APRIL 16, 1993

GAY PEOPLE'S CHRONICLE 27

ENTERTAINMENT

A positive how-to book for HIV positive people

HIV+: Working the System by Robert A. Rimer and Michael Connolly Alyson, $13.00 trade paperback

Reviewed by Joseph Morris

Everyone diagnosed with HIV goes through their own cycle of grief, including denial, anger, and bargaining, leading ideally to acceptance. For each person in the spectrum the phrase "living with HIV" can be a naïve platitude, a death sentence, or a challenge to fight against the odds. Robert A. Rimer, the principal author of HIV+: Working the System, exuberantly chooses the latter path. Quick review: if you or someone you know is HIV positive, buy this book.

HIV+: Working the System is a literary energy boost, filled with personal tales, anecdotes and sound advice. It encourages each person living with HIV to take control of their own lives, find their own answers and insist on results. This is not a how-to book for a whiny person who wants an AIDS cure delivered to them on a silver food tray. The basic message is: "so you're HIV positive; the medical community knows, less than you do about your own needs; get over the outrage and the selfpity; understand the medical system to squeeze the most out of it; take care of yourself and have some fun."

Each chapter includes a summary, checklist or other simple worksheet for the reader to organize thoughts and goals, and a humorous cartoon with the chapter's "moral" by Michael Willhoite (author of the controversial Alyson children's picture book Daddy's Roommate).

Rimer, who co-wrote the book with

Michael A. Connolly, is a long-term survivor, having been diagnosed in 1986. Both authors live in the Boston area and have worked for that region's premier AIDS service organization, the AIDS Action Committee.

Rimer tells his story simply, documenting the ignorance of many in the medical profession about his condition. He doesn't

condemn the health care workers so much as point out that they are part of a large "system." Like any overworked bureaucracy, in this system unintended mistakes are frequent, the "experts" are not fully informed, and the patient assumes he is at their mercy.

Not so!

Like a rallying cry from the '60s, you should make demands and question authority. Who says the doctor is right because she is a doctor? Are you really going to get a hospital worker to admit errors when faced with the possibility of liability and malpractice suits? Do you truly believe that lab results are accurate? Do you think the only mistakes hospitals make are in their billing department?

As a person living with HIV, once you enter the regular world of medical care, your chances of a screw-up in this large unwieldy system increase. One of the first big steps is choosing the right doctor. Rimer proclaims the process no less complicated than if you were hiring a job applicant. If you plan to live, you choose the doctor based on your criteria, not the other way around. Even after you find a good, caring doctor who is on your side, you must be vigilant, look for the latest medical information, and question everything, every step of the way.

Now if you're saying "wait a minute, that

"Moral: More

medicine is not always better.”

should be their job," you're assuming that the medical workers know everything, and that they know your own needs. Doctors have always wanted patients to think they knew everything, but even immune disease specialists can't keep pace with medical findings and the sharing of "underground" AIDS treatment information from around the country. And overworked doctors can't possibly know your plans, lifestyle, concerns and other factors, especially if you are meek and withdrawn in their presence. As Rimer says, "I know that if I'd done as I was told, I'd be dead today." We all have our priorities; don't assume the medical worker's priority is the same as yours.

Rimer's survival seems to be a combination of high self-esteem, fighting attitude, common sense, perseverance, planning and

MICHAEL WILLHOITE

luck. He sensed that the originally high doses of AZT were not good for the long term, and cut down his medication long before it was officially recommended. As AZT became less effective for him over time, initial test data on ddl appeared. His priority was to get this new experimental drug, even though he didn't qualify according to the system. Guess who got the drug and another extension on his life?

Part of the plan is really simple: structure your life and your medical treatment to definitely live three years until the next drug comes along, and then switch to it. The other big part of the plan is not really stated, but can be felt throughout the book: Putting yourself in control and maintaining a positive outlook will keep you alive longer than anything else.

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