Mary E. Woesner, MD

A psychiatrist attempts to stay positive while facing her parents' and loved ones' premature deaths-ever reminding us that hope springs eternal.

 of my private practice, in the 1980s, I was the psychiatrist for a number of patients who had HIV or were exposed to HIV.

 At the beginning of the epidemic, every patient had a fatal disease: there was no effective treatment and they all knew they would die within months.

I was familiar with providing supportive psychotherapy for patients with a terminal illness because my first patients were young adults with untreatable cancer, referred by a colleague at Memorial Sloan Kettering Hospital. I remember one young woman with lymphoma who came at the behest of her family. She was not depressed or in anguish about her prognosis and gave me the hope I was struggling to find for her.

She displayed such equanimity that I wondered if she knew how close to death she was. Were her doctors in denial and unable to share the diagnosis with her?

 Was she not given a timeline? Were there things she wanted to do before “the end”? She related that, yes, she was informed and that all she wanted to do was continue her college studies, which she did until she was hospitalized and died. She persevered and carried hope-like a small bird in her hand-until she passed away. I never saw her cry or rage. She reassured herself.

How unusual was this? I would later learn-in my practice and my personal life-how difficult it was to maintain hope in the face of premature death.

The gay patients I worked with in the early 1980s had either a rare pneumonia called pneumocystis carinii

 or the “gay cancer” known as Kaposi’s sarcoma,

 or both. The men with pneumonia were thin, feverish, short of breath, coughing, and frightened. The men with cancer were thin, with purple rashes, in pain, often unable to eat, and frightened. Their immune systems were being ravaged. No one knew why and how.

It soon became clear this was not a gay disease. For example, it was not caused by exposure to a sexual stimulant drug or to an infectious agent contracted in the gay bars and bath houses, as previously believed. It appeared in a variety of populations. In 1982, the disease was termed “AIDS” (acquired immune deficiency syndrome). A year later, the mode of transmission was identified. In 1984, the retrovirus causing AIDS was 

While this feverish scientific work was underway, the young men in my practice were suffering and dying. In sessions, we were sorting through their disparate emotions: anger (at the homophobia around them and at the killer disease); guilt (did their behavior play a role?); fear (too young to die, with a life ahead of them); and hopelessness.

Their daily lives were filled with the horrific consequences of the disease: an inability to work; loss of supports because gay friends and lovers were also dying; loss of family when they were “outed” to their families by the disease or someone else; the constant trips to the emergency department or hospital; the adverse effects of treatment; the financial consequences and refusal of the insurance companies to pay for pre-existing conditions; and, in some, the onset of hallucinations/illusions and other symptoms of delirium and dementia.

I struggled with my dying patients to maintain hope. Some had none and considered suicide: “I am going to die soon anyway.” My statement of hope became: “Let’s use all the treatments and resources we have to prolong your life. 

There could be a treatment around the corner.”

On March 19, 1987, the corner was turned. The FDA 

 the approval of azidothymidine (AZT), the first drug to treat AIDS.

 AZT increased CD4 counts and, while the effects diminished over time and AZT was not a cure, the treatment brought hope by prolonging life. HIV/AIDS remained a fatal disease until nearly a decade later, when HAART (highly-active antiretroviral therapy) was developed and HIV/AIDS became a chronic disease that could be treated and managed.

Toward the end of the first AIDS decade, the 1980s, memory problems developed in my father and I was forced to confront my own feelings of hope vs. hopelessness.

At first, I felt hopeful. A few years earlier, in his early sixties, my father received a diagnosis of Lyme disease and Lyme hepatitis. Symptoms included memory problems and “

 which were known to be sequelae of chronic Lyme disease. The consultant performing my father’s neuropsychological testing advised us to get a baseline test and a follow-up test. If the findings remained static, they could be the result of chronic, treated Lyme disease, and not progressive dementia.

I was very hopeful that year between tests. I fantasized that the findings from the first test would remain the same. “

We can manage his minor memory problems as they are,” 

I thought. I was in healthy denial. Unfortunately, I was soon informed he had progressive dementia and this early diagnostic experience was to be the first crack in my edifice of hope.

