Watching You from the Window

Living in a Body

1×

0:00

-11:34

Watching You from the Window

Episode 72 -- The Brutal Process of Slowing Down

Hal Walker

Nov 18, 2023

Hi. I’m Hal. If you look forward to reading this publication, I encourage you to become a paid subscriber. If you’re already a paid subscriber, thank you so much! Please click PLAY above to hear the podcast version of this episode.

Watching You from the Window

I've never been the kind of guy that sits and stares out the window after lunch. I was always too busy moving on to the next thing. But after lunch yesterday, while my friend Marion was cleaning up the kitchen, I wheeled into the back room and I sat there and I stared out the window. The whole backyard was glowing with a deep autumn afternoon sun and the years of hard work that I put into that yard flashed before my eyes. I wish I could say that I smiled in those few minutes, but I didn't. Instead, I shook my head with a sad disbelief about the reality of my situation. I couldn't believe that at age 57, I'm a guy who sits in a wheelchair after lunch and stares out the window. After Marion left, I sat there and I wept. I felt deeply the loss of the man that I used to be.

I used to run up and down the stairs, two steps at a time. For some reason, I was always in a hurry. I don't know what the big hurry was, but I was in one. I was always running just a few minutes behind, trying to catch up. These days, I have nothing on my calendar and nowhere in particular that I need to be. I ride an electric chair lift up and down the stairs and I'm no longer in a hurry.

I remember back in the day getting into my car and realizing that I'd left the keys upstairs. I thought nothing of bounding back into the house, through the kitchen and up the steps to the second floor. In my room, I'd look around 'till I found the keys and then I'd bound back down those steps skipping one or two at a time on my way back to the car. Then I'd back out my narrow driveway and zip off to a rehearsal at the church or a 12 step meeting in Cleveland or a school job in Columbus. I was a man on the move in my Toyota Prius, forever traveling the streets of Kent and the highways of Ohio. I liked it that way. These days, a trip to the first floor is about as much traveling as I can handle. My body is so fragile. My nerves are like thin glass that's ready to break and crash all over the floor.

In this ME/CFS-ridden body, when I venture up or down the steps, there's no bounding happening anymore. Instead, I'm slightly hunched in a chair lift that has only one speed, super slow. Typically, I sit with my legs crossed. For the little bit of comfort that it provides, I like to rub my neck or scratch my head or shake my leg while I ride . I don't mind how slowly it goes. I'm grateful for the smooth, quiet ride along the wall. That chair lift was a good purchase.

As I begin the slow ride up, I often catch myself in the mirror that hangs above the fireplace on the living room wall. Seeing my own reflection in the distance, I sometimes chuckle in disbelief. Sometimes, I cry. Sometimes, I smile. Sometimes, I curse under my breath. I've got a lot of feelings about how this illness has slowed me down so much. These days, I move slow enough that I get to feel all those feelings. I no longer have the option to run.

The radical slowing down of my physical body at the prime age of 57 didn't come as a total surprise. I've been living with a much milder version of this illness since 1991. In a sense, I had 30 years to prepare for this reality. Certainly, I'd heard the stories and I wondered about my future, but there's no way to prepare for ME/CFS when it hits this hard. The recent intensification of my symptoms happened fast and without my consent. Over the course of a few weeks, I got initiated into the "severe" or at least the "practically severe" category. I'm now a guy that needs a wheelchair to move around the kitchen. I'm now a guy that spends a significant percentage of his day in a darkened room, belly down in bed. I'm now a guy who sits and stares out the window after lunch.

Being forced to slow down in the physical realm has been a grueling process. Slowing down in the creative realm is a whole nother side of the story. Probably to my own detriment, I fight against it everyday. The passionate flow of ideas running through my head has slowed very little. My artistic drive keeps pushing me to create. My passion for the creative process is hungrier than ever. Even as the neurological symptoms of ME/CFS become more severe, I'm not ready to be done yet. I was just getting started. As an artist, I was just coming into my own.

In my home, I have a beautiful office that sits quiet while I battle ME/CFS across the hall. From my bed, I miss the chair and the desk where so much creativity has happened over the years. Yesterday, as the late afternoon sun filled the west facing window, I ventured over to my desk, and I opened up a hard drive called "silver." Immediately, the hundreds of files in folders reminded me of the awesome quantity of work that I produced during the pandemic years. In that time, my laptop and I were almost literally on fire. Regularly, I'd have Ableton Live, Final Cut Pro and a host of other powerful apps fired up and running simultaneously on my machine. With daily collaborations on TikTok, weekly virtual choirs for church, a Sunday night YouTube sing-a-long, an online school residency and a two times a week interview show, I call 2020 my golden year. Firing on all cylinders, I was a steam engine of new technology and production, and I didn't know when to stop. The crashes of 2021 didn’t give me a choice in the matter. ME/CFS began its ruthless take down.

After I watched a couple video files from the drive, my first thought was an overwhelming concern. I thought, “How can I possibly compile all this work to show the world what I’ve done? How can I pull all this creative magic from the pandemic and make sure everyone knows that it actually happened? I can't just allow these creations to be lost forever in this silver-cased hard drive. There's too much good stuff here.” After a few minutes of dreaming, the symptoms in my body took over and forced me back into bed. It’s abundantly clear to me that I just can’t do it like I used to do it anymore.

I'm not sure what's gonna happen to those files on that hard drive. They may never again see the light of day. Maybe one video at a time, I'll present it all on YouTube. Maybe my talented friend Elanor will sweep in and do the work for me. Or maybe the historians will take care of it when 2020 enters the history books. They’ll say, “You should’a seen this guy, Hal Walker. He was a force to be reckoned with. Here’s his song, ‘Low Key Gliding,’ the song that defined TikTok 2020."

Or maybe I'll listen to the voice of my recovery that assures me that all things of the world are fleeting. No amount of work that I produce or accolades that I receive will ever satisfy the hunger that lives in me. My highest power asks, "What if this illness is a gift, Hal?" I'm willing to consider that. And “What does this slowing down have to teach you, my brother?" Well, it feels kinda like a crash course in humility. Somehow, I think I’m learning about patience, gratitude and acceptance. And "Why is sitting and staring out the window not enough for you?" Probably cause I’m human. I don't know. Maybe it will be someday. It's just taking some mighty painful gettin’ used to. I had such great other plans for myself.

From my window, I can see Melba out there in the garage waiting for me. She's all charged up and ready to go. Melba's my speedy three wheel electric scooter that's given me so much joy in the last couple years. She’s the fastest thing on the bike trail and I’ve been the one riding in the passenger seat. I’m sorry to say that lately, I haven't been well enough to ride her down to the river. I miss it so much. But winter’s coming and I have a feeling that Melba's been out there praying for me. I imagine she’s worried.

Don't worry, Melba. God's in charge. I'll be watching you from the window.