Hi. This week I’m celebrating two milestones for this publication: 20 episodes and 500 subscribers. Yay! If you look forward to reading “Living in a Body” every week, I hope you’ll consider becoming a paid subscriber.
Due to my health, I’ll be taking some weeks off this summer, but hopefully there are more episodes in there somewhere. Thank you!!
The Legend of Casey Jones
At some point in May, I changed my Instagram bio from “Living with Severe ME/CFS” to just “Living with ME/CFS.” Pleased with what seemed like it could my “new normal,” I had big hopes for a summer with some freedom from the bed. In a conversation on the phone, my friend Jerry brought up the subject of “pacing” and I rolled my eyes a little bit. “I’ve been living with this thing for 30 years. Nobody needs to tell me about pacing.” And then Saturday, May 20th happened.
In the early 2000’s, I got to play the role of Casey Jones in Mad River Theatre Works’ touring production of “The Legend of Casey Jones” by Jeff Hooper with music by Bob Lucas. The play tells a story of the relationship between Casey Jones, the infamous railroad engineer and his friend Wallace Saunders, an African American railroad worker. It was an appropriate role for me. Casey was a guy that was never quite satisfied. He always wanted just a little bit more speed. He burned the candle at both ends and Casey ended up dying in the fire. Casey Jones was killed in a wreck in Vaughan, Mississippi when the train he was driving was going just a little bit too fast.
At the time of this acting job, I was living with a much milder version of ME/CFS, but I was always looking for a place to lie down. We were touring the show four days a week with a home base in West Liberty, Ohio. Over the long weekend, I’d come home to Kent to be a dad, the music director of the UU church and a director of the Summit Children’s Choir. Every week, after Monday night’s choir rehearsal, I would say another painful goodbye to Hallie and then I’d go off to live the role of Casey Jones — burning the candle at both ends. Fueled by coffee, a muffin and a couple hits of marijuana at the Lodi truck stop, I would cruise the late night three hour drive to West Liberty. Usually, at some point on the road, I’d make a solemn vow, “I can’t keep living like this.” The next morning though, the show had to go on, so the cycle would start all over again.
The following dialogue between Casey and Wallace tells my story quite nicely:
Wallace: The boys tell me you just worked a double shift and your name is on the schedule for eight in the morning. Don’t you ever sleep?
Casey: Not if I can help it, I’ve got too much work to do.
Wallace: What you workin on now?
Casey: Aw nothin’. I’m almost done.
Wallace: Ain’t that the safety valve from off a boiler? …That’s what it is alright. You’ve got a brand new engine. You shouldn’t be having no trouble all ready.
Casey: Wallace I‘m just making a few adjustments.
Wallace: Turn that screw any tighter and that boiler’s gonna blow before that safety valve do you any good.
Casey: I know what I’m doing.
Wallace: So Do I! and it ain’t right! You best turn that screw back where it belongs.
Casey: Wallace, Everybody knows! Baldwin double bolts their boilers. They can handle the extra pressure. I’m just giving myself a little advantage — twenty more pounds of steam. That’s all I want.
Wallace: You know what you got in your hands Casey — your life.
Casey: I’ll keep an eye on the pressure gauge. Heck, I probably won’t even use that extra steam.
Wallace: Then why do it?
Casey: How do you do it Wallace? It seems like no matter what happens, you’re always looking up.
Wallace: Aw it ain’t like that - you know it.
Casey: Truth is, I wish I could be more like you. I wish I could take what I have and just be satisfied. But, I’m not.
Wallace: One more fast run or 100 more fast runs… how’s that gonna make any difference?
Casey: I don’t know. All I know is I wanna be in the cab flying down the track like it’s got no end. It’s the one time I can shake the feeling there’s someone looking over my shoulder.
Wallace: One day Casey, the tracks gonna run out.
Casey: You know, I can take care of myself.
Wallace: I hope you’re ready!
Wallace: I was standing in front of the canton baptist church when I first got the word. A little boy came up to me and asked me if I’d heard about the train wreck at Vaughan Mississippi. Casey Jones was dead.
They say he had worked a double shift and he was trying to make up for lost time when he ran into the back of a stalled frieght on the tracks. Of course, there was an investigation and they found the doctored safety valve. They said the wreck was Casey’s fault. Some folks even say that Casey got what he deserved. they didn’t know him like a did. He didn’t mean to hurt nobody. Casey had a good heart.”
- Jeff Hooper, Mad River Theatre Works
On Saturday May 20th, I rode my scooter down to the Haymaker Farmer’s Market. My friends Rick and Renee welcomed me with open arms. They were so excited to see me upright, out of bed and riding my scooter. I carried a portable stool so I could sit down whenever I needed a rest. At the market, I bought a parsley plant, a couple cilantro plants and some good hard cheese.
