Long-term Survival

By Michael Callen
Talk Symposium Amsterdam 1992

I want to make one thing clear about what I'm going to say about long-term survivors: I'm not a scientist, I do not represent these to be scientific. You might think as the Monet of AIDS: I will give you impressions. I think they are worth something, but for those you blue-suited people who want to see the data, all I have to offer is what I learned to actual long-term survivors, and I basicly asked them in their own words why they thought they had survived and I covered a broad range of possible reasons and some patterns emerged.

Long term survival: first thing to say is that we exist. You might not know it if you relied for your information on mainstream media. According to the US government statistics - which you can believe or not, they are not very well kept, but they are all we have - at least in the US 9% of people with full blown AIDS live 3 years or more, and 5% live 5 years or more. Unfortunately, there have not been significent improvements in median survival since I was diagnosed in 1982. The life expectancy of a person with AIDS has only been extended by 6 months. I personally believe that that 6 months is attributable to our ability to prevent pneumocystis pneumonia, the number one killer of people with AIDS.

The first thing I want to say about long-term survivors is that there definitely is a survivor personality. But for every pattern I found, I found exceptions. And that actually made me very happy, because it says to me that there is no single way, there is no recipe, no magic way to become a long-term survivor. I personally believe that each person's AIDS is unique, is different. They probably arrived in it in a slightly different way. We are each bio-chemicaly, biologically, gentically unique. And so I never expected that any one approach would work for everybody with AIDS. But I do found the patterns that I found fascinating and I will provide them to you.

If I had to summarize in one word the common characteristic among survivors, it would be 'grit': people are incredibly feisty, incredibly knowledgable, not at all passive, very aggressively involved in the struggle to survive.

They spoke very passionately of what they referred to as 'healing partnerships with their health-care providers', by which they meant that they respected the opinions and expertise of the various health-care providors that they sought out, but they did not do something simply because they were told to do something. In every instance, they wanted to know what their options were, they wanted to know what the possible side-effects were, and they had worked out relationships with their health-care providors that permitted a dialogue to go back and forth. And in fact, one's relationship with one's doctor is probably the most important relationship that you have, with the possible exception of your lover, when you have AIDS. And it is a lot like having a lover: it involves fighting, and being honest about your emotions, and talking. And the long-term survivors that I interviewed were very eloquent about how they had worked over years to achieve a really open wonderful relationship with their health-care providers.

Every long-term survivor mentioned the phrase 'major life-style changes'. That meant the obvious: it meant that they immediately started practicing safe-sex, to avoid exposure to other possible co-infectious factors. Most of them gave up drugs and alcohol, although some of them not entirely.

Also, among lifestyle changes: a lot of people had dabbled with diet changes, but in almost no instance had anyone been able to persist in a radical diet change.

Everybody talked about, among lifestyle changes, what they called 'emotional house cleaning', usually after they had survived their first major opportunistic infection. It represented a crisis to them, and they did some soul searching. They went through their relationships and they either repaired them or they ended them. They spoke generally about needing to get rid of people in their lives who refused to support them in their belief that they could survive well beyond statistical projections.

I don't know whether it's true here, but in America Elizabeth Kubler-Ross is very popular and everybody is an instant expert on dying. And there are five stages, and people will constantly treat you as if you are in one of the stages, usually denial. If you talk about maybe sticking around longer than the 18 months allotted to you. People will look at you and say 'yeah, sure !' But long-term survivors were militant about it; they simply wouldn't put up with it. They spoke very movingly about needing to surround themselves with people who would support them in their hope.

Interestingly, another thing that everyone mentioned was that knowledge of another long-term survivor was crucial to maintaining their own belief in long-term survival. And that's really not so mysterious, when you stop to think about it. If you set out to do something that no human has ever done, it's a different experience than if you set out to do something that few humans have done. You know that it can be done.

The most surprising finding among my sample of long-term survivors was a clear rebirth of spirituallity. With two exceptions - me and one other guy - all the long-term survivors talked about taking great comfort from their spiritual beliefs. It split almost in half: half had actually returned to the religions of their childhood, although none in a fundamentalist, judgemental way, and the other half spoke more generally of the sense that there was a meaning to suffering, a life after death. And there was no question that they took great comfort from those beliefs.

