“Grief is madness–ask anyone who’s been there. They will tell you it abates with time, but that’s a lie. What drowns you in the first year is a force of solitude and helplessness exactly equal in intensity to the love you had for the one who’s gone. Equally passionate, equally intimate. The spaces between the stabs of pain grow longer after a while, but they’re empty spaces. The cliches of condolence get you back to the office, back to your taxes and the dinner table– and for everyone else’s sake, you collaborate. The road of least resistance is paved with the gravel of well-meaning friends, rather like the gravel that cremation leaves”. – Paul Monette, Last Watch of the Night
The landscape of my life, personal history, memories and dreams are all 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. I clearly remember that morning in July, 1981 walking back to my house in the then unknowingly already stricken Fire Island Pines, reading that ominous first story about a rare cancer affecting gay men in Los Angeles and New York. My immediate reaction was anger and skepticism. We were blissfully unaware of how we were about to be inundated by what that brief article reported. I dismissed the news story as some kind of hysterical, homophobichype perpetuated by the medical establishment and media in an attempt to frighten gay men into conforming to mainstream sexual norms.
How naive and oblivious all of us were, not knowing that the then unidentified infectious agent had already begun it’s deadly journey, spreading through hundreds of thousands of people, framing our lives. Being forty five, an AIDS widower who is infected but healthy on a combination of anti-retroviral drugs, I do not have the luxury of still assuming that I am living through my middle age, rather than the twilight of my life. Since the early 1980s, when AIDS began to decimate the gay community, I have been surrounded by illness, death and grief. My oldest brother, Henry, died of AIDS in my apartment in 1984. My best friend and colleague in my private practice, Luis, died of AIDS in 1989. Six men in my apartment building died of AIDS in the last few years, as have more than 100 of my clients, while dozens more are now symptomatic or in the hospital. Four of my closest friends died in late 1994, and hardest to bear, my beloved partner, Lee, passed away in late 1994, at age 32, from the disease
Recently when RSVPing to an invitation for a friend’s fiftieth birthday party I mentioned to the man, what a pleasure it was to have the opportunity to socialize at an event that was not a funeral or memorial service. 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 dying clients and friends end their lives 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 lifespan, 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. In 1983, I began to volunteer at Gay Men’s Health Crisis (GMHC). 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.
When my clients and friends began to learn about their HIV infection and become symptomatic, I had to learn a whole new set of coping and clinical skills. Before AIDS, active alcoholism, drug addiction and Hepatitis B were the only life threatening illnesses that were likely to kill the gay men who made up most of my clientele. All I really knew about counseling clients and their families at the end of life was Elisabeth Kubler-Ross’s work on the stages of death and dying. Back then, I remember being surprised and annoyed when my friends or clients refused to follow the predictable, linear pattern she had laid out. Without realizing it, I romanticized death and unconsciously glorified each of the dying people I knew either personally or professionally. I wanted to see them as noble and worthy of my care because of their nearing death, and I was constantly brought up short: people die in character. I didn’t yet want to see that a self-involved man who became sick with AIDS might very well handle his illness narcissistically and die the way he had lived, thinking only of himself. I had to learn I wasn’t going to like everyone simply because they were dying, and that death doesn’t necessarily transform people for the better.
My brother was a painful example of this. As adults, Henry and I had never gotten along well, despite both of us being gay, but when he arrived in New York penniless, homeless and sick, I invited him to stay. Although I took care of him and made sure he was comfortable and had what he needed, we never grew closer as brothers. I hadn’t liked him before he became ill, and nothing improved during his stay with me. When he died, I mourned the loss of a brother, but I was also relieved that Henry was out of my apartment.
Hollywood has pumped us up with a sanitized, sentimental version of death: everyone is gathered around the dying person’s bedside and fences are mended, old wounds are patched up, then the dying imparts a last jewel of wisdom before the gentle closing of the eyes. There’s no shrieking with fear, no groaning from the intolerable pain, no dying alone in an impersonal hospital bed, no homophobia. I’ve seen supportive families have a hard time with an AIDS-related death. Lee’s parents wouldn’t come to see him before he died. They couldn’t bear to see their beautiful son wasting away and so they put their own needs before his. This doesn’t make them bad; it’s just a sad fact that we don’t always rise to the occasion, even when we’re confronted with the finality of death.
I have seen this in myself. Despite everything I know about the progression of the disease, I would lose my patience with Lee toward the end. Adjusting to his dementia was taxing, and at times I would yell at him about something that, in hindsight, was really insignificant, like the way he would ask me the same question five times because he couldn`t remember the answer. It was a struggle not to direct my frustration at him, and underneath it all was the painful reminder that he was leaving me. I don’t think any of us is prepared for our partner suddenly becoming a dependent. Slowly, as he stopped being the perfect companion he had always been, I found myself missing who he was even before he was gone. The last time I yelled at him, he turned to me with upturned palms, shrugged and told me, ” I can’t help it that I’m demented!” I suddenly felt about two inches tall and, after apologizing for losing my temper, I vowed never to yell at him again.
