What happens when you write a book like mine? You keep finding people who’ve had brain injury. There’s Linda, in the lighting aisle of the home improvement store, who tells me a dump truck hit her years ago. She couldn’t count to 63. Why 63? I ask. She says she was knitting, needed to count 63 stitches, and realized she couldn’t do that. She almost lost her marriage before she realized what was wrong and got help.
You meet others who’ve been stonewalled by doctors. They need help getting the help they need.
You learn that everybody has a story. If not brain injury, then a cancer that metastasized to the brain. Or another medical disaster, because everybody has a body.
Andrew called me. Susan, his partner, was in the hospital. She’d been in great pain for over a day, and no one was telling them anything. The doctors hadn’t talked with Susan or with him.
Find out when the doctors come by, I said, and be there fifteen minutes before that, so you’re sure to catch them. You won’t have much time, so have your questions ready.
Susan doesn’t want to bother the doctors, Andrew said, She doesn’t want to be rude.
That’s your job, I said. Don’t worry about seeming rude. You can be polite and firm – but you must make them talk with you.
I asked, Does she have a doctor she sees for annual checkups? Have her doctor call and talk to the doctors at the hospital – doctors pay attention to other doctors. Have her doctor tell them to talk to you.
Two days later, they were talking with the doctors regularly. A day later, Andrew told them Susan’s pain was unbearable. They scheduled her for surgery that afternoon. She was able to go home a few days after that. Now she’s well.
Andrew had to learn how best to advocate for Susan. Here’s what he’d tell you:
More advice: If you don’t yet have a doctor, get one now. If you ever need that help, you’ll be ready.
Elise Rosenhaupt, author of the memoir Climbing Back, writes about her work as a patient's advocate and other experiences that cross her plate.
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