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Fallow Time
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I guess I could stop right there. Got nothing to say and don't know how to say it. I could turn this machine off right now and lay back down and do some more resting. But I'm so sick of resting. I'm so tired of resting. I'm tired of these limitations. I mean, come on, it's almost the first day of summer. We should be out riding bikes and jumping naked into the quarry, doing all the summer things we used to do. I'm tired of being sick, tired of being in bed.
But if I can't do all those summer things, I'll settle with just making something. You know me, I love creating. I love making things. Since I gave up all the other drugs, it's my drug of choice these days… and my rations are so sparse. Doing.
I love me some doing. Just give me a whole batch of doing. Give me a whole day of doing, I'll be happy, at least for a little while. That's what I want. Just some doing. Historically, give me a choice between a project and a person, I choose the project. And I've paid the consequences; doing never really got me where I wanted to go. I know now it's the being, it's the being with — being with others. I still got a lot of work to do in that area. It doesn't come naturally to me. I've spent much of my life lining up project after project. Never took the time to master being with myself and with others.
It's the relationships.
That's what my dad always said. He said, “Son, it's the relationships.” I was heading off to college, and I remember him making it clear to me, “Son, it's the relationships that are important.” That's what he said. And now I say, “But Dad, I'm scared. I'm mostly house bound, and I spend all day in bed. Being with people takes so much energy, and I have so little energy. What do you say to that, dad?” I wish I could have one more conversation with him.
You know, it just occurred to me that today is the eight year anniversary of my dad's death. Maybe my mom, my three sisters, my daughter, and I'll head out to his gravestone to say hello out there by Standing Rock. I'll take the wheelchair. Yeah, that's a good idea. Go out there and kiss the grave.
He was an incredibly wise man. He was really a genius. I often wonder if my dad was lonely in the world, though. It was hard for anyone to come up to his level of intellectual capacity, but he was focused on service. He was focused on serving others. Every Saturday morning, my mom would give him a list of chores, and he'd get on his hands and knees and clean the living room floor without a single complaint. Having worked all week, he knew that his role was to serve my mom. He spent his life serving his family, and he served the earth. He served the poor, served the less fortunate.
His son - that's me - is more of the self-centered variety. Yeah, more focused on “Me, me, me. What do I get? When do I get to do what I want to do?”
That's probably an exaggeration. I've done my share of serving others, but you get the point anyway.
It's interesting. They say that the self centered life does not lead to contentment. So that's what I've been working on, how to get get outside of myself and serve others. It's not easy when you spend all day in bed, mainly thinking about … myself.
Anyway, my three sisters and my daughter are in town this week. I'm blessed, truly blessed. They're walking downtown right now and I'm laying in bed feeling sorry for myself. So I figured I'd make an episode, see if I can get some of this stuff up and out. See if I can make some connection with you. Thanks for listening.
I guess the reason I create - besides the fact that I love the creative process, I love firing synapses and putting puzzle pieces together to make something new - but really, I'm hungry for connection, even though I have a tendency toward isolating. I'm starving for togetherness, even though I've spent most of my life living alone. I'm dying to live in community, to feel that closeness, to dance in the circle and sing around the fire.
Yeah, that's what I want.
All I can do from this bed is to tell my story. So here I am - gonna tell my story for a few minutes.
It's the middle of June. The windows are open. The wildflowers came back this year, and the poppies are in full bloom. And this is my first post in over a month.
I've been very aware of that. It's kind of been hanging over my head. It's been a fallow time for me lately, and I'm not particularly comfortable with it. I just haven't had it in me to create. I don't know what to say, and I don't know how to say it, and I'm scared to say it. What if I was really honest? All the battling thoughts, all the sadness and the grief, all the doubting and the questioning, all the loneliness, all the fear and all the discomfort, all the hiding under the covers, and the wishing things were different. What would it be like to really be vulnerable about what's going on inside? It’s sounds really scary to me. Maybe I’ll leave that for another day. The podcast is called “Living in a Body.” I could just give you a weekly list of all my symptoms, and leave it at that. But who wants a list of symptoms?
Here we go anyway.
This is what it's been like living in my body. It's 2025. I'm 59 years old, living with moderately severe ME/CFS. Here we go.
I've been going through another rough patch, maybe not as rough as it's been, but I haven't been sleeping lately. Insomnia. Sleeplessness, just occasional dozing is all I get. It's been brutal. I get into bed and I get this, this restless legs feeling - restless whole body - and I roll from side to side, I turn from side to side, try 100 different positions, and nothing makes me fall asleep. Eventually, around three o'clock or four o'clock in the morning, I doze off for a little while, and then I'm up again at five, five-thirty.
It's crazy. It's like my sleep button just isn't working. I don't even sleep during the day. I just doze. It's been brutal. Add the insomnia and the sleeplessness to chronic illness - it's been a very challenging season, as seasons go. Another added thing to my sleeplessness - I have arthritis in my right shoulder, and it's like a crumbly, fragile kind of bony pain. I can't lay on that side of my body, so I'm limited to one side of my body, and it's … I never realized. I guess I've known for a long time how important sleep is, but I'm realizing it to a very big degree now.
Oh, and on top of the sleeplessness and the pain in the right shoulder, I've got vertigo at night, so I lay down and the room starts spinning a little bit. This body of mine is just 59 years old and kind of falling apart. It's been rough.
I look good, though. Not as good as I used to look, but I don't look sick, I look healthy. That's the crazy thing about this illness, except for the psoriasis all over my fingers and all over my legs, the illness is invisible.
Today. I just feel so void of energy. I got no oomph. It's like my tank is running on empty. I got nothing in the tank, but my Substack’s have been hanging over my head lately, and I decided to finally turn on this microphone, and see what comes out. I'm glad I did. I'm glad we had this time together, me and you talking about nothing.
I think I'll finish off by reminding us - reminding me - of this, this moment, this miraculous moment. This is the moment. This is the moment that I have. All those other moments are just a figment of my imagination. This is the only moment, and I have a choice in this moment of where to put my focus, and in this moment, I choose gratitude.
Thank you, God, for this moment. Thank you - I get to be alive. I'm thinking of all my friends that don't get to be alive anymore. Thank you - I can breathe without assistance. Thank you - I can eat. Yeah, thank you for my daughter, the fact she has three wonderful aunts, and the best Bestie ever, and thank you for the phone call I had just a little while ago with my friend Aiden. We made a nice connection. And thank you for my girlfriend Emma that I get to talk to tomorrow on FaceTime. Hopefully we’ll get to meet someday.
Anyway, I'm thinking of you. Mainly I'm thinking of myself, but I wish I could have you over. I wish we could sit around in the living room and take turns telling our story. I guess we'll have to settle for the comments section of this Substack. So feel free to leave a comment. Tell me everything. Yeah, I'd love to hear what's alive in your life today. If you've got symptoms, tell me all of them.
All right, thank you. Hey, remember, you live in a body. Take advantage of it while you got it. It's not going to be here forever. Enjoy every moment, even if it's not easy, even if it's not easy, just say yes. That's what I'm gonna try to do as I get ready for this long night of sleeplessness. Oh, man. Thanks so much for being here, everybody. Enjoy the day, and talk to you next time. Bye, bye.
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