Document:Gardiner reviews Callen

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Who, Why and How Long?

Review of Surviving AIDS

by Ben Gardiner

Ben Gardiner's AIDS Info BBS Database
1 November 1990



The terrible riddle of who gets AIDS, who dies, and who lives how long is explained in detail but not solved, in this penetrating saga by a sensitive and articulate PWA who made a two-year task of it. He avoids a continual temptation to extrapolate from the specific facts related to generalities that are simply not true.

For now, roughly ten years into the era of AIDS, we still do not have precise and proven information about many of the simplest things about AIDS. Michael Callen's book shows that he has found that the facts on the survival side of the picture are almost as confusing and inconclusive. Only the names of the survivors he quotes are precise, whereas the things they did and the things they believe are spread over a wide spectrum of diversity.

So where does that put us? Definitely enriched for the treasure of the author's reportorial discoveries, often entertained by his wit and charming effects that grace this otherwise ponderous study, and yet still one might feel as frustrated as the author himself in that there appears to be nothing smashing to summarize.

There are minor flaws, some attributable perhaps to an attempt to limit production costs, some perhaps originating in the obvious truth that the author is unusual not so much for his literary talents as for the two commendable assets of courage to attempt this work, and editorial skill to weave it all together.

The courage is no insignificant thing, as others can attest who have spoken from a minority position in the AIDS information stream. Chief opposition to non-standard theories, claims, challenges and even undeniable truth have come from within the heart of the very community which has so much suffered already and stands so much to gain by truth. It has meant that those who have survived AIDS more than a few months have, for the most part, chosen to stay anonymous and inconspicuous. Who wants to be attacked, one way or another, for getting well or for surviving longer than others? The attacks are understandable from a humanistic viewpoint, but in the long run they will be deemed totally inexcusable. Only truth that is realistic and free can be useful in acting in response to a devastation as widespread and as painful as AIDS has already been. Mr. Callen brings that truth to us as he has found it.

Acknowledging that there is no single profile for the successful AIDS survivor (which he arbitrarily defines as 3 years after diagnosis), he then proceeds, toward the end of the book, to attempt just that. But it does not prove anything. The bulk of the book makes clear that each of the survivors interviewed, and presumably those who refused but who gave comments, has had his or her own ways of coping with AIDS and of continuing to live after diagnosis. A minor impression one gets is of a new social hierarchy among those with AIDS, beginning with the first pronouncement, some kind of diagnosis. Seldom has there been disease and death that created a commonality that is almost becoming community.

In AIDS, the descriptions written, used on TV, and even spoken in social settings have had a significant role in the development of treatment, research, public response and possibly even in the prognosis of individuals' health. Those who have AIDS, those who live near others with AIDS, and those who merely observe through various media coverage, all seem to be affected by reporting and by comments – possibly more than in any other life-and-death situation.

There are shocking revelations in this book, such as the quote from Dr. Ann Hardy, then of the Federal Centers for Disease Control in Atlanta, speaking of survivors to say that they "did not really have AIDS" (p. 35).

Another shock is that Michael Callen himself has not had more than 200 T-cells at any known time in the past eight years. Let's hope that people now panicking because they have less than 500 T-cells will take note of this.

One cannot help but notice the optimism in the book and also the pervasive impression, explicitly stated in several places, that those who have survived have taken action of one kind or another. There seem to be no surviving "passive victims" or people who just watch the doctor fail them. An attitude which Callen sums up as "a passion to live" seems to have been in those he interviewed. He also deals with the negative fact that four of them have died since the interviews were done, and finds no common trait or profile in that, either.

This reviewer finds a common denominator in that none of the survivors seem to have been resigned to any "fate" even though they may have had moments of depression. Callen might have added that almost everyone has discouraging times, possibly more often as life goes on past middle age, but usually with ever-strengthening means of offsetting depression. It often seems to this reviewer that PWAs can easily forget that other people's lives have ups and downs, and that a certain amount of pain, disappointment, even despair, is part of life. Nobody has a monopoly on suffering.

It also is forgivable, though annoying, that some of the significant writing is not crystal clear. This reached a peak of annoyance in what seems to have been a transposition of nouns, in the discussion of how double-blind studies of AZT were imperfect and were made virtually useless. "...the telltale...value that indicated to physicians who was getting drug and who wasn't should have been concealed from the researchers." This reader would have supposed it the other way around. Better writing would remove any doubt. One wishes this could have been clearer, because the point is very important in the accusation that the AZT trial was almost a total failure. (The quote is from page 207).

But just let Burroughs-Wellcome try to answer some of the statements, questions and accusations that are very clear. Such as the statement by the chair of the FDA Advisory Panel: "There was no great difference after a while between the treated and the untreated group." (p. 206)

The material is all in the book. Perhaps those people who are in doubt will want to read it to discover for themselves, and possibly those who have already made up their minds will want to read it in order to resume arguing. There very definitely is no consensus or agreement in what is said nowadays about survival or about the appropriate steps to take to cope with AIDS.

© 1990 by Ben Gardiner
Originally published at Ben Gardiner's AIDS Info BBS Database

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