Hi. I’m Hal. To listen to the podcast version of this episode, please click PLAY above. I hope you enjoy. Big ❤️ and thanks to
for her help formatting the last couple posts.
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Crash
This is a hard story to tell. It's a story that my mom may not want to listen to. It's a real story of living in a body. Living in this body, the Hal Walker body that I've been so blessed to live in my whole life. But it's been rough lately.
For the last several months, I've been having crash after crash, crash on top of crash, each crash bringing me to a deeper state of illness, and I want to talk about the actual episode of crashing. I want to give you some of the details.
So this last week, I went a week without a crash. My whole life has been centered around doing whatever needs to be done to avoid further crashes. After seven days, I was feeling pretty confident. I was basically not looking at my screen unless I was on Ativan, which was maybe two times in the last week. I was very cautiously asking my caregiver Mango to read my texts for me. I was waiting for Cameron to come over to read my emails and to look through my bank accounts. And I was sitting quietly with my higher power for hours on end, in the dark much of the time, sometimes with the window open.
And on this particular day, which was the day before yesterday (it was a Monday), I was laying here very ill looking across at the chair and saying, “God, it's just you and me today.” All day feeling incredibly fragile, like wondering what bite of food or what glance at my phone will make me crash. I was content with my new normal. I was like “Okay, I can handle this. It's not easy. It's a lot harder than it was two weeks ago, but now that I have mastered this avoidance of crashing, I can handle it at this level.”
And then at about five o'clock, Mango came up and opened the curtains because it was a beautiful day. And light came in the window. I had noticed that Hallie had sent me a text earlier of her most recent TikTok video. In case you don't know Hallie has been really killing it on TikTok lately, she is doing these original monologues that are just awesome. If TikTok hasn't been banned by the time you get this go check it out. (@ hallielooyaa on TikTok) She's really killing it. I love seeing my daughter using her creativity in this way.
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Anyway, I had asked her to send me her videos because I'm not watching TikTok these days and at about 5:00, I said, “you know, I'll just listen to her TikTok. I'll listen to it with headphones, but I won't watch.” I glanced over at my phone. I pushed the play button. It's a one minute long video. 30 seconds later, I was in a crash.
Un-be-fucking-lievable.
It starts off…it's hard to describe, but it's almost like an epileptic episode or a seizure. It comes on suddenly. It lasts for no more than a minute, lately they've been 30 seconds, but the consequences are devastating.
It starts with a boiling, a bubble in my stomach, like my stomach moves in a weird way. I’ve been having a lot of issues eating. My gut lately has just been a place of turmoil and chaos and bubbling. So it starts with a bubble in the stomach and then I think, “oh shit.” And then my brain fills with fear. And then I don't know the order of things, but then my heart starts to race and pump. And then what I'm picturing is a dump of adrenaline. Like my body is dumping adrenaline. And all that is followed by several very big burps letting all the air out of my stomach. That's why I have this feeling that these crashes are somehow associated with my digestion, my eating. It always starts with the boiling in the stomach, the bubble in the stomach, then big burps.
My immediate thought on Monday after having this was hopelessness, like, Oh, shit, fuck. Another one. I didn't have it beaten. I shouldn't have looked at that video. Why'd I look at that video?! That was so stupid.
And it's over in 30 seconds. I mean, 30 seconds later, my heart has stopped racing, and I'm left with the aftermath. The immediate aftermath is I feel better. You know, 20 minutes ago, I was lying sick in bed, and now my body is full of adrenaline, and I'm suddenly hungry. I suddenly can walk to the bathroom, no problem. Suddenly I feel a little bit better.
And then, little by little—this was four o'clock or five o'clock—little by little for the rest of the evening, that adrenaline started running off. And I could feel the drop. I could just feel the dropping. But then here's the pattern. This is a pattern by the way. It's happened over and over again 30, maybe 40 times over the last few months. Definitely more than once a week. I'm having this experience…each time it happens at a different moment. I remember early on, I was trying my hand at some calligraphy. I went downstairs, got the calligraphy pen out, brought it upstairs, did a little calligraphy, and glanced down at my phone at a text from my mom and—bam! Crash.
The other time my mom and I were making some watercolors together. I was staying really calm and I was having the thought as I was intently using the scissors to cut a piece of paper: “I’m actually enjoying myself. I can handle this. I can handle this level of illness.” Bam. Crash. 30 seconds later my whole life has changed. They come out of the blue. No warning. Or there's a momentary warning and I try to stop it. Several times I think I may have successfully stopped them…. I gotta simmer down for a sec. I'm getting all excited.
