed fairly constant each August through my early adolescence, constitute some of my fondest childhood memories. Our contingent of family and friends (which would often include grandparents, cousins and babies) would spend leisurely days on the beach, lazing in the sun (no ozone warnings then), building sandcastles and frolicking in the waves of the icy cold Atlantic. As a baby, I was taught to swim by my mother, who would hold me in her arms and chant, “One, two, three, dunk!” as we dipped beneath the water’s surface. This was followed the next summer by my father’s tossing me up and across the sky into the ocean, following the same numerological mantra. Our evenings would be spent eating clam rolls and soft-serve vanilla/chocolate swirl ice cream, and playing miniature golf, our faces beautifully bronzed and our minds slightly delirious from a day of incessant sunshine.
On the first cloudy day (God willing – a chance to let the tan seep in), we would pile in the car and drive to Provincetown to “see the artists” and buy chochtkes, the Yiddish definition for charming, worthless seashore junk. My mother, having studied as an Art major at Hunter College, reveled in the counter-culture scene of the 1960s. She had made the choice at nineteen to marry my father, two years her senior, an Army 2nd Lieutenant during World War II. During their first two years of marriage, he was often stationed away from my mother and, when logistics permitted, she would join him. It is difficult, even today, two years after my mother’s death, to imagine her living in Army-issued housing in Macon, Georgia, in the sweltering summer, without air-conditioning. But she was young and they were in love. Following her graduation from Hunter, she chose the more conservative role of suburban wife and mother, at least until all of her three children were grown, when she went back to graduate school.
She once revealed to me that she had smoked pot and “didn’t like it.” Unlike the picture of her “shvtzing” in the Southern heat, I could well imagine my mother smoking (or at least trying) dope. I could see it in her during our weeks on the Cape – the housewife persona would begin to shed during her first day on the beach, as she dove into the waves, wearing her fashion-of-the-moment one-piece bathing suit and flowered bathing cap. Upon reaching the shore, she would doff her cap and shake out her semi-dry hair. Even smoking her Kent 100 cigarettes, she looked like a young Vivien Leigh or Elizabeth Taylor. Everyone said so. I see photos of her now and I agree.
When we went to P-town, the mask of propriety shed even further. In those days (pre-gay Liberation Stonewall), Provincetown was not thought of as a gay-friendly town per se – just artistically inclined and accepting of all bohemian lifestyles. My mother would study the sidewalk portrait painters creating their caricatures. My own portrait was painted twice – once when I was twelve, and the second time when I was fourteen. The first painting was lost in shipping during a family house move, and my mother insisted that I have the exact same pose replicated the following summer. The portrait of my youth still hangs in the dining room of my father’s house, like Dorian Grey overseeing every holiday meal.
Even my buttoned-down father was more relaxed during these summer months, though he more so while ambling on the Dennisport beach than amidst the crazy energy created by the artistic hedonism of P’town.
Between the ages of ten and fourteen, I spent four consecutive summers at a sleep-away camp in Wellfleet, two towns north of P’town. During each of these summers, I would travel to Provincetown twice: once in July with my cabin-mates and counselors (by camp bus or by riding the hilly twenty-mile terrain on three-speed Schwinn bicycles), and once in August with my parents during “parents’ day”. Whichever way I got there, the visits were similar: engorging myself on fried clams, soft-serve ice cream and penny candy, and being both awed and titillated by the counter-culture hippie artists. They seemed so happy, so free of the shackles of suburban conformity. They were not hemmed in by mind-numbing nine-to-five jobs. They didn’t have their dreams quashed by the orthodoxy of raising two-point-three children and the aspirations to an upper-middle class consumerist lifestyle. They had made other choices. They weren’t my parents.
