Bateman Horne Center

Emma in the Dark

The Chionanthus Virginicus in my backyard is in full bloom this week. It’s called a fringe tree. I planted it a few years ago and it keeps blooming every year. I’m glad that I planted it when I did. It just keeps getting more beautiful. I’m glad I noticed it at the farmer’s market and paid for it, and lugged it home on my scooter, and dug a hole, and put it in the hole, and watered it, and fertilized it. Now it’s a real tree on its own, doing its thing — every year.

The tree is covered with these beautiful white fringe flowers. I rolled my wheelchair out there this afternoon just to get a smell. It was worth it. I love that smell. It’s real fruity and fresh and you can smell it from several feet away.

I wish I could send a picture of it to my girlfriend Emma. She loves trees and she loves flowers. She loves the fresh air and loves the outdoors. But she lives with severe ME/CFS and for the last month she’s experiencing complete intolerance of all light. She’s living in a blacked-out room with blackout curtains and an eye mask on. Even opening her eyes in a darkened room is too much light for her system. It’s a terrifying and very difficult situation — with no help from the medical professionals.

From afar, through voice memos and phone conversations, I’ve witnessed the terror of this particular rendition of this illness. It’s all part of ME/CFS, the mystery of this multi-system illness that devastates lives with no known cause and no known treatment.

But Emma is facing it heroically. She’s been through so much with this illness and I have a lot of respect for the way she faces it — with honesty, grace, and courage. But let me tell you, she’s going through the wringer right now. Please send your most loving and caring wishes and prayers to beautiful Emma. Let’s make sure she knows she’s not alone.

Lanterns in the Dark

Spiritual dispatches from a housebound life. I write about awakening through illness, and the unexpected grace of things falling apart.

By Emma Kitchen

The full bloom of the fringe tree just happens to coincide with ME/CFS Awareness Week. May 9 through May 15 is the week that all the people with ME/CFS pull together whatever energy they’ve got and raise up their hands and say, “Look at us! We’re over here! We exist.” The millions missing call out from their darkened, silenced, hidden bedrooms, asking, pleading for help. “Who’s gonna do something about this? Please, somebody pay attention.” Somebody, take note. Take note of all the lack of care, all the lack of research, the lack of treatment, the lack of even diagnosis. All the people living in the dark. There are millions of people suffering without the care they need.

And here’s my little voice spreading the word “myalgic encephalo-fuckin’-myelitis,” also known as chronic-fuck you-fatigue syndrome. (Sorry about that, but it feels so good to say it out loud that way. It expresses my true feelings.) Myalgic encephalomyelitis, also known as chronic fatigue syndrome — poorly named, poorly understood, barely diagnosable, total mystery. Millions are missing. Including my dear friend Emma Kitchen.

Emma and I met here on Substack almost two years ago, and we’ve been in touch over WhatsApp almost every day since. We’ve hit it off real well, it’s been a real blessing to know her. We’ve never met in person, but we’ve been through a lot together in the last two years. And the story continues as she goes through this very frightening time, completely intolerant to light.

I’ve received a couple personal heartbreaking voice memos from Emma that I felt were worthy of being shared publicly. Emma agreed and I’m going to share them with you today in hopes of raising awareness to the reality and the difficulty of living with ME/CFS. Here she is, my dear friend, Emma Kitchen, going through a dark night, waiting for the soul to break through, waiting for the light on the other side, living through the terrifying reality of ME/CFS.

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Hi Hal, I’m so scared today. Last night, just loads of fear and stuff came up. Because I just feel like it’s getting worse. My mum having to come to the door, she must have heard me sniffling or something, crying quietly, and she just came in and sat with me. She wants to get the doctor out to come and see me for a home visit to see if we can get diazapam out of them… just to, I suppose, help on the days where I’m panicked, you know, some days I’m calm. But there are days when it’s just panic.

I’m thinking about surrender. It sounds so nice — surrender, but I forget how terrifying surrender actually can be. What it’s actually asking for, because it’s asking to say “yes” to the things you’re most scared of. And I actually haven’t particularly been overly scared of M.E. flaring up and taking me back to that wholly bed ridden place, because I could look out the windows and I know that I can find peace and expansiveness in the sky, and I know that I’ve had deep moments of spiritual revelation in that space, and I know that I could do it. But having sight and sound taken as well — just existing in this void. I am afraid of that. I’m afraid, and it’s almost like this vulnerability of being a baby, just being wholly dependent on those around you.

Okay, I surrender. That’s what surrender is, is it?. Saying, “I’m terrified of this happening. Okay? Do it, then. Do it if you must.” But I am not surrendered to that void. And I don’t like visiting.

I feel so afraid, I just want to vomit. I don’t think I’ve been more afraid my entire life than what I am at the moment. Anyway, Love. I hope you are having a slightly easier time of it... or a much easier time of it.

My mom says she’s keen to get me over into the bungalow. I’m not sure if that’s gonna make me more scared or less. Right now, I just feel like too scared to move a muscle. It’s that willingness to flow with the river. I know that my suffering is coming because I’m afraid and I don’t want this.

FUCK, Hal. I am fucking scared. I am really fucking scared.

And I said that to my mum yesterday, and I completely like just cried in front of my mom. She said that she loved me and she was sorry that she’s not always loving towards me, that sometimes it’s shoddy, but she still loves me. That was... I’ve never heard that from her before.

She said, I’m not alone, and she’ll do whatever she can, and she’s with me in this. She was like, “Oh, I think it’s time that we called for some help from Jesus.” I was like, “What the fuck is Jesus gonna do? What’s anybody gonna do?” That’s the whole fucking point. There is nobody is there coming to rescue me? All that’s gonna happen is that this is just about me and acceptance, me and the void. There is no man on a cloud that’s gonna wave a magic wand. There is no amount of begging a God to save me. Anyway - I’ll try to speak to you later. I’m premenstrual. It’s a bad fucking combination.

The Next Day

Morning, Hal, I’ve got the bad fear again. Last night when I got off the phone from you, not long after, I took diazapam. I felt really disorientated, and I could hear, kept hearing sounds like the central heatings buzzing, or the water filters buzzing and these things weren’t on, but I could hear them like they were on. And in the darkness, when I take my eye mask off, the room starts being illuminated in weird ways because of the sensory deprivation I expect. And I just grabbed herbs and put them in a cup and drank them. And I think it must have been a bit of a wild brew, but I really felt like I was about to go mad and I really freaked out. So I took diazapam. I’ve only got a couple left.

I can sit with terror to a point then I think terror really asks for somebody else’s hand to hold yours. And at four o’clock in the morning, there’s no hand to hold and I feel like - you know the terror of being too sick to be able to speak and say, “Can you hold my hand?” Too afraid of the noise that person will make coming into your room, and if that’s gonna make a crash happen. And I feel like, like there’s this sense of failure for taking diazapam… like I should be sitting with my fear and Holding my fear. And you know this is a spiritual practice, and I do it. I sit with fear all the time. I watch it come. I stay with it. But last night was just really terrifying, and I woke up this morning. It’s like, Diazepam helped me just go to sleep. But I woke up with the terror still in my heart this morning. It’s what I’m sitting with now.

My mom came in to bring me some breakfast and I had to tell her that the ordinary signs she was making in the kitchen yesterday were making me crash. She’s really scared. She’s eager for a doctor to come and see me. She’s gonna try to make that happen Monday, but I don’t know what she thinks they’re gonna do. Anyway - I think I’m just saying yes for her relief actually.

You know, Hal, this morning, it’s like, I know the practice, I feel like I am on a razor’s edge, and it’s just this moment, just this moment, just this moment. And fear comes. And these fear narratives come about what the future is going to hold, and what about this, and what if that, and what if the other, and how will you go with this? And and I know that… I know that it’s just a state of now that surrender is only ever asking for now, this moment, this sensation that I can hold it, that I’m equal to it. What I’m not equal to is the storylines this fear is telling me. So I just keep trying to come back to the raw feeling of fear in my body. Where do I feel it? How does it feel? How is it moving? Where is the sickness? What’s its movement in my body? Where? Where can I sense it? Can I accept it in this moment? Yes, I can.

The Course in Miracles has got one of its lessons saying, you know, I place future in the hands of God. So every time I’m getting a fear thought, I’m just saying that. I just find my way back to the spaciousness. And that’s the tricky thing, when you’ve got fear so fierce, spaciousness is obscured, and all that’s left is to just be very present with fear. And as soon as I feel this need to get away from the fear, it increases fear. It increases the body’s response to fear. More adrenaline gets pumped out. So I have to get closer to fear. I love you, Hal

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In the post below, I give a brief update and reflect on my mantra of the current season — “Slow Down.” I recognize that Spring is typically more of a time of ramping up than slowing down, but I hope you’ll consider sharing an area in your life where you have successfully slowed down. Tell us. Have you reaped the benefits? Or… Share some area of your life where you’d like to try slowing down this Spring. Join me in the life changing practice of going slower and share the journey with us.

It may be a new feature to some of you, but I hope you’ll join the chat conversation on Substack by clicking below. If that’s too fast-paced for you, leave a comment as usual.

Now, Even Slower

In hopes of easing the twisted, crashy feeling in my gut, I lie belly down on the bed. My face is smashed to the pillow and turned to the right. My knee is bent and pulled up to the side. It’s quiet in my second floor bedroom on South Chestnut Street but I can hear the cars passing by outside. I’ve heard that it’s sunny and Springtime in Ohio this afternoon. I’m lying here in the dark.

The phrases I choose to say over and over again in my head change from season to season. Since my 60th birthday a few weeks ago, “Slow down” has been the mantra. Under my breath, I whisper, “Slow down, Hal.” Then I ponder what it means , I relax my breath, I smile and I follow it up with, “now, even slower.”

It’s hard to believe that a guy in my circumstances could go much slower, but I can. I’m very aware of an old pattern of urgency in my inner world that ME/CFS is calling me to address. There’s this little Hal voice inside that says, “whatever it is, I want it now.” These days, I’m interested in slowing down on a cellular level. I’m not really sure what that means but I have a feeling it’s one of the keys to my survival of this illness.

My 60’s have gotten off to a rough start. After about 8 months of milder symptoms, a series of “crashes” have left me in another deep state of illness. Since December, I’ve gone from mostly housebound to mostly bed bound. It’s been brutal. I’ve spent these first couple weeks of Spring behind blackout curtains and an eye mask seeking relief from the neurological sensitivities of this baffling illness. My full-time job has been avoiding any of the seemingly innocent activities that could possibly cause further crashes. That includes pretty much everything. My business these days is resting and digesting.

My English girlfriend , who also has this condition, speaks wisely of deep rest. Especially after a relapse, she says how crucial it is to let go of all “doing.” Only after settling in to a new baseline do we bring back small amounts of doing over time. Emma’s experience has been that if we use this precious time to dwell in the quiet spaciousness of the present moment, illness can be a doorway to something profoundly beautiful. I believe whole heartedly in her approach, but I follow it imperfectly. You know how much I love a project. I love the creative process. I love making things. I love doing... possibly at times to my own detriment.

Thankfully or not, I’ve gotten lots of practice in this chronic illness way of life. I keep being forced to adjust to what is. I’m learning to take my luck as it comes and after some terrified moans and groans, I eventually fit myself to it. It’s fairly remarkable how quickly I’ve adapted to this recent reality. Time and time again, the illness asks me to slow down. Over and over, I find out that I shoulda’ slowed down much sooner.

I like the “if only I knew then what I know now” game. Just for fun, I’ve been imagining what would have happened if I had taken seriously the concept of slowing down back in 1991 when ME/CFS first came into my life. Maybe I would’ve transcended by this time. I’d probably be a meditation guru... or a super humble teacher of gentle yoga. Instead, I’m bed bound, I have a burning passion for productivity and I’ve got three and a half million followers on TikTok — but not enough energy to record a video.

When I was in the worst of it a couple weeks ago, upon awakening, the first thought that crossed my mind was, “I’m fucked.” The feeling that goes with that thought reminds me of the time I got swept into the ocean by a rogue wave in Kauai. On one side of me were turbulent waves crashing against sharp lava rocks. On the other side was the infinite gray ocean that reached out as far as my eyes could see. Beneath me was an undercurrent that felt like a rushing river pulling me out to my death. I remember the baffling depths of terror that I felt as I realized how deeply fucked I was. Miraculously, in that situation, the right wave came along at the right time and helped push me to safety. The guy that had been standing right next to me didn’t have such luck. His daughter had to attend her dad’s memorial service there on the ocean with the seals and the wind. I, on the other hand, got this bonus life that I’m still living today. Maybe I’m not so fucked after all.

The truth is, in so many ways, I’m blessed. But there’s no denying it. ME/CFS is one of the rougher ones. I don’t wish it upon anyone. In those earliest hours of the morning with intense symptoms overwhelming my nervous system, I can pretty easily convince myself that it’s always gonna be like this and it’s probably only gonna get worse. Instead, I’m grateful to say that I’ve seen small signs of improvement over the last few days.

The more days that I get to live in this body, the more I learn the importance of changing the “I’m fucked” thought to something more productive. So I turn to one of a handful of my favorites -- thoughts like “Yes” or “Thank you, God” or “This too shall pass” or “This moment” or no thought at all. During this recent downturn, The one I’ve gone to most is “Slow Down.” Hey, that reminds me of a song. Remember this one? Sing it with me.

Having raced through much of my life with self-important busy-ness and an inner drive of urgency, “Slow down” points me in the direction of the truth. It brings me back to the moment. I slow down my breathing. I slow down my thinking. I imagine my heartbeat slowing. I picture all the cells in my body relaxing. Then I smile and I say, “now, even slower.”

I like slowing down cause it requires patience and I’ve got little patience. I’m certain that patience is a good things to have so I get to spend these long days in bed practicing. I take a bite of food and then I slow down. I practice patience. I knit a single round of a sock and then I rest. I practice patience. I write a few sentences of my next Substack and then I pause. I practice patience. I lie belly down with my face smashed to the pillow and my leg up to the side and I think, “Slow down, Hal” I breathe slower. I think slower. I smile and then I whisper, “now even slower... even slower.” I practice patience. I practice trust. I practice surrender.

In Letters to a Young Poet, Rilke says it so beautifully. He writes:

“Being an artist means, not reckoning and counting, but ripening like the tree which does not force its sap and stands confident in the storms of spring without the fear that after them may come no summer. It does come. But it comes only to the patient, who are there as though eternity lay before them, so unconcernedly still and wide. I learn it daily, learn it with pain to which I am grateful: patience is everything.”

Thanks so much for reading. It’s a been a joy producing this publication and I’m so glad that you’re a part of it. Enjoy living in that body of yours. See you next time. H

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Hi. This Saturday, March 7th at 2:00 pm EST, I’m hosting a Zoom gathering to celebrate my March 5th birthday when I’ll be turning 60. You’re invited. Find details and a Zoom link below.

Please click the PLAY button above to hear the intended PODCAST version of this episode. Find the complete transcript below. Thanks for being here! ❤️ Hal

60th Birthday Zoom

When: March 7, 2-3:30 pm EST. (notice time change from previous announcement)
Where: Zoom Meeting: 870 0553 2132
What: Open House followed by playing, “Friends are Human - a game that brings you closer to your friends.”
Note: Stay for 5 minutes or stay the whole time.

Sugar Mountain

Guess what!? I’m turning 60 next week… and you’re invited. I’ll tell you about that later, but for now, I just want to settle into the reality of getting older.

It was 40 years ago that I turned 20. That was 1986. At the time, I was loving the Neil Young song, “Sugar Mountain.” The first time I ever heard Neil Young something changed in me. I’d grown up taking piano lessons and listening to Casey Kasem play top 40 music on the radio. But I went away to college and heard the sound of Neil Young playing the guitar and the harmonica at the same time and I thought, “That’s what I want to do.” I was blown away. I heard him play “Sugar Mountain” and that became my anthem for a little while. “You can’t be 20 on Sugar Mountain, though you’re thinking that you’re leaving there too soon.” It goes…

I loved that song so much. It was my coming of age song. I was growing up, I left home for college, I was growing my hair long and I was coming into my own. The reality was that I was a history major at Northwestern and I didn’t want to be there. “Sugar Mountain” helped me tap into the kind of life that I wanted — a free life on the mountain with a guitar and a harmonica.

I wasn’t really cut out for academics. The liberal arts education was what my dad recommended, but I see now I was meant for being out on the Frisbee field, creating with my hands, crafting and making — playing music. I wasn’t cut out for reading history books in the library. I wanted to be free. I didn’t want to be locked to a desk with chains . I wanted to wear my hair long and have a girlfriend and wear hippie clothes… and be free.

Lately, I’ve been reading a diary that I wrote back in 1985, 41 years ago. It’s been a fascinating read, a glimpse into my 19 year old brain. I was so insecure and so critical of others — desperate for a girlfriend. My big aspiration was to live among the homeless. I just wanted to roam the streets of Chicago. I wanted to be free. I’m gonna read you a little bit of the diary. Here’s an excerpt.

“The last couple days have been incredible. Right now, I’m rather confused and I have a kind of sick feeling and I can’t wait to talk to dad to get his opinions. It all started by reading ‘Illusions’ by Richard Bach.

Last night, I was to the point of crying, saying, ‘I have to get out of here. I have to get on my bike and ride.’ I spent most of the crying time thinking what I would tell dad to convince him how confused and unhappy I am. I have friends and all, but I’m 18 years old and I will soon be 80 years old, and I have to do what I really want. At this point, what I really want is to learn how to ride my bike and throw a Frisbee.

I was to the point last night where I honestly didn’t think I would be here next quarter. As I look back, it sounds like a big excuse to not do homework. But it’s still true today. I don’t know what I should do. I think about taking all those shit requirements.

This morning, I was convinced that I would transfer into the music department and really learn how to play the piano. That would be cool — riding a bike around the world, playing the piano.

Guess what? This is the next day, and I’m gonna drop out of school. Actually, I have to talk to dad first. But as of now, I’m a member of American Youth Hostels. I’m gonna dress real warm and head south, hitting all the hostels, reading a lot, practicing Hacky Sack, riding my bike a lot. You know… I’ll find a place to stay, then unpack, then train on my bike. I was studying Russian last night, and then I stopped and read “Illusions” and I convinced myself.

I’m thinking that maybe I’ll find out the standards for transferring to the music school, but I’d still have to go through all this shit of being nervous about finishing things. If there were no grades, people would study when they want to study. Some people wouldn’t study, but they would be happy. It’s impossible to not care about grades when there are grades. I can’t seem to have fun without thinking I should be doing something else. If I took a bike trip, I could do things like go into small town high schools and pick up an ultimate game. I could talk to people at hostels and I could sit back and read and write letters, making people think that I’m a great guy. I have to do it.

Tonight was calmer than two nights ago. That night, I almost got sick and I cried and screamed, “I have to get out of here.” I’m gonna ask Harold Walker III of the future a few questions now.

One — Did you take a break from school and take a bike trip? Two — Are you over the confusion of what to do with life yet? Three — Are you well educated? (not necessarily academically.) Four — Did you do the right thing? Five — Have you found something to really love and dedicate yourself to?

I have to get out of here. Today and yesterday, I convinced myself that I would transfer to theater, but tonight, as we prepare for the coffee house, I’ve discovered that I’m not an actor. My body is so big and uncoordinated. Shit! I can’t do anything. There’s nothing in my past worth remembering and unless I get out of here, I can’t foresee anything in the future. I’m so scared.

What should I do? Right now there’s nothing that I love to do but play ultimate… and I love Barb so bad, but I have nothing to say to her. Whenever we see each other, we part so abruptly without saying “goodbye.” On that bad night when I had to get out of here a week ago, I wanted so badly to talk to her and cry to her and have her comfort me. I got there and she wasn’t home and I went over to J.K. Sweets and there she was with her boyfriend. She looked so cold, and there was no way I could have said anything to her.

I can’t wait to take off on my bike, taking my time, having no rush to get anywhere. I’ll stop at Ohio Wesleyan and Ohio State and Miami U. And I’ll move on South and possibly stop by Granny and Grandad’s in Birmingham. But they would probably die knowing that I had dropped out of school and had long hair.

Oh shit, I was just humiliated….”

Anyway, it goes on and on for many, many pages. 1985.

Well, Hal Walker of the past. It’s been a lot of life since then — 40 years as a matter of fact. You didn’t drop out of school, but you did go on the bike trips. You had a few girlfriends, you got married, you had a daughter named Hallie and you got divorced. And then two weeks ago, you started knitting. You’ve entered your knitting phase. Turning 60. Gettin’ started on knitting.

It’s been a good one. It’s been a good 40 years. I can’t wait for the next 40. I’m turning 60 next week. That gives me 40 more years to 100. I haven’t been listening to any music lately, so I don’t have a “coming of age song” for 60. I guess for me, it’s more of a coming of age activity — knitting. Yep… learning to knit.

My English girlfriend, Emma started knitting socks, and I said, “I want to learn to knit socks.” So we’re knitting socks together. I jumped right in and bought some yarn and bought some circular needles. I’m really enjoying it. I can’t believe it took me so long to get into knitting. I guess I had to slow down first to the pace of knitting. Of course, you know the way I roll. I’ve started with three knitting projects. I’m doing two pairs of socks and a hat. You know, my mom’s an artist and a knitter, and I realize, with all the art and knitting that I’ve been doing lately, she rubbed off on me more than I ever thought.

Hal of 1985… Yep, you found your thing — Islamic geometric patterns and knitting. And by the way, you got free. Yeah, you’re free, man. It took a while, but you got free. Just in time.

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Birthday Zoom - You’re Invited.

So anyway, next week’s my birthday, and you’re invited. Here’s what I’m gonna do. Next Saturday afternoon, March 7, at 2:00 pm Eastern time, I’m hosting a Zoom and you’re invited. For the first half hour, it’s just an “Open House.” Stop in for 5 or 10 minutes just to say “Hi” and connect on Zoom with me and whoever shows up.

Then at 2:30 Eastern Time, for those of you that have the time to stay and want a deeper, more intimate connection, we’re going to play this game that I love called, “Friends are Human — a game that brings you closer to your friends.” And that’s what I want. That’s what I want on my birthday… is to be closer to my friends. And YOU are my friends and you’re invited. So we’ll gather and connect.

Let me just pull out one of the questions. It’s basically a deck full of questions. I will pick out my favorites and we’ll take turns answering them. There will be no pressure to speak. You can just listen. But if you want to make yourself vulnerable and share, you’ll have the opportunity to answer the questions.