So on Monday, the crash happened. I was immediately filled with despair and hopelessness. I thought I had beaten it. And then the next day the next day the pattern is I have a hellish day of being wired, coming down off the adrenaline. It’s a terrible wired feeling where I cannot get comfortable in my body, shaking in the bed, crawling in the bed, trying to get my legs comfortable. And also I’m immune from the screen sensitivity right after the crash. I'm suddenly immune from screen sensitivity because of the adrenaline. It's like I'm instantly in a whole different body.
So I spent the day looking a little bit at the screen. I was cautious. But it was a hellish day. I had a visitor—I had my friend Annette over and we talked for a while. I've got little distractions here and there. But it was a hard day. Like one of the hardest days of my life. I keep having the hardest day of my life!
I have this journal where I write about my food and at the end, I write a few words about the day. Over and over again, over the course of the last few months, I write, “the hardest day of my life.” And again, “the hardest day of my life…harder than the last hardest day.”
Then guess what? I put out a Substack on Tuesday morning. The one about the song “Does Sound Have a Shadow.” And throughout the day, I was noticing comments coming in. I read a few comments, and I was feeling safe. I felt safe reading the comments because what my brain was telling me was I had the crash, I'm on the adrenaline, so I'm safe to read a few comments. Well, then at about four o'clock, I did a meditation. I did 20 minutes of meditation. Coming out of the meditation, I glanced at my phone and saw that there were a couple of comments. And I went to read one of the comments.
Halfway through the comment, crash. 30 second crash. It was a whimper of a crash. It's like my body doesn't have the crashes it used to anymore. They used to be much bigger, like they would last longer and they were more intense. But this was just a whimper, like my body just has a little bit of adrenaline to throw out. It barely lasted 30 seconds, but it was that same experience.
So this was two crashes in two days, and I haven't quite figured out the pattern. But normally, if there's a crash, the next day is the wired day. The following day is the new normal. And historically, that's been a very scary day. Waking up in the morning with a new level of weakness, lately it’s been a weakness in my arms where I can barely pick up a mug, or I barely have the strength to scratch my leg. So I never know what to expect on the third day, but oh God, it's getting rough.
I so wish some doctor out there would take an interest in me and say, “Dude, this is fascinating. Let's hook you up to some cables and figure out what's going on.” Instead, I'm left to figure it out on my own. I can go explain all this to my primary. She won't know what the heck I'm talking about. I can go explain it to my functional medicine doctor, she won't know what the heck I'm talking about. I can go explain it to my Chinese traditional medicine guy. He won't know what I'm talking about. It's a mystery.
Myalgic encephalo-fuckin-myelitis. Also known as chronic fatigue syndrome. I've got a nasty version of it, and it's shown its nasty head over the last few months, and I'm scared. I'm scared because I don't know how to stop it. For right now, I'm going to be more disciplined about looking at my phone. The phone is off limits.
Anyway, that's the story of the crash. I know I sound all upbeat and enthusiastic about it, but it's devastating. Over and over again. I mean, three months ago I was in a whole different place, and each one of these crashes has brought me down to a new level of illness.
You don't hear this particular story in the chronic fatigue syndrome world. Of course, I don't really know. I don't do the research. I have a few friends but I think this is a very specific pattern that's happening over and over again. I'd love to find other people who have found out how to stop it.
Alright, I think that's all for now. I'm grateful to have this life. I'm grateful to have a life. You know, there are a lot of people that would love to have a life right now. I'm sure my friend Reverend Steven Protzman would love to have a life right now, even if it were a challenging life. Of course, he's in peace now. I haven't been having a whole lot of peace lately. I'm feeling some peace right now because I'm on a half milligram of Ativan and I'm able to create. I'm a creative. I love creating! I love making things and telling my story. You know that about me.
Thank you God for this life.
Thank you for Mango, who is saving my life.
Thank you for my dear mom, who is just so heartbroken about my whole situation.
Thank you for my sisters and my friends that stop by,
and for all the tools I have to survive this.
I mean, I gotta say I'm getting an A+ in the hard class, thanks to my higher power. I couldn't do it on my own, on my own I'd be heading towards suicide. But I got a lot of support, a lot of people cheering me on and a lot of people praying for me.
So I hope you're well. Leave a comment, I'd love to connect with you. I won't read it though, not until Cameron comes over to read it for me.
Alright. Bye. ❤️
Crash