The second crack came when I reviewed his treatments with his doctors. As a psychiatrist, I knew they had little to offer us. But there was always the hope that I missed something in my review of the literature. By this time, tau proteins and beta-amyloid were being 

 in the pathology of Alzheimer disease (AD),

 but, as I feared, there was no medical treatment for my father. He could not use tacrine (Cognex), which was toxic to the liver and later discontinued. I focused on social and behavioral interventions and the doctors focused on me-to prevent caregiver burnout, they said. I sought to prevent burnout by reminding myself: 

Then in 1996, the FDA approved donepezil (Aricept) for treating all stages of AD. The approval of donepezil reminded me of the approval of AZT for AIDS-a medication for prolonging but not arresting or curing the disease. Donepezil slowed decline by approximately 

I was his caretaker for over 13 years. During that time rivastigmine (Exelon) and galantamine (Reminyl) were approved but offered little more than donepezil did. I am now primary caretaker for another loved one with dementia. But it is harder for me to say to myself: “

There could be a treatment around the corner”

 because, according to the former director of the Office of Alzheimer Research at NIH,

 and development (R&D) efforts have failed to yield any effective interventions for neurodegenerative diseases.”

 Sadly, one of the more promising drugs for AD recently 

After a long practice, I have come to appreciate how little difference there is between ourselves and our patients. And, for all of us, there remains the one important struggle: to maintain hope.

Dr Woesner is Director of Medical Student Training at the Bronx Psychiatric Center in New York City. She is also Associate Clinical Professor, Department of Psychiatry and Behavioral Sciences, at the Albert Einstein College of Medicine, Montefiore Medical Center, Bronx, NY.

And a Time to Die: How American Hospitals Shape the End of Life

. Chicago: University of Chicago Press; 2006.

3. Gottlieb MS, Schanker H, Fan P, et al. Pneumocystis pneumonia-Los Angeles. 

4. Friedman-Kien AE. Disseminated Kaposi's sarcoma syndrome in young homosexual men. 

5. Klein H, Gallo R, Yarchoan R. Discovery of HIV. In: National Institute of Health. 

In Their Own Words: NIH Researchers Recall the Early Years of Aids.

https://history.nih.gov/nihinownwords/docs/page_04.html

6. US Food and Drug Administration. HIV/AIDS Historical Time Line 1981-1990 

https://www.fda.gov/forpatients/illness/hivaids/history/ucm151074.htm

7. Fischl MA, Richman DD, Grieco MH, et al. The efficacy of azidothymidine (AZT) in the treatment of patients with AIDS and AIDS-related complex. A double-blind, placebo-controlled trial. 

8. The CDC Reveals the Truth About Lyme Disease. 

https://www.amenclinics.com/blog/the-cdc-reveals-the-truth-about-lyme-disease

Alzheimer’s Disease – The Past, the Present and the Future

http://article.sciencepublishinggroup.com/html/10.11648.j.sjcm.20170601.11.html

10. Bryan J. Donepezil – A major breakthrough in the treatment of Alzheimer’s disease. 

https://www.pharmaceutical-journal.com/opinion/comment/donepezil-a-major-breakthrough-in-the-treatment-of-alzheimers-disease/11052671.article

11. Khachaturian ZS. 40 Years of Alzheimer's Research Failure: Now What? 

https://www.medpagetoday.com/neurology/alzheimersdisease/75075

12. Sullivan MG. Idalopirdine falls short in three phase 3 Alzheimer’s trials. 

https://www.mdedge.com/clinicalneurologynews/article/155797/alzheimers-cognition/idalopirdine-falls-short-three-phase-3

Articles

The Treatment Around the Corner

Life is about bonding, but it is also filled with loss. 

 loss,” an early mentor once reminded me.

In the early 1980s, whole communities-and eventually nations-were decimated by an unforeseen plague. It began in southern California, where young healthy gay men contracted 

pneumonia and other opportunistic infections (OIs) found in the immunosuppressed. In 1981, in New York City, physicians found a rare tumor in the same group; the tumor was Kaposi sarcoma (KS) and was usually found in elderly men of Eastern European descent.

 and the “gay cancer” were spreading among the gay men of Greenwich Village, where I had recently opened my psychiatry practice. Greenwich Village is an area of lower Manhattan with a history of artistry and iconoclasm. In the early 1980s, it was also the home of a vibrant gay community. It was the rare place in America where gay people could walk hand-in-hand and display affection. It was also a font of creativity, filled with the shops of artisans, designers, and antique dealers.

At the time, I received many referrals from primary care colleagues and I began to take gay men as patients. Many had KS/OI and were facing death. I was there to help them with their 

 and I was as helpless as they were. They were so young! They had people they loved, and their lovers were dying as fast and tragically as they were. They were so unprepared. They had books in publication, they had patients in their offices, they had antiques to buy and sell. And their physicians had no treatments. (AZT was not approved until 1987.)

One day, O. P. walked into my office, referred by a friend. I had prepared myself for another story of sickness and imminent death, but O. P. did not have the virus. He was a young, gay entrepreneur who was physically healthy but emotionally devastated. “I cannot control my emotions,” he told me. “I’ve lost more than 50 friends to GRID. To AIDS. One was my lover.”