For instance, “What’s a topic you wish you knew more about?” These are just random. “What parts of your life do you hope will be the same 10 years from now?” Nice. Here’s a deep one. “How has your understanding of love evolved as you’ve grown older.” And finally… (there’s 140 cards to choose from) Here’s one up my alley. “If you could learn any new skill instantly, what would it be?” And finally, “What’s something you’re passionate about that you don’t get to talk about very often.”

So we will have some time together on Zoom. Stay as long as you want or as short as you want. It’s my 60th birthday. Please, no gifts. Actually, my birthday is on March 5th and this event is on March 7th, but that’s okay.

Everyone, thanks so much. Thanks for being here. I hope you’ll come. I’ll leave the Zoom link above on this post and I hope to see you there. In the meantime, enjoy living in that body of yours. It’s not going to be around forever. I mean, we’ve only got 40 more years. We’ve only got 40 more years, and the last 40 went by so fast.

Thanks for listening. I appreciate you. I’ll see you next time. Bye, Bye.

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Hi! I’m Hal. Thank you for your patience. I’ve been moving pretty slow lately. I know it’s been a while since I’ve posted. I’m glad you’re here. Please tap the PLAY button above to hear the intended PODCAST version of this episode. Find the full transcription below. Enjoy.

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Color Theory (Part One)

I’ve recently discovered color theory and I’m hooked. Have you heard about it? Complementary, monochromatic, analogous, split complementary, triadic, hue, value, tint, shade, tone — all the things of the color wheel. It’s called “color theory” and I love it.

I’ve always been drawn to the theory of things. I remember coming home after graduating from Northwestern as a history major and realizing that I wanted to be a musician. I figured maybe the right thing to do would be to go back to Kent State as a post-undergrad and get a degree in music education. So, in order to prepare for the music major, I bought this programmed textbook called “Scales, Intervals, Keys, Triads, Rhythm and Meter” and I ate it up — the theory behind music. Finally, after years of piano lessons, I learned all the key signatures and I learned how to analyze a piece of music. It was like coming home to a language that was mine but I’d never known before.

Due to the onset of ME/CFS in 1991, I didn’t finish that music education degree. But for the next two years, I was signed up for that 8 am music theory class with Dr. DeVore. Until I got sick, I used to ride my bike over to Kent State every morning from my mom’s house. I loved it.

In high school, I had three years with the best grammar teacher in Ohio, Mr. Pollock. I learned how to pull apart a sentence. Mr. Pollock taught us a system for writing an essay — the introduction, the three body paragraphs and the conclusion.

Well, if you know me, you’ll know that I love anything with a system. I love to follow directions. Give me some directions to follow and I’ll follow them. Even though I always thought I was a hippie and the rules didn’t really apply to me, I learned later in life that I love a system. Give me a structure and I’ll thrive inside of it.

I’m drawn to things that have a system. I love to learn the theory of things. And I guess that’s the shit part about ME/CFS. There is no system. There’s no theory. It’s just a brutal illness with a mind of its own doing what it wants to do. Like my girlfriend Emma says, living with ME/CFS is like walking a tightrope and you’ve got a blindfold on and the tightrope is constantly moving and you have no idea how far of a drop it is to the floor.

2026 has started off rough for me with this illness. After a handful of months of significantly milder symptoms in 2025, since the beginning of the year, you might say I’ve fallen off the tightrope a few times. The falls have come in the form of these things we call “crashes” — catastrophic, sudden onsets of intense illness. They come out of the blue and then they last for days or weeks or months… possibly a lifetime.

That’s the thing. You never know. With ME/CFS, there is no theory. There’s no system. I guess like everybody else in this world, we live in the unknown. We’ve got a monster in our beds and we really never know when it’s gonna strike next.

For me, it struck hard this year. It’s been brutal. I’m mostly bed bound these days. I went from being mostly house bound to definitely house bound to mostly bed bound. For the second time, I had to cancel a trip to England, I’ve had to let go of most of the things I enjoy and I’ve had to spend many hours writhing in a bed. I got the numb-fuck in the brain, I got the deep weakness in the hands and the legs and I got that awful burning weakness in the core, always on the verge of a crash.

It means I’ve got to spend most of my time in quiet time — legs up, head back, looking for some good in the murky chaos of my inner world. Fortunately, I appreciate quiet time and I know there’s great benefit in the stillness and the quiet and the solitude. I’m spending most of every day alone, in the dark, with an eye mask on.

Truly, it’s remarkable what I’ve adapted to over the last four or five years. I mean, you should have seen me back in 2019 and 2020. I went non-stop. (lol) I never stopped. I ran constantly — constantly in the car, loading up, heading off somewhere, always making urgent plans trying to figure out how to keep building the Hal Walker Enterprise.

In many ways, I’ve let go of that enterprise. A very important person in my life has encouraged me to “practice being insignificant — one among many.” That speaks to me. For a guy like me, that’s a big deal. But I believe in it. I’m giving it a try. I appreciate being able to tell my story here on Substack. Thanks so much for being here.

During my better months last year, I set up my dining room table to be an art table. It’s still covered with art supplies today while I lay here in bed. But, as you may have learned in my last episode, I’ve become very interested in Islamic geometric patterns. This kind of art touches my brain in such a beautiful way. Back in 10th grade, I loved geometry… and then I forgot about it for about 40 or 50 years. But I love me some geometry. I love shapes. I love angles. I love circles. And I love tessellating patterns.

So I signed up for a couple online classes at the Global Islamic Art Academy led by Mohammed Al Janabi, who teaches a very systematic way of drawing these traditional patterns. He’s been doing it for about 70 years, I think. He learned it from his father. I’m learning to follow very precise instructions to create circles and stars and rosettes and kite shapes — coming together to form these gorgeous, intricate, traditional, repeating Islamic patterns.

So I was creating these patterns and filling the shapes with something called stippling — thousands and thousands of tiny dots. I was quite satisfied with the glassy panes of various shades of gray. Gray was enough for me. You know, I’ve never been a big color guy. When people ask me my favorite color, I say “shades of brown.” My wardrobe always tended toward brown and gray and maroon, all the neutral tones. All the walls in my house are shades of beige and brown… and yellowish. So when I’d show these patterns to Emma, with all the stippling, she’d say, “Hal those patterns are screaming for color. They’re dying for color. Put some color in there.” Her walls are turquoise and purple and pink.

In my explorations of Islamic art, I’ve found Instagram to be an amazing place for meeting wonderful artists doing beautiful work. One day, I was scrolling on the Islamic geometric art feed and I came across a single photo by an artist named Charlotte Dilly. It’s interesting to me how this humble photo jumped out at me as being something important. This was a technique that I needed to learn.

This artist had colored a pattern with colored pencil using a very beautiful gradient technique that I had never even imagined before. I mean, for me, colored pencils were just something to scribble with. I never imagined the beauty that they could create until I saw that photo. I was immediately drawn to it. I was like, “Oh my gosh, I didn’t know you could do that with colored pencils. I’ve never seen that kind of depth. I’ve never seen that kind of warmth. and subtlety.”

So I went to my direct messages, and I messaged Charlotte Dilley. I said, “What are those pencils? I need to know?” And she said, “they’re Faber Castell Polychromos pencils.” I learned that Polychromos pencils are an oil based pencil. They’re nice, but they’re not super special or anything. I mean they’re just colored pencils, but “Wow,” I thought. “I need to get me some of those.”

So I loaded my wheelchair up onto the rack in the back of my car and I drove over to the All Media store on the other side of Kent. All Media is an art store that’s been there for like, 50 years. It’s old school, locally owned and I remember going there as a kid. I encourage you to go spend some money there.

And guess what? At all media, you can buy individual Polychromos pencils for just about $2.50 a piece, they’ve got about a hundred colors to choose from. Amazing. So I sat there in my wheelchair and I picked out my first palette. I basically copied right off of Charlotte Dilley. Here’s what I got. I picked out the Polychromos Burnt Carmine (a nice deep red), Prussian blue (a real nice blue), Terracotta (kind of an orangish something), Chromium Green Opaque (kind of a seaweed green), then gold and warm gray no. VI.

Those six colors made up my first palette of Polychromos pencils, and I raced home to see what I could do with this special shading and gradient technique that I had seen in this single photo of Charlotte Dilley’s — dark and layered on the outside, fading into very light on the inside, giving it a real sense of depth and warmth. Right away, a whole new world of color opened up to me. It was so satisfying… and my girlfriend was so pleased. The photos that I sent her in WhatsApp were no longer gray. They were all kinds of beautiful color — polychromos.

I spent the next couple months with a compass and a straight edge and I followed that up with coloring. And every few days, I’d load up my wheelchair and head over to the All Media store to pick out a few more pencils. The manager got to know me there. I was the guy who showed up in the wheelchair and went straight to the colored pencils. Sometimes I’d spend a half hour picking out my colors.

So, up until that first dreadful crash of 2026, I was coloring. I was coloring, coloring, coloring and I’m gonna show you some samples here in this post. Compared to this eye mask I’ve been wearing for the last couple weeks, it was really a vibrant, colorful time. I’m grateful to be able to share some of it here with you today.

And this is just part one of “Color Theory.” Next time is going to be part two. (And we’ll actually be getting into some of the theory that I’m talking about.) But for now, I just gotta quit. My brain is completely toast — fried. And I’ve just got to stop. That’s one thing that I often don’t know how to do, is to stop when I’m on a roll. So I’m going to stop and we’re gonna make a part two next time.

Thank you so much for being here. I’m looking forward to telling you the rest of the color theory story. It’s very interesting. Thanks so much. I appreciate you sticking around, not losing hope. I know I haven’t posted for a long time. I’m really glad to be here. And I’m still going… still going. It hasn’t been easy. I look forward to seeing you. I look forward to seeing you in the springtime. Maybe we can all circle up and hold hands and sing a song together. That’s what we need.

It’s been quite a time in the world. I’ve been watching it here from my bed and I’m shaking my head a lot. Wish I could be out there doing more. I wish I could be out there doing more service. But here I am learning about color theory. All right, see you next time. Thank you so much.

Oh, by the way, remember, enjoy living in that body of yours today. It’s not gonna be around forever. Take advantage of what you got. Okay, have a good one. I love you. Bye. Bye.

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Islamic Art Week

Stippling

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I’ve been stippling lately. I had to pull myself away from stippling to record this podcast today. In the last two days, I’ve started three new stippling projects. In the last couple months, I’ve stippled for many, many hours. Yep, I’m a stippler. I’ve entered my stippling phase.

If you don’t know what stippling is, I’ll tell you. It’s using thousands and thousands of tiny black dots to create beauty. All the dots come together to give the illusion of smooth, glassy shades of gray. It requires precision, a steady hand, and tremendous patience. I discovered stippling several months ago, and now I’m a full fledged stippler — hours and hours of stippling, thousands and thousands of tiny dots. I keep asking myself, “Is it worth it?”

It started a couple months ago on Facebook when I came across the term “sacred geometry.” I thought, “Hm.” and I started exploring. What is this “sacred geometry?” When I was in high school, I loved geometry. I remember the circles. I remember the triangles. I have a vague recollection of loving the formulas. It’s been about 40 years since I took that class, but all this time, I’ve known that I love geometry. And the idea that sacred geometry exists in art got me excited.

So I headed down the YouTube rabbit hole. The term sacred geometry led me to the world of mandalas. I bought myself a compass and a straight edge and I made a few of ‘em myself. And the world of mandalas led me to the world of Islamic geometric art, traditional patterns of repeating lines and tessellating shapes. And that has been my focus and my passion for a couple of months now.

I’m fascinated by the interaction of the shapes — the squares, the stars, the almond shape, the circles, the pentagons, the octagons and all the shapes in between. They all fit together to unfold a beautiful sacred geometry.

Many of the people who are doing Islamic geometric art are using watercolor to make their design come alive. They build the construction of the design with pencil and then add the color to make it pop. Sure, watercolor makes alot of sense. But I, on the other hand, am using “stippling” to bring life to the pattern. With stippling, I’m working with about five shades of gray when all these tiny black dots come together. It’s these glassy panes of gray that turn a complex geometric pattern into what I consider to be a living, breathing, ever changing kind of vibrant, brain-friendly, solving-a-puzzle piece of art.

As I construct these patterns and fill them with shades of gray, I’m finding great satisfaction and enjoyment. Very slowly, I’ve been filling up this beautiful “Seawhite” sketchbook with tiny black dots. And the whole time I’ve got this nagging question. “Is the result good enough for the amount of time that I’m putting into this? Is it worth it?” I mean I could just fill the shapes with colored pencil and be done with it — move on to the next one. But for whatever reason, stippling’s got me hooked.

Islamic art is brand new to me and I’m really excited about it. Next week, I’m going to be attending an all free, online “Islamic Art Week.” If you’re interested, you could join me. I can’t wait to see all the different flavors of design and calligraphy and geometry. These are ancient patterns, hundreds of years old, that were found on mosques and other architecture in the Middle East.

Islamic Art Week

I wish I could say more. I’m just at the beginning of the journey. But from what I understand, in the mosques of Persia, which is Iran today, they weren’t allowed to display images of people. So instead, they displayed these geometrical patterns of shapes that intertwine and tessellate and repeat to form amazingly complex, symmetrical and timeless works of art. I’m finding that these patterns touch my brain in such a beautiful and satisfying way. It’s like my brain has been craving this kind of geometrical activity. I love it so much. The 10th grader in me from geometry class has come alive with a compass and a straight edge.

The process is fascinating. I’m following very precise instructions, one step at a time, building a structure that underlies the design. It all begins with a circle and a square around that circle. Because of the tessellation, or the repeating nature of the design, I’m just creating one quarter of the finished pattern. I repeat that quarter of the pattern and the repetition causes all kinds of unexpected things to develop.

Using a hard pencil. I create the underlying construction of the pattern with geometry. Once the construction is made, the simple, beautiful, repeating pattern shows itself and I do the incredibly satisfying process of lining out that final pattern with a straight edge and a black fineliner. And then I use one of those gray putty erasers to erase all the pencil line. And then on the bright white, smooth cottony paper, this luscious, clear, logical and simple design is born. And I begin the process of stippling — filling in the shapes and making the design come alive.

I’ve become a much better stippler in the last couple months. When I started off, there was a kind of panic to it. I realized the kind of patience it was going to require and I didn’t have the patience. I wanted to go fast. But the truth about stippling is… it’s a very, very slow process, thousands of dots, one dot at a time. It takes hundreds and thousands of dots to make any progress on a piece. I felt like I needed to rush. In the rush, my stippling was messy. Many of the dots turned into dashes and left this unclean look to the stippling. But I’ve gotten better. I’m learning to be patient with my stippling.

Stippling is essentially a mindless activity, but it takes real precision and care. When I take my time with a stipple, it turns clean and glassy on the page. It feels like a fine film on the paper and it’s quite satisfying.

But it has brought up a lot of questions for me. It’s brought up these kind of existential questions, like, “Is it worth it?” As the minutes and the hours of tapping pass, questions come into my head and I wonder, “What am I doing this for?” Here I am filling these pages with thousands of dots, and I’m asking, “Is this the way I should be spending my life?”

But when I finish a section of stippling and I rub my hands smooth over that fine paper and I can feel the glassy film of the black ink, I see the beauty. I feel the satisfaction.

I’m gonna show you some of my work here, but I want to make clear, it doesn’t translate well on the screen. Trust me, you need your hands on the paper to get the full effect. I love to brush my hand over the fine softness of this high quality art paper. But I keep asking myself, “What’s the point? What’s the purpose? Is it worth it?” I mean, what am I doing this for? Who’s even going to see it?

You know, when I was making music, there was always an audience. But art is different. I mean, I could be posting on Instagram, looking for likes, looking for affirmation. And I can take a picture and send it to my mom. She loves to see what I’m making. Or maybe someday when I fill up the book, I can pass it on to my grandkids. They can keep it on a shelf somewhere in their future house. Whenever someone comes to visit my house, I always break out the sketchbook to show ‘em my stippling. I appreciate the way Annette pauses and lets each page kind of soak in.

But it brings up this whole question of, what is the purpose of art, especially this particular craft that takes so many hours to make it happen, and I’m not even certain that it’s great work. You know, I could be writing my memoir or composing an orchestra or teaching a child or changing the world or writing a letter to an old friend or creating my next Substack. But instead, I’m sitting here tap, tap, tap, tapping, essentially coloring in these shapes with thousands of tiny dots.

It’s essentially glorified coloring. That’s what it is. It’s glorified coloring. And I don’t want to be a coloring book artist. Mind you, I’m not judging all the people that are out there coloring with coloring books. But I grew up in a household with an artist mom who didn’t really allow coloring books in the house. We had to make the books ourselves. And I guess that’s what I’m doing with the Islamic design. I’m following ancient geometrical instructions to create an outline and then coloring it in with stippling. I’m basically a glorified coloring book artist. (lol)

I’m not sure what the problem is, or if there is a problem. It’s a beautiful and satisfying process of art making that I’m taking part in. But I just don’t know what the purpose is. What is the purpose of art? That’s the question. That is my question. what is the purpose of art? What is the purpose of filling up this sketchbook?

I find it very peaceful. I love making these patterns. It’s such a fun and exciting process of unfolding. Maybe that’s enough. Maybe it’s enough just enjoying the process. I think that’s it. It’s about the process. Am I tapping these taps with intention and love? Am I bringing beauty into the world? Am I bringing peace into my life and spreading it to others? It could be that the final product and who sees it is really not that important… maybe.

So that’s basically the whole story. I’ve been stippling. I’m becoming a master stippler, one dot at a time, one little shape at a time. I’m creating beautiful glazes of gray.

You know, stippling fits my energy level quite well. As you know, I’m living with chronic illness. I can’t go out in the yard and tend the garden or rake the leaves or clean the garage. I’m not well enough to go on a bike ride or a walk. And often, I’m just not well enough to use my creative juices for much of anything. But I can handle stippling— sitting up in that chair with a pad under my butt, tapping that pen over and over.

You know, another word for stippling is pointillism. I haven’t really warmed up to that term. It feels a little bit above my pay grade. I’m doing stippling, thousands of tiny dots on paper, satisfying my brains craving for the gray scale… and wondering what the purpose is.

Please! Come over to my house. Ask to see my sketchbook. Give my life some purpose. I’m dying to show it to people. I want you to rub your hands over it. I want you to feel the smoothness of the paper, this fine paper. And I’ll leave some pictures here, but trust me. They don’t live up to the real beauty of the page.

So, I’ve started three new stippling projects in the last few days. Beginning a project is like, Oh, my God, there are many, many hours of patient stippling ahead. At the beginning, it can feel a bit overwhelming. But, filling in just one shape at a time, eventually the work gets done.

You know, sometimes it occurs to me, I could be hiring child labor to do this work. Hire some kids five bucks an hour to stipple for me. (lol) I don’t know if that’s legal or not, but it does occur to me. It’s like, what am I doing? A 59 year old man, highly intelligent, very creative man sitting here poking dots over and over. I could have kids doing this. I’m just kidding about that, but it is. It’s mindless work. It’s mindless work that this 59 year old man is quite enjoying in his retirement.

But I do get to experience the satisfaction. I mean, when the whole piece is done and my eyes get to gaze out over that field of gray, that smooth, glassy, kind of film of gray. I can just sit there and gaze at the real beauty with a good sense of satisfaction. It makes it all worth it — all that repetition, all that mind numbing labor.

Let me tell you one more story. When I was in college, I worked at the Noyes Cultural Arts Center, and I was an office assistant. I was terrible. I would show up with my long hair, unshaven, messy clothes, holes in my clothes, stinking like a hippie. For three years, I worked at the Noyes Cultural Arts Center with Toni Sinclair, and my favorite thing was to go across the street and get Toni her donuts and coffee. And I’d bring it back and we’d all sit at our own desks and I’d eat my donut and my coffee.

But what I loved is when she would give me a mindless job. Like, “Here Hal, here’s a thousand envelopes to address, to put the sticker on,” or “here’s a thousand envelopes to seal.” I love that kind of repetitive, mindless work. I was so grateful when she’d give me a job like that. I could just lose myself in the repetition of the task. Unlike my co-worker, who would come up with projects on her own and make good things happen in the office, I just sat there… waiting for my shift to be over. I did not like office work. I wasn’t cut out for it. But whenever I was given a mindless job, I could do it. I could do it for hours.

And that’s kind of what stippling is. It’s this mindless, meditative, mildly maddening, very peaceful, very quiet. I don’t listen to music. I don’t listen to a book. I just sit there, dot after dot after dot after dot — thousands of dots and I stipple.

That’s my whole story for today. Thanks for listening.

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So if you wonder where I’ve been lately, I haven’t been writing for Substack. I’ve been stippling and I hope someday that I get to have a… you know, maybe I’ll have a show someday. Maybe someday I’ll frame some of these and have a show. Maybe I’ll be a famous stippler. Who knows.

But tell me, what is the purpose of art? I’m really interested. Besides filling up this sketchbook and putting it on the shelf somewhere and passing it on to my grandchildren and teaching them Islamic geometric art and stippling. Tell me. Tell me. What’s the purpose? What’s the purpose for creating beauty, other than enjoyment, my own enjoyment. Maybe that’s enough. So, that’s my big existential question for the day. What’s the purpose of art? What’s the purpose of stippling? Thanks so much for listening. I really appreciate you being here.

All right, I’m gonna go stipple some more. Hey, by the way, if you woke up this morning, enjoy. Enjoy that body. Enjoy that sacred body. Not everyone gets to have one today. I know several people that don’t — that body that is such a miracle with five senses inside and all those organs that are working. You know, all the things that had to go right for us to be alive today, it’s a miracle. Thank you.

Come visit me sometime. Put your hands on my stippling. All right, everybody, have a great day. Bye. Bye.

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Hi. Welcome. Please press the PLAY button above to hear the intended PODCAST version of this episode. Find the full transcript below. Thank you! Hal

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In Memoriam

The weather changed today and it’s cold inside. I’ve been walking around the house with a T-shirt on tonight and I’m freezing. I haven’t gotten my fall clothes out yet. I haven’t been ready to make that transition.

It’s been summer in Ohio for the last couple weeks and I’ve been loving it. All the windows have been open and… I wish it would never end. It’s been blue skies with temperatures in the 70’s and the 80’s. I’ve been wearing my linen pants and a T-shirt and I’ve been staying up late with the windows open, making art. I love it. I’ve been drawing Islamic geometric patterns. That’s my latest thing, but I’ll tell you about that another time.

But today feels like the first day of a new season. I feel a little bit cold to the bone. It’s the middle of October and it’s definitely turning autumn. And I can’t say that I’m ready. To be honest, I’m a little scared. I mean, after autumn comes winter, right? Summer’s much easier. Yep, of all the seasons, summer is definitely the easy season.

