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.

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.”
-=-=-=
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.”
-=-=-=

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.

…This one is the “Coming Home from the Hospital Anniversary.” (With much more to celebrate than the earlier anniversary…when Transverse myelitis ambushed me on 9/17/23….4 days after my seventy-fifth birthday.)

On October 25, 2023 I came home from the Meyer Orthopedic and Rehabilitation Hospital to Apt B-307 at The Abbey Apartments in Springfield, MO.
I was home, but I was in a wheelchair.

We had practiced getting into and out of the car a couple of times….and it was not easy. The “car” that they had in the rehab gym had scared the hell outta me…and I wasn’t very good at getting in or out of it either. (Honestly, I sucked…but now it’s a non-issue.)

My two favorite physical therapists came to my room that day to help me celebrate my discharge. (My sister Paula and her husband Don were there too.)
I’ll always be grateful to Courtney for the encouragement she provided while I was in Cox South’s neurological ward. Without her, Shelly and Paula pushing me, I most likely wouldn’t have improved enough to be accepted in rehab and might’ve found myself in a nursing home….where I might still be today.

The folks at Meyer were pretty swell too. Dina, Gena, Hanna, Maddie, Shanna, and Jason are etched in my memory. (Hope I spelled their names right. There are lots of faces etched in my memory. {names are hard when you’re 76})

Tranverse myelitis isn’t a killer.
It’s a debilitator…
…and a killer of life styles. Bigly.
Our (mine and Shelly’s) “new normal” barely resembles pre-TM days. (But we still have mostly good days…they’re just “different”…and live music is infrequent…)
Same physical apartment address.
Same BFFs.
Pretty much everything else changed.

It’s just happenstance, but this weekend our friends Tom&Gloria are visiting for a few days as they wrap up a road trip before heading home to Hotlanta.
It will be a perfect way to celebrate this Home From the Hospital Anniversary.
I’ve known Gloria since ‘89 and Tom since 1992 (I think). [We worked together in Sarasota.]
Lots of the stories of my life since then include one or both of them…or people that we know/knew in common.
While I was in the hospital and rehab I was greeted every morning by a “get well” or “feel good” Jibjab from Gloria. That got my day…and Shelly’s…off to a great start.
When I had a schedule at rehab (therapy over by 5…often earlier), we talked on the phone for 30+ minutes every day. [There is nothing remotely resembling a schedule when you’re “living on hospital time.”]
Quite a few folks visited me…thanks again!
So that’s the short shout-out to BFFs. (Visits and calls with friends continue to make living with TM tolerable…)
-=-=-=
I was able to walk short distances with a walker and a gait belt that late October ‘23 day, but the wheelchair borrowed from my sister was how I got to/from the car on the days I went to therapy for the next month.
It was how I got onto the balcony to enjoy sunny fall days.
I sat in it when we had dinner guests.
I sat it in it to brush my teeth, as I couldn’t stand for two minutes.
And then one day a few months later, after more PT, I stopped using it at all…and thanked Paula&Don for the loan.

On a couple of occasions, on “bad days” with even more pain than normal, I had anxiety attacks when I had thoughts of having a relapse resulting in paralysis. (Relapses are extremely rare for TM sufferers….thankfully!)

While I was at Cox South, Paula spelled Shelly a couple of nights so that she could sleep at home. Alone. (Just the way she likes it!)
Meyer didn’t allow sleep-overs. We slept apart those 23 days.
On that October 25th nite a year ago, after my discharge, we went to bed together for the first time in five-and-a-half weeks.
Me with a catheter bag, a wedge under my back, and a grab bar so I could sit up.

I’m not sure how many times we slept together, before we figured out “the answer.” I’m sure it was in single digits. (Probably 3 or 4 times…)
Neither of was getting any sleep.
I kept waking up and/or spasming …and waking her up.

“The answer”???
Shelly has the bedroom…sleeping alone.
I have the couch and an ottoman…sorta becomes my recliner.
I was always a side sleeper. Before TM, I couldn’t believe all the stories I’d heard of men sleeping in a recliner.
Now I sleep like a log in my makeshift la-z-boy.

We have always had separate bathrooms in the apartment, but now mine is very different than before.
There is the “comfort commode” with arms that sits astride the toilet. (TM wiped out my glutes. I need its arms to assist with sitting and standing after doing my business.)
There is a transfer bench shower chair that extends outside the tub. (I can’t step into the tub and need the extension the transfer bench provides so that I can sit and then lift my legs into and out of the tub.)

