Sunday, August 9, 2020

Here's a little story from the chapter I've titled Doctors and Patience

I never embraced the ALS community, attended any support group meetings, or met a lot of fellow sufferers, but in the waiting room at one of those early clinics, I met one. He was in his mid-30s, married with two kids, and worked for a local beverage distributor. He'd been diagnosed after I had.

I watched as he stepped through the hallway to the desk, carefully planting each foot before making his next move. Standing still to greet me, he looked awkward, uncomfortable, like he was propped up in that position. He spoke with some difficulty, through a heavy slur; sometimes I couldn't understand. 

The staff was concerned about some falls he'd taken. He'd smacked his head more than once, his face visibly damaged. It was clear to me and anyone who'd put eyes on him more than a few seconds: he shouldn't be walking. For at least that day, he kept his feet under him.


His wife was there, spewing negativity. Seeing all that her husband was going through, it seems she grew angry at the world. With every word from her mouth, from the waiting room I scowled in disgust. Still, despite all I'd seen, I thought: At least he's married; at least he has kids.


A few months later I saw him again. While I still drove to these appointments, he'd been forced to give up walking and sat slumped in a motorized wheelchair. He was accompanied by an aide, his wife nowhere to be found. We said hello and he spoke, but his aide had to interpret; we couldn't understand him at all. After a short interaction we went our separate ways and even sitting in my cell, in the ALS clinic, I put him out of my mind. I was strong and independent, I could never be like him.


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