Living in a Body
Living in a Body


Episode 45 -- In the Jaws of a Monster

Hi. I’m Hal. Welcome to “Living in a Body.” Please click the Play button above to hear the podcast version of this publication. I hope you’ll share this episode with one friend. Thank you!



Living with this illness is like being in the jaws of a monster and you never know when it's gonna take another chunk out of your life. This week, ME/CFS took another bite out of mine and I'm devastated. Today, I'm more bedridden than I was a week ago. I'm in unrelenting discomfort, my ears are ringing to high heaven and I have no idea where it goes from here. I'm calling my sisters several times a day for deep crying sessions. I'm scared.

Every other time that I've had a major turn for the worse, the symptoms eventually balance out to some more manageable state of normal, but the manageable states of normal keep getting worse. And of course, no one knows what to do about it. The doctors don't know. The alternative healers don't know. The commenters on Facebook that think they know don't know and I don't know. The not knowing is terrifying. I'm in the clenched jaws of a monster and it does whatever it wants to do. My friend Peggy refers to it as the "endless pit of suffering of ME/CFS." That damn phrase rings through my mind and scares the hell out of me as I lie here in this adjustable bed with way too much time for thinking. Please indulge me as I say it out loud. Fuck this illness.

You should see me. I take such good care of myself. I pace all my activities. I take lots of deep rest. I don't smoke, I don't drink and I don't watch TV. I eat well. I drink reverse osmosis water with minerals in it. Everyday, I take high quality supplements, 500 mg of Oxaloacetate and 2 mg of Abilify. I stay in close contact with good people in my life and in between all the grief and sadness, I practice smiling all day long. But this illness doesn't care about the good things that I do. It doesn't care that I'm Hal Walker and that there's so much life that I still want to live. ME/CFS has a life of its own and like a ruthless thief, it keeps stealing from me whenever I expect it the least.

For weeks before this crash, when people would ask me how I'm doing, I've been glad to tell them, "I'm on a manageable plateau. I generally know what to expect when I wake up in the morning and one day at a time, I'm getting used to the new normal." And then out of the blue, last weekend happened. Some mysterious switch got flipped and I'm living in the aftermath. I feel so unwell. I can't leave the house and at times, I can barely sit up to write. The ringing in my ears is maddening. It's strangely connected to an awful numbness in my brain that extends down to my belly and to all my weak, numb limbs.

Yesterday, I invited my 91 year old mom over to rub lotion on my icy cold feet. When I reached out to hold her hand, the grief broke through us both and together we broke down in tears. We wept for about 15 minutes. I'm grateful for my mom’s intuition to crawl into bed with me and let me know that it's ok to cry. I've been crying so much. Sometimes it feels like there's no end to the crying. I'm experiencing layers of grief on top of layers of loss on top of layers of illness. I pray to God that there's some other side to all this muck that I'm trudging through.

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This post is a cry out to the “millions missing.” I need you. It's a love song for Peggy and Martin. It's for Emma and sweet Lizzie. I'm here with you. These words are a shout out to the ones who lost their jobs, lost their loves and lost their lives due to this illness. I'm grieving with you. It's a prayer to all the ones who are trapped in bed, who live alone and who don't have the proper care. I have nothing to say but "I care about you" and I'm so, so sorry. It's just not fair. Please know that you’re not alone.

Just like you, I’m not ready yet to go missing. I want to go back to the way it was. I want to give assemblies in elementary schools and then walk out to my car knowing that a whole school is in love with me. I can't stand the disappearing. I want to direct my choir and play concerts and gather around the piano for singing. I want to ride my bike through town with my head held high and greet my neighbors with a “Hey! How’s it going?” I'm not ready to let go of my old life. I’m so afraid of being forgotten.

Johanna encourages me to feel it all and I assure you, I'm feeling it all — every ounce and every wave of the feeling. She tells me how lucky I am to have all this time to focus on training my mind and developing a relationship with the great mystery. I think I know what she means, but sometimes I question whether I’m cut out for the spiritual way of looking at things. It's difficult for me to see the blessings in all this discomfort. My main prayer lately is, “Ease up on me, God. C’mon! Ease up.” I’m dying for some sort of relief, but there's just nowhere to run. It seems that reality is my only option. At times, the intensity of the feelings are more than I can handle. But somehow, 15 minutes at a time, I keep handling them.

As I've told you before, over the holidays, I'm taking a break from publishing on Substack. Depending on how it unfolds in this body of mine, I hope to be back with a more hopeful message in the new year. It's been a little dark around here lately. While I’m away, I’d love to stay in touch. I'm always open to encouraging words in the comments. Thank you so much for being here.

On a final note, I wish you the best as we approach this season of wonder. May your life be full of divine love and togetherness. May we all break through the walls that separate us and may this new year bring peace. For today, enjoy living in that body of yours. I’ll try to do the same. ❤️ Hal

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Living in a Body
Living in a Body
Hal Walker, Ohio musician and writer living with severe ME/CFS, weaves music, stories and community from his bed.
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