At the end of 2023 I wrote on Caring Bridge: “I may post again when there is a major milestone, e.g. walking unaided…But that might be posted to my blog instead…” (unless I have a relapse, the Caring Bridge site will sit as is..so Blog it is)
I began walking short distances unaided a couple of months ago….twice a week and with a Physical Therapist beside me, holding onto the gait belt wrapped around my body.
Shelly and I started practicing here in the apartment a week or so ago. Recently we jettisoned the gait belt while inside the apartment and it progressed to what you can see in the short attached video.
While I don’t wear a yellow bracelet, I am a fall risk. (especially when you consider my lifelong klutziness…) I’m pretty careful…maybe too much so.
Therapists have pointed out that I need to have more confidence in my abilities, but I know what a broken hip could mean to a clumsy septuagenarian.
My gait is getting better as I try to focus on “heel-toe” and taking longer steps…but “high stepping” is a long ways away. (in the video you can see that I’m barely clearing the carpet.) Even with my walker, tall curbs are challenging.
Steps without handrails?
Forget it!!
(Heck…forget steps in general.)
When I was in the hospital for 38 days I often said “I’ve always been determined, but not all that disciplined.” I need to be more disciplined and dedicated, but the constant nerve pain and lack of stamina increase the challenges. {Being a contrarian sometimes isn’t the smartest thing…}
I’m a high pain threshold guy (i’ve had dentists from coasts to coasts tell me that), but the transverse myelitis pain is never below a 2or3. The spasms boost it by at least a factor of 2or3. The tightness around my knees and hips compounds things. (Sometimes it feels like I have braces around my lower half)
But I’m at the point that grinning and bearing it seems to be the answer, along with lots of gabapentin and some self-medicating with thc gummies and/or a vape pen.
Stamina, or the lack thereof, is maddening. I used to do 12 thousand steps a day and not think twice. Sometimes double that. Now 12 hundred steps wears me out.
I used to carry a watermelon in a bag under one arm and a bag of groceries in the other up the steps to our third floor apartment. Now I avoid steps. (Soon we’ll see if I can lift a watermelon…)
I used to dig in the dirt with a pitchfork and a spade in 5 4×4 boxes. Now loosening the soil with a hand tool in one has me needing a break.
The good friend who wrote is right: “The endurance will come over time & with repetition.”
So was Jimmy V: “Don’t give up…Don’t ever give up!!”
I’ve watched the video a few times, and I gotta tell you that it doesn’t feel as good as it looks!! I don’t feel like Tim Conway, but it feels awkward and janky.
And it feels GREAT!!
I passed it along earlier to a handful of people. The replies had me thinking/laughing/crying (tears of joy). {Jimmy V moments make life worth living.}
So do friends….and their support.
“That’s awesome! You have come a long way!”
“This is beautiful, Steve, even if it’s a shame that it’s so exhausting.”
“Oh man, I am smiling so big! This is incredible, Steve!!! Hard work is paying off! ????????????????????????”
“This is such a great step! Or should I say steps! Thanks for sharing. You go!”
“I am so impressed. I can’t imagine how much perseverance and hard work is behind all this. You are the MAN! And, way to go, Shelly!!” {this one from a cancer survivor with long term issues…it opened the flood gates}
“Very good…..wear a path in that carpet!!!????”
Not gonna list them all. They know who they are…and that I love them.
I’m grateful and lucky.
Nobody is gonna see me walking unaided for awhile(other than Shelly and the folks at the therapy gym).
When we leave The Abbey, you’ll probably see me on a walker. Maybe a cane. And with best caregiver ever!!! (am I a lucky old coot or what?! OkCupid was very good to me!!)
Unaided walking will be inside the apartment or at PT…and there will be a gait belt when I’m at Cox.
Swing by here and you can see for yourself!!
I’d love to show off for you…give you a hug…and hear your voice.
Tempus fugit…or some such shit…
When I last posted (on 11/24/23) I expected to post a week or so later about my second week in the hospital with lots of goodies from “my gizmo” (the dictaphone that I wrote about in that post).
November 24 was almost 90 days ago?!?!
WTAF have I been doing since?
I did send out a Christmas e-mail with a jib jab, news about what happened to me on 9/17 and a couple of links to songs worth a listen or two.
And I dropped 450 words on Dec 30 on Caring Bridge wrapping up postings there for awhile re my Transverse Myelitis until there is a major milestone.
Both of those resulted in some enjoyable communication with friends near and far. E-mails & calls. Good times.
