Hi, I'm Hal. This is the Living in a Body podcast. Welcome. A special welcome to all my new subscribers this week from TikTok and Instagram. Glad to have you here. It's called Living in a Body. This is episode 97. We've been going at it for a while now, but you're here just in time. Press PLAY above to listen. (25 Min.)
Be the Hole in the Donut
My sponsor keeps telling me to “be the hole in the donut”. To be honest, I'm not sure what it means, and besides, I don't think I'm doing a very good job at it. I’m so attached to the material world. But he's very kind. He's very generous and very helpful. He just keeps saying, “Be the hole in the donut, Hal”.
And I'll tell you a little bit later about what I think it means, but I'm gonna start with a little story about something that happened to me this week.
On Sunday, I posted 80 seconds of me playing “Low Key Gliding” on the melodious khaen, an instrument I play from Southeast Asia. Here’s a little taste of it:
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And within three days, three days later, the video had gotten 30 million views on Tiktok. 30 million views on Tiktok…and I'm over here trying to be the hole in the donut. But in order to tell you the story right, we’ve gotta start at the beginning. It starts something like this…
I don't know if you know this about me, but like many people with my illness, I do not have proper medical care. I'm essentially making up my own treatment for a very serious chronic illness, a severe version of something called myalgic encephalomyelitis, also known as chronic fatigue syndrome. We call it ME/CFS for short. You know, I have a few doctors here and there. None of them coordinate. None of them are working together. No one's really on top of my situation. They’re perfectly nice, hard working people, but when it comes to ME/CFS, they’re clueless. So as is the case for many people with this illness, I'm just making it up as I go. It's a scary place to be, because I'm no scientist. I'm no doctor. I don’t have the strength to do a whole lot of research. I do a fairly good job at self-care, but man wouldn’t it be great to have a team of specialists working on me — backing me up.
For now, I’ve got my sponsor and the spiritual solution of this 12-step program calling me to just for today, one day at a time, be the hole in the donut, Hal.
Anyway, with a prescription I got from my nurse practitioner psychiatrist, I’ve been using a drug called Lorazepam, or Ativan, to save my life. Without Ativan, I'm unable to eat, unable to speak, unable to move my arms. And with a small dose of Ativan in my blood, just a little quarter milligram, I'm able to do those things for a little period of time. I call it an “Ativan window.” And as long as I respect the Ativan window, I'm able to do mild activity in my bed, like eat, move my arms, speak into this microphone and make a few phone calls, things that give my life some quality — all without crashing, without having one of these neurological episodes I've been telling you about. Ativan is the one thing I've found that stops the crashes, and as far as I'm concerned, that's the most important thing I need to do — stop the decline. Without these little pills though, I’m in some very deep illness, lying on my back with an eye mask and silencing headphones scared of the next airplane that’s gonna fly overhead and cause my overly sensitive brain to have one of these episodes of crashing.
As a reminder of what I've been going through, 2024 has been a year of these episodes. One a week turned into two and three a week, all the way up to about 10 in a week. And these are neurological episodes, kind of like seizures that happen with any kind of stimulus or exertion. And it's a total mystery.
When I hear other people talk about their symptoms of ME/CFS, I don't hear talk of this specific kind of seizure that I'm having. But! After having ten in one week, several weeks ago, on my own, I decided to try this Ativan approach. I take a small dose of Ativan three times a day to keep my brain right above the crash zone. And it's been successful. It's been about three weeks, I believe, since my last episode, except for today, that is. I'll tell you about that in a minute.
I'm not sure how it relates to being the hole in the donut, but this is me taking charge of my life and trying to save myself from further decline. Anyway, yesterday, I took my quarter milligram of Ativan in the morning, was able to get up from the bed and make my broth, make my Kachava, and then I got this idea. You know, Hallie’s in town this week. Maybe if I took another half Ativan, Hallie and I could go to church together.
And that's what we did. I took another half Ativan, I put on some actual pants. I put on actual pants, as opposed to just no pants — no pants or just underwear or some yoga pants. Anyway, I put on some pants and I put on a shirt, my favorite green kind of fall sweatshirt made by Prana. We loaded up the wheel chair and we went to church!
Hallie and I went to church, and it was pleasant. We first went to the discussion before church, and then we went to church. There's no doubt I was fragile. But we got to see some old friends. We got to hear the Tarnished Brass brass ensemble. We got to hear a nice service about gratitude, and I got to sit next to Hallie in church, and I kept my silencing headphones and a mask on just to be safe. It was very beautiful. And the sun, you know, as always, the sun coming through the UU church of Kent windows is a one of a kind sight to behold that someday I hope you can experience. And we left right after church, and came home, and I got into bed.
So it was a success. And then I got inspired. I said, “Hallie, let's take advantage of this Ativan window and go record some ‘Low Key Gliding’ out on the front porch. We can bring back 2020, back to the days of playing the khaen for all the young people on TikTok. And let's see what we can make happen… Here we go.”
And Hallie said, “Are you sure, daddy? It's been a while since you played any music.”