The wheelchair was replaced with a rollator. It hasn’t left The Abbey so far….it has never been loaded into the car.
It gets me around the building and out to the garden. The seat sometimes comes in handy.
The walker hasn’t left B-307 since the rollator came along (except when we sleep somewhere else)…but it gets used every day. Especially in the morning. I can’t imagine trying to stand up in the morning without the walker….my legs scream at me for awhile after I wake up.

Those are the changes inside the apartment.
I spent LOTS more time here than I did b4 TM…at times it borders on being reclusive…and I’m working on getting out more often…but the mobility and the pain make it challenging.
-=-=-=-=
Last week an old friend asked me how I could “always be so positive” as we wrapped up a long call.
I told her “It’s hard…and I’m not always positive…it’s easy to let transverse myelitis get you down…”
People have often said “you sound good” and I tell them that above the shoulders TM lost.
But my body sometimes overrules my head.
I often think I’ll get up to go for a lap of the third floor and then my hips, my legs, and my feet talk me out of it.
Walking itself is a combination of faith and muscle memory. Often the pain is almost too much, but I’m trying to push past it because I know that it’s important to not give up…to never give up.

Politically speaking “whataboutism” is typically just lameass malarkey.
But it is critical in helping me maintain a positive outlook.
…whatabout the 2 kids who were in rehab with me? (One will never get out a wheelchair.)
…whatabout my 2 friends who died from ALS?
…whatabout my friend who died from a massive heart attack at only 53?
…whatabout the 500,000 children who become blind every year—one every minute—and about half of whom die within one or two years of becoming blind.
…what about the 6 year old who was hit with TM and will never be able to skip, run, or dance?
…what about the 35 year old mother of 3 (all under the age of 10) who was hit with TM and who has far less mobility than me?
…“whatabout Me” is lameass malarkey!!!

I was 75 when I was ambushed by TM.
I have a partner who loves me and who is always there for me.
Yeah, I have mobility, pain, neuropathy, balance, bladder, and bowel issues.
But I really am a lucky old coot. who has/had a life that I love. I have enjoyed lots of sandwiches. I’ll enjoy every next one of them.
Don’t be stingy with your hugs…and tell the folks that you love how you feel!
Be. Just Be.

The last refreshing shower that I took was on Saturday, September 16, 2023…before we headed to see 6 bands and a night of music.
The shower the next day, before heading to the ER, was mostly in a panic as the tingling was making its way up my legs and my arms were feeling “weird”.
The next morning I woke up paralyzed, and didn’t have another shower for 19 days.
It was nothing but sponge baths in the neurological wing of Cox South until I had my first Occupational Therapy shower at the in-patient rehab hospital.
I’ve been taking showers on a chair ever since.

A shower was never a job before TM.
It was never a hard thing to do. It was almost always a pleasure.
Shelly and I never said “tomorrow is shower day.”
And the showering process never took long.
I could shed my clothes, be in-&-out of the shower (including shampooing—when my hair wasn’t loooong like it was when Transverse Mylitis ambushed me), dry off, and be dressed in <10 minutes.
I didn’t dawdle.
I still don’t.
But now we’re looking at 40 minutes or more start-to-finish.

Here’s how it goes:

1. Get the toiletry/catheter items off the shower chair. (N/A in a pre-TM world)
2. Put a towel down on the floor outside the shower. (Ditto)
3. Undress.
4. Plug the catheter tube so I don’t have to wrestle with a bag in the shower.
5. Waddle to the bathroom, sit on the chair, use my arms to lift my right leg into the tub, lift the left leg in w/o assistance. (My shower chair extends outside the tub itself as I can’t step into a tub…not even close.)
6. Shampoo and bathe while sitting.
   [In an “equipped” shower I might be able to “make it happen,” i.e. stand&shampoo&shower. But closing my eyes is NOT happening if I’m standing…not with my pathetic sense of balance.
7. Dry almost everything {except the boys and my butt} while sitting. (Can’t imagine trying to stand and dry off. TM blew up my nerves and my balance. Bigly.)
8. Waddle back to the bedroom and re-attach the leg bag. (I failed a Urodynamics test yesterday and can’t pee, hence the catheter. After what TM did to my hands, self-cathing is not an option.)
9. Get dressed. (Getting underwear and pants on is slow and clumsy. I was never the most flexible person, but in a TM world “flexibility” is a foreign concept.)
10. Quickly blow dry and then flop down on the couch…exhausted.

