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A decade of waiting (or a part of me is in a petri dish right now)



A decade of waiting (or a part of me is in a petri dish right now)


The other day, I had a small medical procedure done and as I write this sentence a chunk of my body floats in a petri dish waiting for a diagnosis.

This impending diagnosis is something new– unrelated to my sarcoidosis and cerebellar degeneration.

And that’s where I’m right now, in two places, a petri dish and here talking to you.

Talking to you helps. It centers me. I busy my mind with puzzles of diction and syntax. I seek myself in sentences. And that’s good. We need healthy distractions. And so thank you for being a healthy distraction.

So here’s a story…

When I get home from my doctor’s appointment, Dylan rushes to the door and launches into a breathless description of the school day which he concludes with, “Can I have a bowl of cereal?”

I move to the kitchen, open the cabinet, reach for the bowl and think about how I’ll turn 40 soon.

I turn to the refrigerator and grab the milk and count the health scares I’ve had over the past 10 years– something like 8 or 9. I marvel at how much of my 30’s was spent waiting for test results.

I pour the milk, watch it flow from carton to bowl and think about Tillie Olsen’s As I Stand Here Ironing— a short story I haven’t taught in 12 years or so.

Isn’t it strange how the brain works? How memories, like mice, scurry across the present baseboard without warning.

I hand Dylan the bowl and details of Olsen’s story sparks like steel scrapping concrete.

An unnamed woman irons clothes as her mind and heart unwinds feelings of guilt and regret and concern for her daughter, Emily. The woman, like us, performs familiar physical actions, busies herself, as her mind nibbles at the unknown. She’s present and past. Found and lost. Comforted and unnerved.

I remember how the students moaned the story was boring, nothing happens. It’s just a mom ironing, thinking about her daughter. I remember how I took a teacher’s stance, proclaiming the heart of the story beats in the actions not taken. How silence often speaks everything we want to say but can’t.

I remember after class, in blue ink, I underlined, “There is all that life that has happened outside of me, beyond me.”

And how, after that, I quit teaching the story because students didn’t get it. But truthfully–I was the one who didn’t get it however, as Dylan takes the bowl of cereal from me, I think about a story I read years ago. A story I now understand.

Dylan shovels down a scoop of Cinnamon Toast Crunch and he tells me something about his Christmas list and a gingerbread house and a new student in his class and I smile and nod but I’m not there with him. I wish I was. But I’m not.

I am in a petri dish waiting for a diagnosis.

Be well,

Jay

If you enjoyed this post, you might like: I want to tell you two things…

One thing I’ve learned since starting Write on Fight on is the importance of sharing your story. It’s not so much the act of writing it down, but knowing your story will be experienced by others and how others might be comforted or inspired by your story is one powerful way to improve your quality of life.


Also… I’m excited to announce the formation of Philadelphia’s first Ataxia Support Group! I’m still working on an agenda but our first meeting will be held on February 22, 2020.

If you know anyone with ataxia or a caregiver of an ataxia patient and they’re in the Philadelphia area, please pass this information along. There is great comfort and power in finding people who empathize and understand.


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