I said, “Let's go for it.”
That's what we did. Hallie Walker and I went out on the front porch and recorded 80 seconds of “Low Key Gliding”. We did it with her phone, which has a great camera and a great microphone. And Hallie is a great videographer. And 80 seconds was enough. It was quite satisfying, quite enjoyable. That piece is deeply embedded in my lungs and sitting there on the front porch, the best front porch on South Chestnut Street in the sun, and all the glory of the wind… and the air, I was inspired to pull out the best version of “Low Key Gliding” ever. And that's what I did.
So 80 seconds of my hit song “Low Key Gliding”, which made it big in 2020. There was a whole generation of young people between the ages of 16 and 25 that experienced “Low Key Gliding” for the first time back in 2020 during the pandemic. And now they've all grown up, and they look back and see this song with great nostalgia. It means a lot to ‘em. This symbolizes the pandemic and their earlier years. There's so much emotion tied up in this song.
So anyway, I posted this 80 seconds of “Low Key Gliding,” well filmed by my daughter, Hallie, and we watched it pop, we watched it go, we watched it do numbers. And let me just say the numbers for you here: Within three days, the video has 30 million views. Dagnabbit, I can't find my phone. I have a bed full of stuff, and sometimes my bed does not look like the guy who is the hole in the donut. It looks more like the guy that just ate a whole dozen of those donut holes, and there are crumbs all over the bed and in the car, but…I don't eat donuts. And I don’t eat donut holes. Anyway, here's my point…
30.2 million views in 72 hours, 4.9 million likes in 72 hours, 19,000 comments in 72 hours, and 595,000 favorites in 72 hours. So in case you're unfamiliar with the numbers in Tiktok, these are huge numbers. For the last three days, I've literally been the most famous guy on Tiktok, and here I am trying to be the hole in the donut. And I don't even know what that means, but let me just tell you the reason I'm feeling so upset right now.
Things have been going along well, haven't had a crash in at least three weeks. I found a little bit of stability. I thought I'd mastered the crash zone. But once I posted that video, I couldn't stop checking the numbers, and it's a very familiar feeling.
Okay, there's a video popping off. Let me check what it did. Let me check that number. Let me get that little hit of serotonin, let me get that little hit of dopamine. And all it takes is one glance at the number and I get the little hit, which is the last thing I need as an addict in recovery, a guy living with severe ME/CFS, seeking to grow along spiritual lines. I don't need those little dopamine hits. I need peace. I need calm. I need connection. I need God. I need… to be the hole in the donut.
That's what I want. I don't want little hits of the material world that will never be satisfied. I woke up on Tuesday morning excited but disappointed that it was only 19 million views. That's the kind of shit we're dealing with here, man. You don't understand.
So anyway, it was about noon today. My Ativan window was clearly coming to an end, and I wanted to check my numbers one more time. And I did…and with just a glance on that phone, it touched my brain real weird and I felt that seizure come on, that crash. And right away I try to pretend that I didn't actually check my phone, convince my body to go back. “No, this didn't happen. I didn't do this.” Doing whatever I can to reverse this, but I was unable to reverse it. And it happened. My brain clenches up. My heart starts racing. My stomach gets sick. It lasts 30 seconds and it's over. And then I was like, “Damn it, Hal.”
This approach that I'm taking with Ativan is essentially using an addictive drug that loses potency to cover up very, very severe illness. I'm amazed at the low doses of Ativan. I'm taking a total of 1 milligram, which is small. I mean, just the recommended dose is 2 milligrams a day, and I'm taking 1 milligram. If it went on working like this for years and years, I'd be satisfied. But you never know. I have no idea how this little Hal Walker method, how sustainable it is. It's working today. At least I thought it was, until I had that crash…. a crash , maybe we should call it an episode. It's an undocumented episode that no one knows what the hell it is. No doctor knows. You know, my sisters know about it. You guys know about it.
By the way, I got some unfortunate news. Remember that post I did “Good News,” talking about how I was accepted into this hospice program? Well, it turns out it was too good to be true. (lol) I'm laughing because my mom likes the sound of my laugh, but it was too good to be true. They let me know a day later that… no, I mean, the woman came in and said, “You're accepted. You're accepted into the hospice program. There will be a nurse here on Friday.” And then when the nurse didn't show up on Friday, that was weird. And then on Tuesday, I called them, and eventually it became clear that I didn't have the proper diagnosis. Chronic fatigue is not a proper diagnosis for end-of-life hospice care. I'm not in an end-of-life situation. But somehow, at the time this woman took a real liking for me and was sending me into the program, but they changed their mind, and I am no longer in a hospice program. It was hugely disappointing at the time.
And on top of that, recently I had an appointment with the supervisor of my nurse practitioner psychiatrist. He made it clear that they can no longer prescribe Ativan to me. It’s a controlled substance and I don’t have a psychiatric diagnosis. A psychiatrist can’t prescribe that medication for a diagnosis outside of a psychiatric diagnosis. So another big disappointment.. like a huge disappointment. Like “What the fuck am I gonna do” kind of disappointment.