But mostly the elapsed time has been spent, in no particular order: doomscrolling; streaming; sleeping (since I came home I sleep more hours a night and naps are rare now??); watching hoops; listening to music (checked out a Lot of albums nominated in various Grammy categories. haven’t watched the show in decades…but there is some good new music…don’t listen to those stodgy and close-minded who say otherwise); texting and emailing; on the phone a bit (mostly calls I initiate. The majority of my in-coming calls read “Suspected spam.”); therapy (with “professionals” and with Shelly); and wrapping my head around life with TM (it’s a 24×7 exercise).
Since I’ve been so derelict about posting to my blog (it essentially died during covid…but that is gonna change) this piece will be long (and it will bounce around like my conversations do. Be prepared for tangents… {and lots of parentethicals})
If all you care-about/wanta-know is the answer to “how are you doing Steve?”: I’m upright and still pretty normal above the shoulders (normal??).
–Not getting out much. Because of TM, no vaccines for me so I’m keeping my distance. (Plus with my TM ravaged nerves, my body doesn’t like cold at all!)
–A walker will be taking me most places for awhile, but Shelly and I do some “cane walking” (and the occasional & short “no device” walk in the apartment).
–Driving is not anywhere close to near term. (Shelly is a great chauffeur. But she likes to be driven around…and that day is coming again {hoping for ‘24})
–PT twice a week for awhile at Cox Outpatient (and exercises at home daily).
–My stamina ain’t what it used to be. I was averaging 12K steps a day b4 9/17/23. Now a quarter mile walk with my therapist requires a break and a glass of water.
-=-=-=-=
If you read on, there are a few snippets from the gizmo and a more detailed ramble, but be warned that it might verge into “TMI” (I’ve shared/subjected-people-to even more specifics on the phone…if we haven’t talked, you’re missing out!).
One thing I now talk about in my Transverse Myelitis world (that I seldom talked about with anyone before {including with Shelly! Boy-o-boy has TM changed our daily existence…}) are Bodily Functions.
Regarding the plans I had for a piece from my second week in the hospital and another from my 3 plus weeks at Meyer for inpatient rehab, it turns out that a lot of the stuff I dictated while in both the hospital and the rehab hospital was day-to-day, with a focus on people who visited or called or gave me therapy….or the meals. (I ate LOTS of salmon and asparagus and chicken potpie at the rehab hospital!)
The gizmo captured a lot of the mundane.
After that late November post, I discovered a FB group for Transverse Myelitis. I like the perspective of most people in the group: no looking back, no speculating about the cause, no wallowing in the past.
Instead focus on today and the future…living each day.
1. Day. @. A. Time.
=-=-=
From the gizmo with a tie to where I am today:
Gizmo at 7:50 am on Monday, Sept 25: “I had two successes today. One was that I was able to pick up a little thing of grapes. Drop it on my plate and pick up each grape and successfully put it in my mouth.” My doc laughed when I told him: “Heck Steve..I drop stuff all the time.” (for the first few weeks, all my eating was with my left hand. TM hammered my right side more than my left…)
“And the other success was this afternoon in PT, with Courtney. She got me to sit up on the side of the bed. And then she asked me to stand up, and I stood up four times! Hard to believe. It was shaky and I needed lots of help. Standing up was huge.”
It’s important to note that I didn’t “stand up” on the floor…I stood up on a device called the “SA400 sit-to-stand patient lift.” I used my arms to pull myself up…my legs were “just there.” They were no help. Standing up really meant that I was vertical for the first time in a week.
And “got me to sit up” meant that she helped me drag both legs off the side of the bed and helped me pull up to a sitting position.
In response to my “standing” Shelly posted this on 9/25 on Caring Bridge: “We both cried it was so great to see.” (We cried until we laughed…)
She also posted a couple of short videos on 9/22…and I’m glad I don’t know how to include them here, especially the one of my right hand. It was scary how messed up I was 4 days in.
Standing has gotten easier over the past 5 months…but it’s still not easy.
One of the exercises I’m doing in PT in Feb 2024 is “sit and stand.” (That is as simple as it sounds. Simple, but NOT easy.)
Depending on the height of what I’m sitting on, I might even be able to stand without holding onto anything.
But I can’t stand up if I’m sitting on the couch without pushing off of the arm and the cushion.
And I can’t get off the toilet unless there are grab bars. (Have you ever noticed how low the standard toilet is?!?)
Standing up uses the glutes…and TM wiped mine out.
-=-=-=
Sept 28 from the gizmo: “It was an awful day yesterday. Perhaps the worst day of my life other than when my Mom died and later when John Crudele died.”
Here’s the summary of that awful experience (I went on for over 500 words talking into the gizmo): my catheter got pulled out of my bladder and into my enlarged prostate. Severe back pain and stomach pain for several hours. Confusion on who could replace the catheter. Had my first ever morphine. Helped briefly. Shift change. Catheter finally replaced. 2000 ml of urine immediately fills the bag.