But I’m not here to talk about the weather. It’s been an interesting week in the world and in my life, it’s amazing how much can change in a week. In the last seven days, three people who have played important roles in my life have died.

In each case, I found out about it on Facebook and in each case, I realize that I didn’t get the opportunity to adequately let them know how much they meant to me, how much I cared about them. I didn’t get to let them know how important they were in my life.

So I’m taking this opportunity now to speak out these names and just give a little glimpse into the lives of three really remarkable and wonderful people who are no longer walking the earth. It’s definitely been a reminder to me that it’s never too soon to tell the people I care about how much I care.

I love you, mom. I love living in the same town with you and I really enjoyed our date last week to the Standing Rock Cultural Arts Center. We should do it again. ❤️

It was last Friday that I learned that Dr. Terry Miller died. I think it was a sudden death, unexpected by his family.

What a great guy. Dr. Terry Miller, an ethnomusicologist from Kent State University. He was the man that introduced me to the melodious khaen, the grandmother of the harmonica from Southeast Asia. Terry Miller was the preeminent scholar on the khaen and all music from Northeast Thailand, from the Isan territory of Thailand. I don’t know all the details, but I think he started studying and traveling to remote villages in Northeast Thailand back in the 60’s. Long before running water and electricity, Dr Terry Miller was studying the “mawlum” music in remote villages outside of Roi Et.

He wrote just about the only book that exists on how to play the khaen. I think it was he that started the ethnomusicology department at Kent State. And somehow I ended up living in the same town as Dr. Terry Miller. I’d say that because of Terry Miller, Kent, Ohio has been a Global Center for world music, and specifically music of Northeast Thailand and the khaen. And this is my hometown. How lucky am I.

Back about 25 years ago, I visited his house one day, as a friend of mine was house sitting for the Miller’s, and over in the corner was a four foot bamboo mouth organ. I learned it was called the khaen and it was just sitting there ready to be played. I blew some harmonica rhythms into that mouth organ and my life’s never been the same ever since.

In 2007, I traveled to Thailand with Dr. Miller and his wife Sara. Every year they would spend several months in Thailand. In 2007, I bought a plane ticket with a stop in Seoul, Korea, and found myself at the Miller’s house in Bangkok. Then I spent about two weeks traveling around Thailand with Dr. Miller and his wife — all the while looking for places where I could lie down, because I was living with a fairly mild version of ME/CFS at the time. I didn’t tell anybody, though.

Dr Miller escorted me to remote villages in Northeast Thailand in search of the makers of the khaen. He was personal friends with all of ‘em. I met the makers and bought a few khaens and brought them back to Ohio. It was a wonderful trip. I’ll never forget it.

Terry Miller was so kind and generous to me. You know, I’ve always been kind of a socially anxious guy and I was just a little bit intimidated by his academic stature. He was very smart and he knew a lot about a lot of things. I was just a pot smoking folk singer from Kent that wanted to learn how to play the khaen. But he always surprised me with his kindness. He really seemed to take an interest in me.

On my last night in Bangkok, I woke up in the middle of the night very ill with a terrible flare up of some devastating, mysterious illness. I came back to Terry’s house and he took me to the hospital. As my host, he was very concerned. I was very sick. But, I made it back to Ohio and, uh, got sober and eventually, 20 years later, I became a world famous khaen player on Tiktok.

But for the last 20 years, Dr Miller’s been visiting Thailand every year studying covered bridges. I think that was his latest passion. But I’m sorry to say he’s gone now and I won’t get the opportunity to tell him how thankful I am for all his good work and all his generosity toward me. Thank you, Terry.

Then on Sunday, I learned that Peter Amidon died. Another great man, another great musician, a music educator and a big influence on my teaching.

Probably about 25 years ago, I bought these two song books for children called “Down in the Valley” and “Jump Jim Joe,” compiled by Peter Amidon and his wife, Mary Alice. And these books were full of singing games and dances for children, and I learned them, and I incorporated them into my life as a music educator. And I brought these songs into my family life. Hallie grew up with songs like Green Sally Up and Grandma Moses and Jump Jim Joe and all these wonderful songs that Peter Amidon introduced me to.

There’s one song called Grandma Moses. It goes like this,

Grandma Moses, sick in bed. She went to the doctor. The doctor said, “Grandma, Grandma, you ain’t sick. All you need is a peppermint stick.” Hands up, shake, shake, shake, shake, hands down, shake, shake, shake, shake, roll around, shake, shake, shake, get out of town. Shake, shake, shake, freeze.

I taught that song with motions to 1000’s of students all around the state of Ohio — all thanks to Peter Amidon and his songbooks. Thanks Peter.

And then, as a choir director at the Unitarian Universalist church, I was always looking for good choral material and Peter Amidon compiled these beautiful choral arrangements— perfect for my choir. It was called “55 Anthems for the Small Church Choir” and then another one called “25 Anthems for Interfaith and Community Choirs.” These books were so jam packed with good stuff. I bought a set of each of ‘em for my choir and we used it week after week. It was such a great resource — beautiful songs, beautiful arrangements with beautifully simple piano accompaniments. What a great find for a choir director like me — so satisfyingly folky, while being incredibly high quality, as well. Peter Amidon’s arrangements had such a simple beauty to them.

In 2016 when I put out my album, Life Wonderful. I was looking for famous people to give quotes about the album, so I sent one of my CDs to Peter Amidon, and he listened to it and I got a response. He said, “Hal, I so appreciate your talent. Keep going, but this is not my style of music, so I’m not going to give you a quote.”

That was a little bit uncomfortable and humbling, but I had so much respect for that guy. Peter and his wife Mary Alice actually performed for my benefit concert back in 2021 when I was in the depths of illness. I so appreciate them. I’ll leave a link for the video of them right here. You can check it out now.

Peter and Mary Alice were the heads of a traditional music family. I think the Amidon family used to perform together. I never got to meet him in person, and I don’t know that we ever even spoke on the phone. Maybe we did, I can’t remember, but I’m so thankful for the songbooks that came into my life.

Rest easy. Peter Amidon, thank you for all you’ve given us.

And then on Monday, I learned that Debra-Lynn Hook died. Yep, my old friend, Debra-Lynn. Debra-Lynn and I were buds. She was just a person in town that I really liked. I really had great admiration for her. She was unique and opinionated and had a strong sense of herself. She was a spiritual seeker and I always appreciated that about her.

Her roots were in the South. I think she’s from New Orleans and had kind of a really easy North Carolina accent. Actually I’m not certain of her background. All I know is I appreciated her as a friend and I used to love it when she came to church. She’d come to church sometimes, sometimes she’d sing in my choir and and I just always appreciated it when she was there, I felt she brought a level of honesty and intelligence to the church that I really appreciated.

And she was a great photographer. Again, when my album “Life Wonderful” came out, I hired Debra-Lynn for a photo shoot. She took some beautiful pictures and I’ll never forget it. That was a wonderful afternoon. Me and Andy and Kathy, my trio went out to Beckwith’s tree orchard, and Debra Lynn did an awesome photo shoot. Those were the days — 2016. It’s getting to be a long time ago now.

And Debra-Lynn’s been battling leukemia for many years. She lived a very full life for all those years, but for the last few years, while I’ve been battling ME/CFS, she’s been home battling leukemia. And I know it got really rough. I’m sorry I never took the time to stop by and let her know that I care, but I was busy with my own battles, like we all are, I guess. But I do care, Debra-Lynn. I miss you and I’m sorry I didn’t get to give you an adequate farewell.

But her family lives on. She’s got three beautiful grown children that are in Kent now building their own families. A whole new generation of little children will take over. I guess it’s nice the way that works. The torch just keeps getting passed.

My friend Emma was just reminding me that we think we got all the time in the world, but we don’t. In fact, “every moment is a gift,” she says. And it’s true, what a gift to be alive. The time to let the people you love know you love them is today. So I’m going to leave you with this. I’m grateful for you and I care for you and I hope I get to say it face to face before it’s too late. I’ve learned my lesson too many times.

So let these memories not be forgotten. Dr. Terry Miller and Peter Amidon and Debra-Lynn Hook, three people who really played a significant role in my life, and I’m sorry they’re gone, all in the course of one week.

Sending blessings to all of you. Thanks for listening. Remember… you may think you have all the time in the world, but this is the day. This is the day to celebrate being alive. What a gift it is to be alive, but it’s not going to be here forever, so take advantage of it today.

Well, I’ll be back next time. Thank you so much for listening. Enjoy living in that body of yours. Breathe Easy, everybody. Sending my love. Alright. Bye Bye.

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The Way Opens

There's a Quaker phrase that says, “the way opens.” I love that phrase. The way. The way will open. It's a beautiful idea, this idea of “the way.” Just watch what happens. What will be, will be. Que será, será… and “the way” will open. Yep, my job is just to be available, be present — to be present for the way to open.

One interesting thing about this illness that I live with, ME/CFS, myalgic encephalomyelitis, also known as chronic fatigue syndrome. One of the defining characteristics of this illness is how many doors it closes, how many things it takes away. With ME/CFS, most of the time, the way doesn’t seem to open. We’re too sick. We’re too exhausted.

But in my thinking today, the way always opens. You know, It's not my way. My way doesn't always open, but “the way” opens, in unexpected and sometimes undesirable ways. The way opens and we eventually all die and the way keeps opening. I love that idea, “the way opens.” I like thinking about God that way. God is the way — the way, the path, the unfolding. The way opens. I see the way opening for me all over the place. It just keeps opening. I keep waking up and the way keeps opening. The way opens, yes… as long as I’m willing to see it that way.

But one big way it didn't open is on my trip to England. In case you were wondering, I'm not in England right now. Nope. For a variety of reasons, I wasn't able to get on the flight on Sunday night for my lie down seat to London to meet my long distance partner Emma for the very first time. In fact, today marks our one year anniversary of meeting on Substack. Yeah, we're a Substack couple, a long distance Substack couple. We met on Substack one year ago, exactly.

In fact, maybe I'll even post the message that we sent to each other. I said, this was on September 18, 2024, just so you know, Emma lives with the same illness that I have, ME/CFS, and she's mostly housebound, living in Warwickshire County, England. I said, “Emma, thanks so much for subscribing and commenting. I'd love to hear more of your story. I'm so interested in connecting with people that are taking a spiritual approach to this illness. I’m having a really rough day and a rough week and it's hard to see any other side of this thing. All the best. No pressure to respond. Hal.” And on the very next day, Emma responded, “Good morning. Hal, I'm so glad that you reached out in messages. I felt I wanted to connect with you this way, too.” Her message closes like this. “There is another way. Have faith that your journey has purpose and meaning beyond what your mind is telling you. Em.” There it is — the way. “Have faith that your journey has purpose beyond what your mind is telling you.” That's everything I needed to know to know that I liked this person and I wanted to know more. We've been talking practically every day ever since — on FaceTime, Zoom and WhatsApp, mainly — getting to know each other long distance, with an ocean between us.

Anyway, this was our one-year anniversary today of having met and I'm supposed to be in England, but I'm not there. The way didn't open. I'm still here in Ohio on South Chestnut Street. I guess a different way opened, because the way always opens. I can't wait to see what happens next. So I'm gonna tell you a little bit of a story of how the way didn't open and my significant role in that kerfuffle of the way not opening.

I bought a ticket several months ago to England. I bought the super expensive lie down ticket, the overnight flight from Pittsburgh to London — non-stop, lie down, super expensive, non-refundable. And I invited my good friend Annette to be my traveling companion. And the vision began.

It was a beautiful vision. It was a dream. It was a fantastical journey in my mind, in all our minds — Emma, me, Annette, all my friends that I told about it. We were counting the days and the weeks until the trip. We couldn't wait. We were gonna be staying in this really cool Airbnb in rural Warwickshire County called “the Pig Barn,” a converted pig barn, which is now a super nice cottage. And I bought a special puzzle and I bought a couple games and I bought a couple real nice, sweet, new outfits, British-inspired. I was looking good to meet my young, English, super hot, 45 year old, long distance girlfriend — for the first time. I was feeling fresh and I was having some better days, a whole bunch of ‘em.

Against all odds, this trip really seemed like it was gonna happen. Coming from 2024, the year of crashes, the year of decline, the year of needing a caregiver, being mostly bed bound. I sort of leveled out this summer and it seemed like traveling was a real possibility. I couldn't wait to sit in the same room with Emma and see what it was like.

The dream was unfolding. We were just three weeks away. We went from counting the weeks to counting the days. Finally, after a whole year, Emma and I were gonna be able to spend some time getting to know each other in person, face to face, the real human stuff, no more screens, real bodies, real touch, real sight. The way was opening.

And then… you see, all along I had this passport ID. It was a passport card. My passport booklet was expired, but I had this card in my wallet and it said “passport card” and it didn't expire until 2027. And I kept looking at that passport card and saying, “you know, Hal, you should check into this. You should make sure this card is okay.” But it didn't ever occur to me that it might not be. I mean, it says in big letters on the thing, “Passport Card.” That's got to be a passport. It's got to be what I need. The thought I was having was “passport cards are the new way. They don't use passport books anymore. Now it's just passport cards. This is the new generation.” But I procrastinated looking into this. I kept looking at that card, thinking, “you know, Hal, you should look into this.” But I didn't. I'm really embarrassed to admit this. I'm so humbled.

Well, just a few weeks ago, just about three weeks before the trip, I applied for my ETA, my “electronic transit authorization” to enter England and they would not accept the picture of my passport card. And I started getting frustrated. Over and over, I was sending a perfectly focused picture of my card. So I thought maybe I need a scan. But my scanner is broken, so I went all over town looking for a scanner, somebody to scan this passport card. I finally got a scan, but the scan didn't work either. Then I started getting real nervous. Anyway… they kept not accepting it.

And then, I told Emma about it. She said, “Hal, you need a passport booklet.” I said, “What? I need a passport booklet?” “Yeah, you need a passport booklet to get into England. You can't do it with a passport card.” And I was like, “Oh, shit.” So right away I started freaking out, looking into how I was gonna get a passport in the next three weeks. And pretty quickly, I found out the only way to get a passport in the next three weeks is to do the urgent passport process. It's possible, but there's a lot of uncertainty involved.

It means, within two weeks of your trip, you gotta call the passport hotline in hopes of getting an appointment that week. Then you gotta travel to the nearest passport office in Detroit, Michigan, in hopes that they'll be able to give you a passport on that day. Believe me, I know the whole process. I know all about it. (lol) I learned everything. I learned everything… and the way still didn't open.

So that Tuesday morning after Labor Day, I called the passport hotline. I got myself an appointment for Friday. I was gonna have Cameron drive me up to Detroit, and I was hopefully going to be getting myself a passport. And then, guess what happened next?

It was Tuesday night and I started having symptoms in my body that felt like a crash coming on. I can't even describe it. I don't know what to say about it. It's just a weird, adrenaline, wired feeling — this scary feeling like some poison is poured into my body. Ears ringing and I couldn't sleep all night. And I woke up on Wednesday morning, very ill, bed bound, breathing heavy, heart palpitating, heart racing, all kinds of crazy symptoms — scary, crazy symptoms. And I had two days until I was supposed to travel to Detroit.

Now that doesn't sound like a very big deal, but when you're having the symptoms I was, just leaving the bed, just going downstairs to the kitchen is a big deal. I was in a full-fledged crash and I had no idea how long it was gonna last. And my mind starts taking over. “Oh, shit, this is my new normal.” I start getting filled with fear, like, “What did I do? What did I do to make this happen? And is this going to be my new normal? Am I ever going to get back to the way it was? How did I overdo it? What's taken over my body?”

And I knew if I didn't make that trip to the passport office in Detroit, I wasn't going to England. And I think it was that Thursday night, I made the decision. I called Annette, and I said, “Annette, I can't do it. I can't get to Detroit tomorrow.” And the dream came to an end. We pulled the plug and we canceled the trip. Then over the weekend, I started feeling a little better, and I was like, “Oh shit, I was feeling better.” And I was like, I canceled the trip, Annette forfeited her ticket. I canceled the Airbnb. But then I started questioning it. I was thinking, “maybe if the way opens, I can still go on this trip, even though Annette’s not going, even though I still don't have a passport, even though I don't have the Airbnb, I still have a plane ticket on Sunday night, and maybe the way will open.”

So on that Monday morning, one week before the trip, once again, I called the passport office and made another appointment for Detroit. Yep, made another appointment for Detroit — that Thursday, three days before the flight, I was gonna travel to Detroit and hopefully get myself a passport. I was just gonna see if “the way” opened. So the story goes on, checking to see if “the way” opens. And as you can see, the way did not open. I'm still in Ohio. Thanks to a doctor's note, I have one year to use the credit with British Air. So let's hope within the next year, the way opens.

Of course, we know the way will open. We just don't know what way. Hopefully it'll be my way, the way I want. Yeah, I want MY way to open.

So that's the whole story, everybody. I'm tired. I gotta wrap it up. That's the gist of the story. The gist is “the way” did not open. But the fact is, “the way” always opens. You know, what's going to happen next? I can't wait to see.

I spent this week drawing. I spent this week getting into sacred geometry. I bought myself a drawing compass and a straight edge. I've turned my dining room table into an art studio. And I took a little picture of it before cleaning up. It's a mess. I've been spending my days surrounded with watercolors and colored pencils and water soluble crayons and Micron pens. Yep, the way keeps opening in unexpected ways. I mean, two weeks ago, I'd never even heard of sacred geometry. Now I'm obsessed. That's all I want to do. I’m looking forward to sharing more of that with you and other things as well.

The way keeps opening. You know, keep an eye out. How is the way opening for you in unexpected ways. That's what I want — to keep an eye out. Like, here's the way. The way is now. The way is opening. Can't wait to see how it opens next. You know, when one door closes, another one opens.

But all that aside, it was a huge disappointment losing this trip. I had so many pictures of the way it was gonna be. Yep, the way it was gonna be, but the way didn't open. I'm really humbled and embarrassed about this whole passport debacle. It didn't need to be that way. I'm very sorry to Emma and to Annette and Emma's mom and everyone that was so excited for this trip to happen. Everyone's hopes were so high. So I'm doing the normal process of getting a passport now so I can be ready for the trip when it happens.

The way opens.

All right, that's it. That's it. I'm wrapping it up. Hey, thanks so much. Thanks for listening. Thanks for paying attention. Hey! Enjoy living in that body of yours. It's not gonna be around forever. Take advantage of it today. Do what you can, breathe. Breathe, love, feel. Take care of yourself, all right? Thank you. Bye, bye.

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A Sketch Book and Two Fountain Pens

Last night I was at the Spectrum store getting my phone activated and getting my mom's phone activated. After many years of being with Consumer Cellular, Spectrum was willing to give me a package deal on internet and phone and I made the switch.

So it was a full day of cell phones and internet providers and operators helping me with the whole process. But I got to the Spectrum store and I had a really great guy helping me out. He was so energetic and so helpful. He just wanted to help. It was so great to be in contact with another human who was smart and knew what he was talking about and wanted to help.

So at some point, he let me know that I'd have to wait a little while because the activation was taking longer than he expected. And fortunately, I had brought my sketchbook with me. Yep, I have a new hobby. I’m a guy with a sketchbook. 59 years old and I finally realized the joy of having a sketchbook. I carry it with me wherever I go - a sketchbook and two fountain pens. Kind of like my mom did back in the day. She's a master sketcher and she always had a sketchbook with her. Wherever we'd go on vacation, my mom would go off and sketch. I, on the other hand, was never particularly interested in sketching or sketchbooks. That was my mom’s thing. I’m a musician and I always believed that I didn’t know how to draw. But lately, I'm putting the pen on the paper, taking the risk to do it imperfectly and I’ve started to draw. And sometimes I even add some watercolors.

I've got a Stillman and Birn Delta Series sketchbook with nice, thick watercolor paper and I found this cool pencil holder that straps on. I don’t use it for pencils though. I use it for my two fountain pens. And they both fit in this little orange pen holder that I found in a store in downtown Kent.

A couple Saturdays ago, I was just roaming around on my scooter and I was well enough to say, “you know, I'm gonna walk into this little stationery store and see what they got.” And more and more, I love paper stores. I love stationery stores. I love fountain pens and different kinds of paper and paintbrushes and watercolors. I went in there just to see what they had and within about two minutes, I found the perfect thing to buy. Within five minutes, I was back on my scooter with a new pencil holder. It’s got this elastic strap that straps right onto your sketchbook, so wherever I take my sketchbook, I’ve always got my two fountain pens there. They don’t get lost and they’re ready for me whenever I need ‘em.

So anyway, I was at the Spectrum store and I was in my wheelchair and I had some time to wait. So I just found myself a comfortable spot right off to the side of the store with this little corner scene of a table and two chairs that I decided I would draw.

That's the beauty of a sketchbook. When I'm moving around the house or moving around town, I'm always on the lookout for something I might like to draw. And I got my sketchbook right there with me and two fountain pens, one fine and one ultra extra fine — kind of like my girlfriend, Emma. She's ultra extra fine.

So there I was sitting in the Spectrum store, a white table and these two kind of modern chairs, and I said, “Okay, here we go.” You know, there's always a little bit of anxiety that goes with starting a new page on the sketchbook, ‘cause what if I mess up. What if I ruin a page? I don't have a sense that I'm going to ruin the page and it really doesn't matter if I ruin the page, but there's just that little bit of fear. What if something goes wrong? I’m working with ink. I’m working with a pen. It’s not a pencil where I can erase if I make a mistake. Every mark that I make stays on the page.

But I just jumped right in. I started with the table top. Within a couple marks, I knew I had made the perspective wrong, but I just kept going. I didn't stop. I didn't give up. So for the next half hour or 40 minutes, while I was waiting in the Spectrum store, I was focused and at peace. I was fully in the moment. It was nice comfortable air-conditioning. I had the comfortable seat of my wheelchair. No one was paying any attention to me. I was just there focused on my little corner scene. I was so content. It was quiet in there and I just sat and drew — for about 30 minutes, probably.

Drawing is such an interesting process. I mean, I'm really a beginner. I don't know how to draw. But I take the risk and I start. I face the fear of the empty page and I go for it and I keep getting surprised by the results. Little by little, one mark at a time, it becomes something, and it's so satisfying to watch it become something, even though sometimes it's frustrating and scary and I make wrong moves. It's so satisfying and often so surprising. And it doesn't take long for something to happen. Pretty quickly, I had myself a little piece of art there in my hands. And I felt a smile in my heart.

