Hi. For the podcast version of “Living in a Body,” please click the PLAY button above. (5 min) Also, please introduce yourself in the comments. I’d love to know more about you. Thanks, Hal
Smile
I had one of the hardest days of my life today. Over the course of the last week, my symptoms have become more severe on an almost daily basis. It’s been terrifying. But guess what? I’ve been smiling throughout it all. Sure, I’ve done more than my share of crying, panicking and staring off into the distance with a stunned look of shock. But honestly, all day today, I’ve been lying in bed smiling.
You see, I’m trying to outsmart this illness. I figure if my brain thinks I’m calm and happy, then ME/CFS will ease up on the symptoms. So far, it hasn’t been working, but I’m doing it anyway. It’s the funnest little project that I could come up with under seemingly impossible circumstances.
Just to be clear, I’m not talking about an ear to ear, showing the teeth smile. It’s just a subtle perk of the cheeks, a quiet lift of the ears, an easy curve of the lips and a calming thought in the brain. Sometimes, the smile even turns into a full blown laugh. I mean, it’s funny. Here I am going through the most challenging days of my life, moving steadily in the direction of severe ME/CFS and I’m smiling. And I’m laughing.
I guess it feels like the better of my two options. I’m well aware that suicide is the number one killer of patients living with severe ME/CFS. The illness doesn’t kill you, but the bottomless pit of suffering makes you kill yourself. And just so you know, ending my own life is not an option for me, so instead, I smile and I think thoughts like, “Thank you, God.” In fact, I say that one alot. I’ve been repeating it all day in my mind. “Thank you, God” and “I trust you, God.” I don’t even believe in God but I talk to God all day long. I say, “God, I can’t wait to see how you work this one out.” I’m hoping that one day God will help me make sense of all this suffering. Maybe then it will all have been worth it.
Just to be clear. While I’m doing all this smiling, I’m literally on the edge of a total breakdown of my being. The symptoms are intense and unrelenting. My heartbeat is fucked. My breathing is screwed. My ears sound like a never ending siren. My body is buzzing all over with a weird, prickly weakness that I would never be able to describe accurately to a poet, much less a doctor.
So anyway, I have an invitation for you. I’m planning on spending the next seven days smiling. It’s gonna be that quiet inner smile that I was just talking about. I’m hoping that you’ll consider joining me for a full week of smiling on the inside. Here’s my thinking… Whenever it occurs to you, just think of your old friend Hal writhing in his bed, smiling and laughing. Then put on a little smile of your own and maybe even let out a little chuckle. Let’s outsmart this illness together. It’ll be fun. What d’ya say?
I’m so grateful for you and there are so many things I want to tell you. As I lie in bed smiling, I can’t stop coming up with thoughts that I want to share with you. At times, I wish it would stop. I wish I could just smile without all the big ideas. I guess I’ve got a whole week ahead to practice. But again, I’d like to invite you to spend the week smiling with me. I can’t wait to think about your smile. Maybe we can change the whole world. Maybe with our smiles, we can outsmart all the terrible illnesses and all the awful atrocities of the world. I know it sounds naive, but maybe… just as an experiment. What do we have to lose? Are you with me? I hope so.
I’m so grateful that you’re in my life. Even though I don’t know many of you, I appreciate that you care enough to read my words. ME/CFS has taken so much away from me in the last couple years, but it hasn’t yet taken my words. If it ever does, it sure can’t take away my smile.
Let’s check back again next week to see how it went. Have a great week. Try smiling through the hard stuff and see what happens. I love you. ❤️ Hal
Smile