There you have it.
What used to be 10 refreshing minutes every day is now a tiring ordeal every 2 or 3 days. (A daily shower really isn’t necessary. https://www.health.harvard.edu/blog/showering-daily-is-it-necessary-2019062617193 )
But I am able to do it all by myself. (Shelly usually helps with #4 and #8….and #9 if I get frustrated. She does make sure that I have everything I need. She makes sure that I’ve dried my back well…and she cleans up if I’ve made a mess….that’s what #2 above is for. Have I told you how lucky I am to have Shelly for a partner?)

I hope I don’t sound like I’m whining. (I’m just trying to share my personal TM experience. It’s different for each of the 1400 who are diagnosed each year in the U.S.)
Compared to where I was a year ago, there is lots of improvement.
Compared to many who suffer from idiopathic acute transverse myelitis, I am one of the luckier ones.
Some never walk again…even with a walker.

And compared to the obits from across the state that I scan most days for conversation fodder with Dad, I am very lucky.
9 of the 20 that died recently were younger than me when they took their last breath. Often more than half are younger. (It’s rare that any are older than my Dad, who was 98 in late May…)
I’ll do my best to enjoy, appreciate, and be grateful for each and every shower.
And I’ll enjoy every sandwich.

I won’t go into the specifics that had us agreeing that I should stay in Springfield and pass on the 4-and-a-half-hour drive and miss the shindig. (Is nausea that won’t go away, no matter how many ginger chews, enough information??)

That brought us to the Big Question: “What happens with Steve while Shelly is in Kansas? Can he stay ‘home alone’??”
The only night that Shelly hasn’t stayed with me in the apartment so far was on July 15…but my sister and brother-in-law spent the nite.
This weekend, they’re on the other side of the state for her high school reunion.
I’ve been telling her for awhile that I am able to take care of myself inside the apartment. During the day, she is OK leaving me for several hours, but overnight was different.
So we tested it out a couple of nights.

There are 3 primary concerns.

1. Even though I have only fallen a couple of times since 10/25/23, I am most certainly a Fall Risk. I have always been a klutz. But now my balance is poor, and walking comes down to muscle memory and a matter of faith…I have to be conscious and careful of each and step I take.
2. Syncope. Shelly has had to call 911 twice in the past few months after I passed out on the couch and starting spasming and flailing about.
3. Catheter care; swapping from night bag to leg bag and vice verse; sanitary procedures. (I have another urodynamics test on Oct 15 to see if I can pee on my own…cross your fingers!!! That would be life changing….and a HUGE Milestone. I never had all that much manual dexterity, but TM hammered my hands. Self cathing several times a day is not an option.)

Not much we can “test” re the first two. But on the two days before she headed out, I was in charge of everything catheter related to make sure I could pull it off.
I proved to both of us that I am up to the task.
So we made the call: her trip was on and I’m on my own for three nights.

Things got a little complicated when in a freak accident she dropped a heavy wooden statue of liberty on her foot on Wednesday morning. The peak of “the lantern” punctured the top of her foot. X-ray revealed a hairline fracture. In a boot for a few weeks. Lots of icing and ibuprofen.
“Fortunately” it’s her left foot, so she can drive.

But she wasn’t able to make the planned grocery run, so she drove me to Aldi and I did my first solo shopping in over a year. (Before transverse myelitis I made almost all the grocery runs…)
And when she was packed up Friday morning, I once again became the mule…getting everything from the apartment into the car. (Her suitcase weighed a ton…well, it felt like it.)

When I made it upstairs after she drove away, my heart was pounding.
Getting the car loaded wore me out.
There was also some anxiety.
I really was Home Alone…for the next 100plus hours!!!

So far, so good.
No falls. No passing out. No issues with the catheter. (But until I see pee in the tube after changing the bag, I’m a bit anxious…)
Shelly and I do a couple or 3 video calls on Messenger daily.
Music and streaming a couple of things has given me some Jimmy V moments…“home alone” I’ve laughed, thought, and cried.
A couple of friends from long ago and far away have kept me company on the phone every day. They have been encouraging and congratulatory of the “Home Alone Milestone.”

