Friday, August 28, 2020

What do you think?

I've been writing a lot of stories for my book: trying to remember the details, researching the dates, and describing how I felt. 

Sidebar, if you're driving down a dirt road and you see someone in a wheelchair stopped on the side of the road waiting for you to pass, slow down; I can't jump out of the way.

Like stories for my blog, I've focused on what happened, and what was going through my head when it happened. But I haven't discussed how it makes me feel now, looking back on it. And I think that's a big part of the overall picture.

I spent a few days writing about a canoe camping trip in 2010. It's a story I've meant to write for a while, and for this purpose I tried to keep it short, though it turned out longer. I think back on those days and there's so much to say.

Over the years I've had more and more things taken from me. Last year it was my house and car. Before that it was walking long distances, or really anywhere outside. Before that it was hiking, and biking, and running, and skiing, and golfing, and drinking at a bar, and so many other things. 


Don't you want to be there?


I've been feeling trapped, anxious, and frustrated. I need to get away. I need to unplug. I look back on four days in the woods, paddling a canoe, making camp each day. Moving from Point A to Point B without smartphones and newsfeeds and Facebook and email and all the other BS that makes up daily life.

I can't put into words how much I miss times like that. The last thing I lost that came anywhere near that sense of freedom, of independence, was driving. After I couldn't run, or bike, or walk in any meaningful way, I could still drive. I've talked about that feeling you get after a hard workout or competition. I think the feeling I got driving the country roads alone in the middle of the afternoon, or pounding down a dirt road with high beams blazing through the night; I think that's the last time I felt anything like that.

What do you think? In a book about the past, does it make sense to reflect in the present? I've already given a sense of the present, specifically with the phrase "I don't remember..." in place of a detail. But I've tried to keep the reader in the moment. Should I? Do you really want me to reflect on the story you've just finished reading? Hmm, I don't know; I need your help.

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.