Preparing for the End Game

Originally published in Colorado's AIDS Newsletter, Resolute!

Not to be reprinted without the permission of the author

When I first knew Jim he wasn't symptomatic. It was before you could test for HIV so he didn't know he was dealing with a life threatening illness. He came to see me because he was suicidal. His life had been one dominated by his parents' lack of acceptance of his sexuality, his chronic battle with shyness and being overweight, and his not having a relationship. He was also underemployed and overworked. By the time he was sick with multiple infections he was a different person. He was not longer clinically depressed and was hanging onto life with a tenacity he would have never predicted in those early days. As I have seen in many cases, as one becomes physically sicker they get less depressed instead of more, as you might anticipate.

On a dreary, rainy fall day I asked Jim why he wanted to still be here. He had been bedridden at this point for about two months. He said it was because of his friends. Since he had know he was HIV, he had made many friends and they now cared for him in shifts, as he lived alone. I did his eulogy when he died as I had known him the longest. But there were over a hundred people who came -- all people whose lives he had touched after he began to come to terms with his own mortality.

I recently asked the Resolute! editor, Jeff Davis, the same question. Jeff now is living with advanced K.S., and C.M.V. which recently spread to both eyes. He has just gotten over giardia which ravaged his body, and left his underweight. Jeff had just been telling me he would undergo a very strong form of chemotherapy if there was no other choice to control his K.S., and I asked him why he continues to feel that he has a "quality of life"? Jeff replied that he learned from others who have gone this path before him that the occasional "good day" is very much worth the rest that are sick days. As we sat talking, Jeff's I.V. was draining into his newly installed groshan and he said that before this, when he had only a pic line in his arm, he could be hooked up to an I.V. bottle 7 hours a day!

To Jeff a good day could mean weeding the garden, and it dawned on me Jeff had learned what the rest of us probably haven't: how to be fully present. We don't typically fully involve ourselves in the present moment, as our minds are cluttered with "to do" lists. But what really constitutes a good day is not some Disneyland experience, but rather the mundane, the routine, but fully experienced.

There are many days clients come into my office, sit on the edge of the couch and never notice that I have new pictures on the wall. I have a colleague who was a falconer, and his bird sat on a perch in his office one day. Only one of seven clients that day noticed that bird. I wonder how much of life goes by because we don't notice?

Many of my asymptomatic clients tell me that when they get sick they'll kill themselves before they will go through:

- losing their independence,

- being cared for by others,

- looking like an Auswitz victim because of being so underweight,

- having K.S. on their face,

- losing their hair due to chemotherapy,

- having dementia,

- going blind with CMV,

- being bedridden.

On the other hand, when these same clients get that point they rarely decide it is time for self-deliverance. They draw the line further out. I do believe it is a comfort to have the option to end it. But few actually do. Why? Life seems to take on more meaning and value. We healthy people squander our days, thinking we have so many. We work too hard. We avoid depth in our relationships. We believe that we have time to waste.

The first time you are hospitalized with a major opportunistic infection, as Jeff Davis recently described to me, the inevitability of dying is much more brutally real and immediate. It makes everything that has gone before seem like an academic exercise. But what, I ask, has prepared Jeff to deal with this? How can those who are asymptomatic prepare for this moment?

Jeff believes what has helped him the most has been the models of people he has known with AIDS who were/are more advanced with the disease than himself. He specifically referred to sitting in the DG AIDS Clinic, talking to other patients. He also mentioned a support group he attended in California, and of course the people he has met through his work at the PWAC. Thus, the way to prepare is to have a support network of others with HIV/AIDS.

I run two therapy groups for people living with HIV. I have had people leave these groups when one or two people in the group are quite sick. They say that they don't want to deal with this. They aren't sick yet, and don't like facing what may be their own fate. They say they leave group being more depressed than when they came. However, these people don't recognize the value in being with people at all levels of health. The sick ones have much to teach about how to -- or how not to -- deal with the challenges of a progressive disease. And in the end they can teach you how to die, and that there is less to fear than you would think.

Last messed with November 15, 2001