Hanging In…with Transverse Myelitis

“Hanging in” has become my standard reply when anyone asks “How are you doing?” whether it be face-to-face, on the phone, or in a message or text. It addresses not only how I’m doing physically and mentally, but also how I’m living my life day-to-day.

Often times the question includes “are you continuing to improve?” which makes it more difficult to answer. I can tell by the inflection in the person’s voice when they ask and genuinely care….hopeful that there will be “full recovery.”
(Full recovery only happens in about one-third of the cases….and very rarely in cases of acute Transverse Myelitis for older patients.)

It’s been almost 15 months since I woke up paralyzed in the neuro ward and couldn’t move a finger. It’s been 13-and-a-half months since I came home from the hospital in a wheelchair.
Compared to how I was doing that first day back in the apartment on 10/25/23, there has been quite a bit of improvement…but the reality is that my physical improvement has plateaued and “full recovery” is unrealistic.
When I share that reality with people, I can detect the disappointment in their eyes and/or their voice….and it somehow makes me feel like I’m letting them down.

So how does “hanging in” look physically?
Unless you’re inside our apartment, you will not see me walking without a device. Lately I’ve taken to a walking stick instead of a cane. I do get around the apartment unaided most of the time, but first thing in the morning I need a walker…my legs are very angry when I first wake up.
My gait is janky.
I don’t have bad “foot drop,” but “high stepping” ain’t gonna happen.

Here’s what you’ll see: a sorta tall, sorta shaggy, old hippie with a walking stick.
I’m the one who’s grateful to be able to slowly&clumsily get to his feet…to be able to put one step in the front of the other, no matter how slowly. Avoiding steps and slopes and curbs. Balance nightmares.

Nothing much has changed (and won’t) re showering.
I’m trying not to agonize and fret re bowel issues. (Thank the gods that I have always loved prunes and broccoli…)
I failed the latest urodynamics test, i.e. I can’t squeeze out a drop. So it’s once a month to the urologist for a replacement catheter. [take a deep breath…]

I used to brag about my high pain threshold (I’ve paid for boats for a few dentists…NONE of it cosmetic.).
No bragging now.
TM never gives you a break, and tosses in spasticity just for grins.
I guess the gabapentin is helping…and I know that the THC gummies and vape are.

That’s my physical “tale of woe.”
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So what does “hanging in” mean re how I’m living day-to-day?
Here’s the short answer: I’m a borderline recluse, spending most of most days on our couch. My “new normal” is driven by mobility, stamina, and pain issues.
Don’t often leave the building. {it’ll be even less for the next few months…TM detests cold}
I only put on pants and shoes when I have to. Pants take awhile…and tire me out, whether it’s putting them on or taking them off.
I watch more TV than before TM. With breakfast. At lunch. At 4 o’clock in the morning. {Snooker is my early morning “go to”}
My concert days are over. Navigating in crowds with my mobility, “plumbing,” and pain issues makes staying home an easy decision. (I watch LOTS of music on youtube too. I often get transported to a time and place watching many artists…and I don’t have to deal with crowds and parking.)
Once upon a time I was a fairly high energy individual. I was the first guy up and the last one to go to bed.
Not any more.
I have a rough night on the rare occasion, but I get the most sleep of my life.

That’s my day-to-day “tale of woe.”
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None of the above is new news.
I’ve written it before. I’ve shared it with people in conversations.

I often hear that I “sound good” and what a “good attitude” I have.
TM didn’t impact my voice or my story telling…nothing changed re how I sound. {I can still drone on and get lost in a weave. 😉 }

My attitude hasn’t changed either…I still have a relativistic perspective on life.
There are millions of people with physical and health and pain issues that dwarf mine. According to the World Population Review, approximately 9,000 people die each day in the United States…this translates to about 375 deaths per hour. Most are younger than me.
TM hits a couple of thousand people a year in the US. Many are kids. Many are wheelchair bound. Many don’t have a loving partner as their care giver.
Those facts make me a lucky old coot…

I’ve often used Jim Valvano’s words as my slogan: “Don’t give up. Don’t ever give up!”
I’ve often referred to the three things that he said that make up “a heck of a day”: laugh/think/cry.
But I don’t often refer to what he said as he wrapped up his speech that day in 1993: “Cancer can take away all my physical abilities. It cannot touch my mind. It cannot touch my heart. And it cannot touch my soul.”

I have so much to be grateful for as 2024 comes to a close. In so many ways, my “tale of woe” is a nothing-burger.
My mind, heart, and soul are strong,
I’ll continue to hang in, hang out, enjoy every sandwich….and count my blessings.
Be. Just Be.