Hi. Welcome. Episode 99! Click PLAY above to hear the intended PODCAST version of this publication with original music! A full transcription is printed below. And don’t miss the photos! (credit:
) Enjoy. ❤️ Hal
In Search of a Place to Lie Down
The holidays are approaching and I'm feeling so excited about my presents. I've never really been a great present guy. I've always been more of a last minute present guy, trying to pull something together at the last minute, wrapping with newsprint or paper bags from the grocery store. I've never been a great presents guy, but this year, I really outdid myself. I'm so excited. (chuckle)
Unfortunately, I can't tell you what it is, but I can't wait for my family to receive their presents… and for a few friends too. I got an idea back in September and I started working on it. That's the time to start working on Christmas presents, or holiday presents, is September. At least, that's what I'm discovering. The present that I'm gonna be giving to my family arrived in the mail today and I'm just smiling.
I'm smiling as I lie here in this bed, my day bed. I transferred from my nighttime bed to my day bed early this morning and I have spent most of the day lying down in this bed. I'm grateful to have two beds. I mean, how many guys have two beds? I have one really nice bed from Dreamcloud company. That's my nighttime bed. And I crawl into that bed at night and I take a melatonin.
I've been crawling in early lately. I love to get into my bed at about eight o'clock and I do a little bit of reading. I read out of the big book a couple pages. I write a gratitude list and maybe I'll listen to a little bit of the book I'm listening to, which is Beartown. I'm loving it and I'm on chapter 11, I think, and I’m really loving it. As you may know, I'm not a big reader, but I'm really enjoying entering into this world of Beartown.
But I love to get into bed early. I’m asleep by nine o'clock, and then I wake up pretty much every night. Sometimes I'll wake up at 1:30. That's a pretty good one. Sometimes I’ll wake up at 11:30. (lol) I hate it when that happens — waking up at 11:30. It feels like it should be the morning, but I can still hear the people partying in downtown Kent. But generally, I wake up around one’oclock or 1:30 and I take a half dose of Zzz quill to get me back to sleep. And then I wake up again around 6 am. This morning, it was more like 5 am, so I meditate for two hours till my broth at seven.
Anyway, you didn't want to know all that… or maybe you did. Just little stuff about my life, lying down — the life of a guy who spends most of his time lying down. And that's the subject for today. It's called “In Search of a Place to Lie Down.”
When I was in college, I was always in search of stairwells and parking garages. I went to Northwestern University and I was not a very good student. I was a history major, but my passion was on the Frisbee field. My passion was in the hacky sack circle. And my passion was riding my bike around Chicago by myself with a harmonica in my pocket, going in search of stairwells and parking garages — places with great acoustics, where I could wail the harmonica, places where the reverb would just blow your mind and fill the whole space. I've really spent my life… a big part of my life has been going in search of great acoustics and I've been blessed in that area. For 25 years, I was the music director at the Unitarian Universalist Church of Kent, which literally has the best acoustics in Northeast Ohio — warm, generous, forgiving, so… just… mmm. It's just a great listening space, one of the greatest places for an acoustic concert anywhere.
Anyway… as I was saying.
My earlier years were always in search of a parking garage or a stairwell. There was this one stairwell in downtown Evanston I used to go to. I'd climb to the third floor and maybe smoke a little… I don't know. I shouldn't mention it. But probably, maybe smoke a little one hitter of marijuana and explore the vastness of sound. I shouldn't have mentioned that in case there are any young people on here, but there you have it. (lol) I haven't smoked marijuana in a long time. So...
Children, young people, listen up. I don't recommend it. Go to God. Go to silence. Go to quiet. Go to reality. Live in reality. Live in relationship. You don't need the dope. You don't need the pot. Of course, you might have to find out on your own, but from a guy who’s been there, I’m just saying. You know.. stay in reality. Feel the feelings. Feel the feelings. Take responsibility for your life. (lol) Feel the feelings.
Anyway… we digress.
