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Living Under the Threat of Alzheimer’s as a Writer

I’m going to disappear one day.

Both sides of my family have Alzheimer’s, so I’m sure I have the gene too. When I can’t find my keys, I think early onset Alzheimer’s. When I can’t remember why I’m at the grocery store, I think about how the youngest person who has ever been diagnosed with Alzheimer’s was twenty-seven.

I’m thirty-two.

Some people write because they have something to say. Others write for fun. I write because I’m afraid I’m going to disappear, because who am I if I’m not the stories in my head? Who am I if I’m not the words I use to tell those stories? When I’m sixty-five and I can’t remember my own name, will I still be me?

I remember being afraid of family dinners with Yeh-Yeh, because he was loud and scary and had no idea who any of us were. I was told he had Alzeimer’s, but to a ten-year-old, Alzeimer’s was like having the chicken pox. Sure, it sucked, but eventually you’d recover, wouldn’t you?

I remember he made my mom cry once.

I remember thinking that grandfathers are supposed to be awesome—television and books taught me that—but Yeh-Yeh was not awesome. Not to me.

When I think about my future, I think about how I never knew his real name. Toward the end, he didn’t either.

“You taught me the courage of stars before you left.
How light carries on endlessly, even after death.
With shortness of breath, you explained the infinite.
How rare and beautiful it is to even exist.”—from Saturn by Sleeping at Last

The courage of stars. That’s what I need.

When it’s time for me to disappear, my stories will carry on. Not because I’m the next Neil Gaiman (I’m not!) or because my stories will leave a mark in this world (they won’t!), but because each time I sit down to write, I get to become more than my brain. For a few undisturbed hours, I get to live in the empty, infinite spaces between words, and even if I forget all of them one day, at least I will have lived.

Source: Image by (cc)

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