'I Have Some News'
You say you're a reluctant consumer of health information. What does that mean?
People have very different preferences for the amount of information they want about their illnesses. What I'd like is for someone to say, "Well, what you have isn't so bad, we can fix it by next week, and insurance will pay for it." My experience with the healthcare system is that we cannot have that preference anymore; we're all going to have to know something about our medical care. For people who want to know everything, this book says here are some good choices in how to narrow your search so it's more efficient. For people who don't really want to know much and feel hopeless in the choices department, it says you don't have to know much, but you have to know something, and here's what you have to know.
In talking with the more than 200 people you interviewed, what helped them get through the uncertainty of living with a dread disease?
A number of people I talked to said, "I wanted to be distracted." I was going to call the ninth chapter of the book "Where can I find comfort?" until one man told me, "I cannot find comfort. I am uncomfortable. I am going to die." That brought me up short. Instead, I talk about finding a little relief. For some people, just petting their pet helped. A couple of people wrote an E-mail to everyone they knew, saying, "If you're going to send me something, please be sure it's funny." For me it's playing the piano. I can get just five minutes not thinking about what's going to happen.
One person said, "I took a picture of myself every day, and I wrote about it. People said I would forget, and I never want to forget." Others said they had stacks of beautiful journals and didn't write a word. They didn't have the energy to reflect. There's no wrong way to go through this time, and no right way. You're doing the best you can. You hope that it's good enough to take you to the next step. And it usually is.
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