But later in my life, after 1991 when I experienced the sudden onset of ME/CFS, chronic fatigue syndrome, the mysterious sudden onset, I became a man who was always in search of a place to lie down. I became a master of finding a place to lie down. And I just want to tell you about a few of those times.
The first one that comes to mind is is I spent a lot of my time working in schools as an artist-in-residence. I travelled around Ohio writing songs and giving mass harmonica lessons. I would arrive at the school and discuss with the teachers about what the residency was gonna look like, but always, at some point, I would find out where my lie down space was going to be. I would express to them that all I need is something the size of a closet. I don't need a couch. I don't need a rug. I don't need a pillow. All I need is an eight-foot by five-foot space to lie down on a linoleum floor. I need a private space somewhere where I can lie down. And seriously, a closet would be just fine.
And that's what I did, many times a day sometimes. I would go to the spot. I would lie flat on my back on the linoleum floor, spread my arms wide and sink into the floor. And I would usually do this for a timed session of 10 or 12 minutes. And it was amazing how my body would just sink. It's like after all this activity of teaching and all this energy I was outputting, I would sink into that floor for 10 minutes. My arms and legs would become numb and it was like I couldn't get close enough to the floor. But 10 minutes later, the little bell would go off, and I would pop up and be ready for action. I’d stand up in front of 200 fourth graders and I’d… be on fire with energy.
I lived with what I now consider a very mild version of MECFS. I lived a very full life, but it was always with me. It was very real and it was always with me. You know how exercise and exertion can feel good to you? Well, it never felt good to me. Any kind of exertion always made me sick.
Here’s a story…
One time, I was working with the Mad River Theater Works. We were traveling around southern Ohio putting on “The Legend of Casey Jones.” It was a high energy production. We'd unload the van and set up the set and when we were all ready to go, I'd lie down behind the set before the show.
But I remember one time we were in a little town in southwestern Ohio, we'd put on two shows a day and this time we were on lunch break. We were right in the downtown, next to the town hall—this beautiful, old Ohio town hall that had a beautiful green space all around this big, Gothic building. And we had had our lunch and we had about a half hour to kill before we had to move on. So I laid myself down on the green space in front of the Town Hall. And I would take the dead man's pose, that was my favorite pose was the dead man's pose — basically shavasana in yoga. I'm flat on my back, arms to my side, head relaxed, eyes closed, total surrender, total surrender into the grass.
A few minutes later, after I settled in, a policeman came up and asked if everything was okay. And I said, “Yes, everything's fine.” And he said, “I'm sorry, but you're gonna have to move on. You're gonna have to leave this space. You've caused a concern to several people in the offices, and they'd like to ask that you not lie down here anymore. And they've asked that you leave.” (One of the more memorable times of finding random places to lie down.) You know, I lied down in so many green spaces all around Ohio.
Another one on a date at Porthouse Theater. You know, at the break everybody goes up and mingles and goes to the bathroom and has a snack, but I went in search of a place to lie down. So I found myself a picnic table and I explained to my date that that's the kind of guy I am. I'm the kind of guy that's always in search of a place to lie down. Fortunately, she was enamored enough that it didn't bother her. In this case, it was at night. It might have been damp ground and probably a little brisk. So a picnic table was a perfect place to lie down.
Another time, I remember being in a Whole Foods store with a friend. I was explaining to her that I'm a master of finding places to lie down. And right there in the store, I found this little nook over next to the produce, and it was just big enough to lie down, so right there in front of the whole world and in front of my friend, that's what I did.
Linoleum floor, tile floor, wood floor, carpet, whatever. I don't want a couch. I don't want a pillow. Just give me a place to lie down. Give me a flat space where I can play dead for 10 minutes. You know, that was one of the feelings I remember most in early onset of ME/CFS, this dead feeling, like the life force is not there. The flow is gone and my battery is on empty. The life force is not there and I need to get close to the ground.
