I work out of the second bedroom in my Manhattan apartment. After spending 45 minutes on the Nordic Track early in the morning, I see my first client “B” who is a fifty year old fireman whose partner of 27 years died almost a year ago of Cancer. Neither he nor his partner were infected with HIV. He is stumbling through life adjusting to being a widower and trying to learn how to do for himself all of those things that he once counted on his partner to do for him. I spend the session empathizing with and validating his feelings while simultaneously trying to keep my feelings in check, even though it has been more than four years since I buried my own beloved partner after his death from a series of AIDS related lymphomas. I jot a note to remind myself to bring the intensity of the feelings stirred up by this session into my own supervision and therapy later in the week.
My second client is “L,” a youthful HIV positive man who is also grieving the loss of his partner “C” from AIDS less than a year ago. Additionally “L” is dealing with a flare up of Chronic Active Hepatitis B for which he is preparing to undergo a liver biopsy. During the session, he is in tears, lamenting that while he has his family and friends to provide support, he does not have the special attentions of a partner “to do for me all that I did for “C” during his various hospitalizations.” My heart goes out to him as I have thought those same things at various times since Lee died.
The third man I see is “M” who is also HIV positive and though never having experienced any physical symptoms of HIV disease, the level of virus in his blood stream is detectable and increasing. So far, he has chosen not to take any medication, but he feels that the time is approaching when he will need to begin some form of therapy. Our sessions are filled with his discussing all of his feelings about how his condition is progressing and the uncertainties associated with taking the powerful new medications. After “M,” I go to the gym for an hour and a half to help do something purely physical that takes my mind off of the work I have already done and that lies ahead.
The landscape of my life, personal history, memories and dreams is littered with the corpses and ghosts of loved ones, clients, colleagues and just fellow members of my tribe and community who have died in this plague. Being a middle aged HIV positive gay man living and working in Manhattan’s Chelsea neighborhood, which is literally one of the ground zeros of the AIDS epidemic in North America, there is no way it could be any different. Since the early 1980s, when the AIDS plague began to spread within the gay community, I have been surrounded by illness, death and grief. My best friend and colleague in my private practice, Luis, died of AIDS in 1989. Six men in my apartment building have died of AIDS over the years, as have more than 100 of my clients. In the face of so much loss, those accounts of a tunnel of white light or the soul’s triumphant escort by a chorus of angels seem like a child’s story devised to soothe and comfort. I’ve had to become matter-of-fact about how the body inevitably fails us, and most of the time I don’t worry about what happens when we die. I try to stay focused on how to live life well and how to help my clients live well.
This is nothing like what I expected I would be doing when I was training to be a therapist. Back then, I had certain young and hopeful ideas about the potential of human beings, within a normal life span, to grow in self-awareness. My job as I saw it was to help them make changes that would allow them to lead happier lives. But by the mid-1980s, I suddenly found myself with a clientele made up largely of gay men who were either symptomatic with AIDS or anticipating the onset of symptoms, many of them under the age of 40.
Beginning in 1983, as a volunteer at the Gay Men’s Health Crisis (GMHC), which is the world’s oldest and largest community based AIDS service organization, I have worked with dozens of gay men with AIDS, and supervised a team of volunteers caring for the then desperately ill and dying. At that time, GMHC was sounding the alarm that this illness was going to become an epidemic in the gay community. Even those of us working with AIDS clients every day could not wrap our minds around how this illness was devastating our community. As an action oriented person, the hardest thing for me was knowing that despite my most creative and skillful clinical maneuvers, I was not going to change the essential fact that these men were dying. I had not been trained as an oncological social worker. Since the onset of the AIDS plague, I have been learning how to do this work while simultaneously being immersed in providing both patient care and training to other professionals who knew even less than I did about the essentials of HIV, working with gay men, injection drug users, young people who were dying and their families.
Today is a special day as it will be the final session of a support group I have been leading for over six years for the social workers on the AIDS team at St. Luke’s Roosevelt Hospital Center in Manhattan. When I was first hired to run this group, these professionals were in a constant state of crisis due because of the staggering number of client deaths they regularly experienced.