My last time in P-town as a teenager was when I was seventeen. Then, at age twenty-two, I came back, this time refitted with a new identity. During those intervening years, this refuge for ‘60s Bohemians had become a major gay and lesbian tourist destination, and I was now a major gay tourist. It was 1981 and I was horny. After years of suppressing my sexual nature and desires, I was the kid in the penny candy store. P’town was no longer just fried clams and street artists and ice cream (though it still was all of those.) It was men and dancing and men and bars and drinking and laughing and men and dancing. And men. One man, in particular. I fell in love with the houseboy at my guesthouse. The affair ended disastrously after we tried to transfer an idyll romance into the real worlds of New York and Youngstown, Ohio, but in those five summer days, I discovered my first Provincetown transformation as an adult; I felt a freedom in my bones that I had never dared to imagine. Dancing to Laura Branigan’s “Gloria” on the deck of the Boatslip, consuming seafood pasta with a group of New York gay friends (i.e. not my parents), getting stoned on the beach at noon and drinking copious amounts of beer at midnight, having heart-to-hearts with a person I was falling in love with, underneath a full moon and a blanket of stars: these were all new experiences for me. P’town had again worked its magic, in a different way from when I was a child or a teenager.
Each time I journey to P’town, I go with no expectations. And each time is a transformational experience. The restaurants and shops change. The costs of owning a home, eating out, staying at a guesthouse, have become almost prohibitively expensive. But there things about the town that never change. When I was a baby, my father shot reams of film footage of with his 8mm Kodak Brownie home movie camera. We still have these movies, now transferred onto videotape (itself now also a relic.) One of those grainy reels contains images of P-town’s Commercial Street, the main thoroughfare. Some of the details are different, but the scene is the same: Automobiles still inch along the narrow street, tourists still window-shop for tacky t-shirts, and restaurants and bars still dot the street. The cars are now red Jeep Wranglers instead of blue Ford Mustangs, the fashions are different, but one detail has remained the same: there, clear as a the red crustacean on its shingle, is The Lobster Pot, in its same location, on the corner Commercial and Standish Streets. Still the best place to order fresh lobster, unadorned, the Lobster Pot has been a staple in Provincetown for over twenty-five years.
It is this consistency that keeps me coming back year after year, no matter the season. The home mortgage rates may rise, and the names of the restaurants and shops may come and go, but the P’town city council has been adament about retaining certain by-laws year after year. Despite the absurdity of allowing cars to peck their way through Commerical Street, the traffic remains. The restaurants and shops fill every space on the street, and there are no chain stores. The restrictions on building new property, from as height requirements to expansion to water useage, are enough to thwart a new owner. Except that there is such good money to be made. There is comfort in this consistency. It ensures that, along with always being a haven for misfits, outlaws and outcasts, P-town is also a place where one can go home again: there is a solace amidst its crazy constancy. This also helps in its transformational qualities: in its atmosphere of comfort, it is easier to try on a new identity, to escape an old life (if even for a short while), to forge a new beginning. And one either stays or returns back North, hopefully with a new-found sense of purpose.
* * * *
As the Pilgrims would have attested, even the journey to Provincetown takes determination. This is the primary characteristic of the town: most of the tourists, and certainly all of the residents, have a purpose for being there. They are there for a reason. One does not mistakenly slip into Provincetown. It is not a place that can be passed by. It is a destination.
During the fall and winter months, the number of travel options is limited to car, bus or plane, since the ferry from Boston stops running in October. I live in New York, but have family in Massachusetts, and this weekend I have rented a car for the expedition to my spiritual homeland. I haven’t made this trip in a while and have forgotten the number of obstacles involved. First, I must dodge the quintessential “Boston driver,” for whom a left-turn signal on a three-lane highway is considered a sign of weakness. After getting through the dense Boston traffic on the confusing Central Artery, I am faced with a myriad of quick decisions, as road signs indicating “North” are really going South, and those cantankerous, signal-impaired South Shore commuters do not show much mercy as I try and make a swift directional decision. I am challenged by squeaky tin-horn honks by ladies from Saugus in hair rollers and Peterbilt truck blasts from grizzled tattoo artists wearing backwards Red Sox baseball caps. Both drivers give me their versions of the middle-finger salute, though only one of them accompanies this gesture with colorful regional language. (Hint: it is not the truck driver.)