Another good lying down story was… At church, we used to have this upright piano in the front that I would play to accompany the hymns. I would perform the piece, whatever we were playing, and then I would lie down behind the upright piano, just hidden enough that the congregation could only see my feet sticking out by the piano. And I believed that this was my right. You know, I was just taking care of myself. But my minister, the Reverend Melissa Carvill-Ziemer, said, “Hal, you know, some members are concerned about about how it looks for you to be lying down, during the sermon, behind the piano.”
That reminds me of another story of the previous minister, Julie-Ann Silberman-Bunn. She said, “Hal there's some there are some church members that are concerned about you always having holes in your pants, in the butt of your pants.” And I was so defensive about that. It's like, what do you mean!? They're worried about such a surface thing as me having holes in my pants? I was such a rebel. I didn't want to believe in conventional things like not having holes in your pants, and I had a real self righteous attitude about it, like, “come on, people!”
But years later, I learned the joy of having nice pants. I learned the joy of putting on pants that didn't have holes in them. I used to walk into schools with pants that had holes in the butt where you could see my underpants. (lol) I was just not the most… I was not the most together guy. And I'll tell you what kids, a lot of it was that “marijuani” that I was smoking. I have come a long way in my togetherness. But anyway, I stopped lying down. I stopped lying down behind the piano. Sometimes I would lie down on a pew… always in search of a place to lie down.
I think I'll close with this one. One of my greatest lying down memories was… During the pandemic, the whole town shut down. The church shut down. Everything went online and this was a glory moment for me. Suddenly, I had the dream of my life to be able to be at home, create what I want to create. And not only that, but a half mile from my house, I had the best acoustics in town, the UU Church in Kent as my own personal studio and the whole town was silent. There was no traffic. So I would show up there at 11 o'clock at night, set up my sound system, set up a nice mood lighting, set up the recording and record the album that I had been procrastinating for years. Thankfully, it was those late night recording sessions at the church that has kept my livelihood going as I lay here in bed and people keep streaming on Spotify and Apple Music. Thank you, God.
But here are the sacred moments that I remember lying down in between sessions. I turn on the microphone, play a little bit of that melodious khaen and then it was lying down time. And I would sink into that floor. I would let my body sink into that floor in the dead man's pose. It was like I was sinking into the bedrock of the building. I could feel the weight. I could feel the heaviness of my body just wanting to get as close to the floor as possible.
Oh, and that reminds me of one more story I just gotta tell you. I promise this is the last one. I was very ill. Had a gig down in Columbus at the UU Church in Columbus, and I was traveling down there with a trio. I laid down in the back of the van the whole way down and we arrived. And I was shown to my green room, or my dressing space, and I lied down, the whole time thinking, “How in the world am I going to get up and give a concert in this place.” I just had this sick, deep fatigue, deep weakness, deep illness. But when it came time for me to get on that stage, I stood up, walked onto that stage, turned on the microphone, and you know, I gave the best concert ever. Time after time, I would give the best concert ever, coming out of a deep state of illness, all thanks to adrenaline and whatever other chemicals come alive when I was on a stage needing to perform for a whole bunch of people. But I remember many times like that, right before a show, finding a place in the backstage to lie down.
I spent about 33 years in my life searching for places to lie down, and now, pretty much house bound, mostly bed bound. I move from my nighttime bed, I take a wheelchair ride over to my daytime bed and somehow I'm getting used to it. Somehow I'm getting used to the life in bed.
Everyone, that's my story. That's my story about going in search of places to lie down. Give it a try. You know, there's nothing wrong.
That was one other thing. I was always self-conscious of lying down—in case people would see me. If someone walked in at the very last second, I would pretend I was stretching. You know, I'd move my leg up, pretend I was doing some yoga, because this dead man's pose is so intimidating or concerning to people. That went on for years, being afraid of someone catching me lying down. It's a shame — so self-conscious, so afraid that I'll displease someone. That's a whole ‘nother story, though, that's a whole ‘nother episode.
Thanks for listening. It's called Living in a Body. If you've got a body, go live in it. Go live in it. It ain't gonna be here forever. I love you. I care, sending care during this holiday season. I really appreciate you listening. See you next time. Episode 99!
Bye Bye. H
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