One of my favorite vendors is a guy who sells fruit plants, shrubs and trees. That Saturday morning, I enjoyed imagining where in my yard one of those trees might fit. With my health turning around the way it was, planting a tree seemed like a hopeful gesture. When I got home, I took a good look at the spot where the pear tree used to be and I realized that it was time to take some action, but it was approaching 12:45. The farmers market would be closing at 1:00. I had just enough time to hop back on my scooter, return to the market and pick out a tree. A Fringe Tree caught my attention first. At that time in May, it was covered with beautiful drooping clusters of fringe-like, fragrant creamy white blooms. I paid the guy with Venmo and then together we tried to figure out how I was gonna get it home on my scooter. In the end, he suggested that he’d wait for me while I rushed home to get my car, so that’s what I did.
After lunch, I tilled the ground, dug the hole, planted the tree, watered the tree, watered the garden and created a whole series of Instagram stories. That afternoon, I set up my living room to record a song and went grocery shopping on my scooter. That evening, I had the gaul to pick up one side of the baby grand piano just to get a better angle for the camera. That night, I sat in the back room and found an awesome new jam on the khaen. (By the way, the next day, I posted a video from that khaen session on TikTok that now has 3.1M views). Saturday was a good day. You might say I had a little bit of Casey Jones in me — flying down the track like it’s got no end.
On Sunday, I woke up in a crash. The first sign was that my ears were ringing louder than usual. As you may have read in “I Love Crying,” that’s not a good sign. My legs were weak, my arms were weak, my breathing was labored and I felt sick all over. The CDC explains it like this: “ME/CFS may get worse after people with the illness try to do as much as they want or need to do. This symptom is called post-exertional malaise (PEM).” Post-exertional malaise is the punishing reality of ME/CFS. It’s the aspect of the illness that makes it easy for me to blame myself for worsening symptoms — as if this is somehow all my fault. I assure you. Under challenging circumstances, I’m just doing the best I can over here. After a couple weeks of some relief, with no idea how long this crash was gonna last, I was once again writhing in my bed with illness — regretting what I had done to cause this.
As you may know, on that next Friday, I was supposed to travel to Chicago to meet Coldplay. I spent the entire week trying to decide whether or not I should cancel the trip. On Wednesday, I let my hosts know that it was unlikely that I would be traveling to Chicago, but on Thursday I decided that I just couldn’t pass it up. With the promise of chauffeurs, greeters and a wheelchair every step of the way, I decided that this was my opportunity to go on a trip while practicing minimal exertion. I decided that I would float through the weekend while constantly asking for help. To the extent that it was possible, that’s pretty much what I did.
But you should have seen me in the room jamming with Chris Martin. For about 20 minutes, I was a musician on fire. There I was doing the thing that I love to do the most. I was connecting with another musician through music. When that musician is someone like Chris Martin, I assure you, the adrenaline will kick in just long enough for the jam to happen. In that moment of connection, I put the reality of the potential consequences on the back burner. With this damn illness, I’ve gotten used to paying the price later.
It’s been a rough couple weeks. I’ve been paying the price. To be honest, I’m scared. In the past, to some extent, I’ve always come back from crashes to reach some more manageable state of being, but there’s no guarantee. ME/CFS is brutal and doesn’t really care what I want. Currently, my body feels stuck in a pretty awful state of new normal. There’s been little change in the last 14 days. I’m living 15 minutes at a time. I rest for 15, then I write my Substack for 15. I rest for 15, then I make a call for 15. I rest for 15, then I eat for 15. I rest for 15 and then I cry for 15. Right now, I’m crying.
Thank you so much for being here. Having these stories to write every week helps give me some courage and some purpose to face the day living in bed. Thank you for all your feedback and thank you in advance for sharing today’s post with one friend. I’m asking this for two reasons. One is to satisfy my insatiable need for more subscribers and two is help spread awareness of the #millionsmissing who don’t even have the strength to write a single sentence or speak a sentence to get the world’s attention.
Thank you. Have a good Saturday. I appreciate you.
Both: Put your head out the window. See my drivers roll.
Wallace: 686… they made up all but 5 minutes.
Casey: Alright… looks like we’re gonna pull in right on time
Wallace: 690
Casey: Almost Home
Wallace: People said Casey couldn’t run, but I’ll tell you what Casey done.
Casey: We left Memphis at a quarter to 9. We got to Vaughan Mississippi right on time.
Casey: Got within a mile of the place,
Wallace: a big headlight stared him right in the face. Shout to the firemen,
Casey: Jump for your life. Give my love to my children, say goodbye to my wife.
Wallace: Casey said just before he died,
Casey: “there’s still more railroad that I’d like to ride”
Wallace: The good lord whispered, this’ll never be.
Both: The Illinois Central be the death of me.
Wallace: The engine plowed into the back of a boxcar that was stopped off to the side of the tracks.
Casey: The accident report’s still around. You can look it up if you want to.
Wallace: The fact is, nobody much cares about what really happened that night. What they remember is that little song I wrote. Casey Jones was a friend of mine. And I want folks to remember him for the good things he done rather than all the rest. And I don’t think there’s a one of us here that wouldn’t want the same.
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The Legend of Casey Jones