Living in a Body
Living in a Body
The Story of a Morning

The Story of a Morning

Episode 52 -- A Roadtrip and the New Normal

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The Story of a Morning

It's 11:00 in the morning on a Tuesday and I just took a one minute cold shower. I was hoping that the cold water would shock my adrenals just enough to jump start me into this day. For at least a few minutes, it worked. As I dried off with a clean towel, combed my hair and put my clothes back on, I felt almost like a normal person. Five minutes later, I'm back in bed fighting the urge to turn off the light, shut down the laptop and curl back under the covers. I wish I could adequately describe to you what it feels like to live in this body. If you could understand, maybe I wouldn't feel so ashamed for still being in bed at 11:00 in the morning.

For most of the afternoon yesterday, I was dreaming of a solo roadtrip to see Hallie's show in New York City on March 27. She's co-producing and co-starring in a show called "54 Below Sings TikTok." I'd do anything to be there to support my daughter. And if she'd allow me, I'd love to perform a quick rendition of “Low Key Gliding,” the song that made me famous on TikTok's "for you" page. It's a crazy idea, but I'm determined to make the trip happen. The plan is that I would turn the back of my Prius into a bed and I'd lie down at every rest area between here and Brooklyn. I'd stay in as many motels along the way as was necessary and I'd hire my friend Julie to do all the food prep and the packing for the trip. The vision that I'm having is a romantic picture of me on the road, wheelchair in tow. Finally, after all these months, I'd be free -- free of this house, free of this bed and free to go where the spirit leads me. Somehow, yesterday's version of the story also included a certain degree of freedom from this illness.

But then this morning arrived. It was one more rude awakening into the reality of living in this body. In this new normal of the last couple months, mornings are the worst. On most days, I wake up startled and shaking. Once again, I have to come to terms with the fact that chronic illness is real and that this really is my life. The alarm goes off at the break of dawn, but I barely come alive till almost noon. For a task master like myself, getting through these unproductive, symptom-heavy morning hours is especially challenging. It's 11 am and after my second nap of the day, it takes everything I've got just to pull my head off the pillow one more time. My grandfather's protestant ethic has me convinced that there's something terribly wrong with this scenario. The ringing in my ears is a constant reminder that the health and freedom for which I long is not an option for me today. Here's the story of a morning.

I've learned from experience that morning begins at bedtime the night before. I'll admit that I stayed up a little too late last night. After cleaning the kitchen and making a couple good connections on the phone, I "treated" myself to another online game of Go and some mindless scrolling on TikTok. I finally turned off the light at about 10:30 and I fell asleep quickly. I was tired. I'm glad to say that I slept all the way through the night. It's not unusual for me to have vivid dreams where my health is back to the way it used to be. I had one last night. I can't remember it now, but it was one of those where I was riding my bike or playing frisbee or going on a long hike or making tender love. Whatever it was, my alarm went off as it always does at 6:25 am.

The alarm signifies that the wondrous escape of sleep is over and it's time to face another day. Due to the long haul nature of this illness, my first thoughts are often some version of dread or grief or disbelief. But whether I feel like it or not, I bounce out of bed and glide downstairs to squeeze myself eight ounces of organic celery juice. I always have a good stock of celery in the fridge. My Champion juicer is from the 1990's but it still gets the job done. I appreciate the familiar routine of making celery juice, but the whole time that I'm in the kitchen, I can't wait to go upstairs and get back under those covers.

It's a difficult complex of symptoms to describe. It's not like a cold and it's not like the flu. There's no sore throat and there's no fever. In fact, I look perfectly healthy and I’m not in pain. It's the queasy seasick feeling in my stomach. It's the ringing in my ears and the vague density in my brain. It's the buzzing numbness throughout my body and the weakness in my limbs. It's the deep fatigue that accompanies the heavy breathing, as if I just ran up three flights of stairs. My body doesn't seem to understand that there's no reason to be working so hard. All I'm doing is lying here with my eyes closed on a quiet Tuesday morning. Some days, I whisper tearfully to God to calm me through these uncomfortable sensations.