I’m glad that Shelly left me alone for a few days…more for her than for me.
She needed some alone time. She needed time with Amber and Cecily. She needed to know that as much as I need her, I’m able to make it on my own…sorta…for a few days.
As traumatic as it was for me to wake up on 9/18/23 paralyzed, it was traumatic for her too. (I can’t imagine how I would have reacted that morning…)
She’s been there for me every moment….of every day.
Shelly has had more faith in me than I’ve had in myself.
We have another milestone to celebrate…together.
I really am a lucky old coot.

It started on Sunday 9/17/23 with a tingling in my feet, that moved up my legs a bit that took us to the ER.
The next morning I woke up paralyzed from the shoulders down.
On Saturday the 16th we had seen the Ozark Mountain Daredevils for the first time…and I have literally seen hundreds of shows since moving back to Missouri in mid-2011.
5 other bands played that night. Several of the players are more than just Facebook friends.
And 5 days before that hellish morning I’d started another trip around the sun.
I’m 76 now.

It was probably Sept 26th or so before I could make myself remember 2 words. Those Two awful, life-changing words.
I’m still trying to accept the five syllables.
S/B easy enough.
I’ve been known to win a game or two of Trivia Pursuit or Jeopardy.
Memory wasn’t my problem. (Although it becomes more of one every day…)

Getting my body to do something/anything was The Problem.
That was all I was focused on.
It was all I could do just to get my right arm to lift off the bed. That took days.
Now I struggle to stand and to make my legs support me, as I waddle around, whether aided or not.

Those 2 words are Always there. They’ll never go away.
Transverse myelitis.
-=-=-=
For some dumb reason I thought that maybe looking back at my journal for the few weeks before I was ambushed by TM would help.
All pretty mundane, normal day-to-day stuff. Trip to KC for music at Knuckleheads; unplanned trip across the state to get Dad and bring him to my sister’s; show at The Gillioz; 12K steps a day; and lots of garden activity. Just the normal stuff.

Then I took a peak at the Caring Bridge site that Shelly started on 9/22/23 to inform our friends about what was going on with me. The memories are painful…and the paralysis still doesn’t seem real.
The posts were hard to read….so I only skimmed them
But the comments weren’t…and I re-read them all.
{I love my friends. This thing that happened to me (and changed Shelly’s life too), makes it easy to find out who really cares about you.}
-=-=-=
I decided that looking back wasn’t getting me anywhere.
So here’s what’s changed.

My large concert and music festival days are behind me. I really am fine with that. Somebody else can be the oldest person in the crowd.
But that won’t keep me away from house concerts.

My road trip days are changed. My legs just can’t be bottled up in a car for very long. There have been three-night get-aways to AirBnB’s within a couple of hours of home. Soon we’ll venture the farthest from home since TM, heading to the Wichita area for the 40th bday celebration of Shelly’s firstborn.

We’ve had more dinner guests in the first 9 months of 2024 than we had in the previous 10 years since we began cohabitating.
That has been a joy.
But I have to tell them 2 things soon after they arrive: (1) I may have to get up and hurry to the toilet…and I have no idea how long I might be; (2) I have no control over the sounds of flatulence.
When I told this to my friends from Hotlanta who came to visit, it wasn’t two minutes until I loudly passed gas.
My BFF immediately said “somebody stepped on am duck!” and the four of us laughed and laughed. (Shelly and I still laugh about that…and crickets and spiders and frogs and…)

I never was the most flexible person, but TM has really stiffened my body. When I got back in the apt after 38 days away, I could not touch my ankles. Now I can pull my compression socks on and off. It takes awhile.
So does putting on a pair of underwear. That can take a looong time. But I can do it. (Getting them off can be a workout!)

I’ve always had a high pain threshold…and I have dentists in OR, FL, and MO who will attest to that.
But this TM pain is something else.
The burning, tingling nerve pain is always there.
There is the pain from sitting. (Now I know what my Dad means when he says his “butt bone” hurts…)
Standing unleashes pain in the hips and knees. Tightness like they are wrapped tighter and tighter the longer I stand.
Then there is the tightness and heaviness in the back when I stand for awhile.
Some days the worst pain is in my feet.

(I can NOT believe that when I wrote the P blurb in “Through the alphabet with TM” the only thing I mentioned was Physical Therapy. I wouldn’t be where I am now without the therapists…but how could I have not mentioned the Pain??)
[I didn’t mention Spasms in the S section either…and those are quite the treat, especially the first 5-10 minutes of every day.]
-=-=-=

OK, enough of that.
(especially that whining about pain…everyone has somethings…many much worse than me!)
What do I have to celebrate on this One Year Anniversary??