One of the most complicated aspects of my work is that, from the first moment in 1982 when one of my clients talked about the mysterious symptoms he was experiencing, I was aware that my lifestyle was no different from his or most of my other clients who were becoming sick. We visited the bath houses, had anonymous sexual encounters, and certainly had never heard of safe sex. When we began to understand what this new illness was, I knew that in all likelihood, I was watching a preview of my own demise. It was impossible to maintain my clinical detachment in those first few years of treating clients who had AIDS. Every client was me-the afflicted, the survivor, the one who is left, the one who will have his turn. I had to confront my discomfort with illness, the horrible smells, the fear of being around people in pain or losing their faculties, and stay present as a therapist.
And then there was the problem of burnout: everyone I knew, it seemed, was on death’s doorstep. The first few deaths of my friends and clients were terribly traumatic. Even as I grieved and went to the funerals and memorial services, I grew angry and frustrated that these men’s 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 an acquaintance, a friend or 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.
When Henry was near the end and camped out in a hospital bed in my living room. and Luis was in the hospital being treated for an AIDS-related illness, I went to visit a client who was also in the hospital with AIDS. It had taken me an hour to get across town and I was feeling stressed and overloaded by the time I got up to his room. Grant was glad to see me, gave me a big smile when I walked in, and when I asked how he was doing, he said, “I think I’m about ready to die.” I had been seeing this 38-year-old lawyer for five years, and my response to him was, “I can understand why you would feel that way,” and then I changed the subject and, shortly after, I left.
When a well client (who isn’t suicidal) says he or she is ready to die, often this is a kind of conversational hyperbole, but when a hospitalized AIDS patient says it, there are myriad questions to ask, including what medical or family or economic issues have lately come up to make them feel ready to stop living, and is this an appropriate response when he no longer has the energy to continue fighting for his life. Part of my job at that time is to help tthe client discuss all of his feelings about wanting to die at that point in their illness. But in my overwhelmed state, I was ready for everyone to die so I could have a life again, and so I accepted Grant’s statement and didn’t probe any further.
Later that day, I took a taxi back to the hospital and apologized. ”You know, I’m sorry I didn’t ask you why you felt ready to die. What’s going on?” Grant was visibly relieved I had returned, and told me the hospital was ready to discharge him but he had become incontinent and was afraid of soiling himself at home, where he had no one to take care of him. His shame at this loss of control was more fearful to him than dying. I got on the phone and managed to extend his hospitalization. He died there, three weeks later.
I waited a long time to be tested, putting it off until there seemed to be some reason to do so. Once there was an indication that the drug AZT might help people with AIDS if it was used early enough, I took the plunge. Of course, I assumed I was positive-I had had sexual partners who had died of AIDS. Even so, I was shocked when I heard the words, “You tested positive.” Suddenly, every headache was a brain tumor. I became the worst hypochondriac and talked about “When I get AIDS” incessantly to myself and everyone else. I struggled with the ethics of taking on new clients when I might get AIDS and die before they were ready to end therapy. After six months in a terrible depression, I realized I was still in excellent health-knowing I had HIV hadn’t changed anything-and gradually I came back to life. But, like a cancer patient who is in remission, I have to keep checking to make sure I’m not on the decline. Every long-term commitment, like renewing the five-year lease on my office, brings me back to the uncertainty of my continued existence. I haven’t had the luxury of retreating into a comfortable denial about my mortality because I have been spared no unimagined detail about what an AIDS related death might be like. When I am feeling particularly morbid, I dwell on these scenarios. Most frightening to me is the prospect of becoming demented while maintaining an awareness that it’s happening. At the end of his life, Lee couldn’t watch TV, forgot names and would get lost on the block if he went out unattended. The indignity of losing my independence scares me the most.
I was a participant in the New York Blood Center’s Hepatitis B study of gay men in the mid 1970s., whose serum was frozen as part of the study. After the development of the HIV antibody test, the researchers tested all of the frozen serum, and I was able to learn that I had a confirmed exposure to HIV1 since at least 1977. I have never had any HIV related symptoms or conditions other than low CD4 cells and PCR viral activity. Thus I am classified as a “nonprogressor” or “long term survivor.” As comforting as my continued good health is, every day is filled with angst and uncertainty that accompanies living symptom-free from HIV disease while at the same time, each moment contains the possibility, if not the promise of progressing into full blown AIDS and eventual death.