I am surprised to find that the Powers-That-Be have removed the next official obstacle: the Sagamore Bridge traffic circle, located at the foot of the Cape. Every time I have reached this part of my journey, I have found the choice of exits to be overwhelming. There is a Christmas Tree store (which seemed to be busy even in August) at one exit, a Burger King at another, and signage covered in foliage at each of the four possible arteries. Legend has it that a family of four in a 1964 station wagon drove around for four hours, until they ran out of gas. They may still be there. Today, the rotary is paved over. This is regrettable, since I have been looking forward to this exit in order to use the restroom. I have now missed the only exit to the Burger King, and now I have passed the thirty-foot sign at the entrance to the Bridge, encouraging motorists to call the Good Samaritans hotline. After enduring aggressive accelerators, hieroglyphic highway signs and a full bladder, I can understand the impetus for an otherwise sane person to get out of his car and consider jumping.
Once over the bridge, the next challenge is the thirteen-mile one-lane road. While it can be quite lovely during the summer months observing the quaint Cape Cod scenery of five-dollar T-shirt stores and soft-serve ice-cream shacks, it is not so pleasant during the off-season. Besides, I still need to use the restroom. I am stuck behind a great-grandmother, out for a Sunday drive in her dead husband’s mammoth Cadillac (probably back from a day at the Christmas Tree shop), barely able to see over the windshield, driving twenty-eight miles per hour in a thirty per mile lane. Given that there are no passing lanes on this thirteen-mile stretch, I am forced to suck on the tailpipe in front of me. This is particularly maddening when, ahead of the tank in front, there are miles of empty road. We seem to be the only two cars on the road, when, just a moment ago, I was in the Grand Prix bumper car road race.
In the summer, I will almost always choose to take the Fast Ferry from Boston, which only takes an hour and a half, and on which I can get a head start on my tan. But as I get closer to my destination, I try to remind myself that part of the satisfaction of the trip is in its challenge, and that the journey can be as important as the destination.
After completing the thirteen-mile one-lane stretch of highway and leaving the little old lady in the dust, I drive past the towns of Sandwich, East Sandwich, Orleans and Wellfleet, and enter Truro. I am starting to feel relaxation enter my pores. Now is the time to roll the window down all the way. I stick my left hand out and let the chilly November wind tease my fingertips. Radio reception returns and I turn to the oldies rock station on the F.M. dial and blast it. I sing along with Bruce and Aretha. I smell the salt from the ocean, and hear the seagulls summon me to their territory.
Then I wait for the moment. I know when it will come. I climb the crest of a small hill, and, on the descent, I see, to my left, a row of little white cabins perched along the lip of the oceanfront, like pristine Monopoly pieces. It is the image from countless paintings by countless Cape Cod artists. In front of the cabins, I can make out the whitecaps on the ocean’s waves. And then I am on a two-lane strip of highway, with the ocean on my left, and the bay on my right, as I pass the sign, free of foliage, clear as a Welcome mat – the sign that says “Welcome to Provincetown.”
And I feel the weight of the journey, and the city I left behind, and the job and the halted relationship, and all the stress and anxiety –I feel it all begin to melt away, and I breathe in the salty air, and exhale a deep sigh of contentment. I have arrived.
* * * *
In keeping with its tradition of inclusion, Provincetown is a place that offers something for everyone – all ages, colors, nationalities, sexual preferences, religious and political beliefs are welcome here (though perhaps supporters of the current Republican administration would be advised to keep that belief to themselves.) The athletically inclined may choose the rigorous bicycle trail that ends with the rewardingly breathtaking apex of white-sanded Race Point beach. Other beach goers will ride in another direction, locking their bikes at a wooden fence on the highway, and make the quarter-mile trek across marshland to the more secluded and stony terrain of Herring Cove beach. Imbibers may quaff in the Rock and Roll atmosphere of the Town House, where heterosexual bikers in black leather jackets play checkers and sing karaoke, or in the dungeon of the Vault, where homosexual men pretending to be bikers will cruise each other and watch porn on television sets hanging from cages. Historically minded literati may choose the Atlantic House (known as the “A” house), where Scott and Zelda drank and fought. If you need to ask “Scott and Zelda who?”, you might want to sip martinis and watch a drag show at the Crown and Anchor. Gourmands are in luck: unlike many tourist destinations, the cuisine in Provincetown is truly exceptional, ranging from family-style breakfasts to romantic, pricey dinners of quail and shrimp-stuffed lobster.