1. I am able to walk.
   It’s not pretty.
   It’s terribly slow.
   First thing in the morning I need a walker.
   Most of the time I walk unaided in the apartment.
   When we’re leaving the property I use a cane or a walking stick.
   When we head for the garden it’s with a Rollator, so I can sit.
   But there is no wheelchair anywhere to be found in the apartment.
   Thank you baby Jesus!!!
2. TM didn’t hammer me above the shoulders.
   When I talk to friends on the phone, they often say “You sound good.” (I’ve been hearing that since the first week in the hospital….of course I sound good. I have a great voice!)
   I can still read: magazines, books, on my tablet…but I do watch more TV than I did b4 TM.
   My mind works OK…but once in awhile it does take me down dark roads.
3. I never needed speech therapy.
   I can still spew disjointed stories and go on profanity-laced rants. (I’m trying to reduce the 4 letter words…but the rants and the branching-off-branches are here to stay. Maybe some repetition too…”I’m a broken record”. )
   {And it is a year divisible by 4…in which my prolonged rants can increase in volume.}

I have several friends who I talk to much more often on the phone than I did b4 TM. What a blessing and a joy that has been. They know who they are.

But the vast majority of the calls are initiated by me. (I no longer leave vmails. I’ve encountered too many “mailbox is full” messages leading me to think that people don’t check messages…)
Give me a call sometime. (417-379-6817) Send me a text and let’s put a date on our calendars.

4. I celebrate and am thankful for all the friends I’ve made over the years. The invite list for my wake would include folks from coast-to-coast.
I have a list called “I wanta hear you voice”…and I try to call every person on the list every year. I haven’t been in the same room with some of them for over 30 years. (And unless they come to SW Missouri it’s not likely we’ll be making eye contact ever again….)

5. I’m thankful that Shelly Drymon is my partner.

6, I’m grateful that Shelly Drymon is my Rock.

7. I’m happy that Shelly Drymon was there for me long before she drove me to the ER that fateful day.
After I came home it took awhile before she would leave me for more than the time it took to make a trip to Aldi and the library.
Now she’s a little more comfortable with being away for a few hours.
I often say that “I’m a lucky old coot” but I’ve never been luckier than when Shelly took a chance on me after I reached out to her on OK Cupid.
We both look at our FB memories daily, and as this anniversary approached some of those from September’s past and my birthdays from were kinda hard.
For me, they evoked lots of Jimmy V moments…laughs, thoughts, and tears.
-=-=-=-=
Ok, here’s the lede:
I LOVE every day of my life.
Some of them aren’t all that much fun.
Compared to the alternative, I’m gonna enjoy every bite of every sandwich and I’m gonna do everything I can to Be.
Just Be.
Love conquers all.

Vote early.
Vote often.
At every opportunity.

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.”

I swore I’d never talk about my bowels to anyone (let alone write about it), and then on 9/17/23 I got ambushed by Transverse Myelitis and Everything changed.
Thank you very much TM…

