Big News! My big sister
just joined Substack. Please jump over there now and subscribe so you don’t miss out. I’ve been reading her “Skinny Dipping with Johanna” emails for months and I’m so glad that she decided to join us over here. Welcome to Substack, Johanna!
Three Sisters
One of the greatest challenges of living with ME/CFS is the unpredictability. I never know what body I'm gonna wake up into every morning. I think about all the healthy people who every day, they pretty much expect what body they're going to wake up into. Sometimes they get sick, but for the most part, it's the same body, and it ages over time, but it's usually the same body. That's not the case for me and others living with this illness. We never know what’s coming next.
Recently, I woke up to a surprise that I didn't particularly like. I'd been rolling along pretty nicely, feeling fairly stable over the several weeks between Thanksgiving and Christmas. On New Year's Eve, my mom and my sister Caroline were over, and we were sitting downstairs and enjoying some time in front of the Christmas tree. I was grateful for my stability, but I came upstairs and my ears started ringing super loud. And that's always a sign that something bad's about to happen. And I went to sleep, and I woke up at two in the morning having sweat through my clothes and very sick, weak, feeling in my arms, a loud ringing in my ears and just an overall illness that's hard to describe. But it's very scary, especially at two o'clock in the morning. So January 1st was a rough one.
And then January 2nd was even rougher. I woke up on January 2nd and my ears were just screaming, and I felt so sick. And it's a scary kind of sickness. It's not a sickness like a normal, healthy person feels like, “Ooh, I'm sick, but I just got to wait it out for 24 hours or 48 hours or a week, and I'll be back to normal.” You know, when you feel this sick with ME/CFS, it's a scary kind of “Holy shit. Is this what I'm gonna be dealing with for the rest of my life? And is this another downturn?” And all the mental stuff that goes along with the physical stuff is just very challenging. It's brutal.
Anyway, yesterday morning, I called my sister, Caroline, and she picked up. I said, “KK, I don't feel good.” And we talked, and I just cried. I cried and I said, “I don't feel good, KK.” She said, “What's wrong, Hal?” “I don't feel good.”
I just didn't feel good. I don't feel good. I just said it over and over again, and she was very loving and very kind, and wishes she could do something. But it's like, no matter what anybody says, I just gotta face it. I gotta face it by myself in the end, here in my bed, writhing in my bed, hoping that tomorrow when I wake up, it's not as bad. And I'm grateful to say that today is January 3rd, and I woke up and it wasn't quite as bad. My ears are not screaming, and I've had a little bit more function.
But my topic today is three sisters. In my email this morning, I got my sister Johanna's email. It's called “Skinny Dipping with Johanna.” She's been writing it for many months on Fridays, and I always look forward to receiving these. She's such a great writer. She has a very adventuresome life — inside and out. Some of her creative adventures include storytelling and dancing and coaching speakers and gardening and making art. And she's the kind of woman that was up late on New Year’s Eve swing dancing with the swing dance community out in Boulder. She’s the kind of woman that gathers her friends together on her birthday to do ceremonial walks and creative play out in the fields.
She lives in Boulder, Colorado and she's making a big move to Massachusetts this month. And this morning, I woke up to her “Skinny Dipping with Johanna” email and it announced that she was starting a Substack. And I got excited. I've been encouraging her to start a Substack for many, many months. And every time I get Johanna's email, I want to like and comment on it and share it on Substack, and I send her a message that says, “Johanna! Substack! Please!” And I want to let you know Johanna Walker has joined Substack. It's called “Skinny Dipping with Johanna.” And if I were you, I'd run over there right now and subscribe. And don't miss out. This was her first post today talking about this big move from Colorado to Massachusetts.
So the point I'm trying to make is, I have three sisters. I am profoundly gifted in the sisters department. I realize this topic is worthy of weeks of word crafting and essay writing, but I just came up with the idea today. So I'm just sitting in front of the microphone to tell you about it. But to tell you the truth, my writing life has been pretty non-existent lately. I just haven't had the wellness. I haven't had the oomph to sit down and write, especially now that I discovered I can just turn on the microphone and start talking. It's much easier. To tell you the truth it feels a little bit like cheating, but there you have it.
I remember times during ‘23 and ‘24 I'd spent hours here in my bed editing, wordcrafting, perfecting, and I loved it, and I'd like to get back to that eventually, but for now, this is what you get. I realize these spontaneous posts lose a certain amount of artistic somethin’ or other, but I guess it also adds a little bit of spontaneity. Like we're just sitting on the edge of our seats waiting to see what comes out of his mouth next.
But anyway, I have these three sisters, Julie, Johanna and KK. It's Julia Lowe, Johanna Marie and Caroline Carlsen Walker. They live in fear away places but I got to see each of them here in Kent at different times since Thanksgiving. And I feel so blessed. My daughter has three wonderful aunts who she feels so at home with and looks up to. And I have these three sisters that have supported me through some very, very difficult times.
I remember in the end of 2021 being on a Zoom call with them, just crying, wondering how much longer I was gonna live. This illness was so scary and I was just declining. I was having crash after crash, and I couldn't imagine the crashes ever ending. And I wasn't picturing living much past January of 2022. I was so scared. They sat and listened to me. Each one of my sisters, in her own way, has been there for me, phone call after phone call, me on the other end crying, saying, “I don't feel good. I don't feel so good. I don't feel good. I'm so scared.”