Right when I had finished the scene, I looked down at my phone and the activation was complete. So I rolled over and told my helpful Spectrum guy. And we were both in just such a good mood. He was so pleased that I was happy, and I showed him my picture. He said, “Wow, that's great!” And I said, “Oh, it's not that great.” He said, “Believe me, I've never seen anyone walk in here and do that before.” So I was quite happy. I love having a sketchbook.

And then on the way out, as I was passing by this woman, she said, “you need any help?” And I said, “Yeah, sure, you can open that door for me?” And she opened the door for me, and I rolled right out of there to my car and put the wheelchair up on the back rack. It was just a beautiful outing. You know, I don't take outings for granted anymore, having spent so much time in bed, so much housebound time.

Late summer in Ohio. It was great to be out among people and I was met with so much kindness. And having my sketchbook along made all the difference in the world. I recommend it. If you’re thinking about getting a sketchbook. Go for it!

This phase in my journey of making art began about a year and a half ago. My mom brought over some water colors and I started throwing some paint onto the paper. I was just free and loose making these cards that I was sending in the mail. I love the easy clean up of water coloring. I had it all set up by my bed with some brushes and some water and some water colors. For a minute there stuck in bed, I was just free and easy — learning a whole new craft from scratch.

Then I bought an online course. And in the online course, the first lesson was all the supplies you need and I went and bought all the supplies. And guess what happened next? Yep, I stopped water coloring. (lol) I bought all the supplies and then I stopped water coloring for about six months. I lost that free and easy feeling of the beginning and I started trying to learn everything there was to learn and I got overwhelmed and gave it up. So I paused for about six or eight months, but eventually broke out the watercolors again.

And one day I was water coloring and I realized “I need to learn how to draw.” In order to watercolor, I need to be able to draw something — and I'm terrible at drawing. At least that was I was telling myself. Truly, I had this story in my head that goes back many years that I don't know how to draw. I can't draw. Me and my dad, we’re both bad at drawing. I do have these little stick figure people that I make and I'm okay at doing a little bit of lettering, but I have no clue how to look at something and draw it on a piece of paper.

So at first I got interested in pencil drawing and I bought all the pencils. I got the 2h and the HB and the 2B and the 4B and the 6B and the 8B. I got all the H's and all the B's. I learned what H and B means and I started learning how to shade. And I couldn't believe it. I was making these spheres, these shaded spheres, and I was making these real life drawings using shading with pencil. I was so surprised at what was possible as a beginner. And I couldn't believe I'd gone my whole life without doing this.

And then one day I was on YouTube and I saw this guy doing loose sketching with a fountain pen and then adding watercolor on top of the black ink. And I realized "That's what I want to do!” And that's what I've been doing. Moving around the house — drawing different scenes on the porch and the house. It’s scary every time, but once I get started it just brings me into the moment in such a beautiful way.

I feel like I'm starting a whole new dimension in my life. I've got my dining room table set up right now like a little art studio. I'm so grateful. I'm out of bed several times a day down there at the dining room table or on the front porch making art with ink, fountain pen and some watercolors.

Yeah, I've been wanting to share this with you for a while, so thanks so much for listening. It's been a really exciting process. I’ll tell you about these little five minute rectangles of art that I’ve been making — quick squares of creativity. I start with a light wash of watercolor and I then I draw some ink on top, and then another layer of watercolor. If I'm not feeling inspired, if I'm not interested in getting into a big project, I just make one of these little five minute rectangles. It’s a very small commitment of time and it helps break through the wall of my perfectionism. It satisfies that urge to create. Making these little rectangles of art makes me feel like I’ve done something worthwhile. I'll show you a few of them here.

With the upcoming release of Elanor Nadorff’s documentary about me called “Living in a Body,” lately I’ve been comparing my life of two years ago to the way it is today. I was in a very different phase two years ago. I was in the middle of declining health, experiencing overwhelming grief about the loss of my career. I was just having a lot of agony about all that I was losing. Since then, I've really settled in. I've settled into the reality of my life. I'm grateful to say I'm in a bit of an upswing right now. Healthwise, I'm doing a little bit better. I'm not having those life altering, terrifying crashes…

And I've discovered art! I've discovered this new passion that I have of drawing — drawing with a sketch book and a fountain pen. I'm a total beginner. I'm at the very beginning of this journey and there’s no guarantee I’ll still be doing it in six months, but I hope so! For now, I'm really grateful to have discovered a new passion.

I'd love to be part of a sketching community. You know, we could all meet downtown in Kent and find a different scene to draw. And then afterwards we could share what we did. Doesn’t that sound wonderful? If you're interested in that, stop by my front porch and let me know.

All right, everyone, that's it. Episode 114. Hey, remember, you live in a body. It's a beautiful thing. But It's not going to be around forever. It’s just a glimpse in time. Go take advantage of it today. Step outside for a minute. Take a deep breath. Stretch out. Stretch out in that bed. Do whatever you got to do. Take this moment to be quiet. Take this moment to appreciate. Take this moment to look around and see the good, see all the good that's surrounding you — even in your difficult circumstances, whatever they are. That's what I'm gonna do.

All right. Thank you. Thanks for listening, thanks for being here. I appreciate you and I'll see you next time. Bye, bye.

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Better Days

Hi. Remember me. It's your friend, Hal. This is the “Living in a Body” podcast. Here we are. It's the middle of summer. The fans have been going non-stop for weeks. The windows are open. I got practically no clothes on. Yep… you know me. I loooooove summer. And I'm just here to check in, just for a quick hello and “how-de-do.” Sending love to all you my beautiful readers. Thanks for being here.

I want to let you know that I've been feeling just a little bit better, and it makes a big difference. After practically a whole year of decline, hitting some of my lowest lows, imagining that my life was coming to an end, I'm having some better days.

This morning, I was driving up to my 12-step meeting. Yep, that's a big deal. I was driving. It's true. Me in a car on I-480 heading up to Solon to be among the living — with my electric wheelchair securely hanging on the back— out of my bed, out of my house, in a car, on my own, with the windows wide open on the highway. Like the good old days, heading through Streetsboro, past Giant Eagle, past Home Depot, past the turnpike. It's amazing. Look at me. Look at me driving. Yay!

To be honest, after just a few days of feeling a little bit better, I'm already taking it for granted. I'm planning my life around feeling better. When the time is right, I promise I'll let you in on my plans.

So there I was driving on I-480 minded my own business, 60 or 65 miles per hour. And then what do I see? I look over to the left, and there's Hallie's mom, my ex-wife Shannon, half her body hanging out the window, seemingly cheering for me, with her arms waving up in the air. I imagine her saying, “yay, Hal, go!” It was a beautiful moment. It was so exciting just to run into someone I know on the highway. There was Shannon's excitement just cheering me on. Like, “Hal, you're out of bed, you're out of the house.” There was amazement and disbelief in her eyes. It was an exhilarating and delightful moment. I just wanted to share it with you. I wish I had a picture. It stuck with me all afternoon.

I sent Hallie a voicemail to tell her about this interchange between her mom and her dad on I-480 and I learned that Shannon was on her way to the airport to visit Hallie. It was one of those moments of serendipity that everything had to go exactly as it did that morning to make her car pass mine at just that moment and have that wonderful exchange.

I'm so grateful today to be feeling just a little bit better. It makes all the difference in the world, just to be a little bit better. You know, 2024 was a rough year, and even the beginning of 2025 was rough. This illness is a one day at a time illness. I never know what body I'm going to wake up into in the morning.

Lately, it's been consistently a little better. I am not as ill. I'm not as weak. My nerves are not as sensitive. My ears are not ringing as loud. I'm able to eat and my breathing is calm. I'm falling asleep and I'm sleeping through the night. I may have a minor flare up, but I'm not having any of those devastating, life-altering crashes that I was having last year. I'm not using Ativan and I'm very grateful. I still need to spend much of my day resting, but these are definitely some better days.

Of course, there's no rhyme or reason to it. I'm not doing anything different. I am taking two and a half milligrams of Abilify every day. But I just can't imagine that's having this effect.

I think it's just the random will of the illness. It does what it wants, and right now it just decided it's gonna ease up on me a little bit. It said, “Hal, you deserve a little break. I'm gonna give you a little bit of summer time.” Yeah, thanks ME/CFS.

Here's another story about celebrating being just a little bit better.

A couple weeks ago, I drove to Oberlin College just for an afternoon at my beloved Unitarian summer camp, called Summer Institute that happens every year in July. And I'd been going for 25 years up until the pandemic, when everything changed and I got sick. But I went for an afternoon to Summer Institute, and while I was driving up there, I called my daughter, Hallie, and I said, “Hallie, guess what?” And she said, “What, Daddy?” the way she does. And I said, “I'm going to Summer Institute. I'm in the car now, and I'm on my way.” And Hallie was so excited. She was so excited for me and so happy for me. Her dad was out of bed in a car the way she remembers me.

Later that afternoon, I got a text from Hallie. It said this, “I am literally so happy you're able to go to SI, that literally made my entire month. I'm beaming and floating around my apartment.” Yep, thanks Hallie.

So I'm here to spread a little bit of the good news today, your friend Hal is feeling just a little bit better. Thank you, God.

You know, I don't know what to expect tomorrow or the next day. Today has been literally one of the best days I've had in a while, driving up to Solon, I really enjoyed the 12-step meeting. You know, I take the wheelchair everywhere I go. It's really convenient. I pop it right up onto the rack in the back of my car.

And then on the way home, I stopped at Giant Eagle to do a little grocery shopping. I love grocery shopping. And thanks to all the times that I've bought from Giant Eagle on Instacart, I had $75 worth of rewards. So my groceries were free. Yay! Free groceries from Giant Eagle! $75 worth. It doesn't get much better than that.

Well, I'm gonna close off this episode by sharing some big news with you. Yeah, with all these better days, or with this handful of better days that I've had, I made a decision. I bought a lying down plane ticket to England. Yep, some of you may know that I've been in a long distance love relationship with a woman in England named . We're a Substack couple. We met on Substack back in October of 2024 and we've been hanging out on WhatsApp and FaceTime ever since. It's been beautiful. She's an amazing person and we have a wonderful connection.

And guess what? In September, God willing, I'm going to England. Along with my traveling companion, Annette, we are flying to London, England, where Emma's mom is gonna be picking us up, and we're gonna drive the two hours north to Warwickshire, where Annette and I have an Airbnb waiting for us in the rural English countryside, just a few miles away from Emma's house and Emma and I are gonna meet for the very first time.

Yep, I'm coming. I'm coming to England. Oh my god, yes. I can’t wait to tell you about it.

So that's the exciting news I wanted to share. We're counting the weeks down. It's down to about seven weeks until Emma and I meet for the very first time after 10 months. It's a big deal for both of us. We've been hoping this would happen. Like me, Emma lives with a nasty version of ME/CFS. So our ability to travel, our mobility is very limited. So I'm taking this opportunity of feeling just a little bit better to hop on a plane, lying down all the way, and hop over to England. Can you believe it? Yay.

Everyone. That's my story for today. I'm gonna keep it short. Thanks so much for listening. Thanks for caring. Thanks for hanging out here on Substack. Remember, you got a body. Go live in it. If you're having a better day, congratulations. If you're having a not so better day, hang in there. You never know what tomorrow's gonna bring. All right. I love you. I care about you. I'm still here. Stay in touch. Bye, bye.

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Hi. Welcome. I’m sending a big “Thank you!” to all the subscribers of “Living in a Body” and an even bigger “THANK YOU!” to the 91 paid subscribers. Your support means so much to me. I appreciate you.

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Fallow Time

(Press PLAY above)

I guess I could stop right there. Got nothing to say and don't know how to say it. I could turn this machine off right now and lay back down and do some more resting. But I'm so sick of resting. I'm so tired of resting. I'm tired of these limitations. I mean, come on, it's almost the first day of summer. We should be out riding bikes and jumping naked into the quarry, doing all the summer things we used to do. I'm tired of being sick, tired of being in bed.

But if I can't do all those summer things, I'll settle with just making something. You know me, I love creating. I love making things. Since I gave up all the other drugs, it's my drug of choice these days… and my rations are so sparse. Doing.

I love me some doing. Just give me a whole batch of doing. Give me a whole day of doing, I'll be happy, at least for a little while. That's what I want. Just some doing. Historically, give me a choice between a project and a person, I choose the project. And I've paid the consequences; doing never really got me where I wanted to go. I know now it's the being, it's the being with — being with others. I still got a lot of work to do in that area. It doesn't come naturally to me. I've spent much of my life lining up project after project. Never took the time to master being with myself and with others.

It's the relationships.

That's what my dad always said. He said, “Son, it's the relationships.” I was heading off to college, and I remember him making it clear to me, “Son, it's the relationships that are important.” That's what he said. And now I say, “But Dad, I'm scared. I'm mostly house bound, and I spend all day in bed. Being with people takes so much energy, and I have so little energy. What do you say to that, dad?” I wish I could have one more conversation with him.

You know, it just occurred to me that today is the eight year anniversary of my dad's death. Maybe my mom, my three sisters, my daughter, and I'll head out to his gravestone to say hello out there by Standing Rock. I'll take the wheelchair. Yeah, that's a good idea. Go out there and kiss the grave.

He was an incredibly wise man. He was really a genius. I often wonder if my dad was lonely in the world, though. It was hard for anyone to come up to his level of intellectual capacity, but he was focused on service. He was focused on serving others. Every Saturday morning, my mom would give him a list of chores, and he'd get on his hands and knees and clean the living room floor without a single complaint. Having worked all week, he knew that his role was to serve my mom. He spent his life serving his family, and he served the earth. He served the poor, served the less fortunate.

His son - that's me - is more of the self-centered variety. Yeah, more focused on “Me, me, me. What do I get? When do I get to do what I want to do?”

That's probably an exaggeration. I've done my share of serving others, but you get the point anyway.

It's interesting. They say that the self centered life does not lead to contentment. So that's what I've been working on, how to get get outside of myself and serve others. It's not easy when you spend all day in bed, mainly thinking about … myself.

Anyway, my three sisters and my daughter are in town this week. I'm blessed, truly blessed. They're walking downtown right now and I'm laying in bed feeling sorry for myself. So I figured I'd make an episode, see if I can get some of this stuff up and out. See if I can make some connection with you. Thanks for listening.

I guess the reason I create - besides the fact that I love the creative process, I love firing synapses and putting puzzle pieces together to make something new - but really, I'm hungry for connection, even though I have a tendency toward isolating. I'm starving for togetherness, even though I've spent most of my life living alone. I'm dying to live in community, to feel that closeness, to dance in the circle and sing around the fire.

Yeah, that's what I want.

All I can do from this bed is to tell my story. So here I am - gonna tell my story for a few minutes.

It's the middle of June. The windows are open. The wildflowers came back this year, and the poppies are in full bloom. And this is my first post in over a month.

I've been very aware of that. It's kind of been hanging over my head. It's been a fallow time for me lately, and I'm not particularly comfortable with it. I just haven't had it in me to create. I don't know what to say, and I don't know how to say it, and I'm scared to say it. What if I was really honest? All the battling thoughts, all the sadness and the grief, all the doubting and the questioning, all the loneliness, all the fear and all the discomfort, all the hiding under the covers, and the wishing things were different. What would it be like to really be vulnerable about what's going on inside? It’s sounds really scary to me. Maybe I’ll leave that for another day. The podcast is called “Living in a Body.” I could just give you a weekly list of all my symptoms, and leave it at that. But who wants a list of symptoms?

Here we go anyway.

This is what it's been like living in my body. It's 2025. I'm 59 years old, living with moderately severe ME/CFS. Here we go.

I've been going through another rough patch, maybe not as rough as it's been, but I haven't been sleeping lately. Insomnia. Sleeplessness, just occasional dozing is all I get. It's been brutal. I get into bed and I get this, this restless legs feeling - restless whole body - and I roll from side to side, I turn from side to side, try 100 different positions, and nothing makes me fall asleep. Eventually, around three o'clock or four o'clock in the morning, I doze off for a little while, and then I'm up again at five, five-thirty.

It's crazy. It's like my sleep button just isn't working. I don't even sleep during the day. I just doze. It's been brutal. Add the insomnia and the sleeplessness to chronic illness - it's been a very challenging season, as seasons go. Another added thing to my sleeplessness - I have arthritis in my right shoulder, and it's like a crumbly, fragile kind of bony pain. I can't lay on that side of my body, so I'm limited to one side of my body, and it's … I never realized. I guess I've known for a long time how important sleep is, but I'm realizing it to a very big degree now.

Oh, and on top of the sleeplessness and the pain in the right shoulder, I've got vertigo at night, so I lay down and the room starts spinning a little bit. This body of mine is just 59 years old and kind of falling apart. It's been rough.

I look good, though. Not as good as I used to look, but I don't look sick, I look healthy. That's the crazy thing about this illness, except for the psoriasis all over my fingers and all over my legs, the illness is invisible.

Today. I just feel so void of energy. I got no oomph. It's like my tank is running on empty. I got nothing in the tank, but my Substack’s have been hanging over my head lately, and I decided to finally turn on this microphone, and see what comes out. I'm glad I did. I'm glad we had this time together, me and you talking about nothing.

I think I'll finish off by reminding us - reminding me - of this, this moment, this miraculous moment. This is the moment. This is the moment that I have. All those other moments are just a figment of my imagination. This is the only moment, and I have a choice in this moment of where to put my focus, and in this moment, I choose gratitude.

Thank you, God, for this moment. Thank you - I get to be alive. I'm thinking of all my friends that don't get to be alive anymore. Thank you - I can breathe without assistance. Thank you - I can eat. Yeah, thank you for my daughter, the fact she has three wonderful aunts, and the best Bestie ever, and thank you for the phone call I had just a little while ago with my friend Aiden. We made a nice connection. And thank you for my girlfriend Emma that I get to talk to tomorrow on FaceTime. Hopefully we’ll get to meet someday.

Anyway, I'm thinking of you. Mainly I'm thinking of myself, but I wish I could have you over. I wish we could sit around in the living room and take turns telling our story. I guess we'll have to settle for the comments section of this Substack. So feel free to leave a comment. Tell me everything. Yeah, I'd love to hear what's alive in your life today. If you've got symptoms, tell me all of them.

All right, thank you. Hey, remember, you live in a body. Take advantage of it while you got it. It's not going to be here forever. Enjoy every moment, even if it's not easy, even if it's not easy, just say yes. That's what I'm gonna try to do as I get ready for this long night of sleeplessness. Oh, man. Thanks so much for being here, everybody. Enjoy the day, and talk to you next time. Bye, bye.

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Hi. Please see additional resources to learn about ME/CFS at the bottom of this post. This episode was produced as a podcast. Press the PLAY button above or read the full transcript below. Thank you for being here. Hal

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Who Cares

So I missed ME/CFS Awareness Day again this year. It was May 12th. I'm just a few days late, but here we are just in time for my Substack going out on Saturday. I pulled together a couple of my friends, and Peggy Munson, and we are going to do our best to tell our story… tell a little bit of our story around this illness — in hopes of making a few people aware. So we'll jump right into the middle of the conversation between Emma and myself. Emma begins with a little story. Here she is. Emma Kitchen.

Emma
So I was an avid rock climber and at the time I became ill, at the exact time, a girl that I used to climb with had a climbing accident and became paralyzed below the waist, and she got a lot of attention (rightly so, because it's a horrific thing to have happened to her) but the whole community came around her and she got loads of get well cards, loads of support. She had journalists around her. She became like a local celebrity. And I didn't even get a get well card. You know, nobody cared at all, like they showed no care whatsoever.

And within a year, she was back at work, she had an adapted flat and she was skiing in the Alps on adapted skis and she'd written a book about her accident. She was like a local celebrity because of her accident and there was me, lying on a bed unable to speak. You know, even 13 years later, still have not been given my life back as it was. Oh, it's just so unfair, isn't it?

Also at the time in my climbing club, two people got bowel cancer. And of course, there's loads of sympathy and loads of empathy. I even spoke to them at the time because I was chronically ill, and was trying to support them through the journey, you know. And again, like, a year later, they're both fine. They're both having adventures all over Europe, and they've got their life back.

I don't know it's just… normal illnesses gain so much sympathy and support from family and friends in the local community, and then there's us with this condition, and nobody cares. Nobody bats an eyelid. And I don't understand it, because the level of suffering that goes with this condition is just obscene and we don't get any credit for it. We're just a bit tired. I'm just a bit tired. It's like, that's what gets me. Do you know what I mean? Like, all of the attention, but you get the attention, though, don't you, Hal? You do get it? Yeah, you do.

Hal
I get some attention.

Emma
Yeah, but that's such a unique experience in this community, isn't it? That your condition seems to be acknowledged and you have supportive people that care and show interest and hear you. I think that's such a unique experience. I think you would struggle to find an illness that is as isolating as this one.

Hal
I was mentioning this post and talking about ME/CFS Awareness Day, and you said, “Nobody cares about ME/CFS awareness.” Would you talk more about that?

Emma
(lol) No. I said, “the only people that care about ME day is people with ME.” Like, nobody cares. Do they?

Hal
Say more about that? Like, what's your what's your experience about nobody caring?

Emma
My personal experience of nobody caring is that nobody has shown me that they cared. So only my mum, because I live with her and she's my carer, has taken an interest. None of my family have even bothered to find out what the condition is, shown any kind of concern or interest. My friends the same. It's just nobody cares. Doctors don't care. Nobody knows what it is. Just nobody cares.

I mean, if you had that experience though of nobody caring or… you haven't, have you? You haven't had that experience.

Hal
Well, it's easy when I'm home alone at night in this big house all by myself, it's easy to start thinking that nobody cares, but I do have a nice handful of people that care a great deal.

Emma
Yeah, I suppose that's because you were such an important part of your community. But for people who haven't had that big social life. When you go into this illness, you know, it's just so isolating and you just feel so uncared for and unsupported, and it’s just…

Hal
What's something people could do to show you that they care?

Emma
I mean, just a quick Google on what the condition is that would be a great start.

Hal
Yeah, a quick Google. All right, everyone, that's that's your assignment for the day. A quick Google.

Emma
What about for you?

Hal
I don't know.

I was just thinking today. It's such a gorgeous day outside and I was thinking. Who wants to think about ME/CFS? It's such a depressing subject. People are out enjoying their lives. So, I guess what I would hope is that people take a few minutes to read this post. (see additional resources below) And I guess I want people to know that even though the weather is great outside, there are still many of us living in bed with this illness.

Emma
Do you know, I think what's so hard is it's so hard to explain how awful it is. It's so hard to explain how it feels in the body. It's impossible to even describe it to a doctor. You know, it's just so isolating, because it's so hard to share the experience of what it is.

