Stuck

Living in a Body

Stuck

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Stuck

Episode 56 -- Breaking Through the Wall to Connect

Hal Walker

May 06, 2023

Hi. I’m Hal. Welcome to Living in a Body. We celebrate reaching 1000 subscribers this week! I send a special welcome to every single one of you. I hope you’ll introduce yourself in the comments. I’d love to get to know you better. Thanks for being here. H

Stuck

I'm stuck. In fact, I've been stuck for weeks. I'm so stuck that I'm calling this entire episode, "Stuck." I have a feeling there's so much to say, but I'm having a hell-of-a-hard-time getting anything to come out onto the page. The words are trapped behind a wall of illness, perfectionism and brain fog. Today though, I'm making a valiant effort to spit something out into the world. I want to let you know that I'm still here.

I'm sending out this smoke signal, this message-in-a-bottle, this secret love note in hopes that it reaches you. As I lie here alone in my long adjustable bed in this big square house, I crave connection. I'm yearning for contact. I'm calling out to let you know that under challenging circumstances, I’m surviving. One day at a time, I'm battling to come to terms with this illness, I'm struggling with the creative process and I'm fighting against my tendency to hide in this symptom-ridden body. If all this sounds rather dramatic, trust me. It is.

About 10 days ago, I experienced yet another crash. On top of all the preceding crashes, this has been a particularly rough one. It’s crazy the way this illness behaves. Overnight, a whole new set of symptoms can settle in. It’s like a switch gets flipped and there’s no way to know if it’s ever gonna get flipped back. I don’t want to overuse the word devastated, but I’m devastated. It’s so difficult to know what keeps making my symptoms worse. This morning, my ears are ringing louder than usual, my breathing is labored, my lungs are burning, my legs are aching and my brain is foggy and numb. ME/CFS has managed to convince this six foot body of flesh that it needs to be working constantly behind the scenes. My legs feel as if they've been running all night long but all I did was go downstairs to make myself breakfast. It seems that this illness punishes me for doing the things I love.

Adjusting to this new baseline, there are so many layers of grief. I'm reminded once again how ME/CFS robs me of my sense of self and sabotages my ability to create. As I stare at the same four walls and the same blank page, I spit out line after line that essentially reads "I have nothing left to say and if I did, I don’t have the strength to say it." It's a struggle to craft words in a way that doesn't sound like a big chronic illness pile of self-pity. While it's true that these symptoms can paint my thinking very dark, the forever pleasant midwesterner in me is cautious of spewing too much negativity into the world. So I remain stuck. However, as I face these paragraphs this morning, after weeks of silence, in all my broken humanness, I'm reaching out to find you, my friend, my fellow traveler. Thank you for being here.

If I weren't so stuck, I'd tell you all about my trip to New York. Even though it seems like a long time ago now, I'd tell you how Cameron and I got the car all packed up with a bed in the hatch and a fully loaded rack out the back. When I pushed the power button to launch the trip, I was met with silence. The car battery was dead. It was a disappointing launch, but fortunately, my mom came right over to save the day and she jumped the battery. Cameron Mack was my helper and my driver for about 10 days on this unlikely roadtrip and he did a great job. I hope to tell you more about the trip another time when I'm not so damn stuck.

I will share with you though that one of the highlights of the trip was sitting with Hallie on her Brooklyn rooftop overlooking blue skies and the big city. I took it real slow up the six flights of stairs as Hallie kept encouraging me to sit down and rest as much as I needed. Hallie’s cool. She understands the seriousness of ME/CFS and “post-exertional malaise." She cares about her old dad. Hallie Walker in New York is a stunning site to see. I got to watch her perform at a venue called 54 Below. I was feeling good that night. In fact, I was on top of the world, gathered with old friends and family to see my daughter sing her heart out. I wish you could have been there. I was a very proud dad.

If I weren't so stuck, I'd tell you about the Hal-a-pa-loo-za concert that happened on April 21. It was an incredible once-in-a-lifetime event honoring my 25 years of service at the UU Church of Kent. It's the kind of thing that most people only get to experience after they die, but I got it while I'm still living. I'm grateful for that. I guess living with ME/CFS is a kind of death. The person that I was is no longer and there's no way to know if he's ever coming back. At the “pa-loo-za,” I got to perform two songs on a beautifully lit stage and I absolutely loved it. For a few minutes, I experienced the on-stage-Hal that I remember so well. It's amazing how connecting with an audience makes me come alive. Once again, I was reminded how much skill I have for presenting a song. It's such a damn shame that the world of stages has, at least temporarily, lost the one and only Hal Walker. I mean, that guy knew how to hold an audience. lol.

I entered the venue on that Friday night and immediately realized that some of my favorite people in the world were there to support me. As I hugged my old singing companion Kathy Ke, all the feelings rose up in me and I broke down in tears. In fact, I'm crying right now thinking about it. I was so honored to be in the company of so many people that I care about. And I was deeply touched by the expressions of care that all those people showed toward me.

Matt Watroba was the perfect host. He started the night off with an "Om-like" sing-along of Amazing Grace. The congregation that I trained for 25 years jumped right in and harmonized through the whole thing. The music went on all night long and I sat in my wheelchair and basked in the glory. Even Rev. Melissa Carvill-Zeimer made a surprise appearance by video. She and I worked together beautifully for more than 10 years and it touched me to the core as I listened to her remember those times. I went home with a big box of handwritten letters from the congregation and the daunting task of facing the fact that the end of an era has come. I'm no longer the music director of the UU Church of Kent.

But wait! Hold on! I almost forgot to tell you. I was honored with the title of Music Director Emeritus. I was even given a name tag to prove it. It was a remarkable night that I’ll never forget. I send big thanks to Diana Watt, Susanna Smart and everybody else who made the event such a big success. Thank you!

Well, I’m glad to have momentarily broken through the wall of my stuck-ness to reach out to you today. “Living in a Body” has given me a great sense of purpose since I started it 56 episodes ago. I trust that there will more to come, but I have to ask for your patience as I navigate these difficult waters. I sure do love the creative process when it’s flowing, but the flow just hasn’t been there lately. I suppose the fallow times are equally as important in the process. Who knows. Maybe the next episode will be titled, “Flow.” I hope so.

All the best to you on this Saturday. It’s May and there’s lots of hope around the corner. If it’s your birthday this month… Happy Birthday! Don’t forget to enjoy living in that body of yours. Take advantage of whatever health you’ve got and breathe it all in. I’ll try to do the same. Sending love. See you next time. Hal