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Published On January 15, 2007

CLINICAL RESEARCH

Survivor?

Brain surgery unexpectedly impaired a writer/illustrator’s abilities to speak, read and write, leaving her to wonder if she would ever get her old self back.

Whenever I’m on the road, I stop in bookstores and offer to sign books—my own, if they have them, but just in case I do a decent Danielle Steel. Last week, the woman behind the counter typed in my name and pulled up All I Need to Know I Learned From My Cat, then she scrolled down and muttered, “I Had Brain Surgery, What’s Your Excuse? Well, that’s not you!” and met her eyes, which had veered off the screen to see whether I had bolts popping out of my neck.

In July of 1999, I had an awake craniotomy to remove a mass on my left parietal lobe. The surgery unexpectedly impaired my abilities to speak, read and write, leaving me to wonder whether I would ever get my old self back.

Six months after the surgery, I began to work on an illustrated memoir (my own form of occupational therapy) and I spent the next three years holed up grappling with basic identity questions: How does one get a “self” back? What makes “me” me? Which bones are connected to the funny bone?

When the book came out in 2004, I toured 20 cities. I was prepared to deal with all the personal questions: How did your cat act during your recovery? Were you this funny before the brain surgery? I was less prepared to deal with some of the ethical questions. And I was totally unprepared to deal with another round of identity questions.

 

Like a lot of brain surgery and brain injury survivors, I had been living in the closet, as a kind of conditioned response to the visual double takes and the well-meaning “you look great,” with, implied, “for someone who had brain surgery.”

Touring outed me. My book was embraced by reviewers, general readers and survivors (who count as general readers when they’re not reading medical memoirs). It connected me to the 200,000 people who are diagnosed each year with brain tumors, to the millions living with brain trauma, to stroke survivors, to people with epilepsy, their caretakers and providers. I understand now that living in the closet (with any medical condition) has many lonely and terrifying moments, but I am still struggling to embrace my new, very public identity as a survivor.

If you had asked me in Detroit (City No. 1) why I wrote the book, I would have answered, “to gain perspective” and referred to my old identity questions. Nineteen cities later, I wondered whether by “perspective,” I meant distance. And whether I’d been holding out hope that by putting my experience into a book, I might be able to put it away one day.

 

First Person originates at the other end of the stethoscope, presenting essays and commentary from patients, consumers and other medical outsiders. Proto invites your contributions; please send ideas to the editor.

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