It’s another TM First Anniversary…

…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.