You know, I remember I went to see a specialist. This is a “specialist,” air quotes around that. And he was like, “so I believe you're feeling a bit tired,” and I'm like, “No, I've just spent the last year unable to go to the toilet, unable to speak, unable to chew food, unable to sit up, unable to have daylight in my room. And you're just saying I'm feeling a bit tired.” And that's the specialist.

That's British, that's British healthcare smashing through. And it's terrifying. It's terrifying to be this ill and to have nobody supporting you and holding you in any kind of nurturing medical… you know, what's the word? I don't even know what the word is.

Hal
Well, Emma, it's great to hear you talk about this. I just listened to the recording of Peggy Munson. She sent it to me. It's a pretty intense picture of what it looks like for many people who don't have the care that they need.

Emma
Yeah. It's a similar picture here, though, as well.

Hal Walker
I know. Everywhere. Imagine, imagine other countries. Is this a worldwide illness, Emma? Or is this mainly just in England and the US?

Emma
From what I understand, it's very heavy in the Western world. It's more present in the Western world, but it is everywhere. It's weird, isn't it? And it kind of exploded from nowhere in the 80s. It’s such a weird thing.

I can't wait for them to find out what it is, just for that validation, you know, that's probably all I hope to ever really receive in my lifetime, just the validation, instead of being treated like I'm some kind of, you know… hypochondriac.

Hal
Emma, let's listen to Peggy's thing, and we'll come back and finish this off after we listen to Peggy.

Emma
Alright, let's go for it

Peggy Munson
This early May marks my 33rd year of getting sick with postviral ME/CFS and May 12th was also International ME/CFS Awareness Day. Thirty-three years of this illness is such an impossible hell to quantify. Even in my best intentions of writing a blog post about it, I could not pull it off for today, but will try in the coming weeks and months.

Most of those 33 years have been spent in some reclined position, usually my bed, feeling sick on a deep cellular level most of you probably can’t imagine unless you have the misfortune of suffering from Long Covid. For a large part of that time, I couldn't even have people too close to me and talking to me due to extreme sensitivity to sensory stimulation that leads to brutal neurological symptoms. For sixteen years, I have been almost completely unable to talk on the phone except to leave messages or record text audios. For over a quarter of a century, I have been unable to travel any real distance.

Despite how extreme these symptoms and my dozens of others are, my family has utterly refused to be my caregivers for 33 years. And for almost two decades now, they have followed the advice of terrible, unconscionable therapists and tried to extinct any mention of my illness. The resulting estrangement from my family is what led to my full dependence on Medicaid services, the same ones that could be cut any time, as Medicaid is the primary source for all nursing home and in-home care in this country.

Any cuts to Medicaid programs that affect disabled people will simply end the lives of those of us desperate enough to need these programs. Right now, somewhere between 700,000 and 800,000 people in the US are on wait lists to get on the personal care attendant (PCA) waiver I use for primary caregiving, to simply stay alive. These are all people who qualify for Medicaid and have extremely-limiting illnesses and disabilities, and many, if not most, will wait years to get care they need urgently, like tonight. To cut such Medicaid programs isn’t even “soft” eugenics: it’s just eugenics. Please make no mistake about how urgent and serious this is, including for anyone you know in a nursing home as it’s likely Medicaid-funded.

The “best” thing about being this disabled is learning what it is to be disabled and how senselessly (in the US at least) people are forced into unsurvivable circumstances because of it, from the sub-poverty wages of SSI and SSDI, to the utterly absurd hardship of getting on the PCA program, to the insane caregiver shortage that completely relies upon unpaid family caregivers to willingly step up.

Please honor my “sickerversary” and ME/CFS Awareness Day with me by watching some ME/CFS awareness videos on YouTube, and educating yourself about the current care crisis in America and what cuts to both social security and Medicaid could mean for disabled Americans.

Mostly, I just want to say that whatever any of you are going through, you are much stronger than you think. I am a survivor of thirty-three years of unimaginable torture inflicted by an illness that is underfunded, underrecognized, and totally incurable at this point. When I passed the 3-year and then 7-year mark – already significant in the 1990s – I knew already that less than 4 percent of people significantly recovered from severe ME/CFS after that point – stats I now see Long Covid patients throwing around. I still hoped and tried everything imaginable to get better and recover, but the best advice I heard recently from an ME/CFS patient is that radical acceptance and not clinging to an idea of reclaiming one’s former self is the only way to go forward without further injury and I take that to heart every day. I accept this is my life, and I do whatever I can to make meaning out of it.

Hal
Wow. Thank you so much, Peggy Munson. Thank you so much for sharing. I think you already know this, Peggy, but you're my hero. Ever since I met you, I've just been amazed at your ability to survive so beautifully with such challenging circumstances. The fact that you keep going the way you do keeps me going as well. Thank you.

So Emma, Peggy ended with this idea that in order to avoid further injury, we need to have acceptance and let go of our former self. What do you think about all this?

Emma
Yeah, I mean, what a powerful way to to end her message. And I agree. I agree completely. I think it's the only way. And for me, you know, it was just… see, I don't know if I want to talk about it… I don't want to say that. But no, I don't… (lol)

Hal
Go ahead, Emma! You're doing great.

Emma
I was just thinking about how before I found acceptance, for me, it was suicide. You know, that was the only thing that gave me any relief, thinking the fact I could kill myself, that was the only thing that kept me going, was knowing that I didn't have to keep going. And now, you know, I reached a place of acceptance, and it wasn't until I'd reached that acceptance.

But coming to acceptance is such a painful process. It's such deep grief work, and it's terrifying. And I put it off for so long, just clinging to hope that something was going to change. I was going to get better. And like Peggy, you know, she's on call seven years, and that was, it was like that for me. I was like, God, God Almighty. It's like nine years, 10 years, you know, 13 years. And I don't know you, just at some point you just have to come to the realization that this is your life. And I think as soon as you reach that place, it's almost like you can start seeing the beauty of life again. Because it's almost like, while you're putting out kind of hope that something's going to change. You miss this very fine, delicate aliveness that can be felt even in a sick body, and once that gateway to acceptance has been walked through, as painful as it is, you can become alive again, even in the most challenged and restricted body, there can be life and vitality discovered. And it can open up a new experience of life.

I say to my friend who has M.S., it's like, it's not that you've got a worse life now. It's just it's a different life, and as soon as you can get your head around the fact that it's different and let go of the life that it was, you know you're going to suffer, but as soon as you come into that acceptance of a different life, right?

Hal
That's what that's what Peggy says. She says, “not clinging to an idea of reclaiming one's former self is the only way to go forward.”

Emma
Yeah. So powerful. Yeah. She said it much more succinctly.

Hal
Well, Emma, this has been great. This is ME/CFS Awareness Week, as far as I'm concerned and we are doing our little part in spreading the word about all the people out there who are not getting the care they need. Thank you Emma.

Emma
Thank you, Hal and thank you, Peggy.

Hal
What are three things that people can do today to to help spread the word. Like Peggy says, “look up some YouTube videos on the subject.” I need to find one to share with everybody.

Emma
Yeah. I mean, that's what's that film. Is it “Unrest.”

Hal
Yeah, watch “Unrest.” That's a great way to find out more.

Emma
Please watch it..

Hal
Please watch “Unrest.”

Emma
Also check out . I mean, have a look at how bad this can get. Because people just hear the word fatigue and shut off. It's not about being tired.

Hal
I'll share Whitney's post too in this thanks, Emma. Thanks, Peggy, thanks everybody. Hey. We're wrapping it up here. Episode 111. Yeah, hey, remember, you live in a body. You have a body. Yay! I have a body. I’m gonna love it. I’m gonna enjoy it. Whatever you got. Love it. Because it's not going to be here forever. Thank you so much for being here. Thank you for listening and have a good day. Have a good week. Bye.

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Learn more about ME/CFS below:

World ME Alliance

Whitney Dafoe’s Substack

Life in the Void

This Is ME/CFS

♿️ 𝐀𝐜𝐜𝐞𝐬𝐬𝐢𝐛𝐥𝐢𝐭𝐲: 𝐋𝐢𝐬𝐭𝐞𝐧 𝐭𝐨 𝐭𝐡𝐢𝐬 𝐩𝐢𝐞𝐜𝐞 𝐫𝐞𝐚𝐝 𝐚𝐥𝐨𝐮𝐝…

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a year ago · 17 likes · 3 comments · Whitney Dafoe

“Unrest” Documentary

Open Medicine Foundation

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Our Vision

Open Medicine Foundation (OMF) envisions improved health care for patients suffering from multisystem chronic, complex diseases with collaboration between patients, clinicians, and researchers.

Our Mission

• Support collaborative medical research to find effective treatments and diagnostic markers for chronic complex diseases with initial focus on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS).

• Keep the engaged community, clinicians, and researchers informed about OMF research projects and results.

• Bring together “thought leaders” from around the world to brainstorm and participate in targeted initiatives.

• Encourage and engage the patient community to take an active role in their health care.

• Support health care education about chronic complex disease.

• Advance translational research and information-based research into optimum clinical medicine, including the diagnosis and treatment of these poorly understood diseases and the under-served patients.

Welcome to “A Body of Work.” It’s the occasional Tuesday space here on “Living in a Body” where I dig deep into Hal history and pull out a musical gem. Be sure to click the Soundcloud links below to hear the three songs that make “The Ways of the Whale — a Trilogy.” Thank you!

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The Ways of the Whale (A Trilogy)

In the early 2000’s, Mary Sheridan and Sue Reed approached my table at the annual Ohio Arts Council Arts-in-Education Fall conference and asked if I would come to Tussing Elementary School to help fulfill a vision. Ms. Sheridan was an educator on the cutting edge of arts integration who was teaching her students about the eco-system of their own neighborhood while connecting them with a sister school in Barrow, Alaska. I ended up spending many weeks at Tussing making music with the students and writing a trilogy of songs about a whale who travels all the way from Barrow, Alaska to Pickerington, Ohio

I’m sorry to say that Mary is no longer living, but I know that the whale’s tale lives on behind the school. I have rarely had the opportunity to present these songs as a trilogy, so I’m grateful to share them with you today. The three songs tell the whole story. I hope you enjoy.

“This is the story of a humpback whale that swims all the way from Barrow, Alaska to Pickerington, Ohio. The students at Tussing Elementary School invited all the animals to come live in the pond out behind their school. Who would’ve thought that a humpback whale would respond to the invitation. She’s still there today in the form of a 20 foot tail. She’s busy teaching anyone who will listen… the ways of the whale.”

Half Way from Pickerington

Half Way from Pickerington all the way to Reynoldsburg
There’s was a farm rollin’ acres of fields.
There was corn and wheat, a swamp and a stream
And it all made a home for the animals and trees.
And the whale swims free in the ocean.

Well I was a child on the earth just a few years ago.
Me and my family were moving to find us a home
In a town that was willing to grow.
Mom and Dad bought a house right up off Tussing Road
And the whale swims free in the ocean.

Well the stores and the houses grew up and the farm was torn down.
Big city lights came closer and closer.
The sound all around was the change of our town.
Then a new school was built on the old fertile ground.
And the whale swims free in the ocean.

My friends and I grew in our homes and in our Tussing School.
We became a family in the old fashioned way that we do
Me and you, livin’ good, right and true.
But we wondered where had all the birds gone and the other animals too.
And the whale swims free in the ocean.

So, we learned about the wildlife that left since the people moved in.
Made an invitation to come back and join us again.
Workin’ hands put some love in the land.
And we sang to the birds tell the world of our plan.
And the whale swims free in the ocean.

From a thousand miles away came the call of an old humpback whale
Comin’ to the end of a long life of swimming in style.
She would die in the form of a tail
And forever she would be a teacher of the ways of the whale.
So she started swimming home to Ohio.

Humpback in Ohio

My journey begins in the Arctic Ocean North of Barrow, Alaska.
I’ll swim through the Bering Straits into the Bering Sea.
From North to South, I’ll soar the waters of the Pacific Ocean
Through the Panama Canal into the Caribbean Sea.

And then North through the Yucatan Channel,
I’ll swim to the Gulf of Mexico.
I’ll race to the old Mississippi.
and then run to the Ohio.

Chorus
I’m a whale on a journey underneath the sun
And I’m swimming home to Pickerington.
A humpback in Ohio betcha never thought you’d see
But I’m on my way so be looking for me.

My journey continues as I move to the mouth of the Scioto River.
I swim upstream Big Walnut Creek, I’m almost home.
I turn to the east, Blacklick Creek, listen close for the gift I’m bringing.
As I leap through the brook of old Tussing Farm, you’ll hear my song.

So, People gather round with your children
and bring your grandparents, too.
You gotta carry me over this portage
To the pond of the Tussing School.

I’m a whale on a journey underneath the sun
And I’m swimming home to Pickerington
A humpback in Ohio betcha never thought you’d see
But I’m on my way so be looking for me.
I’ll see you in February.

Our Home is Your Home

The Whale has come. Her journey’s done.
Time to celebrate such a wonderful day.
’Cause we’ve been waiting’ such a long long time
For the day to come, for the whale to join the party.
Everybody shout! Let the word spread out!
What a welcome home. It’s been a long long road.
And now our home is your home today.
Our home is your whale — you humpback whale.

So, what are you whale a gonna teach us?
What is the road you’re gonna lead us on?
How is your beauty gonna reach us?
How are we ever gonna learn your song?
I wonder if the whale might change us.
I wonder if the journey goes on and on.
Maybe the whale’ll be famous.
Maybe the world is gonna sing her song.

Thanks so much for listening! Here’s some color for you on this Spring Day. If you look closely, you’ll see the whale’s tail. ❤️

Hi. Welcome. I hope you’ll click PLAY above to hear the intended podcast version of this episode with original music. (16 minute listen) Enjoy.

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Psoriasis and a Mouse

Every Monday afternoon, my friend Bruce comes over at four o'clock to meditate with me. He shows up at four and we meditate for 20 minutes, we say a few kind words and then we do a really friendly fist bump. Then he heads out the door. Well, yesterday, while we were meditating, I heard some scratching coming from the other room. I heard it… and then I forgot about it. And this morning, when I went in to use the bathroom, there in the toilet, floating on the surface of the toilet water was a dead mouse — a black mouse with big ears just floating there, dead — with little mouse droppings on the floor of the toilet. It was so weird.

The interesting part of this story is… first of all, how did a mouse get in my house and how did it end up in the toilet? Who knows how long it's been hanging around here and who knows if there are other family members around. I hope not. I'm guessing that it climbed into the toilet to get some water and once it got in there, it couldn't find a way out.

But the really interesting part of this story is… my girlfriend Emma and I are listening to a book together, a book called Sipsworth by Simon van Booy. It takes place in England and it's about an old woman who befriends a mouse that she finds in her house. It's such a lush book. Every single line feels like poetry and it's narrated by a woman with a beautiful English accent. Sometimes I'll pause the audio just to repeat a line that she says that I find so beautiful. The book is read by Christine Rendell.

Here she is: “before returning to the couch, she glances into the pie box where a gray head with long whiskers is peering out through the hole.”

So it's been such a joy hearing the story of an old woman who gained so much purpose and meaning by befriending a mouse. But I didn't get the chance to befriend my mouse. The first time we met, she was dead.

In the realm of interesting and weird connections, in the realm of coincidences, I have a whole ‘nother unrelated story to share with you. It goes back to 1993 when I moved to New York City to become a famous folk star. Actually, I never moved to New York City. I moved to my friend JP's parents’ house in Great Neck, Long Island. I was a bit of a mess back then. I had long hair and I wore messy clothes. And I got a little bit lost in the home-rolled cigarettes, the coffee, the muffins and the marijuana.

So I'll tell you more about my escapades into the city some other time. But for today, I just want to tell you about sitting down in JP's parents basement in the middle of the afternoon, high on pot, improvising song lyrics into my old four-track recording machine — right off the top of my head. You see, that was my specialty — improvisation. I used to do a show called “100% improv.” That was actually just a cover for a guy that was chronically unprepared. I didn't have the discipline and the focus to sit down and actually write a song. So I would smoke a little dope, turn on the recording machine and let the lyrics fly.

Here's the interesting part. In these afternoon wild, creative recording sessions, I would just try to open my mouth and let whatever sounds come out. Free of inhibitions, my goal was just to let it flow, to be loose and let the words out. Later on, I would sort through my improvisations and try and find something worth keeping. Interestingly, one sound or one word that used to come across my lips was “psoriasis.” For whatever reason, I don’t know. I didn't have psoriasis. I didn't know anything about psoriasis, but it was one of the words that would regularly come out of my mouth.

Okay, 10 years later… yeah, we're skipping a whole bunch of the story, as a matter of fact, a whole decade. But 10 years later, my fingernails started doing weird things. They started having ridges and the tips of them started coming away from the skin and I started getting this weird sore on my behind and I started getting flakiness in my hair. I would scratch my head and all the snow would fall to the pillow. It wasn't much later that I learned that I had psoriasis. It's an autoimmune condition where the immune system attacks the skin and causes big red blotches. I had it on my behind and on my fingernails and on my scalp. Today, I have it all over my body.

Yep, after all those sessions of singing “psoriasis” in JP's parents basement. I ended up with psoriasis. I guess it's kind of like reading that book about the woman and the mouse and then finding a dead mouse in my toilet. But the connections don't end there. The story goes on.

We're gonna jump another decade to 2013 when I was in Kauai — again, with my friend JP, teaching a harmonica workshop. JP and I and a couple friends were strolling along the black lava rocks down below Ben Stiller's mansion when a rogue wave swept two of us into the ocean and only one of us made it out alive. That was me. Our friend Ash was last seen floating face down into the ocean. Yeah, it was a terrifying and traumatic event for all of us. I was life-flighted over the cliffs of Kalihiwai Point to safety. Yeah, my whole being experienced some great trauma that day. But I survived and I made it home to Ohio to see my daughter and my mom and my family.

And not more than just a few weeks later, my thumb swelled up. I had an aching, swelled thumb and also I was experiencing numbness in my arms. So I went to the internet and I did a little search, “aching, swelled up thumb with numbness in the arms,” and I came upon something called “psoriatic arthritis.” Now, psoriatic arthritis is a very frightening illness, especially if you find out about it late at night on the internet, like I did. The very first thing I ever read about psoriatic arthritis was a personal account of someone experiencing a sudden onset of a wave of psoriatic arthritis sweeping through their body and suddenly, overnight, becoming disabled with great pain.

And I got it into my head. “Oh, shit. I have psoriatic arthritis,” which is an autoimmune condition related to psoriasis, where your immune system attacks your joints and “there's a chance that this thing could sweep through my body with a sudden onset.” And I got scared. And guess what? Not more than a couple weeks later, I woke up in the middle of the night with the experience of a wave of psoriatic arthritis sweeping through my body. I kid you not. It was like a fever. The very fear that I had heard about on the internet came true. Remember, I was telling you about that mouse that I've been reading about that ended up dead in my toilet? Yep.

Only weeks after being swept into the ocean by a rogue wave, only days after reading about it on the internet, I was swept into the world of psoriatic arthritis by another rogue wave. I woke up with arthritis in all my joints, both knees, both elbows and both hands. I remember that morning walking through town, all the way over to the house of my girlfriend at the time, in a desperate state of disbelief, in a kind of dream state of fear, not knowing what was going on in my body, completely powerless and afraid.

It was kind of like several weeks earlier, being in the ocean, being swept underwater, realizing that the ocean didn't care that I’m Hal Walker. “What do you mean!? How could this be!? How could this be?” But it was. Psoriatic arthritis didn't care that I'm Hal Walker and I had all kinds of much better plans. Eventually, I made it over to the rheumatologist who officially diagnosed me with psoriatic arthritis and prescribed something called “methotrexate.” (and that's a whole ‘nother story that we're not gonna talk about right now)

But the coincidences go on. The weird connections go on. The story continues — 10 years later. So, back in 2013, I dealt with a lot of pain in my joints for about a year. But then I had a flare up of ME/CFS symptoms and the joint pain went away. Now, isn't that interesting?

Jump 10 years later, a whole decade later, 12 years later and here I am, just a couple weeks ago, in deep ME/CFS territory — severe symptoms, almost fully bed bound, having a hard time eating, really severe neurological symptoms, having more crashes than I care to count and generally just overwhelmed with the symptoms in my body. Then psoriatic arthritis shows up to save the day. (lol)

No, that's not exactly how it is, but for the last couple weeks, I've been having real bad restriction and pain in my right shoulder. I can’t really lift the upper part of my arm. Fortunately, it's not actually constant pain. It's only pain when I move my arm or think about moving my arm… or when I lay on my shoulder. When I'm just resting, it's not pain. It's just a distant kind of fear of pain if I were to move my arm. The ache spreads out to my back and my neck.

But anyway, interestingly, fascinatingly, some smart doctor should pay attention— my ME/CFS symptoms have eased ups little bit. I can't guarantee the connection. It could be the two and a half milligrams of Abilify that I'm taking every day. But my sense is that my body is working on the psoriatic arthritis right now. The psoriatic arthritis is dominating and therefore, my brain is easing up on the ME/CFS symptoms. Isn't that fascinating?

I think that's all I have to say. That's the whole story. It's to be continued.

For the last couple weeks, I have not been as ill, a little bit less weakness, less illness in my stomach, no crashing and I've been off Ativan for two whole days without needing it. But I've got this damn pain in my right shoulder. It's like a crippling, kind of crackly, awful, kind of hard to describe, fragile, joint, radiating bone pain.

That's the whole story, the story of the mouse. I'm just so fascinated by all these connections, all these weird connections — all these coincidences.

You know, I'm not sure which I prefer, the ME/CFS symptoms or the psoriatic arthritis symptoms. To be honest, I think I prefer the pain over the illness. ME/CFS is so debilitating and so scary. Psoriatic arthritis is debilitating. (lol) Psoriatic arthritis is debilitating and scary, too. But I think I'm not as debilitated — like I've sat here and made this whole episode without an Ativan.

Anyway, that's my whole story. I'm sticking to it. I'm gonna close with a little excerpt from the book Sipsworth that I think is very fitting. Our friend Helen is thinking about the coincidences of her life having met this mouse.

It goes like this, “Could what we call coincidence be something intended with a meaning purposely hidden? That would imply design — a god. But what sort of god would strike down a boy's father at dinner time?”

All right, everybody. It’s Living in a Body. By the way, you have a body. Go live in it. Go live in it! It's not going to be around forever — like that mouse. Hopefully that mouse had a good life. I'm wishing all the best to you and yours. Enjoy the day. Thanks so much for listening. Thanks for being here. I appreciate you. See you next time. Bye bye.

