Hi. It’s with a mix of sadness, surrender, humility and gratitude that I hand the narration of the Living in a Body Podcast over to my friend Cameron Mack. I think he does a very fine job. Sometimes he sounds a little bit like me. I’m not well enough to do it myself. I hope to be back someday. Please pray for me and press PLAY above. ❤️ Hal
The Year in Review - Part One
Happy New Year, everybody.
In case there's been any doubt lately, Monday evening's crash confirms that I have entered the category of severe ME-CFS. With a distressing level of weakness, I'm still able to walk to the bathroom and across the hall to my second bed, but I'm fully housebound and mostly bed bound. One time a day in the evening, I take a trip downstairs to the kitchen, but it feels a bit treacherous. I'm spending most of the hours of every day in bed feeling quite fragile and quite ill. In desperate hopes of avoiding any further crashes, I lie here trying to calm this shattered nervous system of mine. I'm writing this post 5 minutes at a time with extended rests in between. Eating has become very difficult and I speak only in a whisper. When I have visitors, we communicate by passing my Remarkable e-pad back and forth. I regularly fear that I'm coming to the end of my life, but one day at a time, I keep surviving. There's much more to say about living in this week's version of my body, but I'll leave it for another time.
This afternoon, As I was lying here feeling sick and staring at the "Healing is Possible" painting on my wall, it occurred to me what an amazing year I had in 2023. How could I have ever complained? Compared to my current state, last year feels like a bed of roses. From hanging on the beach at the family reunion to visiting family and friends on an east coast adventure, 2023 was a special year full of good living. Of course, if I could do it all over again, I'd spend 12 months sitting quietly on the porch breathing in the Love of God and calming my nervous system. But alas, 2023 is in the history books.
In order to remind myself of some of the highlights of the year, I opened up the photos app on my phone and I scrolled back to Jan 1. I'd like to share some of those highlights with you now .
The Engagement
The year began on December 31 when my daughter's boyfriend, Andy Donnolly called me out of the blue on New Years Eve day to let me know that at midnight, he was intending to ask Hallie to marry him. He was calling to ask for my blessing. I was stunned and delighted. I gave Andy my full blessing and felt the glow of this once in a lifetime moment. I'll never forget it.
Hallie and Andy will be married at an outdoor ceremony in the Cuyahoga Valley on June 15. I'm praying that I'll be well enough to attend the wedding in order to walk my beautiful daughter down the aisle.
A Yoga Class
My very first yoga class was a Tuesday night Asana class with Margot Milcetich in the basement of the UU church of Kent. I used to enjoy taking that class and then heading downtown for a beer and a burrito at Taco Tanto's.
Years later, one of the most memorable yoga classes was an Ashtanga class I took in Columbus, Ohio while I was down there for a school job. After class, the instructor came over to me and said, "You have a beautiful practice." I walked out of that class feeling on top of the world.
In February, I was looking for somewhere to go on Sunday mornings and I found a new yoga studio in Kent that was offering a Sunday morning class called "Chillax." I showed up and it felt good to break out the mat and stretch out on the floor in the familiar peaceful environment of a yoga class. After a few classes, I soon found out that even attending the Chillax class was too strenuos for me, so I stopped going. But for a minute there, I was re-living the good old days when I was seeking out yoga studios all over Ohio.
Tik Tok
2023 was another year of Melba, my three wheel electric scooter. As you may know, she's the fastest thing on the bike trail and has provided me with so much outdoor enjoyment since my health took this nasty turn.
This Spring, I was riding Melba into town on West Main Street and a driver pulled up beside me and called out, "Hey! Aren't you that guy from TikTok?!" Yep. I'm that guy. After a good handful of viral moments, in 2023, I reached 2.6 million followers and I got to experience several public sitings at random places around town.
I spent the first part of the year honing my system for creating multi-screen multi-track compositions using Ableton Live, Final Cut Pro and my iPhone. My daily creative video ventures were a highlight of my "partly housebound" life of early 2023.
