Just finished reading Model Patient: My Life as an Incurable Wise-Ass, by Karen Duffy.
This is a memoir, released in 2000, and was a NY Times bestseller.
Karen was something of a celebrity when she developed sarcoidosis, an autoimmune disease that causes hardening of soft tissues. In her case, they discovered a lesion on her spine; her sarcoidosis was a rare form, being sarcoidosis of the central nervous system. She was (and is) a model for Almay, was an MTV VJ, and appeared in Michael Moore's TV Nation and The Awful Truth, and in Dumb and Dumber.
Karen has a fantastic attitude toward life in general- she's got a great sense of humor, and of fun and play, fearlessness, and spontaneity. She was raised devout Catholic, by parents who instilled in her and her siblings the importance of community service. Karen was a recreational therapist in a nursing home when her modeling career took off. She kept that job for as long as she could, juggling both careers until the modeling and acting took up too much time. Later, when very ill she goes back to the nursing home ot volunteer- and helping cheer up others others cheers her up.
Occasionally, her humor and attitudes towards other illnesses comes off as insensitive and flip, like her assumption that "we know what causes" lung cancer (smoking. Actually, not true- a very large percentage of people with lung cancer never smoked) and her list of disease that she thinks are funny like Stiff Person Syndrome and Wandering Spleen- My rule of thumb is to only joke about things I've actually gone through. Making fun of others' maladies, even if you're suffering from something equally weird or embarrassing, is skating on thin ice, like a black guy making Jew jokes or vice versa. Maybe you've both suffered because of your ethnicity, but that doesn't give you permission to joke about the other person's suffering.
I also disagree with her blanket dismissal of all alternative medicine as quackery and her claim that in China they don't even use Chinese Medicine. Were she to look into the history of so-called modern medicine, she'd realize it is only about 150 years old, and that only 150 years ago doctors routinely amputated perfectly good legs and drove drills into skulls, leaving their patients catatonic. She dismisses acupuncture without looking into it, and makes assumptions that the needles will hurt a lot, which in fact they don't. And she makes numerous jokes about enemas, basically holding them up as some kind of running joke about how idiotic people are for trying anything that's not a pill or a shot. She sums up her attitude towards medical treatment in one word: "Compliance." When you have a chronic illness, in my experience, unquestioning compliance can be very dangerous. The kinds of drugs that save your life, like prednisone, can also leave you just as sick from their long-term use. She herself now has been very damaged by both the disease and the treatments, and has acquired morphine addiction. She *has* to have morphine every few hours.
It's not surprising she would go the route of compliance, as this completely jibes with her upbringing and current practice of devout Catholicism, which has an extreme deference to authority. I don't fault her for it, and she seems to be totally OK with her choices, despite the fact that her choices have left her with a morphine addiction and changes in appearance (from the steroids) that caused her to undergo plastic surgery to correct them (something I have considered, if I could afford it- who wants a turkey neck in their 20s?). I just don't agree with the attitude of total unquestioning compliance for myself, and I don't think she should dismiss all other choices as "Quackery" without even looking into them. She even says that everyone has to deal with illness with their own approach that works for them. So I just wish she's show the same respect for other people's choices (and diseases) that she wants for her own.
That being said, it's a funny, colorful, well-written, page-turning memoir, and I'm glad I read it. It's the best "illness memoir" I've read yet. Karen is someone I would love to be friends with, and who I am sure I would admire even more if I actually knew her. She seems truly full of life, both before and after developing this disease.
Overall, this book is a great read and has a lot to offer in terms of dealing emotionally with serious illness. I still haven't finished reading David Lee Roth's or Michael J Fox's autobiographies, and I tore through this one in 3 days, which to me is the mark of a great book- I couldn't put it down!