Despite the excellent supervision they received, the hospital and department were in an enormous period of change and transition that left none of them feeling well enough supported professionally or secure about being able to maintain their jobs. With the advent of the new triple combination anti-retroviral therapies available, client deaths became increasingly rare, even among the inner city injection drug using population that made up the majority of the individuals on their caseloads. Today, while the various fiscal cut backs still create a climate of job uncertainty for these skilled and dedicated social workers, they have become a cohesive team and have learned how to weather the varieties of personal and professionally demanding situations that are a routine part of HIV social work. While we have discussed that there would always be some need for an ongoing support group, most of the members and I have come to the general consensus that the group has really run its course. Riding the subway back to my office, I review the work this group has done and my role in helping them provide services to some of Manhattan’s most disadvantaged and difficult to serve individuals. I allow myself to feel proud of the part I have played in facilitating the process and the crucial work these wonderful people have engaged in for the previous years.
The first session after returning from the hospital is a lunch time appointment with a male couple. “R” and “T,” who have been together seven years, are a mixed HIV antibody status couple with “R” being the person with AIDS and “T” being his HIV negative partner. When I first began working with them, “R” was critically ill and most of our sessions focused on helping them adjust to “R’s” deterioration, share their feelings about what they were going through, begin their mourning individually and as a couple, and plan for greater levels of caring for each of them. At one point, I referred them to a group run at GMHC for couples where one or both partners have HIV. Their regular attendance in this group provided them with an enormous amount of support, both from the two social workers leading the group and from the other couples who were also struggling to learn to survive and thrive as best they could with one or both partners suffering from this life threatening illness.
Now the picture was entirely different. “R” had regained his health entirely as a result of the triple combination therapy referred to as HAART (highly active anti-retroviral therapy). He has returned to work full time and is as robust, strong and energetic as he has felt in many years. This resurgence of his health had some unexpected side effects, primarily the destabilization of his partnership with “T.” As he began to grow stronger and accept the fact that he was not going to die soon, he recognized that though he felt strongly for “T,” he did not want to spend the rest of his life coupled with him. “T” is understandably hurt, but also recognizes that had “R” not gotten ill so early in their relationship, they might not have developed into anything more than a passing affair. The work at this point consists of encouraging them each to honestly express to one another their feelings about the relationship and it’s likely ending. Amidst the tears, pain and fears there is a lot of genuine love and acceptance that this upcoming transition will inevitably and likely be in both of their best interests.
Next, my session with “S” is especially trying. “S” is a 29 year old superstar hair stylist who is making enormous amounts of money. At the time of his last HIV test he was still uninfected despite repeatedly having unprotected anal intercourse while high on amphetamines. He has not been able to either cease or reduce his drug binges and only attends AA or NA for three or four meetings. During sessions, he confesses his most recent lapse and vows that it will be the last time. Therapy has helped him see that though he is not physiologically dependent on the drugs, he behaves like an addict and is frequently behaving in highly impulsive and self destructive ways. Even the recent deaths of two of his close friends from overdoses of a “recreational” drug they all were doing has not motivated him to enter a drug treatment program.
“S” enters the session looking pale, wasted and obviously recovering from the effects of “partying” on drugs. Before I even say anything to him, he reports that he has partied again. “I’m not surprised. You really look like shit. Do you know that you look like you have AIDS?” I say to him.
“Do I really look that bad?” he responds.
“I’m not exaggerating at all, and I’m surprised that your clients aren’t reacting to how badly you look.”
“Actually my bookings are down.”
With that I proceed to remind him that I have already told him that I do not feel that I am helping him any longer. In fact I believe that our sessions are enabling him by allowing him to think he is doing something to help himself when in fact he is not. He just nods in agreement. When I tell him that this will be our last session unless he either goes into a rehab, or commits to staying drug free and going to at least one 12 step meeting a day, he just looks at me.
