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Wednesday, August 20, 2008

Doing handstands on my walker: Elective amputation

Bonnie Denis was only three years old when a rare virus, transverse myelitis, attacked her central nervous system. It left her temporarily paralyzed below the waist. But she bounced back quickly, and by age five, "I was doing handstands on my walker." But as she grew, the muscles in her feet atrophied, and the bones grew crooked.

Now, when she walks, it feels "like there are a bunch of knives stabbing me," she says.

Even so, she has lived a very active life, dabbling in acrobatics. She keeps an active and quirky sense of humor. Now at 30, she has made a difficult and rare choice, after many operations and years in a wheelchair. The decision is as personal and unique as her custom-painted, raspberry-pink crutches.

She decided to find a doctor to amputate her excruciating right foot.

The decision follows a series of operations. While she was in high school, surgeons invented a series of procedures to reshape her feet. They broke bones and reset them. They implanted metal pins and took them out again. They augmented her own bones with bones from cadavers. Once horrified, she came to think it’s cool: "I'm part zombie," she says.

Bonnie knows the trade-offs; she knows surgery, and wheelchairs, and what it feels like to walk. She is making her own choice – maybe not the one you or I or her doctors would make for themselves – but none of us has walked a mile in her shoes. It's a well-considered decision, and it's hers.

Advice: Explore your choices thoroughly, and make your own choice.

Thanks to S.I. Rosenbaum for the source story in the June 16 issue of the Boston Globe.

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