Chronic Joy

Living in a Body

Chronic Joy

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Chronic Joy

Episode 18 -- Notes from an "Artist of Play."

Hal Walker

May 21, 2022

Hi. I’m Hal and this is “Living in a Body.” Welcome! To hear me narrate the story with original music, please click the play button. (12 minute listen) Also, please help this community grow by sharing this episode with one friend. Thank you! Hal

Chronic Joy

Sure, I love crying and sure, the life that I once knew has been decimated by the onset of severe chronic illness. But actually, I’m a really fun guy. Even more than crying, I love having fun. I mean heck, I was voted best personality in my high school graduating class. My dad once called me out in frustration. He said, “Son… do you ever stop joking?” I love laughing. I love teasing. I love running and skipping and dancing. I love hacky sack and frisbee and the ancient Chinese game of Go. Once, I even marketed myself to schools all over Ohio as an “Artist of Play.” So when I asked myself to write a piece called “Chronic Joy,” it sort of made sense.

But hold on a minute, Hal. Who are you kidding here? With the extent of illness, disappointment, grief, and regret that’s been living in my body lately, how do you expect me to write a piece called “Chronic Joy.” I mean, c’mon. Is chronic joy even a thing? Does it even exist? I looked up the definition of “chronic” and there was no mention of joy. It’s all about illness and suffering and bad habits. To be honest, I don’t know if I’ve got it in me. But you know what… I’m willing to give it a try. I mean, what do I have to lose? I’m willing to consider that maybe this is all joy and I’ve just been labeling it wrong. Alright here we go…

Hi. My name’s Hal and I’m suffering from chronic joy. It never stops. Everyday I wake up to it and when I go to bed, it’s still there. All day long it’s running through my whole body. Every time I ride that lift up the stairs, there it is — joy. Every time I hop on that wheelchair or crawl under the covers, it’s inside of me. It’s like my brain is in a constant state of blooming flowers. Sometimes the joy is so severe that I lie in my bed and I weep and then I laugh and then I weep some more and then I laugh some more. By the way, if you ever need a little extra joy, come take some of mine. I’ve got a supply that’s more than enough for a lifetime. It’s joy, it’s chronic and I’m happy to share it with you. I’m living with chronic joy.

When I was directing the tone chime choir at the UU Church of Kent. I wrote a piece of music called “Chronic Joy.” It’s playing in the background right now. The word chronic has been in my life for many, many years. In 1992, I woke up one day and I entered the world of chronic illness. For many years, I tried to medicate the variety of discomforts with all kinds of who knows what, but nothing really ever worked for me. On the other side of immediate relief, I usually found various forms of craving, dissatisfaction and loneliness. It turns out that I had a big empty hole inside of me that only joy could fill. I wrote the piece of music, “Chronic Joy” to remind myself that one moment at a time, joy is always an option.

In 2014, I was going through one of my painful break-ups when a friend gave me some very useful wisdom on the telephone. He said, “Just remember this. There is no problem. The only problem is your thinking.” This has stuck with me for years. To this day, I want to live my life by these words. There is no problem. The only problem is my thinking. That same friend would always suggest that the solution is to stop thinking and to smile — not just a little smile on the outside but a big smile — on the inside. He suggested that the only proper use of thinking is gratitude. For a self-centered, fearful guy with chronic illness like me, that’s not easy, but I think my friend is right.

Two weeks ago, I was writhing in my bed from weakness and illness. After having survived months of severe ME/CFS, I was once again using a timer to get through the day 12 minutes at a time. In agony, I was asking friends and relatives on the phone to encourage me to survive just the next 12 minutes. The discomfort was unrelenting and my brain kept telling me that it was gonna be like this forever.

It turns out that it didn’t last forever. Two weeks later, for whatever reason, I’ve been strong enough to clean my room, to do some work outside and to create some music. I even rode my scooter to Ace Hardware and then I raked and planted my garden. For whatever reason, the last few days have been the best days in months. Compared to the illness of last Fall, I’ve got to remember that these better days are a bit of a miracle. Thank goodness for better days.

Unfortunately though, there’s one thing I know for sure. ME/CFS is ruthless and unpredictable. It doesn’t care what my plans are. I’m grateful that this week I got to fulfill some of my plans. I planted lettuce, beets, sunflowers, chard and tomatoes and I enjoyed it. I don’t know what tomorrow’s gonna bring as a result of what I did today, but I think I’ll choose chronic joy. Wanna join me? Together, let’s seek out the glimmers of joy in this day.

Earlier this year, I came up with an appropriate nickname for ME/CFS. If you’ve been listening to this podcast, you’ve probably heard it before. You probably know how proud I am that I came up with it. I think it accurately illustrates the illness and it actually makes the name much easier to say. I encourage you to give it a try — “Myalgic-ensephalo-fuckin-myelitis.” (Also known as “chronic-fuck you-fatigue syndrome.”) As you can probably tell, this moniker points to the hatred I feel toward this illness. I’m angry for what ME/CFS has stolen from me in the last year. It’s taken away so many of the things that I love.

But, to be honest, I’m not sure that this anger is useful in my overall healing process. In my 12-step program, the Meditation for the Day on May 12th speaks directly to this issue:

“Turn away all thoughts of doubt and fear and resentment. Never tolerate them if you can help it. Bar the windows and doors of your mind against them, as you would bar your home against a thief who would steal in to take away your treasures. What greater treasures can you have than faith and courage and love? All these are stolen from you by doubt and fear and resentment. Face each day with peace and hope.” - Twenty-Four Hours A Day

This is the meditation book that I read every morning

May 12 was international ME/CFS Awareness Day. The whole month of May is ME/CFS awareness month. To recognize the month, I’m gonna offer another alternative for the name. Considering how much suffering this illness causes, my alternative is a bit edgy. But I’m interested in trying it on for myself and saying it out loud a few times. I invite you to choose whichever nickname you prefer. Try this one: “Myalgic-ensephalo-joyful-myelitis” (also known as “chronic-full of joy-fatigue syndrome.”)

That last one makes me laugh out loud — “full of joy fatigue syndrome.” Now that’s some quality juxtaposition there. There’s something about these names that reminds me that this is my one life and that I get to choose how I think about it. I can either say “Fuck You” or “Full of Joy.” Chronic joy. You wanna join me? We can say, “Thank goodness for all the gifts that (this particular unfortunate reality) has bestowed upon me.”

To be honest, I didn’t feel like joining in on ME/CFS Awareness Month. I’m so done with thinking about and talking about and living with this illness. But I read several Facebook posts from friends living with the disease and I realized that I need to do my part. The extent of suffering that I hear about from people that I care about is unbelievable. The lack of funding and the ignorance of the medical establishment is sickening. I have first hand experience of how at times ME/CFS has taken over my brain and has made me long to die. I have a friend that refers to the “endless pit of suffering of ME/CFS” and I know what’s she’s talking about. I sure hope that ME/CFS Awareness Month will call attention to the #millionsmissing. With all this suffering, somebody’s gotta do something about this.

Today’s a great day to gain some #MayMomentum

I encourage you to donate today to Open Medicine Foundation for #MayMomentum. Let’s do our part to build awareness and accelerate research to end #MECFS.

I’ll be taking the week off next week. Hallie and I will be traveling to Chicago for the Coldplay concert. I can’t wait to tell you all about it. May your day be a blessing. May it be filled with health, love and peace. Whether it’s actually a thing or not, may you always suffer from chronic joy. Thank you for being here. I appreciate you. ❤️ Hal