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I'm a writer who dabbles in a little bit of everything: prose poetry, creative nonfiction, science communication. I've thrown it all in a hodgepodge mishmash here.

Scrying by Science: Part 1

Scrying by Science: Part 1

"I was not predicting the future, I was trying to prevent it." --Ray Bradbury

My maternal grandfather has recently lost the ability to climb up or down stairs; he’s also forgetting how to use a fork. I think his ability to sit, stand, and walk must be some deeply entrenched muscle memory, like swallowing or sleeping. However, he no longer can quite go through the motions to lie down; someone must talk him through lifting his legs onto the bed and reclining.  It goes without saying that he no longer remembers my mother, me, or any of his other children or grandchildren. I don’t know if it’s as if we never existed to him—if the memories stored in his brain have disintegrated and disappeared, or if they’re simply locked away and the neurological mechanisms to retrieve them have broken down.

I have no memories of my paternal grandfather apart from a grainy home video from 1991—a thick bundle of white blankets rests in his lap, containing me, just a few days old. His hands are trembling. He looks down at the infant in his lap, then at the camera. He smiles vaguely, as if he knows he should be happy but isn’t sure why. He died from Parkinson's a little over a year after that video was taken.

Both my grandfathers had immediate relatives with the same conditions: Alzheimer’s and Parkinson’s. There is a chance that the genes responsible for their illnesses have been passed onto me. Until recently, there would have been no way for me to know except meeting with a genetic counselor and undergoing expensive genetic testing.  However, the company 23andme has recently released an FDA-approved genetic testing kit that, among other things, checks for the gene markers for Parkinson’s and late-onset Alzheimer’s.

After having read some articles on the test*, I waffled on whether or not to get it, unsure if it would be better or worse to know the likelihood that Alzheimer’s or Parkinson’s potentially loomed in my future. There were enough caveats in the test’s accuracy and its ability to truly “describe a person’s overall risk of developing the disease.” I could test negative for everything but still be susceptible because of my family history. Conversely, I could test positive and never develop Parkinson’s or Alzheimer’s. But, recalling the vacant look in my grandfather’s eyes and his inability to form a sentence the last time I visited him, I decided I did want to know. Before his illness, he was a doctor, commanding in his knowledge of English and Latin and demanding in his demeanor, but now reduced to the deteriorating shell of his body. If that might one day be me, I want to know. I want to be ready.

It only took a few minutes to order the kit online; I got $20 off through a Mother’s Day special. My interest didn’t lie in learning about my ancestry, although that testing was included—I’d already done that through Ancestry.com (with predictable results of Scandinavian, British, Spanish, and Irish). The risk test cost an extra $100 on top of the $99 for the basic DNA test. I was then prompted to select that I wanted the testing for Parkinson’s and Alzheimer’s—you have to opt in. I’d read that you needed to consult a genetic counselor before you could ask for the test. A disclaimer encouraged genetic counseling, but it wasn’t required. All I had to do was select the two tests and click “next.”

A few days later, my “saliva collection kit” arrived in the mail, a bright pink sticker reading “HEALTH + ANCESTRY” on the front. Bright, rainbow-colored drawings of chromosomes adorned the box. Providing a sample only required registering the kit online, spitting into a tube, sealing up the sample, and mailing it back. The testing will take 6-8 weeks, and 23andme will notify me once the results are available online. Apprehension hasn’t set in yet; I’m still clinging to the possibility the randomness of genetic inheritance has spared me (I suppose this is called denial). But I’m still wondering if I’ve received those genes, like being passed down a cursed family heirloom. My guess is that the email in my inbox telling me to go check my results will finally elicit the fear that’s been hibernating all along that perhaps when visiting my grandfather or watching that home video I was looking into my own future. But for now, all there is to do is wait.

*23andme’s test is controversial for other reasons, like data privacy, the company’s true motivations behind offering the test, and if the results could be used against a patient later when trying to get health insurance. I’ll be exploring these controversies in another post. Stay tuned.

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