I knew that GRID (gay-related immune deficiency) was the term used by researchers before they learned that the virus, and immune deficiency, went well beyond gay men to hemophiliacs, straight partners, infants, and others. In gay communities, GRID was known before AIDS.

“Someone from my grief group killed himself. When that happened, it triggered a flood of losses. Now everything triggers terrible memories.” The sound of a patient using a pentamidine nebulizer in his doctor’s office triggered memories of his lover on the respirator in the intensive care unit at the local hospital. Even his grief group was unhelpful to him because “each new member reminds me of what I’ve lost.”

He was having an anniversary response to the loss of another friend, who had died 2 years earlier after great suffering. He was guilty that he was not there when the friend died. He felt equally guilty that he had not known his grief-group friend was suicidal.

He could not grieve for his lover because he could not talk about their love. He was a grieving widow, but his friends could not validate his widowhood. O. P. had only recently renewed his relationship with his former lover, before the lover died. He spoon-fed his lover, bathed his feet, and cared for him for months-but because they did not live together and because his lover had other lovers before, he felt he could not claim to be his widow. His sense of rage and isolation overwhelmed him. When caring for his lover, he was constantly frustrated at attempts to get him the best of care; the insurance companies were often deaf to requests for coverage. The national government was failing him and his friends. He wondered if he could ever freely express his homosexuality again.

From my work with the gay community, I was well aware of President Reagan’s silence and his failure to fund research, and the blame coming from the top-where AIDS was seen as the wrath of God visited upon gays. I was aware of the AIDS activism in the Village, of Gay Men’s Health Crisis, and of attempts to raise money and awareness. I was also mindful of the shunning of gay men by the straight community because of beliefs that they brought it upon themselves and because of fears among straights that they could catch it. Although the modes of transmission were identified in 1983, people remained uninformed and fearful. After all, Ryan White, the young hemophiliac with AIDS, was banned from school in 1985 due to “the inherent fear that would generate among classmates.”

Ultimately, O. P. expressed the self-destructive urge to go out, have sex, contract AIDS, and die.

O. P. had a major impact on me at the time and in the years since. At the time, I was living in the East Village. Over several months, I watched as my upstairs neighbor and friend was wasted by AIDS. One night, flashing lights alerted me to the arrival of an ambulance at the gate and, as I watched through the window, I saw my neighbor carried out on a stretcher in a black body bag. As I remember, the body bag was very small, much like that of a child. As I grieved, I thought of O. P. with his flood of losses.

Since my encounter with O. P., there has been research into the population of O. P.s-those men who remain resistant to HIV infection despite sex with HIV-positive partners-and further research into other “exposed-uninfecteds.” Many questions remain.

For me, O. P. was not someone to be explored for biological correlates of an effective immune response. For me, this man was the one tree left standing alone in a decimated forest.

He was alone because he lost so many friends and his lover to AIDS. He lost the very people who had become his family and who substituted for the biological family that rejected him because he was gay. He was alone because he could not be a grieving widow. He was alone because he was shunned by his government and by those who feared he was contagious. He was alone because he was losing his identity as a gay man.

Now, when I think back on his plight and isolation, I marvel that he could remain standing. He reminds me of many other courageous young men-the writer, the newly graduated physician, and all the others whom I treated and who died of AIDS. He also reminds me of the vibrant gay community that was destroyed by a microscopic retrovirus.

After years of death from HIV/AIDS, the gay Village was smaller. As the epidemic began to wane, I took a walk down Christopher Street. I was grieving the Village and envisioning all the inhabitants who had died. I looked for the artisan’s shop where I’d bought my office desk a few years earlier. The shop, with its hand-carved furniture pieces and friendly owner, was gone. It was replaced by a pizza parlor.

Dr. Woesner is Director of Medical Student Training at the Bronx Psychiatric Center in New York City. She is also Associate Clinical Professor, Department of Psychiatry and Behavioral Sciences, at the Albert Einstein College of Medicine, Montefiore Medical Center, Bronx, NY.

 “Do Not Go Gentle Into That Good Night,” by Dylan Thomas, who visited and died in the Village.

 MacNeil CH. School bars door to youth with AIDS. 

http://www.hemophiliafed.org/news-stories/2014/03/1985-ryan-white-banned-from-school-because-of-aids/

Now, when I think back O.P's plight and isolation, I marvel that he could remain standing. He reminds me of many other courageous young men-the writer, the newly graduated physician, and all the others whom I treated and who died of AIDS. He also reminds me of the vibrant gay community that was destroyed by a microscopic retrovirus. 

Author | Mary E. Woesner, MD

Articles

The Treatment Around the Corner

A Flood of Losses