Living in a Body

Hal Walker
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Hal Walker, Ohio musician and writer living with severe ME/CFS, weaves music, stories and community from his bed. halwalker.substack.com

  1. May 16

    Emma in the Dark

    Two times a month, I attend an ME/CFS support call on Zoom sponsored by the Bateman-Horne Center. There are regularly almost 200 people on that call. The call is so well facilitated and has been a wonderful resource to me and many others. It’s given me a very positive impression of this not-for-profit organization. If you have a few dollars to donate in recognition of ME/CFS Awareness Week, I recommend donating to the Bateman Horne Center. Find the link below. 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. 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-f****n’-myelitis,” also known as chronic-f**k 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. 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. F**K, Hal. I am f*****g scared. I am really f*****g 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 f**k is Jesus gonna do? What’s anybody gonna do?” That’s the whole f*****g 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 f*****g 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. Whe

  2. Apr 11

    Now, Even Slower

    Join the Conversation! 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 Emma Kitchen, 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 f****d.” 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 f****d 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 f****d 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 f****d” 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. Slow down, you’re movin’ too fastYou got to make the morning lastJust kicking down the cobblestonesLooking for fun and feelin’ groovyLadldeea da da da dum, feelin’ groovy.-Paul Simon 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 Get full access to Living in a Body at halwalker.substack.com/subscribe

  3. Feb 28

    Sugar Mountain

    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 When: March 7, 2-3:30 pm EST. (notice time change from previous announcement) Where: Zoom Meeting: 870 0553 2132What: 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… “Oh, to live on Sugar Mountain, with the Barkers and the colored balloons. You can’t be 20 on Sugar Mountain, though you’re thinking that you’re leaving there too soon. You’re leaving there too soon.” - Neil Young 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 s**t 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 s**t 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. S**t! 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 s**t, 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. 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 dee

  4. Feb 14

    Color Theory

    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. 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 s**t 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-f**k 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 to

  5. 11/08/2025

    Stippling

    Stippling 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 all the distant past by now, but I just remember that I loved that class. 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. 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? Islamic art is brand new to me and I’m really excited. 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. 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 these 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 comes 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 memoirs 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 sca

  6. 10/11/2025

    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 ethno-musicologist 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 listening to “morlam” 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 ethno-musicology 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. I think she’s from New Orleans and had kind of a really easy North Carolina accent. I don’t really know her whole background. All I know is I liked her 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

  7. 09/20/2025

    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 main 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 does not open. 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. 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. (lol) The way opens… yes. 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 was 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, s**t.” 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 going to 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. 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, s**t, 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 s**t, 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

  8. 08/22/2025

    A Sketch Book and Two Fountain Pens

    Hi! Thanks for being here. Please press the PLAY button above to hear the intended podcast version of this episode. Find the full transcription below. 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 ph

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About

Hal Walker, Ohio musician and writer living with severe ME/CFS, weaves music, stories and community from his bed. halwalker.substack.com

Information

  • Creator
    Hal Walker
  • Years Active
    2022 - 2026
  • Episodes
    120
  • Rating
    Explicit
  • Copyright
    © Hal Walker
  • Show Website
    Living in a Body