LIVING IN THE FACE OF DEATH

First published in Resolute!, July, 1998

Not to be reproduced without permission of the author

The number one best selling nonfiction book both in Colorado and nationally on the week I am writing this column is Tuesdays with Morrie, by Mitch Albom. It is about lessons in how to live from the perspective of a man dying of ALS. The author, whose college mentor was Morrie Schwartz, a sociology professor at Brandeis University, undertook this project after having seen Morrie nearly twenty years later on Nightline, talking about the experience of life with Lou Gehrig's disease. As Morrie put it, "I'm on the last great journey here -- and people want me to tell them what to pack." Morrie's philosophy is a mixture of enthusiastic extroversion and acceptance. However, I was left with the sense that something was missing. His anticipated pearls of wisdom didn't turn out to be particularly profound. For example, on the subject of children: you should have them, and the secret to a good relationship is similar values. For those of us who have been immersed in the AIDS epidemic for almost two decades, this treatment of the subject is a bit simplistic, and although endearing, I was left wondering, "Where's the beef?"

A better book for PWA's on the same subject is one which is more academic, but has much more meat. I would recommend you spend your Tuesdays with Steven Schwartzberg, a gay psychologist, and instructor in the Department of Psychiatry at the Harvard Medical School. His book is A Crisis of Meaning: How Gay Men Are Making Sense of AIDS. In a qualitative study from in-depth interviews with men living with HIV, Schwartzberg unravels the maze of adaptions, successful and unsuccessful, to having their usual assumptions about themselves and the world shattered by the virus.

In our culture we live with a set of core beliefs: (1) the universe is basically just and fair; (2) people can and should control what happens to them; (3) life events are not random and follow the rules of cause and effect; and (4) people are basically good and can be trusted. Schwartzberg points out that "sound psychological functioning is grounded in a self-serving misapprehension of life. Mental health is based less on seeing things as they really are than on ... "positive illusions". The experience of HIV shatters illusion, and can cause a crisis in terms of life's meaning.

Schwartzberg identifies four different ways in which the PWAs he interviewed responded to the crisis:

1. Impassivity:

These are the men who treat HIV as "not that big a deal". HIV minimally impacts or disrupts their lives. This is not "passivity" per se its more a dispassionate reactions without a shattering of core beliefs or emotional upheaval. This person may consciously choose not to identify with HIV as a central part of their identity. This may also be a form of denial. It may be related particularly to asymptomatic individuals. But it also points to the fact that not everyone needs to go through great crisis to effectively cope with trauma. The risks of this style of coping is that it may interfere with staying well informed, and taking good care of one's self; and in being conscientious about safe sex. It also lacks the support that can be there from a sense of community, as there is no identification with other PWAs. Some of these men ascribe to the philosophy can be "If you feel fine, you are fine," leading to a lack of attention to symptoms, t-cells and viral loads.

2. Camouflage:

This is an adaption of self-deception. Although these men talk about HIV being a growth-oriented life experience, their perception of that is superficial, a shiny veneer covering pain and fear. Its risk is that it is facade rather than a solid foundation. When faced with failing health, or bereavement this approach is likely to crumble.

As pointed out at the beginning of this review, self-deception can be useful for one's mental health. People in our culture who don't have a life-threatening illness live by mythical core beliefs. Yet the Camouflage adaption involves excluding unwanted truths rather than confronting them. This is what one of my own clients calls "the ostrich school of reality." It reminds me of an earlier era in which we were taught, "You can't afford the luxury of a negative thought," (or feeling). But feelings of fear, grief, inadequacy, and powerlessness are inevitable. Both those with Impassivity and Camouflage adaptive styles would deny their existence.

