Second TM Anniversary

Today is my second TM anniversary…0n 9/18/23 I woke up paralyzed from the shoulders down…and that still doesn’t seem real!
In the first 13 months after my 38 days in the hospital, I posted 15 items to my blog totaling 16,666 words and taking 88 minutes to read.
For the 9 months since that last post {“Hanging in”}, I have been silent…but not for lack of starting documents. There have been several start-and-stops.

First there was the several hundred words about a conversation I had with a friend I’ve known pretty much my entire life. I’m not sure which one of us said the word first, but it’s definitely a word that I’d been using to describe myself in my thoughts, but hadn’t spoken outloud: The piece was titled “Invalid.”
He and I agreed that we’re both invalids: “A person who is very sick or injured and needs frequent care is an invalid. Someone who is incapacitated by a chronic illness or injury.”
My good friend has to use a Walker at all times because of the incapacitating neuropathy in his feet and legs. He never walks unaided.
Over the past several months, I seldom walk unaided and have become more reliant on a Walker myself. I describe it as my legs being angry. In my head I know that they’ll hold me up, but walking becomes more a matter of faith every day…and every step is painful. My legs are tight and numb. Walking is no longer a joy.

Next I started a piece about “Cost versus Benefit”, but it didn’t get very far either…
I’d been thinking about those 3 words a lot, but not because of the usual $$ analysis. Instead, I was reflecting on the “physical cost” vs the “perceived benefit.” The physical cost in my case being the amount of effort and pain incurred to get dressed, to get to/from the car, and finally to get undressed.
I had NEVER considered those “costs” before TM…because there really weren’t any. Now they are significant and the primary factor is physical pain. Mobility and poor balance make tight quarters challenging, steps are a deal breaker, and handicap accessible restrooms are a must.

In early February, I started a piece that started this way: “I really don’t care what you call it. Whatever it is, it sucks! Relapse? Another attack? Flare up?”
I’d seen it called those 3 and more in Facebook groups, but I wasn’t clear what people meant when they used those words.
A “relapse” in my mind would be waking up paralyzed again. “Another attack” to me would also be waking up paralyzed. Thankfully that isn’t what happened. So at the time I decided to call it a “flare up.”

When I went to the Johns Hopkins site (they’re the recognized authority on TM) and saw what they wrote about a TM flare up, it pretty much describes what was going on at the time.
“Pain: Increased pain in the back, neck, head, chest, or abdomen.”
“Abnormal sensations: Tingling, numbness, burning, or coldness in the legs, feet, or toes” (All of these had ratcheted up. The coldness was relatively new and at times my feet feel like blocks of ice…as if I’d walked barefoot through wet snow.)
“Weakness: Weakness or paralysis in the arms or legs” (Thankfully no paralysis, but significant weakness, especially in my legs. Add in lots more spasticity.)
The other thing that I was inclined to attribute my “flare up” to was winter weather.
Unfortunately, what I was viewing as a flare up in early February has become part of my new normal…and I have become more of a recluse since then. I’ve found myself passing on going to things that I went to the first few months after I came home from the hospital. Too much pain…and a cost-benefit weighed heavily to the former.

The next piece I started was about my suprapubic catheter. After failing another test that determined I was unable to pee on my own, I decided to have surgery the last day of March. I now have a hole in my stomach between my belly button and the top of my pubic bone, where a catheter is inserted directly into my bladder.
The surgery required general anesthetic and I did not recover quickly from that experience. It was definitely the right thing to do from a quality of life perspective. The foley was never remotely comfortable…and I don’t miss the “take way your breath experience” every 4 weeks. (The supra’s replacement is relatively pain-free experience.)

Five days after the surgery my dad passed away, <50 days shy of 99. I talked to him every day on the phone for the last several years. I recorded hundreds and hundreds of those conversations clandestinely on a “gizmo” (what Dad called a Dictaphone.) The original intent was to capture the stories that he told (he told good stories… and he had a lot of them). Toward the end, it was to make sure I had recorded our last conversation.
Like the other pieces, it fizzled…and it really had nothing to do about TM either.
-=-=
So what’s the point of this piece, other than to recognize this anniversary and provide an update of my TM journey. It’s not meant to whine (I hate whiners!) or to solicit sympathy (“oh, woe is me…”) or to prompt people to reach out in phone calls, or texts, or e-mails (although any and every one of those is always greatly appreciated).

I coulda posted a short 60 word piece instead: “It’s an Anniversary…2 years ago today I woke up paralyzed. Haven’t posted re my TM journey in 9 months, as it hasn’t been a good year healthwise for this Invalid. Had a “flare up” that became the new normal, with decreased mobility and increased pain. They tell me I still look and sound good. Hug your friends. Enjoy every sandwich.”
That too woulda left out what really matters: I realize how lucky I am compared to others who have been ambushed by transverse myelitis. Some were paralyzed for months and months after the initial onset and live their life in a wheelchair. Most of them were much younger than me when they were attacked. Many of them are just kids who will never be able to scramble over rocks at the Oregon coast or walk the beaches at The Gulf. Many of them are 30-something mothers with kids.
Many of them don’t have a care giver who loves them after their world was tossed I into turmoil too. (There are no words to describe how grateful I am for Shelly…)

When people ask how I’m doing, I continue to fall on my “I’m hanging in” refrain…realizing how lucky I am compared to others who have been ambushed by transverse myelitis…or something much worse.
I know that I’m a lucky old coot, taking it one day and a time…grateful for this and every day.