101.5°F

Living in a Body

101.5°F

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101.5°F

Episode 21 -- Simple Joys and a Bad Fever

Hal Walker

Jun 18, 2022

Hi. I’m Hal and this is “Living in a Body.” Welcome! To hear me narrate the story, please click the “Listen Now” button above. (8 minute listen) Also, would you consider helping me by sharing this episode with one friend? Thank you! Hal

101.5°F

To be honest, I’d rather be writing a publication called, “Low Key Gliding — Hal Walker Tours the World Playing the Khaen at Every College Campus from San Francisco to Bangkok.” This summer would be the perfect time to do it. I’m 56, I got no job, my kid’s supporting herself in Brooklyn and I’ve got 1.7 million young adult followers on TikTok. Imagine the stories that would come out of that Substack — this week Asheville, next week Boston, then London, Paris and Florence. I assure you. We’d have a great time.

But that’s not my story. That’s not my publication. My Substack is called, “Living in a Body — Hal Walker weaves music, stories and community from his bed while surviving moderately severe ME/CFS.” My story goes like this:

101.5°F at 9:00 at night was kinda scary

On Thursday, I woke up with a terrible case of diarrhea, a raw throat and chills all over my body. In the morning, I took a COVID test that showed up negative. I spent the day writhing in bed, crying on the phone to my dear sisters. It was a rough one. It was 92 degrees outside and I live in a house with no air-conditioning. In the late afternoon, my 90 year old mom came over to rub my feet and to bring me fans and an oral thermometer. Thursday evening, my temperature started at 99.5° and then went all the way up to 101.5°. When I saw the 101.5°F, I freaked out a little bit. I called my next door neighbor Merl just to let him know what was going on. I appreciate that he said I could call back anytime through the night. Merl and I look out for each other that way. He’s the best neighbor ever. I swallowed two Tylenol PM’s and slept till 5 in the morning. Today, I took another negative COVID test. The raw throat and the diarrhea continue, but thankfully, my temperature is back down to 99.5.

There you have it… living in a body. It really sucks sometimes. I’d much rather be writing about Asheville, Paris and Bangkok.

Health wise, I had a “better” day on Wednesday. Whenever I have a better day, I start planning my life around “better” days. On Wednesday, my plan was to find a collaborator on Instagram, release a series of ringtones and rebuild my website to sell samples of my music in a shop. These days, a “better” day means that I’m not overwhelmed with illness. It means I can put my focus on other things besides just surviving the next 15 minutes. A “better” day means I can sit up in bed or at my computer for a whole 45 minutes and I can even do a little weeding in the garden. The reality is that the definition of a “better” day has changed so much in the last year and it keeps changing. This illness has been a traumatic and perpetual practice of adjusting to new normals. Right when I get adjusted, something weird happens - like Thursday. Because I’ve gotten so accustomed to symptoms showing up and never going away, any new onset of illness is scary.

The view from my toilet… that’s Merl’s barn to the right.

Recently, I asked a friend what she has faith in and I loved her response. I can’t quote it exactly, but it went something like this:

“I have faith that around every corner, there will be a simple joy — a cup of tea, a conversation, a meal, a quiet breeze, a person, the night sky…”

That’s just the way she lives. I told her that that’s the way I wanna live and she asked, “Then what’s stopping you from living like that?” I think my answer may have been something like “living in this particular body.” I realize that there’s no excuse for my reluctance to have faith in the simple joys around every corner. But c’mon, you try being sick at home for months on end and see how much simple joy you conjure up. Lol. I’m sorry about that. With all this time spent on the toilet in the last couple days, I just couldn’t resist putting that line in there.

This light under my bed is so comforting at night

From what I hear, whatever I focus on will grow. So, let me tell you about my celery juice in the morning, the light that turns on underneath my bed at night, the view I have from my toilet all day long and these fans that are blowing in my window right now — simple joys around every corner. I’ll close this episode by telling you about a big joy that happened in my life on Wednesday.

Kenge Kenge Orutu is a traditional Luo tribal music ensemble from Kenya. We became friends when they visited Kent in 2019. For me, Kenge Kenge’s performance was one of the highlights of the “A Love Song for Hal” benefit concert in January. They’re back in Ohio for the month. On Wednesday, they took the time to hang out with me on my front porch for about 45 minutes. We spent most of the time playing music. As you’ve heard before, when there’s music to be made with others, I pull from the reserves to join in on the festivities. It was an honor to spend time with these guys. Imagine that… all the way from Kenya to my front porch. Maybe I’ll stop in Kenya on my next world tour. :)

Don’t miss Kenge Kenge Orutu while they’re here

If you’re in NE Ohio, I encourage you to seek out a performance by Kenge Kenge while they’re in town. Here’s a Facebook event with some locations and details. I’m including a TikTok clip of our jam session below.

Thank you for reading this far. Thank you for listening. Truly, it means a lot to me. I’m gonna go back to bed now. Hang in there, everybody. Don’t give up. Be sure to love that body of yours. Remember, if you’re willing to believe, there’s a simple joy waiting for you around every corner. Hal