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Hi. This episode is intended to be consumed as an podcast. Press PLAY above for narration with musical examples. (22 minute listen) You’ll find a full transcription below. Enjoy. Hal

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The Harmonica Revolution

You know, eventually we all got to face it.

We got to face the fact that we don't get all the things done that we wanted to get done. Everybody's body eventually… fails. (lol) Yeah, that's a good note to start this off on. Everybody's body eventually fails and all the getting things done comes to an end. We all gotta face it eventually. Yeah, that's the trouble with living in a body. Eventually it doesn't work anymore.

All the plans I had, all the big projects in my head, all the dreams, all the big ideas, all the revolutions I was supposed to make happen. The body fails and some other part of us has to take over — something beyond the physical realm. But I'm still attached to the world and some of my favorite projects probably aren't going to get done. We all got to face it eventually. But here's a little bit of my list…

Like — the Hal Walker song book, the video series for teachers about how to bring Banakula making and playing into the classroom, the how to play “Low Key Gliding” instructional series, re-recording all my songs at a more reasonable tempo because I was too high on adrenaline the first time around, learning the Chuck-a-chucks, learning the cello, learning jazz piano, and writing all those songs that never got written — all the undone projects. Now, I'm not saying none of this is ever gonna happen. I realize that 10 minutes a day of focused attention can accomplish a lot, but I'm over here giving it all I got just to take care of the basics. There's not a whole lot of extra for revolutions.

I'll take one step forward today, and I want to tell you about one of my biggest ideas. It's the Harmonica Revolution of the 21st Century, which was one of my greatest unfinished contributions to humanity. Here's a little song about it, “Ode to the Harmonica.” (To the tune of Ode to Joy)

For many years, I worked with children, teaching them to play the harmonica. I passed out thousands of Blues Band harmonicas all around the state of Ohio and I did most of my teaching in large group settings. I’d teach a whole classroom or a whole grade level or a whole school. You know, I don't remember what the biggest group was, but it was large groups. It was mass harmonica instruction. Each kid with a harmonica in their hand getting a foundation for a lifetime of harmonica playing.

And it wasn't just kids. One of the highlights was teaching prisoners at the Mansfield Penitentiary. It was me in a gymnasium teaching the blues to a hundred hardcore prisoners. I was in the middle of a big huddle of guys playing the “Sesame Street Blues.” It was amazing.

Over the years, I developed a highly effective method for teaching the harmonica to large groups of people. And I'm certain no one had ever done it like this before. It was an original method. And with as much humility as I can muster, it was the best method ever. It was highly effective. If you really want a foundation for a lifetime of playing the harmonica, use this method. Unfortunately, it's not available. The teacher came down with a nasty case of ME/CFS and never got the method packaged for your consumption.

But you should’ve seen us. Students had amazing results making real music on the harmonica within minutes and within days. We had so much fun in schools all around Ohio, lessons that these kids will remember for a lifetime. And I loved it. I loved it so much. (lol) It was so fun! It was so fun teaching the harmonica this way. I never really came up with a perfect name for the method, but it was “The Harmonica Revolution.” It was “Music that Fits in Your Pocket,” a foundation for a lifetime of playing the harmonica, based on two choices — blow and draw.

You know, it occurs to me to mention that nowadays, as far as I can tell, not many people are playing the harmonica. There was a day when the harmonica was like the national instrument of the U.S. In my recollection, every kid had a harmonica in his pocket. Every grandfather played the harmonica for his grandchild. I did my little part here in Ohio to bring harmonicas back into the daily lives of children everywhere.

That’s the Harmonica Revolution — one of the projects that I have not yet finished. I think in schools these days, some kids learn the recorder. But what I wanna say is that I think the harmonica is the ideal instrument for the classroom. It costs less than five dollars, it fits right in your pocket and within minutes, you can be making cool, satisfying, real music — especially if you've got my method. I guess that's the unfortunate part. Thanks to ME/CFS, this method is not available to schools all around the world. It should be. Boohoo.

Probably the best and most recent example of my success with this method was in that one town… Bucyrus, down in Crawford County. It was Bucyrus elementary school. I was over there and I had a year-long residency. I’d drive there once a week. It was a two and a half hour commute. I left at like five in the morning and in all my mild ME/CFS glory, I'd spend the day there, giving everything I’ve got to this school. And one of the grades, I think it was the third grade, we did mass harmonica instruction. There were probably at least a hundred kids in that class. Every week we would meet in the gymnasium — a harmonica in every hand. Their chairs were lined up in rows theater style. I asked the teachers to give me full classroom management. The last thing you want is a bunch of teachers out there trying to “shush” the kids. I had my own methods. So I brought along my almost 20 years of refining this teaching method and by the end of the year, those kids had a powerful foundation for a lifetime of blowing the harmonica.

And I want to share a little bit of my method now. It's so hard to talk about. You have to see it. You had to be there. You had to be there! But I'm gonna give it my best. All right, here we go…

The foundational principle of this method is: in all beginning harmonica playing, there are only two choices, blow and draw, push and pull. And before we ever picked up harmonica, these students would master the push and pull of the diaphragm using hand motions. Actually, it was arm motions. Actually, it was using full body motions — pushing and pulling.

Learning the harmonica is a full body kinesthetic experience of breathing to make music. Before I ever put a harmonica in their hands, I'd say “blow, draw blow.” And they'd repeat, “blow, draw blow.” And rule number one was “hand motions at all times.” Every time they say blow, with their whole arms and their hands and their shoulders, they're pushing. And every time we say draw, with their whole body, they're pulling. Then there's old Hal Walker up there over the course of about 20 years, putting his whole body and spirit into these full body harmonica lessons.

I had this hilarious gimmick that worked every time. I would push and pull so dramatically that I would accidentally, on purpose, slide into the splits and call for the front row to save me. And they would rush around me and pick me up and lift my whole body, to save me from falling into the splits. (lol) It was hilarious.

After we mastered the “push, pull, push,” or the “blow, draw, blow,” we'd speed it up and make it more exciting, like this. “Blow-D-Blow Blow Blow Blow” etc…

Remember, hand motions at all times and the students repeat exactly what I do. It was all “I go, then you go,” illustrating the push and the pull of the diaphragm. I wouldn't even hand out the harmonicas ‘till at least the second lesson. It was my theory that I could teach for a whole semester using just hand motions and these students would become great harmonica players — without a harmonica in their hand. I never actually tried it, but I'm still convinced it would work. Starting with hand motions was fun and accessible, not intimidating. It was like a dance that everybody could do.

Now, here was the key. From the very beginning, those kids are at the edge of their seat. I demanded it from day one — at the edge of their seats, back straight, feet on the ground, mastering the blow and draw. The number one rule was “hand motions at all times.” It's funny. This is all coming back to me now, but it's been years since I've even thought about this. I've been so deep in the illness of ME/CFS.

So… from the beginning, these kids learned who was in charge, and the beauty was, they seemed to be grateful that it was me. We had so much fun together.

While I was developing this harmonica method, I was also developing a highly effective method of large classroom management. And I'll tell you what it was right now. One thing I didn't do was make ‘em pay attention for forty whole minutes. We’d do little spurts of 5 to 10 minutes, right at the edge of their seats — highly focused lessons, very methodical, moving one step at a time.

And then I'd say, “let's take a break,” and that's what we do. I'd encourage them to relax, to talk amongst themselves and for two or three minutes, I would ask them to get as comfortable as they could in that chair. Like, pretend that chair is a bed and lie down in that chair and put your feet up if you want. You are totally free. You can laugh, you can talk to your friends. You can lie there quietly. You can do whatever you want, as long as you stay in your own seat vicinity until you get the signal, which is, (Sung) “cuckoo cuckoo” and immediately the class responds, “cuckoo cuckoo” and then they're silent.

We would go from total managed cacophony to pure silence in mere seconds — and I wouldn't stand for anything less. I made that very clear.

The teachers couldn't believe it. They questioned the chaos, but when they saw how fast I could bring them back to attention, they realized it was something special. It's hard to explain. I was just such a fun version of a military sergeant. It was my only option with a hundred third graders in a gymnasium with harmonicas in their hands. I was very strict and very fun. So after they mastered the hand motions, eventually I'd hand out harmonicas.

And that brought about the second rule, “no individual tooting.” You can toot whenever you want — at home, at recess, when you're on the playground toot all day long, when you're in your bedroom toot, you can toot as much as you want. But when we're in this classroom, there is no individual tooting. When we toot, we only toot as a group. I made that very clear and I said it with a straight face. And they looked at me and they didn't know what to think. There is no individual tooting, N-I-T. And I'd go and say, “What's rule number one?” I'd call a student out. He'd say, “Rule number one, hand motions at all times.” “What's rule number two?” “No individual tooting.” Because there's nothing worse than a hundred harmonicas and every once in a while, a little toot coming out of one of their harmonicas when you didn't want it. I wouldn't stand for a single toot. You did not want to be the kid that got called out for individual tooting. But it was all in good fun. It was all in good, playful, disciplined, productive fun — just the way I like it. And it worked. I had those kids eating out of the palm of my hands.

I loved whenever a kid did something right, whenever I noticed they got it just right — like if their hand motions were particularly expressive and right on the beat or their blow-d-blows were just right, I'd call them out. I'd go over and say, “What's your name?” They'd tell me their name. And I'd say, “Sally, it's a pleasure to have you in my class.” And then I'd shake her hand. Typically, for the first handshake, kids would give a really weak, flimsy handshake. So I'd take that opportunity to give them a one-on-one lesson in how to give a proper handshake.

I taught 1000s of students how to shake hands — “firm squeeze, small shake, look the person right in the eye.” And we would practice it right in front of the whole class. And every time a kid got a handshaking lesson, it was an honor. This student knew she'd done something right and every other kid wanted to do something right to get a handshake. And by the end of the semester, by the end of the class, they knew how to give a proper firm handshake.

Of course, that was before the COVID days when we were allowed just to shake hands at random. I got sick a lot. I mean, I'd shake these sweaty little hands. I shook so many hands and I was always carrying some hand sanitizer around, but it never did the job — all that handshaking. Every Friday, I'd go home and be sick for the weekend.

So eventually, they'd get a harmonica in their hands. And the first thing is, we don't worry about single notes. It's “wide mouth, big sound.” Put the harmonica deep into the mouth. It's called the “deep relaxed tilt.” So put the harmonica deep in your mouth, relaxed lips, covering the holes so no air is escaping, and tilt, tilt the harmonica slightly down. So with the “deep, relaxed tilt,” these kids would cover three or four holes, making a big sound, a full sound, breathing from the bottom of their belly, using the diaphragm, with a push and a pull. And the whole time, one hand's holding the harmonica, the other hand is doing the hand motions.

And then, the cool part about it was, I would ask another student to come up and lead the whole class in “blow-d-blows,” whether it be hand motions or blows and draws on the harmonica. I explained to them that along with learning to play the harmonica comes the responsibility of passing it on to the next generation. So, while they were learning to play the harmonica, they were also learning to teach the harmonica.

So, once we master the blow and draw, all in one place of the harmonica, like holes 1,2,3 and 4. Two options, remember, there are only two choices in beginning harmonica playing. We would move on to down and up and I'd start demonstrating how to go up and down on the harmonica. So now we had four choices — blow, draw, down and up.

The harmonica is all about making music with the breath. That's where it begins. I put off teaching single notes till much further down the road, so the students get used to making music right away, using hand motions, blowing and drawing, going up and down the scale. And then we'd start learning a song. The very first song was… (sung)

You know, the kind of sad thing is, I'm sitting here in my room and there's not a harmonica anywhere nearby. I went my whole life, I always had a harmonica nearby—in the car or in my pocket or on my desk, but they're all downstairs in a box. Someone’s gonna have to figure out what to do with them someday. It’s the brutal reality of ME/CFS. Of course. you never really know. But I’m pretty certain if the Harmonica Revolution were to happen tomorrow, I'm afraid I wouldn't be able to be there. But it's not happening tomorrow. It's not happening tomorrow or next week. But who knows? You know, I remember I had this plan, the “Million Harmonica March on Columbus” was supposed to happen in 2010. (lol) It never happened.

But teaching the harmonica was one of the great joys in my life. And coming up with this system, this method was such a delight and so satisfying. I guess the revolution would have been somehow making this system, or this method, spread all over the country, all over the world, revolutionizing music education. But here we are, living in a body, doing our best, facing the inevitable. Eventually, the body fails and all the getting things done comes to an end.

The Revolution becomes more of an inner experience, a more subtle kind of transformation. And we get to go along with the natural process. You know, we're part of nature and nature is so much bigger than all my revolutions. But we'll see where this leads. Maybe this post here will inspire some young whipper snapper to take up the baton and make this revolution happen.

All right. Thanks for listening, everyone. Thanks for hanging with me for this. It was fun to remember these times. Alright, enjoy. Enjoy living in that body of yours. Don't forget. Enjoy living in that body while you got it, because it ain't gonna be there forever. All right, everyone. I love you. Thanks so much. Bye.

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For more Harmonica Revolution, check out the YouTube videos below.

Please join me in supporting the joint efforts of Open Medicine Foundation and The Bateman Horne Center to create the Medical Education Resource Center (MERC)—a program dedicated to training healthcare professionals worldwide in diagnosing and treating ME/CFS and related conditions.

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An Illness Without a Doctor

In the spring of 1991, I was 26 years old. On that Friday, I ran six miles, took a shower and put on my big, brown sweater to wear to the open poetry reading at Brady's Cafe.

The next morning, I woke up with weird symptoms in my body. Suddenly, I couldn't run across the street without getting dizzy and weak and exhausted. Those symptoms never went away.

I told my dad and he took me to the doctor — his internal medicine doctor in Akron. I don’t remember much about that appointment, but I’m sure he took a bunch of blood tests and I’m sure they all came back normal. I've been going to doctors ever since. That's 34 years of doctors. That's 34 years of all kinds of tests just to rule things out. And they always came back normal.

Somewhere along the road, I came across the phrase “chronic fatigue syndrome” and after reading a few of the stories, I knew that's what I had. But I kept going to doctors. I kept hoping one of ‘em might help me. I kept hoping that one of them might say, “Yeah. It sounds like you have Chronic Fatigue Syndrome and here’s what you should do about it.” But, they just kept taking more tests.

I had an appointment with my rheumatologist yesterday. My expectations were very low, but I was glad to have the appointment.

I started going to see this guy about 10 years ago. In 2013, I almost died in a rogue wave in Kauai. And I came home and experienced a terrifying wave of psoriatic arthritis sweeping through my body. That was when I met my rheumatologist for the first time. That's his specialty — autoimmune conditions. Psoriasis and psoriatic arthritis are a couple of my co-morbidities living with ME/CFS. I remember loving the confidence with which he went around to all my joints as if he was looking for something. I trusted this guy. He’s an attractive guy with a turbin on and a real nice smile.

And yesterday, in the course of the visit, I said, “Hey, what about ME/CFS?” You know, I told him my situation. I'm bedbound. I rarely stand up. I use a wheelchair to go from my bed to the bathroom. I’m having difficulty eating, weakness in my lungs and weakness in my gut. He listened and he wrote down everything I said in his little laptop there. So I said, “What about ME/CFS?” And he said, “Would you spell that?” Those were his exact words. “Would you spell that?” And I chuckled on the inside. (lol) You got to be kidding me, right? But I wasn't surprised. I don't blame him, so I spelled it. I said, “myalgic, M, Y, A, L, G, I, C, encephalomyelitis.”

You know, I live in the world of ME/CFS. I write a podcast that mentions ME/CFS every week. My whole life revolves around this illness. I'm part of a support group on Zoom, 100 people on there all living with ME/CFS. And, one of the most relatable hashtag in my life is #millionsmissing. My girlfriend has ME/CFS.

My rheumatologist, though, it's not on his radar. Apparently, he hasn’t been listening to “Living in a Body.” He had to do a little Google search for the illness while we sat there. And that's not an unfamiliar story. That's been the story for all these years — 34 years of doctors. They've never heard of myalgic encephalomyelitis, also known as chronic fatigue syndrome. Or if they have, they don't know what to do about it.

So we're left on our own. We're left to figure it out on our own. One of the most debilitating, complex, multi-system illnesses in existence. And it's almost impossible to find a doctor that knows anything.

I've been having major difficulty eating. In fact, I've been having crashes after eating. It's terrifying. It’s coming down to I have to eat little tiny bits at a time. What happens is, I'll eat a meal. It feels good going down. I'm hungry, but a half hour later, it turns into chaos in my belly. And then I start praying that I don't have a crash. Today, I had one — after lunch. It's devastating. It's devastating to have a crash. Every one brings me into deeper illness and I just keep adjusting. The fact that it's now around eating?! Where do I go? What doctor do I go to help? Do I go to the gastroenterologist and explain what a crash is? He's never heard of a crash — probably never heard of ME/CFS.

Or do I just try to figure this out on my own?

Unfortunately, I'm pretty much resolved that I got to figure it out on my own. Though I did call to make an appointment with a gastroenterologist today. We'll see how that goes. I hope they do virtual visits, ‘cause I can't leave the house. All these specialists I could see at the Cleveland Clinic — the rheumatologist, the neurologist, the gastroenterologist. They don't know anything about ME/CFS.

On the Cleveland Clinic website, if you look up ME/CFS, the specialists you're supposed to go to is your primary. (lol) That deserves a little chuckle, doesn't it? I mean, I love a primary doctor. They're the front lines, but we're talking about a complex, multi system illness in a very severe form. I don't know about your primary, but my primary mainly knows about strep throat and the common cold, but apparently, your primary is supposed to teach you the basics of — I don't know what (lol).

I don’t know. I know this is kind of a downer, but I want to say one thing.

I got an email today from Open Medicine Foundation and The Bateman Horne Center. Those are two institutions that I have a lot of respect for and I'll warn you now that I'm going to invite you to donate to their bake sale at the end of this post. So get your wallet ready. I really want to call your attention to this email, because I think it's something worth supporting. It says “transforming ME/CFS Care, the Medical Education Resource Center. Open Medicine Foundation and The Bateman Horne Center partnered to create the Medical Education Resource Center (MERC), a program dedicated to training healthcare professionals worldwide in diagnosing and treating ME/CFS and related conditions.”

That sounds like a worthwhile cause to me.

Donate to MERC

See, I didn't feel capable of educating my rheumatologist about ME/CFS. The truth is I was scared and insecure. I’ve always been that way with doctors. I’m just an old hippie folk singer from the 90s. But I trust these guys to do the right kind of education. That's really what we need. We need to educate the medical professionals.

“Realizing our vision requires networking and dissemination among institutions and professional associates. As this process takes place, many are still without informed medical care in their local community.” That's me. Hal Walker. Your friend. Here in Kent, Ohio. So there's a whole series of resources to teach health care providers about ME/CFS. And you can donate to MERC, Medical Education Resource Center.

I think I'll probably donate after I talk to my sponsor, because I don't spend any money before just talking to my sponsor. It works really well. I'm not pushing the purchase button in the middle of the night like I used to. You know, I always pause, pause before spending. Pause before donating. Get someone else's opinion — someone I trust, like my sponsor.

Well, there's one other little bright spot of my day that I'd like to share with you to brighten this post up a little bit.

You know, Elanor Nadorff is making a film about me. Well, Emma opened up YouTube and came across this video that Elanor had just posted and Emma shared it with me. It's so beautiful. It's such a delight. Elanor is such a delight. In this video, Elanor tells her story of going in search of a piece of video footage of me filmed back in 2004 and her artistic process and passion to go in search of the material. It's a great story she tells. I encourage you to watch. It's 10 minutes on YouTube, and I'll leave it here.

I don't know everyone. I'm scared. This is the part where I get honest. I'm scared. I'm terrified. I don't know what to do. I keep getting worse and I don't know how to stop it. I don't know what to do about this eating problem. It's very serious… and I feel like I'm on my own to figure it out and I'm scared and frustrated. And, uh, one of the reasons I want to make this Substack is just to say, “Please, somebody do something about this. This is insane. Somebody do something. Someone tell me what to do.” Actually, don't tell me what to do. It's overwhelming when people start telling me all their ideas. So I'm not looking for that, but I just want somebody who knows something to help me. And I'm afraid to say, I don't think anybody knows anything, even the specialists.

But I'm left with just the spiritual solution of acceptance, gratitude, prayer, being of service wherever I can be. The 24 hours a day book today says, “So arise from earth’s bonds, from depression, distrust, fear, and all that hinders your new life. Arise to beauty, joy, peace, and work inspired by love. Rise from death to life. You do not even need to fear death.”

Yep. That’s what I’m talking about. (lol) Don’t even need to fear death. That’s what I want… letting go of the self. You know, “free me from the bondage of self so that I can do thy will.” I don't know what God's will is for me laying here in this bed, but it's quite a journey. I sure would prefer a different journey, God. I’d prefer a different adventure. This one's too hard.

I want the adventure where I get in the plane and fly over to see Emma in Warwickshire, England, and then we go up to… Glastonbury — hang out with the hippies in Glastonbury, and I get to practice my English accent with real English people, and then go along the coast, the English coast. I've never even been to England before. But instead, I get to be here writhing in my bed, trying to figure out how much Ativan to take, trying to figure out how to eat without crashing, pretty much all on my own.

You know, I've got a lot of support. I'm grateful for my friends and my family and my online communities, and my 12-step community and the guy who saves my life every day, my full time caregiver, Mango.

Okay, that's it for now. I wish I had more uplifting stuff to say, but the point of this whole Substack was just to say, “this is insane, such a serious illness to have no doctors.” There are specialists out there, but they're hard to get and They don't really know anything either. They don't have much to offer either. I went to one. The nicest thing about that was I told her my story for about 10 minutes, and she said, “Yep, you have ME/CFS.” First Doctor ever to tell me in 35 years that I have ME/CFS. I appreciated that. I've known it the whole time.

I've been to a lot of different — trying a lot of different alternative medicine approaches. It's been 35 years, I've tried everything. The interesting thing about the alternative medicine doctors is they always have real confidence. “Oh yeah, we can take care of this one. Just do this, take these little pills and take these little concoctions. I've seen this before. I think I can help you.” I kind of prefer the ones that say, “Listen, you're fucked, but let's try everything.”

I'm just feeling frustrated and scared and wanted to connect with you. I miss making these podcasts so much. I miss it when I'm not doing it, but I've been too sick. I don't know when the next one's gonna be, but I sure appreciate your support. I appreciate you listening.

