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Healthwise

I offered to write this month's column for the Health Issues Taskforce because I wanted to share my experienes in working with persons with AIDS. Having met or known most such persons in this area, having daily contact with them, having been involved since almost its beginning in Cle-

Gay Peoples Chronicle

By Theodore R. Wilson

Last month's column spoke clearly and descriptively about SAFE SEX, and you'll be hearing more in the future. While I believe that SAFE SEX is the way, the truth, and the life for us now, I don't believe that many of us are willing at this point to put it into practice as part of our lifestyle. You, or a friend, will have to die before you become a believer. Prove me wrong. If you do (the statistics will

only most. Some days he could even sit up in bed. Hope was rekindled, a future seemed possible. But the next day he was sicker than before.

Bob recovered from this

1.

infection and was able to go home. Shortly thereafter he became quite paranoid and suspicious that his family was poisoning his food. refused to eat.

No one knows why this happened. A pre-existing psychiatric problem? effects of medication? A neurological impairment?

He

Side

We never knew why; but but to the hospitals Bob went. At first distrustful of all

veland has given me a variebe the test), I will heartipersonnel and belligerent,

ty of experiences. It makes choosing a starting point and pessimist. for this article very difficult. Here is the first of what may be many of my experiences or observations

ly wear the label of cynic

When talking with gay brothers, my first wish is to inform and educate; yet I also feel a need to protect and shelter them from the ugliness of this disease. Adding to this conflict is my personal wish not to spend every waking moment talking about AIDS, so that I can have a more complete and richer personal life. Frankly, it makes for an uneasy existence.

What I am about to describe is both fact and fiction. Fictional, to protect confidentiality; factual, in that everything happened. No exaggeration is necessary to describe the account of the patient.

When a person is diagnosed with AIDS, further life expectancy is influenced by the type of opportunistic infection(s) involved. some, life expectancy is 6 months to one year; for Kaposi's sarcoma, you can live up to 3 years.

For

"Bob" was sick with fever, Many persons (myself innightsweats, persistent diacluded) have made generalirrhea, and weight loss for zations about the attitude several months prior to his diagnosis of AIDS. During of gay Clevelanders toward this time he was unable to AIDS. I share the view that work, lost his job, and was for most, the disease is an about to lose his apartment unreality, almost an intellectual construct Few have due to lack of money. Bob had either personal experiewas about to move in with a

nce

with AIDS or witnessed friends or relatives with it.

With 23 reported cases in Greater Cleveland, and its finally having become "homegrown" only during 1984, it stands to reason that AIDS remains distant for most Clevelanders.

Young persons, busy buillng their lives for the future, must have difficulty believing that they are going to get old, let alone dying of AIDS. That's how it's supposed to work; you shouldn't have to think about it. You should be able to put such thoughts off until later in life. But for now, you must think again.

The only way that AIDS is going to remain an unreality for us is "SAFE SEX."

family member when he needed to enter the hospital.

Feeling terribly ill, not wanting to leave his hed or to eat, he faced a battery of tests which drained what little reserve of energy he had. Blood was taken from him up to 3 times daily..

Carts appeared twice a day to take him for tests or procedures, some of which made him feel pain and increased discomfort. While the doctors carefully explained why the tests were necessary (to understand the type(s) and extent of infection(s) and a course of treatment), the reality he knew was more hurt and no relief.

Continuing to lose weight, he was encouraged to eat. Eating produced nausea and vomiting.

Not every day was awful--

he refused most treatments. Slowly the paranoia began to clear (no one could explain that either), and preparation was made for him to go live with another family member. But now Bob began to complain of problems with his eyesight.

At home Bob experienced two new things.

First, he went blind, which depressed and limited him greatly.

Second, he mentally regressed to a 4-year-old's level. He barely trusted only a few people and was suspicious of everyone else, distrusting any care or concern they might offer.

He could eat, although he would trust only one family member to prepare his food. Bob spent the remainder of his day in bed, when he wasn't up using his bedside toilet dur to chronic diarrhea. Frequently he was unable to get out of bed, in time forcing Bob to become dependent on family to change his bed linen and clean him. He lay in bed, humming mindless tunes, fondling himself in a childlike fashion. Bob was readmitted twice more, partly to give his exhausted family members some relief. They became as isolated as Bob--only trusting the hospital staff to know what they were going through.

Each time some physical improvement was realized, but his childlike, regressed Now he qualities persisted. said often that this was all his fault, that he had brought AIDS on himself. did our best to counter it, to relieve him of his guilt, but I doubt that we were successful.

Bob looked forward to my

We

April 1, 1985

daily visits--frequently acting flirtatious and provocative from beneath his bedcovers.

Care to ease his pain was provided, as he refused any further treatment or procedures. He died 8 months after diagnosis. Bob was 33.

Having participated in and witnessed Bob's death from AIDS, having spent countless hours along with many other caring professionals, having witnessed and partipated in the death of sseveral "Bobs" now, perhaps you can better understand why when I am out and about, I feel like a "stranger in a strange land."

Perhaps you can better understand the freustration and anger I feel on occasions when gay brothers don't seem to take this problem seriously. Or don't seem to feel it is worth the sacrifice of time and effort to make a contribution to its work. I, for one, don't need any more deaths to be a believer.

To tell Bob's story (or Jim's, or Scott's, or Doug's) needs to serve more than the purpose of my ventilating. While the caring reader may respond with heightened fear, that only has marginal effect. Fear produces guilt more often than it produces change.

However, a conscious awareness incorporated into our daily living and activity that AIDS is real, that it is ugly, tha you don't want it and are willing to do whatever is needed to avoid it--makes SAFE SEX an opportunity, not a loss.

Often when I have talked with gay groups about SAFE SEX, I have felt an undercurrent of hostility sometimes expressed that I am taking the joy of sex away (rather than providing an alternative that has more than a modicum of affection and closeness).

Until you meet a "Bob," become one yourself, or incorporate Bob's story into your life, I have doubts this attitude will change. Will YOU be my next Bob?

Theodore R. Wilson is a medical social worker at University Hospitals, and a member of the Health IssuesTaskforce.