“S” I can’t just sit here and watch you kill yourself with the drugs and unsafe sex. You need an intensive drug treatment program before we can do the work in therapy that you need. If I continue to work with you I will be an accomplis to your death.”
“You really think that if I don’t stop I’ll be dead?”
“Remember, “F” and “V” I remind him.
The session ends with my telling him that the only way I will be willing to see him again is if he wants my help in getting into a rehab or he has been clean and dry and working a program for at least six months.
I have four other sessions with people whose issues do not directly relate to HIV or AIDS. Colleagues and friends often ask me how it is that I’ve been able to work in AIDS for so long, dealing with all the pain and suffering endemic to this patient population. Others ask whether it’s overwhelming to have intimately known and worked with so many people who have died or who are dying. I have had to struggle to learn that I am indeed doing something by simply sitting with clients, caring about them, and encouraging them to share any and all of their feelings about what is happening to them. Of course, I am unable to change the outcome of their illness. Accepting this reality, more than anything else, has taught me how to tolerate discomfort.
The discomfort I experience is about many things. Often it arises from a genuine empathetic connection with clients who are honestly experiencing feelings about their loss of health, career, lover, and their own imminent death. Once I have grown to care about a person, I feel all the accompanying discomfort about losing that person. Sometimes there is simply the uneasiness of being close to a person who is very ill or who is dying, simply because this reminds me of the fragility of my own good health. Before the onset of AIDS, active alcoholism, drug addiction and Hepatitis B were the only life-threatening illnesses likely to kill my patients.
My first professional experience with AIDS was in 1981, when a psychotherapy client began exhibiting symptoms of what we now know is HIV illness. At that time AIDS was unknown, but shortly thereafter, the syndrome was labeled “Gay Related Immune Deficiency” (GRID). It soon became clear to me that the men who were sick with this new disease had lived no differently than I had for many years. I assumed that if these people were getting sick, there was an excellent chance that the same thing could or would probably happen to me.
Beginning in the earliest days of the epidemic there was the problem of burnout: everyone I knew, it seemed, was on death’s doorstep. The first few deaths of my clients were terribly traumatic. Even as I grieved and went to the funerals and memorial services, I grew angry and frustrated that my clients’ lives had been cut short. Some of them were tremendously gifted and creative, and the loss seemed unspeakably tragic. Then, after so many deaths, I went through a period of numbness and couldn’t grieve for anyone. People would tell me about someone who had died–someone who may have been my client for a time–and I wouldn’t be capable of calling his lover to express my sympathies. I was overwhelmed and shut down, not just to loss but to every kind of connection. I didn’t know how to deal with it and felt like a passenger on the Titanic as it began to take on water, running from end to end offering my meager ministrations as the ship kept sinking. As treatments began to improve, the crisis and siege mentality of the work began to abate.
Therapy work with people with HIV and AIDS can seem banal as we discuss everything from wills to bowel movements. It may not seem as if much is going on as I sit with clients in their hospital rooms talking about their medical treatments, or just murmured soothing words as they endured intense physical pain. My simple questions to clients with dementia may not penetrate their mental fog. But I truly believe that just being there and caring about them is extremely healing.
There are different stages of therapy with clients who have AIDS, and each stage may be radically different, Clients who have just found out, or are just dealing with their positive HIV status, I encourage to talk about their fears, their regrets, their anger. I tell them about long-term survivors and nonprogressors-people like me who have HIV but don’t become symptomatic. When it seems clinically appropriate to do so, there have been clients with whom I identify myself as a long-term survivor to give them some living embodiment of hope.
This work has changed me profoundly. It has caused me to lose the illusion of my own mortality that so many of us hold on to irrationally. The work has helped me tolerate enormous amounts of uncertainty and discomfort both in clinical and personal situations. Most of all, it has humbled me. I feel proud to have been among the first social workers in the world who were there working with individuals and families affected by AIDS. I feel extremely privileged and blessed to still be here and doing this work when so many of my colleagues are now gone…way too soon.
Category: AIDS/HIV Articles