One of the rewards of spending so much time in P’town is the discovery of some of the more secret pleasures, such as the dune shacks. The entrance to the trail that leads to the dune shacks is not well-known to the average tourist, and it can be a strenuous walk in the mid-day heat. These six or seven shacks are just that: shacks with no running water or electricity, located on the dunes, tucked away by the bayside. They are rented by fishermen, artists and writers, who want a simple place to lay their heads at the end of the day. One shack, in particular, is a well-loved secret place to those in the know. A journal lies on the desk in this spare space, with only a bed as the other piece of furniture. Guests enter the shack and write messages to the owner and to each other. It is a bit post-modern Thoreau and a bit secret society.
Ritual is also part of the comfort factor of P’town. Massachusetts, still clutching at its ethics, remains an early-to-bed/early-to-rise town, relatively-speaking, and P’town is no exception. The bars close at one A.M., and at that time, the place to be is on the street outside Spiritus Pizza, where surprisingly excellent pizza is actually served inside. Here, friends reconvene, and new friends are made, if only for the night. One summer, in the early 1990s, a rebellion occurred here: A resident of the town, upset that drunk tourists were using her flowerbed as a urinal, unearthed a little-known city ordinance stating that no one could step foot on the street after one A.M. Since this law had never been challenged since its inception, most likely during the Pilgrims brief layover, the local police were compelled to enforce it. This was not acceptable, particularly by the militant dyke townies, who took the opportunity to voice their visible protest by dipping their feet onto the street outside Spiritus, chanting slogans about police brutaility, while their gay brethren stood safely on the curb, cruising and eating pizza, confident that their sisters-in-crime would solve the problem. Which, of course, they did.
The decades-old ordinance was removed the next day, though public nuisance laws (such as peeing in lawns) were still in effect.
Most of all, though, for those of us who venture there year after year, and for those who came to visit and (unlike their Mayflower counterparts) actually stayed, P’town is special because of its people. It is as if the residents of Provincetown are the culmination of all who have gone before: the Portuguese fishermen and their descendents remain, as do the parsimonious New England Methodists, the ‘60s hippie-artists, and the ‘70s Village People handle-bar mustached gay men. The iconoclasts, drag queens, lesbian comics, townies, high school students, even the babies: they all seem to know that they are in an enchanted place, a place untouched by time or animus. Ellie, an eighty-year old transsexual, still sings outside Town Hall every night in the summer, the dogs still wear handkerchiefs around their necks, the hot straight men still cruise the gay ones, with their girlfriends clutching their hands tight. Marijuana is still the drug of choice here. “Cher” rides a motor scooter down Commercial Street, handing out flyers. Tourists buy fudge. It is truly a world of “live and let live”.
And so I am here again, standing on the breakwater, overlooking the oldest lighthouse on the Cape, a little light at the end of the world. It is late fall, and the sun is beginning to set over the marshland. There is a bite in the air as it sails from the white-capped water, forcing me to zip my sweatshirt up to the top of my neck. I can see the lantern on top of the empty light keeper’s house, with its fixed light exhibited thirty-five feet above mean high water, visible for thirteen nautical miles.
The aching sorrow of the lonely foghorn in the distance reminds me of the one that haunts O’Neill’s morphine-addicted Mary Tyrone, with its soulful attempt to pierce the veil of the past. It is very likely the same low moan that inspired O’Neill when he lived here. But I take comfort in the beacon of light that has, for centuries, guided strangers to its shores. It continues to search the vastness of the dark ocean as it revolves around its nest, each determined turn of the endlessly seeking light beckoning, beckoning, reminding me of the possibilities for the future.
Chapter XIII of my ongoing personal chronicle of the 1980s, “Years of Living Precariously”, in A&U Magazine.
“Eventually, the movie houses closed. The Anvil closed, the Saint closed, the baths closed, Fire Island virtually shut down, Provincetown was Province-Ghost-town, the Castro became deserted. Dancing stopped. Laughter was muted. Every person was a potential Bodysnatcher. Entire armies of men sheathed in rubber. There was no joy in Gomorrah. Donna Summer had left the building. Young gay men had nothing to do, so they joined gyms.”