Wish me luck once this adrenaline runs out. You know, the crazy thing about a crash is that immediately after a crash, I feel better. That's how I know I crashed. If a few minutes after it, I feel better. ‘Cause it means there's adrenaline rushing through my body, which means tomorrow is going to be a wired, insane day. The following day after that could potentially be the hardest day of my life. I keep having those over and over again.

This is the reality of ME/CFS. It's a real illness and there are no doctors.

I love you guys. Come on. Somebody figure this out. (lol) Somebody do something. Please. Pleeease. Donate to MERC, maybe that'll help.

All right, bye, bye.

I'm supposed to end on a positive note saying, hey, remember you got a body. Go live in it.

I love you. Bye.

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Spring is such a time surprise. One day there’s nothing and the next day there’s a daffodil! One day it’s 70 degrees and the next day it’s snowing! Seemingly all of a sudden, it doesn’t get dark ‘till eight o’clock at night!

Today, we’re sharing stories of surprise. I can’t wait to read yours. Think back in your life and remember a moment of “wow!” — a moment of “Amazing!” — a moment of “now isn’t that interesting?” I had one just this morning. Maybe yours was last week or last year. Please tell us.

Tip of the Week - There are no rules to this little exercise. If you don’t have a story of surprise, you’re totally free to tell any random story that comes to mind. Surprise us!

Keep it 200 words or less. (Word Counter) Have fun. Don’t hold back. Leave your contribution in the comments. I’ll go first.

I hope to see you in the comments.

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Hi. Welcome to “Living in a Body.” If you read or listen to this episode, please do me a favor and come over to Substack and hit the like button. It helps the algorithm and it helps to let me know that you’re out there. It makes a difference. Thanks so much! Enjoy! Hal

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Lawnmowers in the Sky

I want to talk about the beauty of nature. I want to talk about the sacred beauty of nature. It might sound like a rant but I’m thinking of it more as a lamentation. It starts like this.

I opened up the windows yesterday for the first time this spring. It was almost 70 degrees out, so I asked my caregiver, Mango, to open them up for me. And that's what he did. And right away, a cool, nourishing breeze came into my room and moved through the house, and it had such a luscious, fresh smell. It smelled like real beauty, the kind of beauty that doesn't come in an Amazon box or in some kind of packaging. It's just pure, real, unadulterated beauty.

I slept last night with the windows open. It's the middle of March and I slept with the windows open. I remember waking up at about midnight and I could hear the bars downtown. There was still music going on downtown. I'm about a half mile from it, but I could still hear all the partyin’ going on. And I felt that cool, sacred midnight breeze through my window and it put me back to sleep.

Then I woke up again at about 3am and the bands had stopped playing, but I could still hear an occasional shout. There were still a few late night partiers hanging around. But then that quiet, cool, luscious 3am breeze kept blowing real nicely on my face. It was sweet. That and a half dose of Zzzquil put me back to sleep ‘till the morning. I can feel the breeze right now. I've got the window wide open and it's been a rainy, cloudy day today, but that breeze coming through the house is something special — having gone months without it.

Just so you know, I'm an open windows guy. I don't believe in air-conditioning. My poor daughter growing up. She just wanted to have an air-conditioner in her room. You know, like all the other kids. We had one portable air conditioner that sometimes I'd let her put up in the room, but essentially, her dad was morally opposed to air conditioning. My next door neighbor runs an air-conditioner in the hot months and I just resent the sound of it so much. I sit out on my back porch — my backyard is a natural refuge — and about 50 feet away as “rrrrrrrrrrr.” I don't know if that was such a good imitation, but you get the point. It takes the peace away. It's profane, it's irreverent and it's blasphemous. I realize those are some heavy words, and probably most of you have air conditioners.

I don't want to sound self righteous, but the earth is so beautiful. The silence of nature is so pure, so deep, so profound, so luscious and so endangered. I love the natural sounds of the world. I love the bird song and the breeze through the trees and the quiet — the cool, quiet moon and the warm, silent sun. And I love the loud, majestic crash of a thunderstorm. It's so sacred, it's so holy and it's so… healing.

I could feel it right now. Feel that? My blackout curtains are being thrown around and billowing in the wind. And there goes the door ready to slam shut… (door slams) There it goes. (lol) Oh, wait! I gotta have that open door again to get the nice flow. Hold on… Okay, I'm back.

So, in case you didn't know this, in order to get the real breeze coming through your house, you need to create a cross-breeze. So you need to open up a window on one side of the house and then a window on the other side of the house, so the air has somewhere to come in and it can flow all the way through the house. And then it has to have somewhere to go out.

It reminds me of my grandparents house back in Oak Park on Newland Avenue. My Papa T. and Bestie. Up in the attic, they had this big, huge fan. I remember we'd go into this little bitty attic and there was this huge fan. We could go up there and turn on the fan and open up the attic door and open up the door leading up the stairs and then you open up the front door or some windows downstairs and that huge fan would pull air up from downstairs, up through the house. It was just such a good feeling having that natural air move through the house. That's what I'm experiencing right now. I love it.

You know, I'll never go back to that house on Newland Avenue. I'll never get to go back up to that attic and smell those smells and feel that air. Those are some deep memories—finding refuge on the second floor of my grandparents house with my three sisters, my mom and dad, and that huge fan moving all that fresh air.

So I was talking about the sanctified and the divine sounds of nature, but then comes along the air conditioners and then my nemesis, single engine airplanes. So I've been wanting to tell you about something that's really bothering me. It's been bothering me for a couple years now. I'm really not sure what to do about it. I don't think there is much I can do about it. But for a while now, I've been wanting to do a rant on Facebook or a letter-to-the-editor. But I'm just gonna tell you guys now and get it off my chest. This is my lamentation.

So as I've already said, I love nature and I love quiet. And it's really having this illness that has introduced me to the extent of my love for those things. I've always loved nature and quiet, but I was always too busy to think much about it before. I was running constantly, always looking for the next project. But now more than ever, I love calm and peaceful things. I love trees and water and wind. I love flowers, I love mountains and I love seasons. But I don't love noise pollution and it's a real problem in my neighborhood.

You see, I live in a college town called Kent, Ohio. Maybe you've heard my song, “Kent Ohio. I know that I'm home when I'm Oh in Kent, Ohio, Time keeps rolling and our town keeps growing. Oh my oh in Kent, Ohio.” (lol)

So Kent's a peaceful town and I live in a particularly peaceful neighborhood, except for the single engine planes. See about a mile away in Sto-Kent is the Kent State University airport. Well, back in the years when I was goin’ constantly. I never really noticed it, or maybe the program didn't exist then. But now that I spend all day, every day in quiet time, I hear everything. It seems that at that airport, there's a program for student pilots running training flights in single engine planes all day long, especially on the nicest days of the year when all my windows are open. All day long and even into the evening are these single engine planes coming out of Sto-Kent circling my house. It's obscene. The noise is physically painful. It's like the sound of those slow grind drills at the dentist, not the high pitched ones, but the low, slow grind one, the drill sound that touches your brain in a weird way. It's a real blight on the audible world of my beautiful neighborhood.

Compared to the delicate wild flowers that are growing in my backyard, compared to the whispering winds that are blowing through the oak trees and the pine trees and the maple trees and the chestnut trees, compared to my three wheel scooter that's waiting in the garage for me to move silently around town in all her battery powered quiet beauty, these planes are rude and obnoxious. They sound like war planes and it seems that my house is right on their war path. They come zooming in from the distance with that deep grind and they get louder and louder and then they're at their loudest. Then, as if they've dropped all their bombs on my house, they gradually move off into the distance and get quieter. And then the whole cycle starts all over again about 15 minutes later, when the next plane moves through. It's unbelievable.

I call them the “lawn mowers in the sky.” And I'm not talking about electric lawn mowers. I’m talking about gas-powered, gas-guzzling, noise-polluting all-summer-long lawn mowers. And now I'm on a roll here. Let's talk about lawn mowers for a second. In my opinion, gas powered lawn mowers should be outlawed. It's obscene. (lol) I'm sorry. I'm sorry. Most of you probably have gas powered lawn mowers, but it's just wrong. It's a sacrilege! I mean, come on, it's 2025. Wake up, people! We have the technology. I've got an electric lawn mower, and it's got a nice purr, “bvvvvvv…” as opposed to the obscene, profane, repugnant, loud, obnoxious, gas powered lawn mowers that go on in my neighborhood all summer long while I'm trying to have my quiet time. (lol) Come on, people. What about me!? What about me and my quiet time? No, seriously, what about Mother Earth and her quiet time? That's what I'm talking about.

All right, I gotta slow down. I'm getting too riled up. Yeah, I can't really afford to get riled up about anything. This whole subject brings me back to the fact that I have a highly sensitive nervous system. ME/CFS has gifted me with a highly volatile nervous system that just can't handle much of anything — loud noises, getting riled up about things, even just basic human interactions. So even though it feels good for a minute, and I know I'm right, I can't get riled up about these single engine planes flying around my house. My nervous system can't handle anything but pure calm. Somebody else is going to have to take on the lawn mowers and the planes.

But the reality is no one else cares. They're all too busy. They're running around in their cars, in their loud cars in their busy lives with their windows closed. I'm sorry, (lol) here I go getting all self-righteous and riled up. I'm sorry. All right, let's bring it back to the grand point. The point of this story is lamentation. It's grief, grieving the loss of the natural beauty of quiet. That reminds me.

A couple weeks ago, I told you guys I was watching a show called “Severance.” And it turns out Severance is more than my nervous system could handle. It's a fascinating but nerve wracking show. I watched the season one finale. It was a pretty high stress episode. There was so much going on — this music that would go “boom boom boom boom” and a chase scene and so much intrigue. I started having a very nervous feeling halfway through and rather than stepping away to calm my nervous system, my eyes were stuck on the screen and I watched it all the way through, while my whole nervous system was shaken apart. I had a crash that evening — a devastating, life altering crash. It's just not worth it. It was so fun for just a little while. I love that show. I love those characters, but my nervous system couldn't handle it.

So I've given up the second season of Severance in favor of a live YouTube stream of a pair of American bald eagles raising their two little babies in a nest high above the big bear valley in the San Bernardino mountains of Southern California. Apparently, the nest is about 145 feet up in a Jeffrey pine tree. It's the home of “Jackie” and “Shadow,” the local bald eagle pair. Actually, I've only tuned in twice, but it really had an impact on me.

Just a few days ago, I decided to check in on the birds. And within moments, I just began weeping. It touched me so deeply. I began weeping from the beauty and from my disconnection from the beauty of nature with this illness. They just show this beautiful shot of this incredible nest, I mean, a nest built by the bald eagles and then the mama bird sitting there in the middle, so proud and regal. And off in the distance, you can see this river way down. I mean, this nest is high up in the tree and way down there you can see the river. And I just wept. I wept and I wept and I wept some more. It was all part of my lamentation.

And I guess that's what this all comes around to… is the weeping, the grieving. I think of this post as a kind of crying out to the earth and all the wonders of nature, for beauty lost, the mystical wonder of silence. There's a reason for my weeping. There's a reason for all of our weeping. The quiet, majestic, holy, sacred sounds of nature are in danger… all because we humans think we know what's going to make us happy. Whatever the cost, trying to get more done, get it done faster, get it done bigger, thinking we know the thing that's finally gonna satisfy us.

I think about all the damage I did in my futile search for trying to get what I wanted. You know, I'm no different from those people flying those single engine airplanes around town trying to have a good time. They're just trying to live their lives, trying to enjoy their lives. I'm no different than the people cutting their lawns with the gas powered mowers. I did it for years. In fact, I still own a gas powered leaf blower. Man, that thing is efficient. It gets the job done fast, but it's loud and I miss the old sound of a rake sweepin’ the leaves. “swish, swish, swish.”

Yeah, there's lots of reason to grieve and this is my lamentation. With this highly sensitive nervous system, my brain craves quiet. It craves natural stillness. It craves bird songs and breezes and flowing rivers and bubbling creeks. But I'm no different. I'm no different than all those people making the noise out there just trying to live their lives. I just get to see the insanity of it all, lying here in this bed. Everyone's moving so fast.

But the earth is so resilient, isn’t she? Spring after Spring, she keeps bouncing back. I haven’t seen ‘em yet, but I keep hearin’ about the daffodils and the primrose. Maybe today is just another day for praise and thanksgiving. Let’s raise up the windows. Let’s swing open the doors. Let’s shout songs of love and forgiveness to the single engine planes flying overhead. Yeah. We can circle up and bow our heads to the beauty — the beauty that never gives up… never gives in.

“rrrrrrrrrr” Here come the planes. Here come the planes. (lol)

Ahh… I think that'll be it for today. “Lawn Mowers in the Sky, a Lamentation.” Go out and enjoy some beauty. Go out enjoy some beauty today. Breathe that fresh air and listen to the breeze through the trees. Thanks so much for stopping by. Thanks so much for listening. It means a lot to me.

All right. Have a good day. Have a good week. Remember… you've got a body. Go live in it. Enjoy living in it. Enjoy the breathing and the eating and the being. Alright everybody. I'm going to bed. Have a good night. See you next time. Bye bye.

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Hi. Welcome to “Living in a Body.” My guest on today’s episode is the wonderful . I hope you’ll help me welcome her to Substack by checking out her very first post below, “Saved.” So that you can enjoy her brilliant Warwickshire English accent, I recommend listening to the VoiceOver option that she provides. Thank you for being here! ❤️ Hal

Lanterns in the Dark

Saved

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a year ago · 2 likes · 1 comment · Emma Kitchen

Quality of Life

I've been thinking about quality of life lately. I read something about it on the internet once. It was a statistic about the quality of life of people living with a variety of chronic illnesses. I remember it said that people living with severe ME/CFS had the lowest quality of life of all the major illnesses. That's the one I live with — myalgic encephalo-fuckin’-myelitis. Yep... the severe version. I share this statistic with you not as a fact, not as something I've researched, but as something I read on the internet once. (lol)

I laugh, but it's not a laughing matter. I've lived it and I've heard the stories of people that tell me it's probably true. This illness is a beast and it's brought people to the lowest quality of life you could imagine. Searching for it now, it looks like it was a Danish study done years ago. (Read more here) It concluded that the quality of life of ME/CFS patients is significantly lower than the population mean and it’s the lowest of all compared conditions.

That statistic stuck with me all these years. It hung around in the back of my head as the scary truth. I never would have imagined that I'd have to someday live it. But now here I am, mostly bedbound, sicker than ever and I have an urge to defend my life against that statistic. I want to be the one to prove they were wrong. So I ask, what is it that makes a quality of life?

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If you've been hanging around here for a while, you already know I've been living with ME/CFS for many years, since 1991. And I lived a very full life and I always knew in the back of my mind this statistic. I knew about the people living with severe— living in the dark, unable to leave their bed, unable to eat, unable to speak, unable to take visitors, unable to turn over in bed. I knew about these people, but I went on and lived my full, vibrant, active life with mild to moderate symptoms, always pushing the boundaries, thinking somehow I was invincible.

My quality of life was fairly good looking back. On the outside, I had everything. From where I lie now, I had nothing to complain about. But I struggled on the inside. On the inside, I was striving for more, grasping for more, hungry for more, unsatisfied. I carried around a low grade sense that it's just not enough. I was always trying to do more and I was always tired. On the spectrum of qualities of life, mine wasn't as good as it probably should’a been. As the title of this episode says, quality of life is an inside job. I believe it.

As my illness has become more severe, as my limitations and my disability become greater, I'm interested in the idea of my quality of life actually improving during this time. Like, as the symptoms get worse, the quality of my life could actually go up (lol) … kind of like my friend Emma. We'll hear from her in a minute.

Watching the quality of my life improve through worsening illness is a fascinating challenge to me. And I know it's an inside job. It's all in how you look at it, right? What really is quality of life? Is it being able to have all the things I want? Is it being able to do all the things I want to do? Go all the places I want to go? Eat all the foods I want to eat? Buy all the things I want to buy? Have just the right combination of family, friends and community? What is quality of life?

I'm sure there are all kinds of studies. I'm sure there's a whole encyclopedia article on it, but I gave away my encyclopedias years ago. So I'm just riffing a little bit here on the concept of “what is quality of life?”. I ask you, what defines your quality of life? What improves your quality of life?

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I asked my girlfriend Emma what quality of life is for her, and she gave the answer that I wanted to give. She said it much more eloquently than I could. So here's . She's been living with severe M.E. for many years now. And if you can't tell by her accent, I'll let you know she's from Warwickshire. Warwickshire in England.

Hal: Good morning, my dear Emma. Beautiful weather today, is it not? So what's the quality of life in Warwickshire?

Emma: Good morning.

It was such an interesting thing you said about quality of life yesterday. I just wanted to comment on it because I was thinking… quality of life for me is about connection to my source, that - kind of like - my divine being, where there's that flow of energy, which feels like complete contentment, a very like subtle joy, just this feeling of being complete and whole and there's no needing in it. There's no wanting. It's full and it's beautiful. And I feel sure that this is what is meant by the word Love.

Because it holds everything and it holds everyone and it's at the source of everybody's experience — once the noise of the mind is quieted. And I find that in my life, before finding this, or even now when I'm looking outside of myself for activities or something I think I want or need, to have quality of life in a human egoic sense. You know, what can I do to make my experience better? What can I have to make my experience better? Who can I know to enrich my life and make me feel good about myself? All of those things I find are poor substitutes and they never last. I'm always left wanting, even if it's their most fullest, richest, explosively, wonderfully joyous experience in that moment. It never stays that way, and there's no solidity there. There's no ground there. There's nothing to rely on because everything is always changing.

And I feel like once I have something that I think I want which will bring me quality of life… like I’ve got a mobility aid, this bike that I bought, a walking bike. And I was like, “Yeah, I'm going to get this.” I spent all of my savings on it. It was a big purchase for me. And it came and I had all these visions of how it is going to improve my life, and I've been to unwell to use it. But even when I got it, like the moment I got it, the thrill had gone and I was immediately looking for the next thing to improve the quality of my life. What's the next thing?

Do you know what I mean? And then I got a mobility scooter. Yeah, wonderful, it's brought me enrichment. And I definitely see that. But, yeah… it's on so many different levels, isn't it? Like, on a human level, I definitely have enrichment from having a mobility scooter. But I think for me, quality of life always just comes back to how connected to that divine stream of Source Energy am I? Because that can't be taken away, and it can only be deepened. My experience of it just only deepens and deepens and deepens and it doesn't matter if I can't go out on my scooter for relief, to improve the physical quality of my life by getting me outside the house, by letting me meet strangers and have little conversations, although that is a huge enrichment in my life. The days that I can't go out, which are more numerous than the ones that I can, there's there's no disappointment or sadness there, because I tap straight into the beauty of what is, and I'm full.

So yeah, absolutely, for me, quality of life is dependent on being connected to source, and I think that's one of the biggest… well, it changed my life. It has changed my life. It's revolutionized my life. And so, yeah, that's all I want to say. Anyway…

Hal: Thank you so much, Emma. That was really beautiful. You basically said what I wanted to say — more eloquently, though. I am left speechless. (lol) Let's see. What else could I possibly add to that? Hold on. I'll think about it.

Here's what I'm gonna say.

Quality of life is a judgment and it's my thinking that does the judging. So it seems to me that quality of life is based in a large part on my attitude, on my thinking. To what extent am I saying “yes” to this moment, to what extent am I smiling and loving what is — with all the discomfort, with all the things that I wish were different, with all the feelings, with all the imperfections and all the uncertainties, all the everything. To what extent am I a smiling witness saying “yes” to it all?

What is the quality of my being in this moment? To what extent am I welcoming all the visitors into my circle with love? To what extent am I practicing kindness and honesty and patience and generosity. That's quality of life. Quality of life is in the being. It's here and now. It occurs to me that quality of life is a practice.

So even if I'm unable to go outside, even if I spend most of the day with an eye mask and silencing headphones on, even if I have limited human contact, even if I have non-stop loud ringing in my ears and debilitating weakness in my arms and my legs and a weird, prickly bubbling that's happening constantly in my belly, I can still be the guy with the best quality of life in Ohio. All just by watching what is, with a smile, a cry, a whimper or a laugh. (lol)

Is it true? I think I'm finding out that it is. Of course, there are a lot of days I'd resent myself saying all this. When the discomfort is so great, when I feel so alone and my brain is taken over by a scary, numb kind of fucked-ness, when my nervous system is so out of whack and it takes on a nightmarish kind of hijacked life of its own and I can see nothing but decline in my future. There have been times when the discomfort is so great and I can't believe that this is really my life.

But even then, I keep coming back to the smile. I keep coming back to the surrender. I keep coming back to be the witness. I keep muddling through and something changes. And here I am now in a mood, trying to prove that even with these circumstances, the quality of my life is as good, if not better than ever.

Yeah right, Hal. (lol) Alright. But there’s something else I gotta say.

I'm a white man with a MacBook Pro and an iPad Plus who has money in the bank, who has two wheelchairs, a stair lift and a full time caregiver, who owns his own home with a beautiful front porch in a relatively quiet neighborhood. My needs are well met. In the realm of Maslow's hierarchy of needs, I'm doing quite well. I know everyone doesn't have this kind of privilege and I know it has a profound impact on my quality of life. In the material world, I'm a blessed man. So let’s keep that in mind as I'm saying all this highfalutin stuff.

You know, I'm able to lie in this very peaceful place with a window, the sun shining through the window, exploring the inner world of Hal Walker, the inner world of “beyond Hal Walker,” the inner world of not-changing-anything. I'm more and more convinced that the quality of my life is directly proportionate to my ability to rest in what is. My ability to be still and listen for that voice of God.

You know, I can see the blue sky right now. The birds have been starting to sing lately. I could hear the geese flying by my house earlier today. And yesterday, I was able to sit on the back porch and watch three cardinals playing in the pine tree. There's peace in my town. There's peace in my room. There's peace in my home. If you ask me, that's a pretty good quality of life. 65% of me, maybe even 75% is grasping for nothing, just soaking in the contentment. I wish the same for you.

Thanks so much for being here. Thanks for listening, thanks for reading. I really appreciate you.

Hey, I think that's it for today. Don't forget! You've got a body. Go live in it. Wherever you are, whatever your circumstances, practice saying yes. Practice smiling and saying yes. And loving every minute of it. Then watch what happens to your quality of life. I wish you well. Enjoy Saturday. Enjoy whatever day it is. I'll see you next time. All right.

Signing off. I love you. Bye, bye.