Things that changed, as it relates to defecating and flatulence:
1. Since I got out of diapers as a toddler, no one but me had ever wiped my butt.
2. I used to be very regular. A couple of trips to the crapper before 9am and I had dropped my daily dung. (Never a dump after noon unless I ate a bad burrito…)
3. These were slam-bam-thank-you-ma’am visits to the shitter, i.e. no reading material required. (Sit…shit…wipe…outta there.)
4. Shelly and I have been living together since 8/1/13. I had never passed gas in her presence (or anyone else’s for that matter) …ever. (Now I have no control and am surprised, as are whoever is in ear shot, when I “step on a duck.”)
5. I probably talk about my irregular bowels now more than my Dad does…and I definitely talk to more people about my bowel frustrations than he does.
-=-=-=-=
I spent 2 weeks in the hospital after I woke up paralyzed on 9/18/23. It was only the 3rd time in my 75 years that I spent the night in the hospital, and the first time that I wasn’t able to wipe my own ass…or to even know when I had shit myself (or farted).
The smell was the giveaway.
Many times it was a CNA who responded to my call. (They get the bulk of the shit duty, but oftentimes it was the RN that rolled me onto my side at the whiff of excrement or gas.)
More times than not it was merely a “smear.” It was almost never a fully formed doody. Often it was a false alarm. (Then there was the constipation and the enemas.)
At least 50 different people were summoned by my call light and my “I think I had an accident” plea while I was at Cox South. I’d usually make some lame attempt at a joke as they rolled me onto my side to check between my cheeks. (They’d often ask about the music coming from my Bose speaker. My room during the day was dubbed “party central.”)
-=-=-=
My favorite “wiping asses” story while I was in the hospital is the conversation I had with a 19 year old working transport. She was wheeling me from my room to get an MRI. I asked her how long she had been doing this job and she said: “A few months. I’m a CNA student and I get a discount since I’m a Cox employee.”
My quick reply: “Boy-o-boy, you are gonna wipe a lot of asses!!!”
Her: “I don’t think so.”
Me: stifling a laugh. She seemed nice.
I didn’t have the heart to bust her bubble. (I’m sure that would come in due time.)
The next day, when a couple of CNAs were cleaning me up, I told them the story. They thought it was just too funny…
-=-=-=-=
While I was in the rehab hospital I started the second round of potty training in my life. (I don’t remember the first. I’ll never forget this ongoing potty training experience….it’s a shitshow.)
After every meal they would get me onto the bedside commode. Many times it would be an Exercise-in-Futility. (Those now get abbreviated in my journal, e.g. “several EIFs this morning.”)
Having a successful shit and wiping my own ass was a joy for one and all. (It still is.) I was very happy to give them a turd or two to chart.
-=-=-=
So how are things these days, 8 months after I’m back in the apartment after 34 days in the hospital?
In a word: Frustrating.
More EIFs than Successes.
I now keep something to read in my bathroom, as I sit and wait&hope&strain in hopes that my sphincter will open and I will hear the welcome sound of a shit splash.

I tell people that most days I feel like “my ass is full”…that I could shit at any minute. Except I can’t. If I had a Benjamin for every time I didn’t think I was gonna make it in time, but instead it was just another EIF, I’d be wealthy.
There have been very few times that I didn’t make it to the bathroom in time.
It has been awhile since I had an accident. But the fear is there…that I will fill my boxer briefs while I’m in public….and that has turned me into a bit of a recluse.
Along with the lack of bowel control comes the inability to control the release of gas, i.e. I can’t do anything to control farts. I try to always give guests a warning of what might happen…and then it does. “Embarrassing” doesn’t do this justice.

If there was a choice between being able to drive again or having control of my bowels and my bladder, it would be a no brainer.
I’d never be behind the wheel again. (And I loved road trips…)
TM Sucks.

See Part 1 (A thru L) here

M = Mobility (and lack thereof)
The Cleveland Clinic says there are “muscle and movement issues caused by TM: loss of balance; difficulty walking (stumbling or dragging your feet); muscle spasms.”
All of those apply to me.
My Mobility will never be like it was before 9/18/23. It’s gotten better over the past nine months. But it still sucks. My mobility seems to have plateaued.
Even though I move around unaided in our apartment, I expect that I will always have a cane, walking stick, or rollator when I leave the apartment. [I’m not whining…I’m vertical and making noises.  Being immobile was a drag.]

{M-prime is MRI. TM can’t be diagnosed without a couple of MRIs: one with and one without contrast. Getting successful MRIs is challenging for someone as extremely claustrophobic as me. If I do need another MRI at some point we did learn the key: give me a shot of the strongest dose of Ativan possible…and make me promise not to press the panic button!}

[M-double prime is Myelin. When the spinal cord becomes inflamed this will damage myelin, the insulating material that covers your nerves. Loss of myelin has blocked my nerve impulses, i.e. stripped myelin has my nerve impulses screwed up. There is no medication to rebuild the myelin….and that SUCKS!!]

N = Neurological
TM is a neurological disease.
After the diagnosis and the “normal” treatments of IVIG, steroids, and plasma transfer, patients are pretty much on their own. (The Nurse Practitioner that I saw in the hospital was great.)
It becomes a matter of dealing with pain, PT & OT, and pushing oneself.
I’ve quickly learned that in the case of many neurological disorders, that after diagnosis and initial treatments the neurologist isn’t much help.
That is certainly my case.

O = Occupational Therapy
Occupational therapy, or OT for short, is a health profession that helps you or your family member develop the skills needed for day-to-day activities.
“Occupation” includes all the activities or tasks that a person performs each day. For example: getting dressed, taking a shower, cooking a meal, getting together with friends, and working a job.
I had OT twice a day for most of the 24 days I was at the inpatient rehab hospital.
Then I had it twice a week for 2 months as an outpatient.
I can’t do many of the things I used to do around the house.
But I’m not helpless like I was for 6 weeks, e.g. I dust, vacuum, get the clothes from the hamper to folded in the basket, and i can shit/shower/shave unaided. For that and more I thank the OT folks.