The long-term survivors were all passionately committed to life. That may sound pretty obvious, but for those of you who may have been around people with AIDS, this is going to sound simplistic, but I can't think of any other way to put it. When a catastrophic illness lands in your lap, you really have two choices: it's either a challenge to live, or challenge to begin dying, and I have seen people make both choices. I have seen people give up, die on cue, and I have seen people fight.

I want to be really clear here: there is, among people with AIDS, this short-hand notion, that if you want to be in the long-term survivor sweepstakes, you have to have the right attitude. But nobody ever really defines what that means. What is the right attitude? What I concluded from interviewing four dozen long-term survivors, as friends, is that you have to have the right attitude, by which I mean you have to believe in the possibility of survival, and you have to be hopeful and surround yourself with people who love and will support you. That will not, however, guarantee that you are a long-term survivor. The inverse seems to be true, however: I have not yet met a single person, who became a long-term survivor, who did not believe that it was possible.

It is interesting that, at least it was interesting to me, that the profile of extraordinary survivors with AIDS was pretty identical to the profile of extraordinary survivors of other so-called terminal diseases.

Interestingly enough, about half of the long-term survivors were in long-term loving relationships, and those who were spoke about how they could not envision going through AIDS alone. And taking tremendous comfort and support from their loved-ones, and in some cases it was practical support.

All of the long-term survivors had dabbled with non-allopathic medicine. What I would say about the long-term survivors is that most intergrated allopathic and non-allopathic medicine. Out of the 48 people I interviewed intensively, only one survivor had completely turned his back on Western medicine, and refused to take any pharmaceutical. And I have to say that he is still alive and glows with health. He is probably the healthiest among us. He is macrobiotic.

Certainly, no single alternative approach to healing predominated, I mean, there were people who were into Reiki, or massage, or meditation, or diet, or vitamins. And frankly, most people did not stick with anyone approach. There was a lot of walking around.

Virtually every long-term survivor was involved in the political struggle to end AIDS, which is very interesting to me. My theory of why that might be so is that AIDS can very easily consume you - your AIDS. You can close the world around you. When you have AIDS, to know that you are having some effect on other people, some beneficial effect on other people, to get outside your own tragedy and connect with other people, seem to be very important, seem to be healing.

I have been pretty prominent in my opposition to the use of AZT. And I didn't expect to find similar opposition among the long-term survivors, but I did. It was pleasantly surprising. Of the four dozen, only four had ever used it at all, and three are dead and one is dying of AZT-induced lymphoma. The overwhelming majority of long-term survivors had somehow managed to resist the enormous pressure to take AZT. This was very much a distinguishing characteristic of long-term survivors, by which I mean a scepticism about experimental medications. Long-term survivors, for what it's worth, take a very sceptical wait-and-see approach.

Nine out of 10 drugs that ever enter any phase of human testing fail, as either too toxic or non-effective. Well, that to me is quite startling if true: if the odds are stacked against you 9 to 1, then I do not understand the current drugs-into-body frenzy. My AIDS activist friends who are in the forefront of this drugs into-body frenzy, I feel are very misleading to people with AIDS who are frightened and desperate. They only seem to talk about two possible outcomes to taking experimental drugs: one is that it works and one that it doesn't. There is a third, apparently much more common possibility, which is that you will be worse off than if you did nothing at all. And nobody likes to talk about that because it's so unpleasant, but from my reading of the literature, sometimes doing nothing is much better than doing the wrong thing. And it would seem, on the record of government sponsored clinical trials, that most people are actually worse off taking these toxic drugs that if they hadn't started at all.

The above was abstracted from a transcript of a talk Michael Callen gave in May 1992 in Amsterdam at the international symposium 'AIDS; A Different View'.

Michael Callen is the author of 'Surviving AIDS' published by Harper Collins Publishers, New York 1990, (ISBN 0-06-016148-5)