Thru the alphabet with Transverse Myelitis: Part 3 of 3

On Sept 18, 2023 I woke up in the Critical Decision Unit at Cox South hospital and was paralyzed from the shoulders down. I couldn’t move a finger.
My diagnosis is Idiopathic Acute Transverse Myelitis. (John Hopkins says there are 1,400 cases of TM annually in the US.)

See Part 1 (A thru L) HERE

See Part 2 (M thru T) HERE

U = UTI (urinary tract infection)
UTI’s are generally more common in women than in men. But long term catheter usage is a UTI risk for anyone.
I took the second ambulance ride of my life recently. It was after my second ever syncope event. (The other one has a longer story: Thanksgiving, “in-laws”, heavily herbalized, not enough H2O, 50 mile ambulance ride.)
This time I passed out on the couch and thrashed around a bit and Shelly did the right thing by calling 911. Our apartment rapidly filled up with EMTs, first responders, cops, and ambulance folks. (I think the count topped at 10 of us…)
I spent three hours in the ER after the 1.8 mile ride. When they figured it out, the nurse hooking me up said “you’ve got a raging, angry UTI.”
I left with a prescription for Ciprofloxacin after IVs of saline and antibiotic. After the cultures were back a few says later, my primary boosted the dose and strength of the Cipro.
Rose & Dr. Trinca have been changing my catheter every month since I came home from the hospital. We thought our twice a day catheter care at home was fine. We have now stepped up our hygiene game.
I hope to someday say adios to catheters and to be able to take a pee against a tree, on a fire, or on a grave again…to have taken my last ride in an ambulance…and to have had my last “raging, angry UTI.”

V = Vacuuming
Before I was hit by TM, I was retired and a “house husband.”
I did our laundry. I did the bulk of our grocery shopping. I cleaned the bathrooms and mopped the floors. Nightly I’d clean up the kitchen and wash the dishes by hand. The next morning I’d put the dishes away.
And I’d vacuum the apartment a couple of times a week. (There is wall-to-wall in the living/dining room and both bedrooms.)
I always liked to vacuum. No shit. (Friends will attest that when I’ve spent a night or two at their place that I always offered to vacuum.)
On April 12 I ran a vacuum for the first time in 7 months. Just doing the living room wore me out.
Now I vacuum a couple of times a week, and more often if we have guests.
It doesn’t sound like much, but being able to run the vac and not lose my balance seems like a big deal in a TM world.
{It still wears me out. Thank you TM for destroying my stamina!}

W = 5 W’s and an H
Who: Me…and according to Johns Hopkins, about fourteen-hundred other Americans every year.

What: Diagnosed with Transverse Myelitis (see T in Part 2 of 3)

When: Out of the blue in my case. On 9/17/23 at 2 pm the ball of my right foot felt weird. The next morning I woke up paralyzed from the shoulders down. (Onset is slow/gradual for others.)

Where: Springfield, MO. 15 nights in the Neuro ward at Cox South Hospital. 23 nights at the Meyer Orthopedic and Rehabilitation Hospital.

Why: No idea of the cause. The doctors don’t know either…that’s why my chart says “idiopathic.” My concern has always been to get better from and learn how to live with TM…not what caused it.

How: Some folks are intent in finding out what caused their case….“How did I get it?!”
I have never cared about that. (Once again, see T for list of causes…)
Shelly and I both think the cause might be a UTI that was missed and untreated for 7 to 10 days in late August of 2023.
And I most certainly do NOT believe that “things happen for a reason”…what malarkey.
(I have tested positive for Covid a couple of times and didn’t wonder about how I got that either…)
Shit happens…that’s all it ever does…and TM is some nasty shit.

[The Five Ws and an H is a checklist used in journalism to ensure that the first paragraph (the “lead”) contains all the essential points of a story. As far back as 1913 reporters were taught that the lead should answer these questions.]

X = Xanadu…an idyllic, exotic, or luxurious place
Living with TM is certainly NOT like living in Xanadu.
{I struggled and struggled for a relevant word starting with X…struck out}

Y = Yearn
Yearn for yesterday….the time before being ambushed by TM. But that ain’t happening.
Yearn for a better tomorrow…and for a better day after that.
That’s what everyone should hope for every day…each and every one of us.

Z = Zevon
Warren Zevon not only gave the world music, but he also gave many of us a mantra: “Enjoy Every Sandwich.”
I’ve loved him since he opened for Jackson Browne in 1977 in Portland, Orygun. He hadn’t released “Excitable Boy” yet. (That song has always been one of my favorites.)
It’s maddening that the Rock&Roll HOF has never inducted him…especially in light of all the lame-ass “rock” musicians who have been inducted since his death almost 21 years ago on Sept. 7, 2003.
On October 30, 2002 I was in a hotel room in Virginia Beach. Warren was Dave Letterman’s only guest.
Three words he said that night, while talking about the recently diagnosed cancer that would soon end his life, became words to live by for me and many others.
I’m more committed to “enjoy every sandwich” now more than ever.
And the 3 words that I have been writing at the close of cards and letters (and FB posts) mean more than ever now too: “Be. Just Be.”