P = Physical Therapy
Physical therapy is a medical treatment used to restore functional movements, such as standing, walking, and moving different body parts.
It took weeks before I could stand and walk with a walker.
I left PT over a month ago as my Medicare dollars were being exhausted and I chose to save some for later in the year “just in case.”
I’m grateful to every OT and PT professional who has helped me so far.

Q = Quitting
It’s not an option.
“Don’t give up. Don’t ever give up!”
(See D in part 1)

R = Resolve
I love this description of “strong resolve”:
“To strengthen one’s resolve means to reestablish one’s determination to see something through to completion especially after having encountered adversity and having become discouraged because of it.”
Shelly and I have “strong resolve.”

S = Spinal cord
A lesion from out of nowhere “blew up” my spinal cord.
Nobody knows what caused it…i.e. “idiopathic.”
Unlike some TM patients, I’m not interested in the cause. (See T, below)
Unfortunately there is no cure.
But there is a future…& it’s a future of living our Best Life and living it with TM.

{S-prime is Showering. Before TM, taking a shower was a refreshing, invigorating and pretty quick experience. Now I use a shower chair. I can’t step into the tub. First I sit, and then I lift my legs in. It is still a bit refreshing, but it’s also work. And from start to finish takes much longer now…}

{S- double prime is Shelly Drymon, my partner in this life since 2013. I often say/write that I’m a lucky old coot. Boy, am I ever. She is Prime alright!!! Shelly is Double Prime.}

T = Transverse Myelitis
TM…The Monster…The Mother******
The Johns Hopkins Transverse Myelitis Center (JHTMC) was established in 1999 as the first center dedicated to the study and research of transverse myelitis.
From their site:
“Transverse myelitis is a neurological condition. It happens when the spinal cord becomes inflamed. This inflammation can damage myelin, the insulating material that covers your nerves. Loss of myelin often leads to spinal cord scarring that blocks nerve impulses and results in physical problems.
Transverse myelitis is a relatively rare disease. It occurs most often in children ages 10 to 19 and in adults ages 30 to 39. But it can happen at any age, and to any gender or race.
In some cases, the exact cause of transverse myelitis is unknown. In other cases, the inflammation that leads to transverse myelitis can result as a side effect of a number of other health problems, such as:
Lyme disease; Syphilis; Measles; Viral infections; Bacterial infections; Fungal infections; Parasites; Immune system disorders; Autoimmune disorders, such as lupus;
After a vaccine (very rare)”

{T-prime = THC. I was a pothead “back in the day.” I rediscovered weed when I moved back to MO in 2011.
I hadn’t touched it for months after TM ambushed me. But I decided to give it a try to help with my pains.
It has helped with the pains…and more. It seems to help me sleep. And it has helped with my mindset…which is a bit of a challenge when living with TM.}

People who I’ve known for awhile are surprised that I “sound good…normal…” when we talk on the phone.
They’ve been saying that since the first few days after I woke up paralyzed.  I think the gabapentin has dulled me some.  I’m not quite as quick as i was…and my memory isn’t quite as good.  Add in that I’ll be 76 in <3 months.  But I’m still pretty good above the shoulders.

Transverse Myelitis.  It was several days after the diagnosis before I could remember those 2 words. I kept blotting them out. “What was it again? Write it down for me.”
Now those 5 syllables are burned into my being.
Fuck TM.

TO BE Continued….

B = Bowels and Bladder
TM is characterized by “dysfunctional urethral and anal sphincter activities.”
I have had a catheter in place since the morning of 9/18/23. At this point, I am totally unable to pee on my own. (I’ve taken uncomfortable tests to confirm.)
The bowel challenges are gonna get their own blog piece. (There will be smears, potty training, charting it, and EIFs {Exercises in futility}, and more…)

C = Calls from friends
The only thing that makes me feel better than phone calls to friends are calls from friends and Visits by friends.
Unfortunately, the vast majority of incoming calls I receive are spam. (I’ve started answering some of them. There are stories there…)
Thank goodness for the contingent of friends who call to check on me…or more importantly just to chat without focusing on “how are you doing?”
[Then flip side are the “I’ll call soon” messages followed by the calls that never come. Seems like everyone has a phone, but seldom use it to make and return calls.  This sequence of events is something we have all experienced…but it seems to sting more these days…]