1986: Donna Summer Has Left the Building Part XIII of an Ongoing Chronicle of the First Fifteen Years of the AIDS Pandemic by Bruce Ward
David Reuben’s Everything You Always Wanted to Know About Sex* (*But Were Afraid To Ask) sold 100,000 copies in 1969, and remains one of the best-selling nonfiction books of all time.
I was fourteen years old when I read it, clandestinely scouring the indices of my mother’s psychology books, in search of the word “homosexual.”
Here is an excerpt from the one brief chapter Reuben allows on the matter of homosexuality, his shortest chapter in the book:
The majority of gay guys, when they cruise, dispense with the courtship. They don’t even have time for footsie or love notes on toilet paper. Homosexuality seems to have a compelling urgency about it. A homosexual walks into the men’s washroom and spots another homosexual. One drops to his knees, the other unzips his pants, and a few minutes later, it’s all over. No names, no faces, no emotions. A masturbation machine might do it better.
No names. No faces. No emotions.
Well, that didn’t sound appealing to me at all. I ran the other way, as fast and as far as I could.
Following my HIV diagnosis in 1986, reeling from the stigma and rejection by paramours, the dental clinic, the media, and by society, in general, a new cycle of shame emerged. I turned to the darkness of porn movie houses and gay bookstores, trolling bars until closing, sometimes even on weeknights. I figured that as long as I was turning heads, even in the darkest and dirtiest of atmospheres, as long as I was desired by desirable men, then I must still look good. And if I looked good, then I must still be healthy. As long as hot and healthy-looking men were willing to have sex with me, then I was able to keep panic at bay. There would be plenty of time to be reclusive and celibate—when I was covered in spots and as thin as a toothpick.
With each encounter, I wanted more. The more I had, the more shameful I felt. The more shameful I felt, the more depressed I became. Was this all that would be available to me now? Is this what I was worth? The more depressed I became, the more I thrust myself into that world. I was an addiction cliché. I was Batman in reverse: do-gooding healthcare education worker by day, the Religious Right’s poster child for deviant, diseased homosexual at night.
I followed the “safer sex” guidelines of GMHC and the NYC Health Department, so it wasn’t the sex act itself that was shameful to me. And I was not under the influence of alcohol or drugs. Despite the religious Right’s call to have people like me castrated, I knew I wasn’t purposely putting anyone’s life at risk or adding more risk to my own. But the shame and secrecy enfolded me as tight as a shroud.
So this is what was left of life: nameless, faceless sex in dark, seedy balconies that reeked of desperation. With married men from Connecticut who were also each overflowing with shame and despair and lust. With other newly minted Positive men who didn’t care anymore, who just wanted some human touch, some validation.
Maybe David Reuben was right, after all. I did not deserve to be loved.
Anything, anything to fill the void. The fear in the air was palpable. The desperation. The loneliness. The anxiety. And yet none of us could talk about it with each other. We were all terrified. The only way we knew how to deal with the emptiness was to be with each other in the way in which we were accustomed: in silence and in shame.
And now there was evidence to support what we had been taught all our lives: Sex with another man was so unnatural and so against the laws of nature that it literally could kill you. AIDS was a real downer for liberated sex junkies everywhere.
We all thought this would be over in a few years. We thought if we just fought hard enough and long enough, if we shouted loud enough, if we showed our determin-ation and stamina, surely this would be over.
But the bodies continued to pour down like water. Jim, Michael, Bo, Vito. The AZT was toxic, the doctors were helpless, bodies shrank to ninety pounds.
I remember walking into a hospital room and thinking I was in the wrong room because there was a eighty-year old man in what was supposed to be Michael’s room. And the old man was Michael, who was thirty-six.
And there would so, so many others yet to come.
Eventually, the movie houses closed. The Anvil closed, the Saint closed, the baths closed, Fire Island virtually shut down, Provincetown was Province-Ghost-town, the Castro became deserted. Dancing stopped. Laughter was muted. Every person was a potential Bodysnatcher. Entire armies of men sheathed in rubber. There was no joy in Gomorrah. Donna Summer had left the building. Young gay men had nothing to do, so they joined gyms.
Bruce Ward 