But here I am figuring it out on my own.
Telling the whole world on Substack — that this boy is not well cared for in the medical world. I have poor insurance from the healthcare.gov. You know, I have a primary care doctor downtown at the local, (sigh) Axccess Health. She's a wonderful person, but, you know, I need someone who's ready to think outside the box.
The fact is, there is no known cure, there's no known treatment, no known cause, barely a diagnosis. There are a handful of youtubers that seem to know how to solve the problem, but everything they say is everything I've tried. And usually I feel like they’re talking about a different illness. They’re talking about “chronic fatigue.” Not whatever this beast I have is.
And it's a scary place to be. Let me just say that out loud. I'm scared. Right now, thanks to a half milligram of Ativan, I'm not as scared. Whenever it starts running low, I start getting scared. And as an addict in recovery, I don't like the idea of becoming a pill addict, but I don't see any other option. But I guess I’m gonna find out the other options when my Ativan runs out in a couple weeks. So stay tuned.
So…be the hole in the donut. Let's explore what that means and see if it has anything to do with any of this.
What I think it means is live in the spaciousness. Let God do most of the work. It's talking about humility, seeing things as they truly are. Be one among many. Reach out and see where you can help somebody. I’m saying this to myself, by the way, not to you. Hal, be the hole in the donut. Live in the spaciousness. Be willing not to know. Be willing not to know the answer. Yeah don’t pick up that bite of attention. Put the credit where the credit’s due.
My sponsor called me an “attention seeking missile” and he was right. Hey everyone, look at me. Look over here. Look at me. See what I can do. Watch this. Seeking attention. seeking validation. Trying to fill that God sized hole. But at the same time, I'm helping people. That's the curious part. Over and over again, thousands of comments saying, “Thank you so much. Hal, this song changed my life”. I'm gonna read a few of the comments for you, a few of the good ones. They're so amazing. Twenty thousand comments. I won’t read ‘em all. Let me just pull this up for a sec. There's this one I loved. Let me find it…
“Take us there. Magic Man, we need to escape for a few.” “Oh man, missing hearing this sound. Thank you so much.” “I feel like I just ascended. What is this instrument?” “Bro has been playing this since 2020 and he just gets better every year.” “I miss when nostalgic beats were TikTok’s primary trending music”. I know. TikTok has changed so much since back in my day. I'm looking for one in particular one… “I know this guy since like 2020. Crazy he's still doing it.” “It's sad. I've been following this man for years and I haven't heard this sound in a while. It brings so many memories and I'm so grateful I get to hear it again today.”“The way my mouth dropped. the sounds… amazing. Oh, my God.” “This scratches my brain in a good way. I don't know why, bro.”
There's one I'm looking for, but I can't find it about this guy who read a whole book while he was listening to Low Key Gliding the whole time. “Thank you for always trying to play such a breath heavy song for us with your condition.” “That song, when I first heard it so long ago, brought me a moment of peace when I needed it the most.” “Your songs, to this day and forevermore will hold a special place in my heart.” “Hal, you are an inspiration and an artist, bringing the music you make to all of us. Thank you so much for everything you've done. I hope this reaches you to tell you love you, man”.
So there's thousands of these comments of people expressing their appreciation. And there I am hungry for the numbers, making myself crash because I needed to check one more time.
But what I want to be is the hole in the donut, the empty vessel. The empty vessel. The flute, open and hollow, full of space. And the divine moves through the flute to make the beautiful, melodious sound. Yes, that's what I want! That's what I want.
That's what my sponsor says. He says, ”Feel the joy, feel the appreciation for the gift, read the comments, connect with the people, and then move on, live your life and let it all go. Be the hole in the donut. Hal”.
I don't have any answers for you, but I think I may have said everything I need to say. I'm in a very uncomfortable place. I'm in an uncomfortable place. It's scary. It's scary being so powerless over my body. I guess that's the hole in the donut. You know, there's no condition, there's no diagnosis. There's just what is. This is what is. This moment is what is.
It's just the hole in the donut. (lol)
I think that's it. There is no donut. There's no, there’s no anything but what is.
And what is is the hole in the donut. It's all just fine. And all the scary thoughts that my brain comes up with, that's just the crumbs, that's the mess. The hole in the donut though…
I don't know, I'm gonna let you have the final word on this. Tell me in the comments, what the heck does my sponsor mean? “Be the hole in the donut.”
Thank you for listening. It's been fun. Thanks for letting me go on and on. Thanks for sticking with me. I really appreciate you. Sending love, sending all the best, sending care and love and appreciation.
I'll talk to you next time. bye, bye…
Hey… remember. Enjoy living that body of yours. It's not going to be around forever. May as well love it while you got it. Play frisbee, go on a walk, play ping pong, go dancing. If you can do those things, or roll around in your bed. Kiss your partner. Pray. Sit quietly. Wait. Be the hole in the donut.
Bye, bye. ❤️
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