D = “Don’t Give up. Don’t Ever Give up.”
The late Jim Valvano, as he was dying of cancer, gave one of the most memorable speeches on March 4, 1993 at the ESPYs.
I watch that speech, or an abbreviated version, a few times a year. I took it to heart a long time ago, but those words mean more now than ever before.
Take a few moments and watch a snippet:

E = Energy (and lack thereof)
I always considered myself a high energy person.
First one up.
Last one to go to bed.
Power nap after lunch to get a boost.
12K average steps a day. 6 miles.
I did get pooped on especially active days. (A 4:20 sativa boost sometimes helped…)
Now I poop out easily. Much too easily…
I still wake up early, but usually after 7 or 8 hours of uninterrupted sleep. (Something that never happened b4 TM…and which many of my TM peers would love to experience. Insomnia afflicts many with transverse myelitis.)
I haven’t worn my stepcounter in almost 9 months. It would be depressing. And with my Tim-Conway-Like abbreviated and janky gait I hate to think how many steps it would take to walk a mile.

F = Feet
The first indication that something was wrong was the needles and pins sensation in my feet. The sensation has changed, but now I experience neurological pain in my feet and in many ways a lack of sensation. Hopefully someday I’ll be able to drive a car again…but I may not be able to use my feet to control the accelerator or brake.
I wear compression socks…and don’t have the flexibility and strength to put them on myself. (One of the many items on the long list of things that Shelly does for me daily…)
I know my feet are my contact point with the floor, but the sensation is minimal. Add in balance issues and walking is very different in a TM world.

G = Gabapentin
I take 800mg of it three times a day for nerve pain. I assume/believe it lessens the pain, which never goes away. And I won’t be stopping anytime soon just to see what the pain level might be w/o the drug.
{G-prime is for Gummies. THC gummies seem to lessen the pain even more…and they sure do enhance my afternoons and evenings. I laid off weed for months after getting out of the hospital, but it is enhancing my quality of life…so it’s here to stay.}
{G-double prime is for Gratitude. As Michael J. Fox wrote: “With Gratitude, optimism becomes sustainable.” Amen&Amen.}

H = Homebound
It’s easy to be homebound when ambulation is challenging, when you’re immune compromised, and when you have bowel and bladder challenges.
Shelly would like me to get out more than I do…but the B&B challenges are real PIAs.
Another compounding factor is that I had a mild case of covid in March and a nasty cold&fever a couple of weeks ago. My lagging energy level was even worse for the 7 to 10 days after whipping both of them.

I = Immune system
Johns Hopkins estimates that there are only 1400 cases of TM a year, so the research is limited. The jury is out on whether or not TM is an autoimmune disease.
But the fact that my immune system is significantly weakened is not a question….it’s a reality. {And it adds to my inclination to avoid enclosed public places and enjoy life in B307 and on our balcony.}

J = Just Be
I’ve been writing “Be. Just Be” on letters and cards since I was in high school. That perspective has never been more important than it is now.
Shelly’s and my life have changed significantly, but we do our best to look back at each day as having been a good one. Each evening we make sure that we appreciated the passing of time. One of us will ask the other: “was today a good day?”
Even on challenging days, the answer is always some degree of “Yes.

K = Keep on Keeping on
See “J” and “D” above.
We’ll continue to set goals…knowing that the target date might slip…or that the item might fall off the calendar.
We’ll enjoy every sandwich. (even though we only have bread in the house when we have homegrown tomatoes for BLTs…i.e. we seldom actually have a “sandwich.”)
Shelly keeps my spirits up…and pushes me to do more…and keeps me keeping on. {that leads to “L”}

L = Lucky
For the last decade+ I have closed many FB posts with “I am a lucky old coot.”
Maybe there was a better word than coot (codger…cynic…bastard??), but I considered myself lucky no matter what trials and hiccups a day or week might hit me/us with.
I still do consider myself lucky. Very lucky.
I’ll be 76 at my next birthday. No matter how fast you read, a few people in the US died b4 you got to this sentence. Some were younger than me…and younger than you.
That makes us lucky.
Some of the folks who have been in PT with me are <30 and wheelchair bound.
About 1/3rd of TM patients remain paralyzed and/or wheel chair bound.
That makes me Very Lucky.

TO BE Continued….