Hi. Welcome. Press PLAY above to hear the intended PODCAST version of this episode with original music. See the full transcription below.
Better Days
Hi. Remember me. It's your friend, Hal. This is the “Living in a Body” podcast. Here we are. It's the middle of summer. The fans have been going non-stop for weeks. The windows are open. I got practically no clothes on. Yep… you know me. I loooooove summer. And I'm just here to check in, just for a quick hello and “how-de-do.” Sending love to all you my beautiful readers. Thanks for being here.
I want to let you know that I've been feeling just a little bit better, and it makes a big difference. After practically a whole year of decline, hitting some of my lowest lows, imagining that my life was coming to an end, I'm having some better days.
This morning, I was driving up to my 12-step meeting. Yep, that's a big deal. I was driving. It's true. Me in a car on I-480 heading up to Solon to be among the living — with my electric wheelchair securely hanging on the back— out of my bed, out of my house, in a car, on my own, with the windows wide open on the highway. Like the good old days, heading through Streetsboro, past Giant Eagle, past Home Depot, past the turnpike. It's amazing. Look at me. Look at me driving. Yay!
To be honest, after just a few days of feeling a little bit better, I'm already taking it for granted. I'm planning my life around feeling better. When the time is right, I promise I'll let you in on my plans.
So there I was driving on I-480 minded my own business, 60 or 65 miles per hour. And then what do I see? I look over to the left, and there's Hallie's mom, my ex-wife Shannon, half her body hanging out the window, seemingly cheering for me, with her arms waving up in the air. I imagine her saying, “yay, Hal, go!” It was a beautiful moment. It was so exciting just to run into someone I know on the highway. There was Shannon's excitement just cheering me on. Like, “Hal, you're out of bed, you're out of the house.” There was amazement and disbelief in her eyes. It was an exhilarating and delightful moment. I just wanted to share it with you. I wish I had a picture. It stuck with me all afternoon.
I sent Hallie a voicemail to tell her about this interchange between her mom and her dad on I-480 and I learned that Shannon was on her way to the airport to visit Hallie. It was one of those moments of serendipity that everything had to go exactly as it did that morning to make her car pass mine at just that moment and have that wonderful exchange.
I'm so grateful today to be feeling just a little bit better. It makes all the difference in the world, just to be a little bit better. You know, 2024 was a rough year, and even the beginning of 2025 was rough. This illness is a one day at a time illness. I never know what body I'm going to wake up into in the morning.
Lately, it's been consistently a little better. I am not as ill. I'm not as weak. My nerves are not as sensitive. My ears are not ringing as loud. I'm able to eat and my breathing is calm. I'm falling asleep and I'm sleeping through the night. I may have a minor flare up, but I'm not having any of those devastating, life-altering crashes that I was having last year. I'm not using Ativan and I'm very grateful. I still need to spend much of my day resting, but these are definitely some better days.
Of course, there's no rhyme or reason to it. I'm not doing anything different. I am taking two and a half milligrams of Abilify every day. But I just can't imagine that's having this effect.
I think it's just the random will of the illness. It does what it wants, and right now it just decided it's gonna ease up on me a little bit. It said, “Hal, you deserve a little break. I'm gonna give you a little bit of summer time.” Yeah, thanks ME/CFS.
Here's another story about celebrating being just a little bit better.
A couple weeks ago, I drove to Oberlin College just for an afternoon at my beloved Unitarian summer camp, called Summer Institute that happens every year in July. And I'd been going for 25 years up until the pandemic, when everything changed and I got sick. But I went for an afternoon to Summer Institute, and while I was driving up there, I called my daughter, Hallie, and I said, “Hallie, guess what?” And she said, “What, Daddy?” the way she does. And I said, “I'm going to Summer Institute. I'm in the car now, and I'm on my way.” And Hallie was so excited. She was so excited for me and so happy for me. Her dad was out of bed in a car the way she remembers me.
Later that afternoon, I got a text from Hallie. It said this, “I am literally so happy you're able to go to SI, that literally made my entire month. I'm beaming and floating around my apartment.” Yep, thanks Hallie.
So I'm here to spread a little bit of the good news today, your friend Hal is feeling just a little bit better. Thank you, God.
You know, I don't know what to expect tomorrow or the next day. Today has been literally one of the best days I've had in a while, driving up to Solon, I really enjoyed the 12-step meeting. You know, I take the wheelchair everywhere I go. It's really convenient. I pop it right up onto the rack in the back of my car.
And then on the way home, I stopped at Giant Eagle to do a little grocery shopping. I love grocery shopping. And thanks to all the times that I've bought from Giant Eagle on Instacart, I had $75 worth of rewards. So my groceries were free. Yay! Free groceries from Giant Eagle! $75 worth. It doesn't get much better than that.
Well, I'm gonna close off this episode by sharing some big news with you. Yeah, with all these better days, or with this handful of better days that I've had, I made a decision. I bought a lying down plane ticket to England. Yep, some of you may know that I've been in a long distance love relationship with a woman in England named
. We're a Substack couple. We met on Substack back in October of 2024 and we've been hanging out on WhatsApp and FaceTime ever since. It's been beautiful. She's an amazing person and we have a wonderful connection.And guess what? In September, God willing, I'm going to England. Along with my traveling companion, Annette, we are flying to London, England, where Emma's mom is gonna be picking us up, and we're gonna drive the two hours north to Warwickshire, where Annette and I have an Airbnb waiting for us in the rural English countryside, just a few miles away from Emma's house and Emma and I are gonna meet for the very first time.
Yep, I'm coming. I'm coming to England. Oh my god, yes. I can’t wait to tell you about it.
So that's the exciting news I wanted to share. We're counting the weeks down. It's down to about seven weeks until Emma and I meet for the very first time after 10 months. It's a big deal for both of us. We've been hoping this would happen. Like me, Emma lives with a nasty version of ME/CFS. So our ability to travel, our mobility is very limited. So I'm taking this opportunity of feeling just a little bit better to hop on a plane, lying down all the way, and hop over to England. Can you believe it? Yay.
Everyone. That's my story for today. I'm gonna keep it short. Thanks so much for listening. Thanks for caring. Thanks for hanging out here on Substack. Remember, you got a body. Go live in it. If you're having a better day, congratulations. If you're having a not so better day, hang in there. You never know what tomorrow's gonna bring. All right. I love you. I care about you. I'm still here. Stay in touch. Bye, bye.
Share this post