Thru the alphabet with Transverse Myelitis: Part 1 of 3

A = Ambushed
On 9/17/23 I woke up at home after an evening of live music from 6 bands and late night pancakes smothered in strawberries and whipped cream at IHOP. (one of the scarce 24 hour places in a post-covid world)
The next morning 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 1400 cases of TM annually in the US.)
Idiopathic = “Your guess is as good as mine”
I blame it on IHOP for TM ambushing me.

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….

3 thoughts on “Thru the alphabet with Transverse Myelitis: Part 1 of 3

  1. Steve, although I’ve not yet had the pleasure of meeting you, I just want you to know how very special you are to me! I am sooooooooooo happy that you and Shelly found each other. You’re both truly an inspiration. You exemplify the power of positivity. I love everything you wrote here, and thank you from the bottom of my heart for sharing your journey with others. You’re such a wonderful writer!

    Praying, praying, praying that one day soon, your health improves in ways that feel like a miracle. You and Shelly both deserve that!

  2. As I’m reading your alphabetical references that I Love, I can only relate to your experiences (Adventures, story telling) by sending my brain back in time to the day TM struck myself (14 years ago now) and the uncertainties that await myself as I lay in the hospital anxiously awaiting for a diagnosis as to why I cannot walk and numb from the mid chestline down. It took 3 day’s and to many pokes by needles to remember and CT scans to figure out what happened to my body. So when the Dr. came and told me what my diagnosis was. I had to have him repeat it again, then had him write it down for me so I would remember it correctly. Trans- verse Mye- litis. I t sounded awful and it still is!!! Thankfully walking with a cane and waking up breathing everyday. My main goal for every day is to get one (1) thing accomplished and if I do two or three things, I’m ahead of the game. Looking forward to the rest of your alphabetical references.

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