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Hi. I’m Hal. Welcome to “Living in a Body.” Click PLAY above to hear the intended PODCAST version of this episode with original music. (16 min. listen) Find the full transcription below. Enjoy! Hal

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Your Birthday

It's my birthday next Wednesday, March the 5th. I'm turning 59 years old. Yeah… I know. I was always in my 30s… or in my 20s. I was always the younger guy, but now I'm the older guy — 59 years old.

I was talking with my sponsor and I was feeling a little bit sorry for myself. We call it self-pity. I was saying, “You know, I don't have anyone to invite to my party. Two years ago, I had a really nice gathering of friends, but I’m sicker now and I’ve lost touch with so many people and all my friends have abandoned me and… uhhh… boo hoo. Maybe I’ll just have my family and my girlfriend on the Zoom call.” Which will be wonderful! But there was a tinge of self pity in my voice.

And my sponsor said, “Hal, do you know when other people's birthdays are?” And I said, “Well, not really.” And he said, “Why don't you spend some time paying attention to other people's birthday? You know, send a greeting to other people on their birthday.”

And that shook me up a little. It shook me up a little bit and it opened my eyes a little bit. Yeah! That's what I wanna do. I wanna pay attention to your birthday. When's your birthday? I want to send a card to you on your birthday.

I sent a letter in the form of a homemade card to my niece the other day and I can't tell you how satisfying it was. I created a little watercolor, I rubber cemented it to a nice brown folded card. I wrote a full page letter in there. All together, it took about 30 minutes. Then I folded up a $20 bill to put inside. I sealed the envelope, wrote the address on it, wrote the return address, put a stamp on it, and put it in the mailbox. And this action was the best action probably of my week. I thought, “This can be the purpose of my life. This can be the new purpose of my life, sending cards to people, wishing them all the best on their birthday — sharing a little bit of myself, asking them about themselves.”

It's really an eye opener. You know, It’s not all about my birthday, my birthday. “What are we going to do for my birthday?” (lol) No, it's your birthday that I'm interested in. Please send me your address. Send me your birthday. I'm compiling a database and this is the new purpose of my life. (Click the link below to give me your mailing address and your birthday so I can send you a card. Thanks!)

Send Me Your Birthday

I had a moment this morning of questioning. “What is the purpose of my life?” I spend so much time meditating and I was looking forward to seeing Emma (my long distance girlfriend from England) at 11:30, but I hadn't heard from her. So I wondered, “What if I don't get to see her at 11:30? Then what do I do?… And what is the purpose of my life? I got no projects I'm working on. I can't go clean the house. I can't go for a bike ride.” You know, I'm not writing a song. I'm not practicing an instrument.

What I'm doing is practicing awakening. I'm practicing stillness. That's been my purpose — is practicing stillness. And it can get a little bit old after a while. Believe it or not, it can almost get boring. The amount of stillness I got to practice! I mean, come on, I want to have a little fun! Emma reminded me that is what the purpose is. I can't remember how she said it, but it's to awaken, to awaken from the dream of the self. That's my purpose…to awaken and to write cards, write letters, celebrating other people's birthday.

And when I think of it that way, it's quite satisfying. I mean, I can't tell you the amount of satisfaction I got from the complete process of sealing the envelope, writing the address, putting the stamp on there. I got a whole stack of stamps in my drawer right next to my bed. It was so satisfying. Now, all I need is some addresses and some birthdays. So please send me yours.

On a similar subject. You know, I go to this meditation, this online meditation group called Meditate-Together, and after the 20 minutes of silence, there's a topic for sharing. And every once in a while, the topic comes up, “What role does compassion play in your meditation practice?”

And what I've noticed is that it's often very silent. It's often very quiet. From what I can see, people aren't sure how to approach that question, the question of compassion. This might just be the judgmental part of me, but I'm thinking “all these meditators…” no, I’ll just talk about myself. I'm a self centered meditator. (lol)

You know, I'm mainly meditating to save my own life. I'm meditating so I get to be awakened, so I get to be enlightened, so I can have less suffering. I'm meditating so I can survive this devastating illness. It's all about me. It's not about other people.

Compassion is about other people. And generally, the people that chime in with their answer of what role compassion plays in their meditation. Generally, they refer to self-compassion. They say, “Well, for me, it's mainly about self-compassion.” And self-compassion is great and all. I'm happy for you. I'm happy for you. (lol) I'm happy for you that you've got self compassion. We all need that. I mean, loving myself. I don't mean to joke about it…

Loving myself is something I do fairly well. I mean, I often say very loving things to myself. I kiss my knees. I caress my face. I hold my hand on my heart and say, “I love you. Hal, I'm proud of you. You're doing a great job. I'm sorry it's so hard.” Self-compassion is a good thing.

But what about real compassion? I mean… normal compassion. In the encyclopedia, they say compassion is… “sympathetic pity.” I didn't like that one so much.

Compassion definition… I like this one, “sympathetic consciousness of others distress together with a desire to alleviate it.” Consciousness of others distress. Sympathetic consciousness of others distress together with a desire to alleviate it. And we all have distress, everyone of us. But I don't think about others distress that much to be truthful. I mainly think about my own distress.

But you know, my 12-step program is all about helping others. It's all about being of service. Gratitude, sobriety and service. Where can I serve? Whose birthday is it? Whose birthday is it today? And how can I make their day by sending them a birthday greeting in the mail? It's not all about my birthday anymore.

Anyway, around this meditate together question of, “what role does compassion play in your meditation practice?” I got to be honest…

I mean, I hope that my meditation practice, all my spiritual practices… I'm hoping they're making me a more loving person, a more available person, a more caring person, a more present person.

You know, in my little corner of the world, I'm practicing stillness. I'm practicing quiet. I’m practicing presence, so that I can do no harm and so that I can grow and learn to be compassionate. But as I said before, compassion, b eing compassionate has not played a major role in my thinking.

As opposed to my friend Annette, who volunteers at the food kitchen practically every day, stirring rice and cutting vegetables. That woman is compassionate. She cares about others deeply. She's a Quaker. Quakers are really good at compassion, I think. And I'm sort of a new Quaker. So I'm just learning about it. (lol) I've got an excuse. I'm just learning about compassion.

You know, I had a Unitarian over here today, Marion, and she's very compassionate too. She reminded me… I asked her what role compassion plays in her life and she talked about being kind and generous to people of all different backgrounds that she comes across during her day. She feels that as she's gotten older, she's become more compassionate. Yeah, I think I've become more compassionate too, but I don't get very much chance to see people in my day to day life. But I definitely have my chances to practice compassion.

Tell me, what role does compassion play in your life? I’d love to hear.

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Anyway. There's one more thing I want to say. I'm watching this series. I went months and years without Netflix, without Hulu, without Apple TV. Years. And I didn't miss it. But recently, I discovered a series and I'm hooked.

So I finished “Nobody Wants This.” It was only 10 episodes and I finished it in 10 days. And then my daughter turned me on to this new one called “Severance.” It's a wild one. It's kind of mind boggling. And a little bit, um…what's the word… kind of… not spooky… but twisted…and a little bit… what's the word I'm looking for?… A little bit… dark, and… uh, I can't think of the word I'm looking for. I'll find it later.

Anyways, “Severance.” One episode a day. I'm not gonna explain the whole story to you, but basically, it’s the workers of the Lumen company. They go into work and while they're in work, their life brain is removed, and they know nothing but their work life. And then they come back out of work, and they're back into their normal selves, but they don't remember anything that happened at work. It's a fascinating story. I'm really having a lot of fun watching it. I think I'm on episode six now.

Anyway… earlier today, when I was questioning the purpose of my life, I thought, “Well, I got that episode of Severance to look forward to later this afternoon.” That didn't feel so good thinking about a TV show being one of the main things I was looking forward to. I thought, “Oh boy, that's the new purpose of my life that I get to watch an episode of Severance.” But I gotta say, it's a really fun escape for 50 minutes for this growing more compassionate all day meditator.

Then during one of my meditations, I heard Thich Nhat Hanh say, “Breathe in and smile, breathe out and smile at everything, including the difficulties.” Then it reminded me that that's my work today, to breathe in and smile. My work is to smile in my little corner of the universe and maybe that smile will spread out to the whole world. And here I get to write say these words to you. Maybe you'll smile and maybe you'll send me your birthday and your address so I can send you a card.

Give me Your Birthday

Of course, if I get 1000 addresses, it'll be a while before you get yours, but YOUR birthday. The episode is called YOUR birthday, not MY birthday. When's YOUR birthday? I want to pay attention to YOUR birthday. I want to be there for you on YOUR birthday. Interestingly, the thought of celebrating YOU makes me so happy. I'm done thinking about my own birthday party. It's you I want to celebrate. You, yeah you! I can't wait for your birthday. (lol) Sounds funny.

Okay, I think that's all I got to say, everyone. Thanks so much. Thanks for being here. Thanks for listening.

Hey, guess what? Remember that body of yours, it's so beautiful. It's so beautiful and it's not going to be here forever. You're not going to be young forever. And if you're old, you're not going to be old forever. You're just going to get older. (lol) You're just going to get older. You're going to be older than old.

So take advantage of it today. Whatever you got! If you're in the bed, move your toes. Enjoy the movement of your toes. Twist your ankles. Enjoy the twisting of your ankles. Kiss your knees. Enjoy the kissing of your knees.

Thank you. I can't wait to celebrate your birthday.

All right. See you next time.

Bye, bye. H

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Hi. I’m Hal. Please press PLAY above to hear the intended podcast version of this episode. The full transcription is below. Consider becoming a paid subscriber to support my work. Enjoy. H

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A Day in the Life

I haven't left the upstairs of my house in a while. It's been at least a week. Thank God I have a caregiver that brings my food up from downstairs.

I will report that my symptoms are as severe as ever, the most severe they've ever been. But my spirit is well. My emotional health is well. My mental health is well.

It's not easy, but I keep adjusting. I keep taking it as it comes and finding ways to get through a day. In this episode, I want to let you in a little bit about a day in the life, how I get through a day… just in case someone finds themself in this position and needs help figuring it out from someone who's been there. Believe me, I've been there.

This morning. I woke up at 4:30. I don't get out of the bed until 7, so it was a little disappointing knowing that I had about two and a half hours to kill. So I did some laying there, or would it be lying there, practicing calm, practicing smiling, practicing welcoming it all.

Actually, the first thing I do when I wake up is pray. I get on my knees there on the bed, and I mumble a few prayers. I say, “God, take away the fear. Take away the self pity. Thank you for this day.” You know the spiritual aspect of my life is really my only choice. Mostly, most of the worldly things have been taken away. So I'm focusing on the inner life, the inner life of the Spirit. So I pray and then I ride my wheelchair, my sweet Matrix wheelchair, over to my daytime bed. I am greatly privileged in the realm of resources for chronic illness — two sweet beds, a daytime bed and a nighttime bed.

And my caregiver has the bed made up real nice. So it's fresh. It's a freshly made bed. And I get into the fresh bed in the morning. It's cool and it's crisp and I climb in under the covers, I turn on the light, and I open up the 24 hours a day book. This is the spiritual guide for my 12 step program. It's a great book. I've really come to love it. Today was February 21st.

“I will be more afraid of spirit unrest, of soul disturbance, of any ruffling of the mind than of earthquake or fire.” This book takes this stuff seriously. It takes the inner life seriously, “when I feel the calm of My Spirit has been broken by emotional upset that I must steal the way alone with God.

I will try to keep calm no matter what turmoil surrounds me,” and I add what turmoil is within me in this body, “I pray that I may keep a calm spirit and a steady heart.”

You know, living with this ME/CFS ridden nervous system, maintaining calm is a full time job. That's what I spend most of my day doing. Essentially, to survive these very challenging circumstances, I have to attempt to maintain a calm spirit and a steady heart.

After I read the 24 hours a day book, I read the “Just for Today” card. It’s a card that people in my 12 step program read. It's nine “Just for Todays.” For instance, “Just for today, I will live through this day only and not tackle my whole life problem at once. I can do things for 12 hours that would appall me if I had to keep them up for a lifetime.”

That's a helpful one to read first thing in the morning, I regularly wake up with a kind of dread, like, “Oh god, oh my God. Not this again, not this life again.” And then I turn to that first one and I think, “oh, all I have to do is one day, just 12 hours.”

I like this next one. “Just for today, I will be agreeable. I'll look as well as I can dress becomingly, talk low, act courteously, be liberal with praise, criticize not one bit, nor find fault with anything and not try to improve or regulate anyone but myself.”

That is some good shit. That is some good shit, man,

“I will not try to improve or regulate anyone but myself.”

What a relief. What a relief that I'm not in charge. Everyone just gets to make their own crazy. They get to do their own crazy, or their own whatever they're doing.

You know, my daughter gets to be herself. My girlfriend gets to be herself. My mom gets to be herself. My sisters get to be themselves. Mango gets to be himself. I don't need to improve or regulate anyone but myself. What a relief.

This is a beautiful one. This is the last one I'll read just for today. “I will adjust myself to what is and not try to adjust everything to my own desires. I will take my luck as it comes and fit myself to it.” (lol) Nice. That one works so well for me. It's like I got some rough luck, but I'll take my luck as it comes and fit myself to it.

“One more. Just for today, I will be happy. Most people are as happy as they make up their minds to be. Happiness comes from within and is not a matter of externals.”

So just for today, I will be happy. Just for this moment, I will be happy. Create a little joy on the inside. I remember I used to give assemblies in elementary schools, and one of my favorite things to do was to challenge the students to create joy.

I challenge you now. Create some joy with me.

Breathe. Smile. Bring the joy up from the depths. Let the joy shine in your eyes. Fill up your whole head with joy. Put a little joy in your mouth. Make the inside of your mouth a smile and then do it all day long. That's what I do, except when I'm crying.

After I read those two pieces of literature, I have a half hour of quiet time. I put an eye mask on. I set my bed in the “zero gravity position” and I spend a half hour of time with the Source of all Being. Just quietly resting, quietly resting in the Presence of the Source of all Being.

Right after quiet time, the bell goes off, and Mango brings me my broth. I have eight ounces of chicken broth and it is so soothing. It's so soothing. It's so soothing on my racked nervous system, on my racked digestive system. It's so soothing. It feels so nourishing. It's nourishing and soothing and gentle and kind on my body. It's one of my favorite moments, sucking down that eight ounces of bone broth.

Little bit later, he brings me my 8 ounces of yogurt and a banana. That one tastes good. It's almost like starting the day off with dessert.

And then at eight o'clock I hop on to “Meditate Together” for a 20 minute meditation.

This is what I do all day long. Every hour on the hour, I'm meditating for 20 minutes. I think that's what's that's what's helping me survive — having a structure. I love having a structure. Even though I'm in bed all day, I barely leave the bed, I have a structure to my day. I recommend it.

For this first eight o'clock meditation. I do a Transcendental Meditation where I repeat a mantra in my brain.

And then at 8:22, the leader of the online meditation offers a prompt for discussion and we share honestly. They say, “We’re creating a safe space for listening and sharing, sharing honestly. And I don't remember what the prompt was this morning, but it might have been something like, “since it's Friday, what's something you'd like to celebrate from this week?” Or something like that. And I get to meet with this little community of people, meditators.

Meditate-Together

Then at 8:30 I hop right over to the Quaker Meeting for Worship. It's out of Pendle Hill in Pennsylvania. Seven days a week, from 8:30 till 9:10, we sit in silence, and when the spirit moves, people speak out of the silence or sing out of the silence. I often cry. I often weep from the beauty of the sharing. It's such a beautiful gathering of friends…of Quakers. And the things that come out of their mouths are just so led by the Spirit. Morning after morning, I'm reminded of what's important.

Sometimes I'm too sick to have the light on, but I love the gathering of friends. And every once in a while I speak. Every once in a while, my heart starts pumping a little bit, and the spirit moves and I share something.

I've never been there, but Pendle Hill is this gorgeous Quaker retreat center outside of Philadelphia. If I could live my life over again, I'm certain I would have done several residencies there and written the book there, made a CD there, written a whole bunch of songs there. I love retreat centers. I love retreat retreat places, and especially one that has Quaker Meeting for Worship every morning in the barn. Yeah, that's what I want.

Pendle Hill

Then at 9:15, I call my sponsor and I share all the things that I don't want to share. You know, I get honest. I talk about the deep inner workings of my brain and I ask for help. I ask for help on how to how to live my life on the spiritual path. I have a very wise, very kind, very gentle and loving sponsor and I feel very fortunate. I feel like I found a home with a sponsor. I could imagine him being my sponsor for the rest of my life. We talk seven days a week. I'm truly blessed.

Then at 9:30, it's breakfast time. After sometimes I'll make a call. I'll make a phone call to one of my fellows, but then before 10 o'clock, I've got to have breakfast. I've got my oat bran and my eggs and my butter, a tablespoon of butter in the one ounce of oat Bran and two eggs.

Then 10 o'clock rolls around. This morning, I did my second meditation at “Meditate Together.” Often, I'll have a 12 step meeting at 10 am or sometimes.

So that's my day. Every hour, on the hour, I'm meditating.

And this week, my long distance girlfriend (who I met here on Substack) and I have found a wonderful rhythm. One thing about being in a long distance relationship is you got to find a rhythm. You gotta find a rhythm for contact. And Emma and I have found a really great rhythm that works.

We'll always start the morning with a voice memo. Emma's in England, so she wakes up much earlier than I do. So the night before, I'll leave her a very loving voice memo on WhatsApp and then I wake up to a loving voice memo from her.

You know, I can't necessarily recommend long distance relationships, but we're really finding a nice way to do it. So here are the instructions. (lol) In case you're looking for some — a loving voice memo at night, a loving voicemail in the morning,

By the way, please don't forget that all morning, all day, I'm very ill, severe symptoms of ME/CFS. I mean, I haven't mentioned that yet, but very ill, very weak, deep weakness, deep illness.

But then at 11 o'clock, I take a quarter milligram of Ativan, a half pill. It masks the symptoms a little bit and then I get on “Meditate Together” for a 20 minute meditation, allowing that Ativan to sort of settle in. And it really helps. It eases up my symptoms a little bit. It masks the symptoms just a little — a quarter milligram,

And then with this great rhythm that Emma and I have found is at 11:30 we meet from 11:30 to noon, and we laugh and we talk and we say funny things. Sometimes we say sexy things. We smile. We say things like, “Oh, hey, beauty.” And she says, “Hello, handsome.” I'm not going to go into too much more detail, but it's just been a really great half hour.

And then at noon, I'm back onto the meditation for another 20 minute meditation. And probably for that one, I just rest in the mess. You know, I close my eyes and I rest in all of it. I rest in the thoughts. I rest in the sensations. I rest in the feelings. And then 20 minutes later, we've got another prompt to discuss among the Meditate Together community.

So I'm well supported in community. I mean, that's one thing. I have found resources that are getting me through this. I am not lonely. Even though this illness is a painfully isolating illness, I'm finding ways to not isolate. And I think it's saving my life.

Then at 12:30 Mango brings me my lunch. I've been eating brown rice, and today I had tofu and brussel sprouts. Really good salad. Mango makes a great salad with red cabbage and carrots and sauerkraut, avocado and cucumbers and tomatoes and greens, and then apple cider vinegar and oil. It's a really nice salad. I love it.

And then one o'clock comes, and guess what, it's time to meditate. (lol)

But on Wednesdays, I do a Quaker “worship sharing.” It’s a wonderful group out of California. Someone brings a quote, and then they come up with queries and we sit in silence. People speak out of the silence to share on the query. That's all I'm going to say about that. But just emphasizing that I have found community online and that's another example of it.

Wednesday Worship Sharing

So continuing the wonderful rhythm that Emma and I had found is at two o'clock we share a daily meditation reading out of this book called The Journey of the Heart. And we'll read the day's meditation. Then we'll share about it. We'll share our thoughts. Today, It was all about love. Here, let me read a little bit of it.

“Let love be you can't control love. It's impossible. We've learned to let love be and be open to what that is in the new direction it may lead us. And love is a powerful, living force that permeates the universe and funnels through us. We don't lead it. It leads us and guides us.”

So we use this reading as a kind of jumping off place for a conversation. I practice being present and listening and sharing vulnerably with my friend. I've really been appreciating that. It's been such a joy to get to know Emma this way, even though we're separated by an ocean.

Well, this has taken too long, so I'm going to cut it short.

I take my second quarter milligram of Ativan at about four o'clock. I'm thinking that I'm gradually going to be titrating off of Ativan. So little by little, I'll take those half pills and make them smaller and smaller. I'm not looking forward to it. It's really quite scary. It's basically going to force me to face the reality and the depth of my illness and the reality of my limitations, which are very severe even with Ativan. But I'm not in any hurry. I'll let you know how it goes.

All right, we're gonna wrap this up and move along to five o'clock when I watch my show. I've been watching a show. It's called “Nobody Wants This.” And it's a fun show. It's a half hour show on Netflix, I watch a half hour a day. And it's about a rabbi and the non-Jewish woman having a love affair. And it's funny. It makes me laugh.

It's interesting. I have very little media in my life. I don't look at the news. I don't look at Tiktok and Instagram or Facebook. So this is my little indulgence into the world of Hollywood and beautiful people.

And then I have dinner,

And then I get to bed early. Around eight o'clock, I take my wheelchair over to the nighttime bed, brush my teeth, floss my teeth.

And I've been reading this wonderful trilogy by Fredrik Backman. The first one was called “Beartown.” The second was called “Us Against You.” And the one I'm on right now is “The Winners.” It's a great book. It's a great trilogy. Frederick Backman is a master of writing. You know, I've written a few good essays, but writing a novel, writing a trilogy like this, the way he weaves everything together. By the way, it's narrated by Marin Ireland. I'm listening to it on Audible. It's just such a great story. I'm really enjoying it.

One thing you'll notice I don't do very much of is writing or creating. In the half hours that I'm not meditating, I'm mostly just resting. I was inspired to break out some water colors today and try to make a card, but just the setup alone was more than I could handle, so it'll have to wait till another day.

All right, everyone, it's time for me to be done that went on a little too long. Thank you. Thank you for caring enough to listen. It's been a really rough path. It's been a rough road. But as I said, in my spirit as well. Emotionally, I'm well. I'm finding ways to get through.

I miss you. Miss seeing you. I miss being out in the world like crazy.

So take advantage of it for me. Hey, go skipping today! When's the last time you skipped? If you're able, please for me, go outside or in your hallway and do a few yards of skipping and smiling. And then report back in a comment. Let me know how it went. Everyone do a little bit of skipping today.

When's the last time you skipped? If you've got a body that can skip, you must go out and skip. Please! For me.

Thank you. Enjoy living in that body of yours. It's not going to be around forever.

I love you.

Bye, bye. H

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