3. Rupture:

The opposite of the denial strategies of Impassivity and Camouflage are the individuals who are totally overwhelmed by the experience. A large majority of these men have lost a partner, perhaps two. Many have also experienced multiple losses such as all their close friends, and a large number of acquaintances. As one of the study subjects stated, "I'm saturated in death." Schwartzberg writes, "Here loss, not growth, is key. Gone is the comfort of a safe and orderly world. Gone is the expectation of a lengthy lifespan. Gone is the soothing and helpful illusion of immortality. Gone, often, are the very lovers and friends with whom one would otherwise seek shelter from the steadily mounting losses. In one dire flash -- or, more commonly, in painful, inexorable increments of loss -- AIDS has robbed these men of the inner beliefs and external bonds on which they based their lives."

A case in point is my client who lost his lover of twenty years, and in the following three years hasn't been able to find a reason to go on. He lives on disability with little motivation to get out of bed in the morning, and an ever increasing isolation. "Rupture" is quite descriptive of his life, having lost both his lover and his career his life is totally fractured.

In another case the process has been prolonged by alcohol and crystal meth abuse. In this man's sober days his grief surfaces and all he wants to do is "get numb" again. Although this man's losses are less than in the first case, he will take much longer to overcome them unless he can be clean and sober long enough to do his griefwork.

It is difficult to define unresolved grief, addictions, depression, isolation as an adaption. However, Schwartzberg found it is an all to common reaction to HIV.

4. Transformation:

The most adaptive coping style Schwartzberg described as a "journey of growth": "Some men transform the somber, inescapable reality of HIV infection into a deeper capacity to appreciate life. They maintain a life-affirming framework of meaning in the face of potential despair." Hopefully, the preceding coping styles can be transitions instead of permanent stops on the road to Transformation.

The following are the qualities Schwartzberg found in those men who lived this coping style: (p. 83)

1. They believe they have the power, and the responsibility to shape the meaning of their lives, especially their HIV infection. A successful adaption involves moving from a problem-focused coping style which is about changing the situation to emotion-focused coping in which the focus is "How can I change myself to deal with a situation I can't change."

2. They fully admit the reality of their infection, but still maintain a capacity to distance themselves from AIDS and see it as an abstraction. The author, David Feinberg talks about the constant "subliminal humming" of AIDS as a "subtext" for PWAs. Despite platitudes about "facing our pain" it is also important to have some eddies in the turmoil through our work, our hobbies, travel, or our social engagements.

3. They have discovered something in facing HIV or AIDS that unlocks a special quality within themselves. The strong activism within the AIDS community is one good example. It may alternatively mean a creative outlet with deeper self-expression and passion. Or it can mean coming out, or freedom from the usual constraints of neurosis, family and societal expectations to live one's own internal truth.

4. They feel a sense of kinship with other gay or HIV-positive men.

5. They have a more "here-and-now" time focus. This involves a greater capacity to appreciate life in the moment, tempering the losses of the past or the anxiety of the future.

6. They believe in an afterlife, or other ongoing symbolic existence.

7. They can tolerate the paradox, and the tension, of contradictory beliefs and feelings regarding HIV and AIDS. I found this a profound concept, fundamental to reconciling the loss of our mythical core beliefs without falling into total despair. The paradox also means that before change can happen, there must be acceptance.

8. They behave altruistically. The best thing I got out of Tuesdays with Morrie was his view of altruism. This doesn't necessarily mean "do volunteer work". Morrie says, if you want to have meaning in your life share with others and do for others. I don't think he was saying "become a Mother Theresa", but rather it is through involvement with others that you find meaning. Thus, my writing this column is altruism or my hanging one of my photographs in the office, or passing along genealogical findings to my immediate family. All that is encompassed in Morrie's view of altruism, and it all brings meaning to our lives. Morrie thus believed his life was only over when he could no longer interact with others. Even though he was bedridden, even though he had to have other's move his head, or wipe his ass, he still could share and give to others. He was still alive and his life had importance and meaning.

Steven Schwartzberg found many gay men with HIV also found these lessons. The famous activist and PWA, Michael Callen called AIDS "a cosmic kick in the ass -- a challenge to finally start living." And Morrie said, "Learn how to die, and you learn how to live."

Last messed with November 15, 2001