Living with the knowledge that at any moment I could be stricken complicates making long term plans and running a psychotherapy practice, taking on new clients, and planning for the future while being aware of the time-bomb within me. Do I tell my clients I’m HIV-positive? Should I be preparing them for the time I will no longer be here? One of my patients began treatment with me following the death of his three previous therapists from AIDS!.
I have been privileged to witness several inspiring endings, which taught me how much I could do to help a person die well. In the final weeks of Luis’s life, he was living at home and every breath was a struggle. His lover, Dennis, sat by his bed, held his hand and told him he loved him very much. He thanked him for all the wonderful years they had shared, and then he wisely told Luis that it was alight if he died. His friends also let Luis know it was okay with us if he died. This was the first time I had ever said those words to someone, and it was excruciating. But that night, Luis’s breathing eased and he died peacefully early the next morning.
About fifteen minutes before he died, I gave Lee an injection of morphine, climbed into our bed, held him and told him how much I loved him, how much the years we had shared meant to me, that they were the best years of my life and that he would always be alive in my memories and in my heart. I told him that I would miss him terribly. As difficult as life without him was going to be, I assured him that I would be alright, and told him that it was alright for him to let go. When I held Lee in my arms and said those words to him, my heart broke but I also knew it was right. His body was no longer useful to him. Undramatically, Lee just stopped breathing, and this gentle, sweet man left me. I felt grief, and loneliness, but I didn’t feel numb.
Though both of my parents, my oldest brother, best friends, numerous other close friends, and over one hundred men whom I had seen as psychotherapy patients had all died, I had never before been present at the actual moment someone made the transition out of life. It was startling in it’s suddenness. One moment this man was lying in our bed struggling for breath and the next he was silent and calm having left the world we shared. One moment I was a devoted partner, caring for my beloved mate, and the next I was a widower. Witnessing Lee’s death was precious, as was knowing that he trusted me to follow his wishes exactly during this critical period when he couldn’t be in control for himself. I realized that the previous ten years of counseling people with AIDS and their loved ones had all been preparation for being with and helping Lee throughout this final phase of his life in addition to helping me cope with my own grieving.
As a therapist who had counseled over fifty men whose partners had died, I thought I would be prepared for the progression of my mourning. What hubris!! I couldn’t have been more wrong. I was knocked flat on my ass by the intensity of all that I felt in the weeks and months following Lee’s death. All I could do was to constantly remind myself that I was powerless over my mourning. My only choice seemed to be to surrender to the experience and ride the waves of feelings that even a year after his death threatened to overwhelm me. I knew this was how I would get through this particular phase of my grieving in the healthiest way. From observing friends and clients who had lost a partner, I also knew that these feelings would diminish over time, and that eventually I would feel better. Immediately after Lee died I felt as if part of my soul and very essence had been amputated. I doubted that I would ever again feel happy, or even simply ever again experience the absence of sadness. There was a period when I was furious that I was feeling all of these things, and enraged that Lee had died, necessitating my going through all of this emotional turmoil.
Over the years, burnout has turned into gratitude that I’m alive, I want to be as viscerally and emotionally present as possible. Why waste a minute? I get more done in a day than some do in a year. The exquisite intimacy Lee and I were able to have together during his illness was a transcendent experience. I started to feel that there’s an essence of each person that may be both biochemical and spiritual, and as he ended his life, I was able to make contact with his irreducible self with such depth that I now understand what people mean when they say of someone who has died, “He is still with me.” I may be a skeptic about the afterlife, but I find a spiritual quality in being present in the here and now, which gets me through the loss.
My work is very meaningful. What a gift to be able to connect in this extraordinary way with so many good souls; so instead of feeling in jeopardy of burning out, I am thankful to have had the privilege of accompanying Lee, my friends and clients on the last journey of their lives. I have twice been the last surviving individual coordinating care for a dying friend. Luckily I am making new friends, and a few of my very old friends are not infected. Yet I still worry at times that when my time comes there will not be anybody left to care for me. Is this paranoia, or a completely rational fear in the face of this never ending plague? So much of my work with clients with HIV/AIDS is to help them find hope and balance this with a realistic acceptance of what is happening to their bodies and lives. Attempting to find and balance hope is a daily component of my own life as well.
One place I have always searched for meaning in the midst of life’s dilemma’s or tragedies is in literature. The following lines from Morris West’s Shoes of the Fisherman seem customed tailored in their relevancy to all people living with or affected by HIV/AIDS who struggle to remain full human beings in the face of such devastation.
“It takes so much to be a full human being that there are very few who have the enlightnendment or the courage to pay the price. One has to abandon altogether the search for security and reach out to the risk of living with both arms. One has to accept pain as a condition of existence. One has to court doubt and darkness as the cost of knowing. One needs a will stubborn in conflict, but apt always to total acceptance of every consequence of living and dying.”
Category: AIDS/HIV Articles