This weekend is a big deal for both me and Shelly.
I’m “home alone” for three nights while she is in the Wichita area celebrating her first born’s 40th birthday.
Like several things that have been on my calendar since I came home on 10/25/23 after 34 nights in hospitals, it just wasn’t in the cards for me. (Goal flexibility is very important in a TM world for both the ambushed person and their care-giver.)

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.

I’ve been having trouble getting this started.
This is a hard “Anniversary” to think about.
It has been some kind of year.

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.