Resistance, Repentance & Responsibility

So, Bert, what HAVE you missed?  

You and I never met in person so I feel like we have a lot of catching up to do. I’m Johnny’s cousin Jeff. We are cousins by way of Johnny’s Grandma Ettie, who was my great-aunt. Although I knew all about the Manzons from my Aunt Ettie, Johnny and I first met at her 90th birthday party. We instantly became family. During Ettie’s final years, and especially during her final days in hospice care, Johnny and I became even closer, bonding over the very special woman who connected us. After all these years of learning about you through Johnny, it’s time you and I got to know each other better. We are more interconnected than I ever realized. I consider you my cousin as well!

So let me tell you a few more things about how we’re connected. In reading “What I Miss?,” I came across a photo in the piece “Being Michael.” The photo had the title “Brothers of Other Countries,” and it had Cary Alan Johnson in it. What a surprise that was! I’ve known Cary since I was 9 years old. My mother, who was white, was a wonderful elementary school teacher, and Cary was the only Black student in her 5th grade class. She took Cary under her wing, seeing that his light, potential, and promise needed a certain kind of nurturing. My brothers and I got to know him when we were all kids. Both Cary and my mother’s love for him made a deep impression on me in my youth. When I got to junior high school, Cary was also enrolled there. He was a bit of a school celebrity, always starring in the school musical productions. He was quite a talented singer and I was quietly proud to have him as my “brother.” Though Cary and I never spoke much, we always said hello and shared the connection of my mother. Even at that age, Cary took his identity very seriously and my mother often talked about the importance of supporting Cary’s exploration of his Blackness. My mother, and my father too it turns out, kept in touch with Cary and his mother well into his adulthood. I’ve kept in touch with Cary all these years as well. I last saw him at my mother’s funeral five years ago and we embraced as brothers mourning the same mother. It’s hard to explain the sense of connectedness I felt with you, Bert, when I saw him in the “Brothers” photo.  

My mother’s relationship with Cary is such a strong example of the impact a teacher can have on a child’s life. I am sure this extends itself to you. The fact that you were a high school teacher at City-As-School, a New York City school that offers students who never fit in at a traditional high school a fighting chance to get a quality education, makes so much sense to me. Here’s where the interconnectedness of things comes up again. When my own son Manny enrolled at City-As-School to finish high school, I told Johnny all about it. Johnny became all animated, telling me about your years as a teacher there. Manny was assigned to your close friend and colleague Ummi Modeste as his college readiness counselor. When Ummi and I discovered the connection between us through you, I regarded her as yet another cousin. Her attention to Manny made a huge difference in his struggles with school and enabled him to start at LaGuardia Community College last fall. The two of them have kept in touch since he graduated, and cousin Ummi will remain part of our family. I wonder how many students you took under your wing and made a difference in their lives by making the light that shined in them burn even brighter.  

I think you’d approve of the life that I’ve lived. I became entwined with HIV from the moment I entered medical school in 1982. We were immediately taught about this mysterious new disease killing young gay men in New York City. It wasn’t even called HIV yet but it was the defining health condition for medical students and residents of that era. Fighting AIDS was more of a calling than a career decision on my part. Fighting complex diseases requires expertise, intelligence, insight and straightforward humanity on the part of the treating physician. No doubt. But at the time, no other disease demanded the level of passion needed for the fight the way AIDS did. Jumping head first into a fight against a disease that had no treatments had great appeal to me. There was a war to be fought out there and I wanted in. I viewed people doing this as “HIV warriors.” It was all about staying and fighting when so many others were afraid to treat AIDS patients.  

Several years later, in 1992, I took on the job of running a clinic for adolescents and young adults both with and at risk for HIV. While I took great pride in having successfully provided care to so many young people over the years, I had a lot to learn. It is with great humility that I have learned so much about Black queerness through my work. While I take care of a diverse group of young people in my clinic, it is through the lives of young Black gay men and transgender women that I have learned the most. I would never have been able to serve these young people in the way that I have without understanding their lives. As a straight, white, Jewish man, I have had to open my mind to the experiences of others which I would not otherwise have known existed had I not chosen this path in life. I needed to see their lives from the inside to be accepted by them as a healer. It was by historical coincidence that I was right there in New York City at the dawn of the AIDS pandemic, and the things I needed to learn surrounded me on every side. It was apparent to me that this was a disease that was spread by social injustice, fear, stigma, racism, homophobia, and inequality in our society. A virus can do as much damage to a weak social order as it can to a weakened immune system.  

Health & Education Alternatives for Teens, or “HEAT,” became and remains more to me than just a clinic and community outreach program for young people. It is a reflection of my personal values, a part of who I am. Not many people in life get to do what I have been able to do through HEAT. HEAT is committed to fighting so many evils in this world, and having created a platform for so many other like-minded people to share in this fight gives me a depth of gratification that is not so easy to describe. Having a sense of purpose in the world makes it much easier to get out of bed in the morning.   

Things have changed over the decades I’ve been in this fight. We started with an untreatable disease called AIDS, which was a death sentence, and now have “a long-term manageable chronic disease caused by HIV.” I use quotes because it is a line I use every day in my work, scripted but true. Bert, I’m sorry you aren’t around to see how things have gotten so much better in treating HIV and AIDS, but I’m sure you’re smiling about the progress wherever you are. Not only are the medications life-saving in the way they stop the virus from doing its damage, but we’ve also learned so much about the impact of stigma, structural racism and the internalized fears of people living with HIV, and how addressing those systematically can make a huge difference in engaging individuals in care and treatment.    

