That Old Life: Myelin, Magic, and Memory

Birth. Death. Laughter. Pain. Heath. Sickness. Our before and after. Something blue is where the story both begins and ends. Bursting from a moment of silence into endless shades of brilliant tones of possibility—this is where faith and hope reside.

I try to make others feel comfortable with my condition, and that Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) with central nervous system involvement doesn’t make me angry. Or sad. Or scared. But fear is part of this journey and the medication I choose today is a return to a shade of blue that can only be called peace. 

2019–Four years into my new life

“It will feel like a heart attack.”

I stare at my neurologist inquisitively, trying to play it cool.

“But it’s not. It’ll be enough to scare the hell out of you, though.”

“So it’s just a sensation from the CIDP and the damaged myelin? Why can’t we stop it?”

He looks at me. Not all questions have answers, only a moment of silence to hold onto faith and hope. I remember that old life of mine that wasn’t perfect but I loved, until my immune system took my myelin away. 

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I used to think I spent the better part of my 20s living hard had been a waste of life. Or what made me sick. Now I believe it was some subconscious awareness that in my 30s, my body would fail me and I wouldn’t be able to do those things I loved so much. Late night drinks. Kissing in cars. Pizza and Cheetos at midnight, walking down the street when the bar closed and singing way too loud at 2 am as you headed out to settle munchies at the diner before calling a taxi to take you home, to sleep half of Saturday away. During the week, I worked hard. I watch television now and read books. It’s a quieter life. There was a trade-off in living hard; you have a good time. Usually. Now, there’s no one to sing with at 2 am any longer. I had plans, though. I was getting to them in my 40s. I thought. If I could, would I go back and live life untamed? Would you?

“It will pass,” he reassures me. “It’s your central nervous system. The timing is off like the belt in a car.” He shows me using his hands how signals are misfiring when I take a breath or try to swallow and I can’t. “Just stay calm. Breathe through it.”

Today, in 2022, I make my way down Sheridan Road in Rogers Park–the street that runs parallel to Loyola University Chicago where I completed my undergraduate degree. I wasn’t exactly a model of fitness but I could walk, run, raise my arms in the air, and speak. I took for granted these were all perfectly normal things until receiving a medical diagnosis of a disease that strikes 5-7 out of 100,000 people on average in the United States. I joke to my family that they can either have me walk, talk, or breathe, but they can’t have all three at once.

My cane in my right hand and fancy coffee drink in my left. I don’t drink coffee but when in Rome… or near an establishment that has chairs…sign me up to drink the coffee. Plus I wanted a blueberry scone. Truth be told, I could be drinking water and munching on a mint. What matters is that I can do this myself today. Right foot. Cane. Left foot. Cane. Pause. Repeat. The ground is foreign. I could be walking in space and wouldn’t know the difference. Sometimes I can’t walk. I have to return to the beginning to relearn. Have you ever returned somewhere just to see the space or remember a lesson learned? You don’t live there any longer but a part of you hungers for that old life. I need blue today. I turn left onto Loyola Avenue and am brought back to an office building in the suburbs where I did my outpatient physical therapy.

 I was lying on the table as my physical therapist, Erin, moved my nonfunctioning arms and legs. I did my best to help her move them.   

“I need to walk by the lake again. I need to walk again. They said I would walk. I need to move. Please. My mom moves my arms up and down for me at home when I feel trapped. I feel trapped.”

She stands quietly beside me letting me cry with a hand on my shoulder. “Cry it out.” My voice was almost gone, crying was all I could do and let only a few others see. Fear doesn’t need to be huge or illness loud. It can be the quiet moments that you are fearful of losing. Losing independence. 

I smell the salt. So close. Keep walking, Jon.

I stop and lean against a tree for balance. Probably a tree I danced around when I was 21 and carefree. Being dizzy then was a hobby I excelled in. I watch students pass by. ‘Enjoy this. Just stop and enjoy this. Put down your phones and enjoy this please.’ I don’t actually say that for fear of being escorted off campus. I saw it in my classroom, too. Put down the phones and look at the colors you are missing.

A breeze hits me. I look up and the water is about 24 feet away from me, greeting me like an old friend. I settle on a bench and breathe through my nose. My God. It’s still here. I’m here. It’s different. The waves are ornery today. Alive with no end in sight. The witness to when I made some of the biggest decisions of my life. How else do you think I became a teacher and an actor? I sat right here trusting the water would wash the answers over me and baptize me in safety. I loved that old life of mine. But now it’s time for something unknown that I don’t need to figure out today. I sit on my bench and smile as I remember: Something blue is that curtain between reality and magic, earth and the heavens, here and eternity. 

I feel safe and I smile.

The shore of Lake Michigan on campus at Loyola University Chicago. Jonathan stands with a cane in front of it against a blue sky. The water is wavy and bluish-green.