Autobiography on borrowed time

kw: book reviews, nonfiction, autobiographies, AIDS, HIV, hemophilia

Some time last year, Shawn Decker reached age 30. He's coined some words to neutralize the connotations surrounding his medical situation. Thinblood: a hemophiliac or bleeder. Thickblood: everybody else. Positoid: A person who is HIV positive. Negatoid: everybody else. He hasn't coined a term to replace gay or homosexual; he'll leave that for those who live there.

Some time in his early twenties, Shawn Decker became one of the most famous thinblood positoids. By that time, it had been ten years since, at age eleven, he was given "a year or two" to live, by doctors who are now retired. Now it has been almost twenty years that he has lived as a thinblood, carrying not only his "pet virus", HIV, but at least a couple kinds of Hepatitis. Let's see, two-thirds of a life lived on borrowed time, a growing career in public speaking and education, marriage to a beauty queen...a pretty good time for an autobiography.

My Pet Virus: The True Story of a Rebel Without a Cure (see http://www.mypetvirus.com/) chronicles his life, from birth until about 2004, a year or two after his marriage to Gwenn Barringer. By turns humorous, serious, raucous, vulgar, and touching, the book merits careful reading. On the surface, he sounds like an ordinary high-energy boy with a lot on his mind. His life illustrates the remarkable resiliency of children who must grow up bearing a terrible disease. Hemophilia is bad enough, but thinbloods seem, sooner or later, to add a number of other major diseases to their internal zoo.

I isn't hard to figure out why. A thinblood has to have, at least occasionally, transfusions with Factor VIII, and sometimes platelets, which are needed to avoid bleeding to death from seemingly minor events. It takes a hundred units of blood to produce one treatment of Factor VIII or of platelets.

A dental technician I once knew called herself a Platelet Queen. She had too many by far, so donated platelets at least monthly. It's more involved than donating a unit of whole blood, something I've done a few dozen times, until my body took to clogging the needle during the first minute...can't do that any more. In her case, they take a pint, leave the needle in place, spin out the platelets, then put the rest of the blood back in. That way she can donate more frequently, every week if she is willing. But it takes the donation from many people to boost the platelet count of one thinblood.

Naturally, not everyone who donates is aware of what they may be carrying. This is how, in about 1980, Shawn contracted Hepatitis A at age 4 and HIV at age 11. He later got Hep B also. Thus, his "pet" is part of a menagerie. While screening and testing have improved since then, a certain number of thinbloods still catch a Hepatitis virus or HIV yearly.

Shawn himself is unusual; he lived without HIV medications for some fifteen years, long past the time that most untreated HIV patients develop AIDS and die. His case of hemophilia is also milder than is typical, so it seems he's blessed with better-than-usual genes...except for the thinblood one, of course. He is also very fortunate in having unusually supportive parents. The parents of thinblood kids typically become strong advocates for their children, and must run interference for them in many ways. Shawn's mom is out on the bleeding edge of this elite community. Don't get in her way!

But what can I say about Gwenn!? The woman follows her heart, that is sure. She fell for Shawn, hard, and had the knowledge and fortitude to walk open-eyed into the minefield of his life, stick with him even as he became to ill to continue without antiviral medication, ask him to marry her, then carry it out. They are a hot item on the speaking circuit. She came within a whisker of becoming Miss Virginia 1998, on a platform of AIDS education and awareness. She was a veteran of the advocacy circuit long before she met Shawn. She had the right combination of experience to match his; possibly the unique combination...don't get in her way, either!!

I can't say the book is an enjoyable read. It's a learning experience. I don't recommend it for young people (below college age), unless the young person in question is at risk of contracting HIV...then I'd demand it!