HIV Support Groups: How Much Help from the Helpers?

HIV Support Groups:
How Much Help from the Helpers?
Kenneth R. Johnson

In the mid-1980's I began losing weight, had thrush and began having night sweats. I went for the relatively new test. At this time, before even AZT, AIDS was considered 100% fatal and there was nothing to slow the progression. There was no treatment whatsoever. People died much quicker back then. I remember it was a December 7th when I called the doctor's office for the results. The cheerful office manager told me, "Oh, let's see . . . You are positive. Have a nice day." Click.

There had been a part of me that had been clinging to the hope that I was negative, that I had somehow escaped the death sentence. I was now confronted with my mortality. In my mind, my life was almost over, a few weeks, maybe a few months. As a child I had seen three of my grandparents die slow, painful deaths. More recently, I had seen many around me sicken, just like I was now, and soon die. The next few weeks were the most raw, painful and emotional time of my entire adulthood. Would I live to see another spring? How had my life come to this?

Needless to say, I've seen a lot of springs since then. I'm about to see another in perhaps the best health I've been in since testing positive. When I tested positive and for the first few months afterward, I had surrounded myself with "support" and "helpers." I attribute my seeing so many springs and my health in large measure to forgoing this "support" and discarding the helpers.

On the suggestion from an acquaintance and against my better judgement but wanting to keep an open mind, I recently dropped in on an HIV support group for the first time in several years. I was in a small subgroup for "newcomers." There were four of us and a facilitator.

The facilitator was kind, genuinely concerned, warm and friendly. That can not be taken away from him. He was HIV+ for many years and perhaps had AIDS, so he had "been there" and could speak from experience. But what he did, and what I've seen so many "helpers" do, shocked and horrified me.

I was the first asked about myself, who I was and why I was there. I told them a friend recommended the group and I wanted to broaden my social outlets here in town beyond the neighborhood bar. I also told them I had been positive for eight or ten years and was doing extremely well on the new anti-virals in combination with an experimental treatment. I had gone from being on the verge of being diagnosed with full-blown AIDS to all measures of immune my immune system being in the normal range.

The facilitator completely discounted my experience. It wasn't so much what he said, but his tone of voice. "Well, whatever works for you." He warned the others, "Different things work for different people. I don't take any of that stuff. I do herbs." I had the feeling that it wasn't so much an attack on my good experience as an attack on hope. The facilitator's interaction with the next "newcomer" bore this suspicion out.

The next newcomer was a 35-year old straight man with a nine-year-old son, who just recently tested positive. Although he has had no opportunistic infections, because of low T-cell count, he was diagnosed with AIDS. He had just quit his job as a nurse in an intensive care unit. This man could hardly be considered naive about what can happen when one has AIDS. In his years working in the ICU, he has doubtless watched many die slow, painful deaths. He didn't need a reminder of what might happen.

The facilitator let the man know the range of services available from his organization. In making the man feel at home, he told of someone else he had started helping a couple of years ago. He told of how he had helped another straight man with a son exactly the same age. He went into detail about his gruesome death. The facilitator went into detail about how loving and caring he and his organization were. Unstated, but clear as a bell was the message, you are dying. We will help you die.

In this "support" group the promising new treatments were discounted. Not one word was mentioned about how HIV infected people are now living much longer. Not a single word was mentioned about other people with similar health status who have been around for many years. The lines were clearly drawn. Your role in this setting is to be needy and die. Ours is to be the kind, authoritative helpers.

I've seen this in one form or another many times before. Some years back I went to an HIV support group I thought would be better because the facilitator, unlike many, had educational qualifications. He had a degree in psychology. The details were different but the story was the same.

This facilitator steered the discussion to the effects on mental function of HIV infection. "Do you ever walk into a room and forget why you're there? Are you forgetful in other ways?" Many members of the support group told stories of forgetfulness. "Those are signs of AIDS dementia. We can help you." In this group of forty or so people, there were one or two with very advanced AIDS who were suffering from dementia. The ones most frightened, however, were the new people who had just begun attending because they had recently, merely, tested positive. They "knew" they were suffering dementia, their minds weren't working properly, because their symptoms matched. What they didn't know was that those same symptoms occur in people under heavy stress, like the stress one suffers when testing HIV positive. The facilitator let all know that he was there for them and, to the frightened but grateful audience, gave important pointers for dealing with "dementia."