Speaking of God, when I'm back in bed, I sip my celery juice and I read the Twenty Four Hours a Day book. Today, the prayer for the day reads, "I pray that I may live the way God wants me to live. I pray that I may get into the stream of goodness in the world." Day after day, the reading doesn't offer the escape that I'm wishing it did. It only offers reality and a change of perspective. To be honest, I still get a little twisted in my head around the mention of God, but I've got nowhere else to turn and I'm hungrier than ever for the spiritual solution. At the same time however, I have a strong urge to run the opposite direction toward some immediate relief. This morning, I got deep into a child's pose and I cried out to the mystery to break through my closed thinking and to wake me up into the goodness of this moment. Living in this body, it takes discipline and practice to see that goodness. I know it's just one thought away, but it often feels way out of reach.

One of my morning practices is the daily game of Wordle. Today, after 6 wrong guesses, I failed the challenge. The correct answer was “RIPER.” Just so you know, I usually get it in three or four guesses. After questioning whether “RIPER” is actually a word, I was momentarily disappointed for my loss. But there will always be tomorrow's Wordle. I'm grateful that the New York Times only lets you play once a day. This daily ritual is a special part of my waking up.

Most mornings, I have a fifteen minute call with my twelve step sponsor and then a call with my sponsee. This is my early morning opportunity to break out of isolation and to practice rigorous honesty with my fellow humans. I don't always look forward to the calls cause I'm usually not in the mood for rigorous honesty that early in the morning. But I always feel better afterwards. It's amazing what a little human connection can do to take the focus off of myself and all my big complaints.

After 30 minutes of sleepy meditation, I head back to the kitchen for the first of two small morning meals. My first breakfast is 1 1/2 ounces of oatmeal, a fruit, a tablespoon of olive oil and 6 ounces of soy milk. My food plan is written down the night before and weighed and measured precisely on a digital scale so I don't ever have to think about it. I'm grateful for this system that gives me freedom from my long history of insanity around coffee and muffins in the morning. (See Ep. 33 — The Muffin Man)

By now, it's about 8:00 and it's time to log in for Writer's Hour at the London Writers' Salon. Matt and Parul, who founded the online community at the beginning of the pandemic, have created something truly wonderful. Four times a day, writers from all around the world meet on Zoom to sit in silence and practice the craft of writing. The 8:00 hour is a tough one for me, but I can usually write for a few minutes before dropping my head back onto the pillow. I've met some great people at LWS and even when I'm crashed, it's comforting to have the glow of all those writers accompanying me through one of the tougher hours of the day.

The naps between 8 and 11 are intense. They're filled with dozing off, weird half-awake dreams, startled wake ups and tearful reality checks. At some point, I have my second breakfast of four ounces of protein and a fruit. And then at 10:50, it's time for the cold shower. I usually join the second Writers Hour at 11 when I’m a little bit more alive. As you know, I love the creative process. I’m so grateful for the days when I’m able to flow with the writing. It’s truly been a lifesaver.

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In my vision for the New York City trip, I'm willing to accept that I need to spend the mornings in bed. I imagine I’ll do all the traveling in the afternoon. The people that I've told about the trip have encouraged me to do a mini trip as a trial run. It's probably a good idea. But to tell you the truth, I have no interest in getting in the car today and driving any further than the Giant Eagle in Stow-Kent. I just don't have it in me. Maybe another cold shower would help.

For the last couple months, I've been settling into this new normal and I don't particularly like it. With the previous normal, the mornings weren't as difficult as they are now. In spite of the daunting challenge though, I've been able to adjust to each new normal that comes along. I gotta hand it to myself. I'm incredibly resilient. But with every shift in symptoms comes a new layer of grief and loss. I think back to just a few months ago with longing and I think about the future with trepidation, wondering what this illness will bring next. Maybe the Spring will bring some relief. Maybe I'll see you on the road in Pennsylvania. Maybe we can meet up at Hallie’s show at 54 Below. For today, my scooter Melba and I will be looking for you on the bike paths along the Cuyahoga River. After about 2 pm, that is.

Have a great week. Thank you so much for being here. It means a lot to me. Don’t forget. Enjoy living in that body of yours. Whatever you got… it’s not gonna be there forever, so take advantage of it today. I’ll try to do the same. I love you. No, for real. I do. ❤️ Hal

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Hallie Walker at 54 Below — Mar 27

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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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