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In May, I moved from the "Creator Fund" to the "Creativity Program Beta" on TikTok. This new program paid creators better per view for videos that were over a minute long. After years of creating 15-30 second videos, on the day I joined the Creativity Program, I revamped my whole approach. It was a risk but it paid off big time. In the first month of creating minute long videos, I gained 80 million views and TikTok paid me a whole bunch of money.
In October, I let go of TikTok in another desperate attempt to calm my oversensitive nervous system. I miss the creativity. I miss the income. I miss the wild excitement of viral videos. But these days, I live vicariously through Hallie who's blowing up on TikTok as we speak.
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The Roadtrip
At the end of March, Hallie was producing a cabaret show at 54 Below in Manhattan and I couldn't bear to miss it. With just enough wellness to make the trip seem feasible, I hired Cameron Mack as my driver and assistant. We turned the back of my Toyota Prius into a bed, loaded the luggage and the wheelchair onto a rack on the back and we planned for a stress-free roadtrip to New York City. When we found our spots in the fully loaded car, Cameron pushed the start button to discover that the battery was dead. Our spirits were briefly deflated, but within about 10 minutes, my mom arrived to save the day. Cameron and I pulled out, stopped for gas and headed east.
We stayed in a cool sub-level airbnb just a few blocks away from Hallie's place. On the first morning, Hallie and I planned to meet on the sidewalk halfway between the two addresses. Under brisk blue March skies, I enjoyed wheeling through Herbert Von King park in my blue excalibur electric wheelchair. As I wheeled down Marcy Ave, there she was, Hallie Walker in the flesh -- all four foot 11 inches of her New York City power and glory.
We had no particular plans for the morning, so I, the guy with moderately severe ME/CFS, suggested that we climb to the rooftop of her six story Bedford-Stuyvesant apartment building. You know me. That's just the kind of guy I am. There's no way I was gonna let this illness get in the way of experiencing a stunning view of Manhattan with my sunshine, Hallie.
As we began the slow climb up the stairs, Hallie expressed some concern, "Are you sure you're ok, Daddy." I appreciated her concern and her understanding of this illness. "Yes. I'm ok, Hallie." I've been living with ME/CFS for 32 years. I understand pacing. I know what I can handle. I mean, in 2019, I became a competitive table tennis player. For many years, I directed multiple ensembles at the UU Church of Kent. I grew a vegetable garden at my home and planted an asparagus garden at my mom's. When the groundhogs started digging under the fence, I dug a trench all the way around the garden and buried some wire mesh to keep them out. For many years, I drove hours to spend full days teaching at elementary schools. Even though I was always looking for a place to lie down, I was the most energetic guy with ME/CFS that you will ever meet. Sure, I would sometimes crash, but I always bounced back.
We made it to the rooftop with no great consequences. We went to see a Broadway show. Cameron and I played RAV drums on the rocks overlooking the Long Island sound. We visited one of my best friends, my college roommate Jerry who lives in the woods in Connecticut. We spent a couple days with my friend Peggy who has been living with severe ME/CFS for the last 30 years. And we visited my childhood friend, Georg outside of Rochester New York. Somewhere in Connecticut, I had a pretty bad crash which made the last part of the trip quite difficult. But we made it home safely. I eventually bounced back. I always bounce back.
Go Congress
One of the great enjoyments of my life has been playing the ancient Chinese game of Go. Played on a 19 x 19 grid board with black and white stones, go is a beautifully complex game of strategy and shape, life and death, balance and power and intense competition. I learned the game as a child on a cardboard version of the game and I've been playing it ever since.
Amazingly, the American Go Association held its annual Go Congress at Kent State University last summer and I was there. Game after game, I got to sit silently with 300 other Go players as we each pursued to surround more territory than our opponent. It truly a wonderful experience until day 5 when I woke up with a bad cold. This cold produced the first of a long series of crashes that brought me to my current state of health.
I'm sorry to say that I've had to give up playing my beloved game of Go for now. The fierce competitive nature of this game of war has proven too intense for my delicate nervous system.
Thank you for being here. Thank you for reading. Thank you for listening. I hope you’ll say hello in the comments. What was the highlight of your 2023? I’d love to get to know you better. Have a great Saturday. Enjoy living in that body of yours. Ok? See you next time. ❤️ Hal
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