When the newest plague of coronavirus and its acronymic disease COVID-19 descended upon us, it felt natural for me to dive into this fight head first as well. If you’ve spent almost 40 years fighting one pandemic, it is not that much of a stretch to feel you can take on another. “LET’S DO THIS!!!” was how I felt about COVID-19.

This new pandemic had both similarities as well as some stark differences to the previous one. Much like HIV getting nicknames like “the monster” and “the kitty,” the young people I treat immediately started calling coronavirus, “the Rona.”   

Also, we were fighting a virus we had never seen before, striking terror into society at large. We had no treatment and, much like the early days of the AIDS pandemic, it filled hospital wards with the sickest of patients. Although an equal opportunity offender, it disproportionately killed Black people and exposed inequalities in our society. The doctors and nurses treating these patients had little but supportive measures to offer.

I wanted to be a part of this effort so I volunteered to take on additional duties. My hospital was repurposing every unused corner for COVID care. All of our pediatric patients were either transferred to another hospital or sent home to make space, and the hospital redeployed the pediatric inpatient staff — including me — to take care of very sick adult COVID patients.    

Once part of the inpatient team, I offered my perspectives on terminal illness and called families who could not visit their loved ones to give them updates, both good and bad. The experience was otherworldly. While the rest of the planet was being told to stay home and stay at least 6 feet away from people outside their household, the team of ten or so doctors I was assigned to would be doing rounds in a small room, sitting on top of each other, talking about treating a disease we knew nothing about that could kill us in the act of doing so. We were wearing so many layers of gowns, jumpsuits, gloves, masks and face shields that you couldn’t escape how surreal the experience was.   

I have never really considered myself to be a religious person, but COVID-19 may have turned me into one. The many personal experiences I had dealing with suffering and death related to AIDS over the years had already brought me to a certain level of religiosity. But with HIV no longer being perceived as a death sentence, the intensity of treating it has lessened greatly over time. Then COVID-19 was right in my face no matter which direction I turned. It required faith and belief in something. I turned my thoughts inward.  

I spent months thinking about this without speaking to anybody about how I felt. Sure enough, as Yom Kippur was approaching, I was asked by Rabbi Sam at the Kane Street Synagogue to share my thoughts during Yom Kippur services about my experience as a physician who worked as a front-line provider during COVID and the sorry state of the world. This would all take place on Zoom (a video-conference platform that became a household name in 2020). I wrote and rewrote my thoughts to articulate exactly how I felt about the experience. As requested, I prerecorded what I had to say and didn’t watch it again until Yom Kippur. It was devastating for me to hear and watch myself on a screen express my thoughts so publicly. I realize now how deeply and permanently COVID-19 has imprinted itself on me. (Click here for the video, and here for the transcript.)

It is a brave new world we are living in, Bert. I know you have been and are still missed by those whose lives you’ve touched and the people you’ve loved. I’m sure you are missing them too. I’m not sure you really “missed” out as far as COVID-19. I know you certainly didn’t miss the abomination of the Trump presidency, although I’m sure you would have enjoyed joining the resistance against it. What a nightmare! I am really curious to know what you’d have to say about the world today if you saw it.  


© Jeffrey M. Birnbaum 2021

Jeffrey M. Birnbaum<br>
Jeffrey M. Birnbaum

Jeffrey M. Birnbaum, MD, MPH, is an Associate Professor of Pediatrics and Public Health at SUNY Downstate Health Sciences University and currently serves as the Principal Investigator and Executive Director of Health & Education Alternatives for Teens (HEAT). HEAT is the only program of its kind in Brooklyn to offer comprehensive medical and mental health care, supportive services, and access to clinical research for HIV+ and at-risk youth, aged 13 to 24. Jeff has built HEAT into a system of care that provides age and developmentally appropriate, culturally competent care for heterosexual, lesbian, gay, bisexual, and transgender youth who are living with or at very high-risk for HIV/AIDS, with a particular focus on serving communities of color.

A pioneer in the realm of transgender health, Jeff has championed the health care needs of young people in the House Ball Community. His leadership in advocating locally and nationally for the health care rights of transgender youth has been recognized with several prominent awards. On World AIDS Day 2009, he accepted an award from New York City Mayor, Michael Bloomberg, in recognition of HEAT’s outstanding work with HIV+ adolescents in New York City. In 2012, also in commemoration of World AIDS Day, he received the Linda Laubenstein Award for Excellence in HIV Care by the New York State Department of Health AIDS Institute. Jeff was also awarded the SUNY Chancellor’s Award for Excellence in Professional Service in 2013.

Since 2005, Jeff has served on the board of Coney Island USA, a nonprofit arts organization which exists to defend the honor of American popular culture through innovative exhibitions and performances. Coney Island USA operates a multi-arts center in a landmark building in the heart of Coney Island in which dwells the Coney Island Museum and the Coney Island Circus Sideshows. One of Coney Island USA’s signature events, the Annual Coney Island Mermaid Parade, is one of New York City’s largest parades and draws followers globally. Photo: Justine Cooper

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