Anyway… and then they don't hear from me for a little while, and they're all relieved. Oh, good. I haven't heard from Hal for like three weeks. He must be in a better place. But more and more, I'm just sort of settling into the reality of this illness. And like, this is my life. This is my life, here in bed, and some days are worse than others, and some are a lot worse, like yesterday was… I’ve been saying this a lot over the last couple years, but it was like one of the hardest days of my life. It's such a mysterious, debilitating, uncomfortable, scary illness. You know weakness in the gut, screaming ears, weakness in the arms, a sick weakness in the arms. But it always changes. Wait a day, wait a couple days. It’ll change.
Every once in a while I get overwhelmed with self-pity and fear and thinking about my future — 58, bedbound, needing a full time caregiver, rarely leaving the upstairs. It's scary, but then you look at the world, the tragedy in New Orleans and tragedy in Gaza and the tragedy in the subway system in New York City. And I'm blessed with a peaceful, quiet, beautiful afternoon here in Kent, Ohio. It was a beautiful snow falling outside. I was sitting by my window watching it for a while. And I'm safe inside. And I have three sisters out there looking after me from far away places. And Johanna, who I wish I had a good antidote for you, not an antidote… an anecdote.
I do remember this one.
I was working for a summer outside of Boulder, Colorado. I'd ride my bike down from Rollinsville all the way into Boulder and go up on the foothills to smoke a little pot and come down into the Pearl Street Mall and hang out with the hippies. And I was writing a letter to Johanna saying “Everyone seems so fake. They're not real.” Everyone in their conservative corporate outfits — like the hippies were the only real people. I was the only real person — me with my messy clothes and my long hair and my revolutionary attitude, drinking coffee and crocheting hacky-sacks. And I was just judging all the straight laced people. And here I was in the center of the hippest town probably in the US back in 1986 and I was judging.
I'll never forget Johanna's response, which came weeks later, explaining to me about the Velveteen Rabbit who only became real when she was loved by another person. And that's what makes people real, is love. And everyone needs that love, and everyone becomes real when they're loved. So I got some good wisdom about love from my big sister Johanna, back in the letter writing days, back when our letters were full of colored pencils and markers and it took two weeks to correspond —rather than a text. Thanks for being such a one of a kind sister, Johanna. You’re amazing.
But I am blessed in the love department. I have three sisters that I love and who love me and each one in their own way, Julie in her very…. like, if you want something done, you call Julie. If you want a solution to a problem, call Julie. If I want a form filled out or a website created, I call Julie. She’s been there for me so many dozens of times helping me try to figure out what to do next on this wild health journey.
Julie was my big sister at Northwestern. She had just graduated when I was starting up as a freshman. It was the Fall of 1984 and I’d visit her in her apartment on the north side of Chicago. I admired her so back then and I admire her still today. In her 60’s, she runs a theatre company in LA and started a new career as an 8th grade English teacher. She’s kind of the opposite of someone living with chronic fatigue syndrome but she still takes time to help her little brother navigate this illness. Thanks Julie.
If I want a caring, loving, younger sister vibe, I call Caroline. Of course, she gets things done too. She helped me out a lot this last week. We call her KK. That's who I called yesterday in tears. I remember visiting Caroline as an older brother at Wooster College in Wooster, Ohio. I was kind of self absorbed. The main thing I remember is the Crandalls. The Crandalls was the the hippie’s fraternity. Those were the hacky sack playing, Frisbee throwing and pot smoking fraternity. It was the long haired, messy, flowing clothes fraternity. Whenever I visited KK, I went in search of the Crandalls. (lol) “Where are the Crandalls? I want to hang out with the Crandalls.” I wonder if the Crandalls still exist at Wooster. I wonder if they're still playing hacky sack. But Caroline is an awesome sister. She's a school teacher and a mom in Denver, Colorado, and she says, anytime I want to come visit and stay in her house, it's an open invitation. I appreciate that, KK.
All three of my sisters will listen to me cry, but it was really Johanna that taught me kind of the art of crying, the art of opening and sharing and listening. And you know, for years now, we've called each other and said, “Will you listen to me cry?” What a blessing that's been. But it's not all about crying. We have such a friendly vibe between us, me and my three sisters. I love it.
I'm the quiet one. We have an occasional family Zoom time, and I sit quietly while KK, Julie, Johanna, Hallie and my mom fill up the space with their stories. They've got great stories to tell too, but I'm the quiet one. I've always been the quiet one, over in the corner playing the guitar, playing the hand pan, off in the distance playing the harmonica. I’m the only boy. I'm the quiet one.
Well anyway… the point I'm trying to make is I'm quite blessed in the sisters department. And really, I want to encourage you to go sign up for “Skinny Dipping with Johanna,” Do it today. Let's support her during this challenging moment in life, moving from Colorado to Massachusetts, follow along on the story. It's going to be exciting. She's a great storyteller. Let's support her on this next phase of her path. Just sending my love and I want to send all my Substack followers over to “Skinny Dipping with Johanna.”
All right, that's all I got for you today, everyone. I'm taking it easy here. It's been a rough year so far, 2025 has not been easy. Damn ME/CFS. But as my friend Emma says, “it's my teacher,” and as my program says, “Be grateful for the hard things. Be grateful for the challenges.” Who knows what this challenge is leading me to? Who knows what kind of service I'm gonna be able to do because of what I've been through?
All right, Happy New Year. Sending all my love to each and every single one of you here on Substack. I'm gonna send this out and have some quiet time. Hey, I'll send you a picture of my of the beautiful snow out my front window.
All right. Thank you. Remember. It's January. If you've got a body, live in it. Breathe in it. Feel in it. Yeah. All right. Have a good day. Bye, bye.
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