Among the good things that came out of the nightmare of testing positive, and I believe the major reason I am still alive today, is that I began changing the way I looked at things. My changing perspective caused me to discard my "helpers" and to begin finding and valuing the life within me. Part of this process was a new insight into the death around me.

A very big influence on the way I have come to look at the AIDS epidemic comes from the experience of a Haitian patient many years ago, before the epidemic, who was dying, laying in bed and literally dying, because someone had put a Voodoo curse on him. The desperate patient, clinging to a hope that Western medicine might have stronger magic, had gone to a university medical center for help.

The man was dying merely because he believed, because everything in his culture told him, he was dying. What medication, what miracle of modern medicine, what powerful potion, would save him? There was none. There is no drug to cure Voodoo curses, to change a belief system. What were the doctors to do?

As it turned out the doctors at this prestigious university medical school did have great wisdom and a simple solution. They very quickly made up their own impressive curse-removal ceremony. The patient, impressed by their magic and power, was cured.

My point in all this is not to discount germ theory. The point is that what we believe has tremendous influence on our well being, and yes, even on when we die. We in this country give little thought or credence to Voodoo ceremony. A dead chicken, for us, has it's most power when it is properly seasoned and fried. But how much influence do our high priests have over us? How do we respond when doctors, the media, our respected friends, ministers, and every authority, even anti-authority authority tells us, either point blank or by implication, "Prepare to die"?

While HIV infection may proceed at its own pace, what effect does our belief system have on us? Are we really so different, so uninfluenced, so above and beyond, the Haitian man who was dying merely because of what he and his culture believed? Don't we also react and respond in accordance with cultural beliefs? How many of us close to the epicenter of the epidemic don't know at least one person who, on testing HIV positive, has just given up, laid down and died?

Looking from this perspective, the helpers don't always look so helpful.

Recently I was talking to a dear friend of mine who has had AIDS for several years. He's a social worker for AIDS patients in a nearby state. In one of his discussions with state officials, they were discussing the "denial" of the HIV+ and AIDS patients of their mortality. This, according to the officials' way of thinking, needed to be "treated." My friend's response to these authorities was along the lines of, "All you people are going to die too. How much time do you spend thinking about it? What plans have you made? Oh? Aren't you in denial too? You have no grounds to criticize these people for using the same coping mechanism you do." I would have carried it even further. I would have said, "If you treat these people, you'll kill them" and would have thought, "Voodoo curse."

We have all suffered tremendously from dashed hopes. How many times over the years have we heard a loved one say, "This stuff is really working and my t-cells have increased dramatically" only to see them to take a turn for the worse and die. How many times have we become excited and hopeful about news reports of a great new medication only to be terribly disappointed? How many of us have been so overwhelmed by the pain and disappointment of the real world that we've fled into the spiritual?

Without doubt there are many who have gone through great sacrifice and done a great deal to relieve the suffering of others. They unquestionably deserve great respect, admiration and appreciation. But for those who adopt the helper role to fill their own needs at our cost, we must be prepared with "magic" of our own.

Are we all going to die? Of course. But in the meantime, which is all anyone has, we must be prepared to discard the "helper's" images of death and focus on experiencing the life within us. I, for one, intend to continue seeking out those who help me live while I am alive and shun those who want to help me die. I must, regardless of what pain I may bear, find the courage to discard any "solution" which promises something better than feeling the life within me, no matter how painful or frightening it may be at the moment. There is plenty that hurts and plenty to be afraid of, but death won't be beaten, or anything else for that matter, by killing my own soul.

None of us will, in the end, beat death at all. But we can live our lives. We can direct our attention to freely experiencing and expressing the life within us, our bodily sensations, feelings, thoughts and creativity.

In the painful months following testing positive many years ago I was surrounded by many different helpers, went to various support groups and had a great deal of medical assistance. Learning to see who these helpers really are and stand my ground against them took a long time. Whatever they were selling, "You can heal your life" or "Serenity" or even living longer, all my peers from this time, all those who tried to be good enough, who followed the advice from the loving helpers to kill their own soul, they are all, as far as I can determine, all long dead.

Comment can be sent to Mr. Johnson by e-mail c/o KenRagge at morerevealed dot com.