Living in a Body
Living in a Body
Wheelchair Life
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Wheelchair Life

Episode 29 -- Hal Walker on Wheels
32

Wheelchair Life

My name is Harold Walker. When I was teaching in elementary schools, I was known as Mr. Halwalker. Many of the younger students thought Halwalker was my last name. I found it so endearing that I never corrected them. In fact, I encouraged it. Besides that, I've always been quite satisfied with the Walker name. It's a good last name to have. I come from a proud lineage of Walkers and a strong line of Harolds.

My grandfather, a law man from Birmingham, was Harold Walker Sr. Born in 1899, Grandad lived to be 98 years old. He prided himself in rarely getting sick and he just barely missed the opportunity to be alive in three different centuries. Into his 90's, he was still hanging from the rooftop of his home touching up the house paint. He refused to hire a contractor. My dad was Harold Walker Jr. Until he was almost 90, he was still riding his bicycle on highway 59 across Kent. We always expected him to live to be a hundred, but cancer took him down at 92. I'm Harold Walker lll. I'm living with moderately severe chronic illness. At the age of 56, mostly bedridden, I use an electric wheelchair to get around the house.

The surname Walker is derived from the Old English word wealcere, which means fuller. In Scotland, to walk, still means to "full" cloth. Wool has a natural oil called lanolin which needs to be removed before it can become cloth. In the old days, the wool was soaked in clean water and earth. Then, it was pounded by foot. Typically, this pounding was accomplished by putting the wool in a vat with stale urine and stomping on it much like grapes are stomped to make wine. This procedure was called "walking", and thus the surname "Walker" was born.

It turns out that my proud lineage has humble roots -- roots that were willing to walk in stale urine for the sake of making wool for others.



When I rolled into his music studio on my wheelchair, the first thing that Chris Martin of Coldplay said to me was, "We'll have to start calling you Hal Roller." I didn't get the joke at first, but now I get it. To be honest, I don't find it to be that funny. I'm Hal Walker. I love my name and I love walking. As a matter of fact, going on a good walk is one of my all time favorite activities. But I haven't been doing much of it lately. With this illness, a blue electric "Falcon" wheelchair is my preferred method of getting from one place to another.

On Monday though, I did an errand with my mom and we left the wheelchair at home. As I stepped down the front stairs and then walked the fifty feet to the car, it was very apparent to me that my body hadn't walked that far in weeks. I could feel it in my spindly legs. I could feel it in my rickety stance. The muscles just aren't there anymore.

When we got to the destination, this time, I needed to walk about 100 feet each way. In the past, this is the kind of distance where I would naturally pick it up to a jog. But with the wobbles in my walk, turning up the speed seemed strangely risky. My mind remembers the ease of running, but my legs seem to have forgotten. When I made it back to the car safely, I was quite happy to sit down. As my mom drove us home, I stared out the window and I pondered the frightening reality of losing muscle over time. I started to entertain the question, "What am I gonna do to turn this muscle wasting around?" ME/CFS is a merciless thief and my beautiful muscles are the stolen treasure.



The first time that I went public in a wheelchair was last February. My caregiver at the time, Arnel and I went to Summit Mall for a MacBook repair at the Apple Store. My wheels felt good on those hard mall floors. It was a smooth ride. For some reason, almost everyone that I passed waved and said "hi" to me. I don't know about you, but I don't recall anyone waving and saying "hi" to me in the past when I was just walking through a mall. I wondered if maybe people had gotten more friendly over the pandemic . But I was pretty sure it was because I was in a wheelchair. It was striking how many smiles I got.

When we got to the Apple store, I was immediately swept up into the care of one of the Apple geniuses. They took me to a special wheelchair accessible table in the back where I could kick my feet up and spread my gear out. They left me alone there and I had the whole table to myself. To be honest, I'd rather have been at the regular people's table where everyone else was. But I got the MacBook fixed and zipped around the store a few times before heading home.



I'm glad to say that I've had a series of better days lately. Last Saturday, I woke up feeling well enough that going to the Haymaker Farmer's Market seemed like a real possibility. But then the terrifying thought of facing all those locals in a wheelchair took over my brain. I'm kind of a public figure in in my town and I'm socially awkward enough without being in a wheelchair. Add a wheelchair to the mix and I'm seriously questioning whether or not it might just be better for me to stay home.

Realizing that this could be good fodder for my next Substack, I let Mango know that I was hoping to go to the Farmer's Market after breakfast. Mango, who's my caregiver, smiled in agreement and I was committed. I was committed to facing my fear of people. "What if they don't believe me?""What if they perceive me as a tragic figure living out the sad life of chronic illness in a wheelchair?" "What if we can't figure out what to say to each other?" "What if they look away and pretend they didn't see me?"

That morning, a friend reminded me that courage is not the absence of fear, but rather feeling the fear and taking the action anyway. With the added bonus of being able to tell the whole story on Substack, I was ready to take action. Besides, Mango would be by my side the whole time.

There were no handicap spots near the farmer's market, so we parked with everyone else in the gravel lot across the street. Normally, Summit Road is a very difficult road to cross, but not so if you're in a wheelchair. All the cars stopped in their tracks for me. When a car in the back of the line honked impatiently , one driver shouted out the window for the whole world to know, "There's a wheelchair crossing!"

Our first stop was at Pete's medicinal tea booth. Pete called no attention to my chair. He graciously invited me for dinner next week and gave me a sample of tea in a paper cup. Then I saw Trish walking past and I called her over. She generously offered a poem that she'd written that morning. She leaned down real close and read it out loud.



Our second stop was at the Traveling Stanzas Poetry Makerspace. David let me know that there was a ramp in the back so I could go inside. The truth is that I could have easily just walked up the stairs, but I took the ramp cause I didn't want anyone to think that I'm faking it. In the bus, I wrote a quick poem called "Kent has tomatoes."

Mango and I made our way through the market and bought peaches, green beans, yellow squash and lettuce. The large rear wheels on my chair made rolling in the gravel a breeze. Under the bridge, we ran into my neighbors, Ralph and Beth. I stood up from the chair to give them both a big hug. After I sat back down, we had one of those awkward moments where no one knows what to say next, so I made my familiar socially awkward exit. I loved the hug with Ralph, though. That hug was one of the highlights of the whole trip.

Kenny was working at a produce stand and I went over to say "hi." Somehow, I felt the need to say, "Look at me... in a wheelchair. Can you believe it?" He gave a good response, "Look at you out of the house, Hal!" He was right. Thank God that I made it out of the house last Saturday. My soul got nourished.

As Mango and I were leaving the market, I realized something. It's just a chair on wheels. It's a chair that has wheels on the bottom. I mean, heck, everyone should have one of these things. It's comfortable, it's relaxing and it's enjoyable to ride. And you never have to worry about finding somewhere to sit down.

I love you. I literally love you. And I figuratively love you. Thanks for being here. Have a great Saturday. Maybe I'll see you at the farmer's market today.

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My website is super old but I’m hoping to revamp it someday.
Send me a postcard: P.O. Box 1043 Kent, Oh 44240
Finally, start your own Substack! I’d be happy to help you get started.



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Living in a Body
Living in a Body
Hal Walker, Ohio musician and writer living with severe ME/CFS, weaves music, stories and community from his bed.
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