I felt like I was gonna die for hours.
If my bladder had burst, I probably would have.
[The gizmo left out the part about me telling Shelly and my sister what I wanted to have happen when I died. (I’m not sure how scared they were, but I was scared plenty…)
Cremation. No funeral. A Celebration of Life at The Rock House. A headstone and a few ashes at the Weiss Cemetery outside Doe Run, MO. Some ashes sprinkled at the Oregon coast and at Gulf Shores, AL.]
Almost five months into TM, I still have a catheter and will for the foreseeable future.
It’s right there in the wikipedia description of Transverse Myelitis: “dysfunctional urethral and anal sphincter activities.” (the latter is gonna get it’s own blog post.)
I had a uroflowmetry procedure several weeks ago. At that time, my bladder and urethra were too weak for me to pee. Hopefully that will change…
But until then, I can drink mass quantities of H2O and not worry about how many times I’ll get up at night. I can eat mounds of asparagus and not care about how much my pee stinks.
-=-=-=-=
Sept 29: “Got to the gym in a wheelchair. But my blood pressure just bottomed out. I think the last reading was like 72/40.” PT got me back in bed.
Sept 30: “Today was the first day I took any steps. Walking the parallel bars. It’s going to be a slow process.” The 10 or “steps” included a therapist in front of me clutching my gait belt and a tech following close behind with a wheelchair. (This was 13 days after we headed for the ER.)
If I hadn’t taken those few steps I wouldn’t have been moved to an in-patient rehab hospital 2 days later. It would have been to a “skilled nursing facility”…i.e. a nursing home.
On October 2, 2023 I was transported to the Meyer Orthopdeic and Rehab Hospital. The typical stay is 7 to 14 days. I was discharged 24 days later. For the first 10 days I still needed the SA400 to get from the bed to the wheelchair. It was a week before I could sit up on the side of the bed without assistance. The only time I walked using a walker was in the gym with a therapist.
I improved a lot at Meyer. I had 2 hours of OT and 2 of PT 5 days a week, and a couple of hours total on the weekends. 3 of the sessions with OT involved taking a shower and getting dressed.
Those showers were ordeals and tiring. (With time they’ve gotten easier…but I will be using a shower chair for the foreseeable future. It did get easier after the haircut that first weekend at Meyer that resulted in a 14.5 inch ponytail to donate to Wigs for Kids.)
While there was significant improvement, I was still using the wheelchair when I returned to the apartment on Oct. 25.
Now it sits in a corner, unless I sit in it on the balcony or at the dinner table. (Those chairs are too low for me to be able to stand without help…)
After Meyer I received OT and PT at Ozarks Neuro Rehab. I “graduated” from there when I was discharged from OT, which focuses on the tasks of daily living. They also work on upper body strength and manual dexterity.
RE the latter, at every exercise I let the therapist know that I never had all that much manual dexterity to begin with. I did have some upper body strength b4…but not nearly as much now. (I haven’t encountered a jar that I haven’t been able to open. Yet…)
I’m currently getting PT twice a week at Cox Outpatient. The focus is on mobility and balance. At therapy I walk with no device and a therapist hanging onto my gait belt….we’re working on improving my step length.
I’m not “tim conway” but my stride is short.
In and out of the apartment I get around using a walker. As I said before, Shelly and I practice walking with a cane or “unaided”, but I’m not ready to go it alone…or outside B-307.
-=-=-=
A few things that I didn’t list above:
–I have constant nerve pain in both legs and feet. It’s a shooting, stabbing and burning sensation. When I wake up there are always spasms. The first thing they ask in therapy is if you have pain. I’m always a 2. (If they’d ask when I’m having a spasm it would be a 7 or 8. {Dentists have always told me that I have a pain threshold…just sayin’})
–There is this “banding” thing with TM. It’s a bandlike tightness, often around the belly. I also have it around my knees. All the time around both knees. (only on occasion around the belly…) It feels like I have tight knee braces on All The Time. It’s pretty maddening!
–I’ve often posted my “Monday routine” on FB (usually with a link to a song on Youtube before and after the day’s tasks).
I was a house husband. I put out the garbage. I put away dishes. Did laundry. Stripped and made the bed. Made a run to the library&Aldi. Swept the kitchen. (Some Mondays I dusted and mopped the kitchen and bathrooms.) Vacuumed. Got in 10-12K steps. Most likely I celebrated 4:20.
I “graduated” Occupational Therapy on 1/5/24…but I can’t do ANY of those things today. I do fold the laundry. I can use a broom and dustpan. (And after a several month layoff I did come across some aged gummies and a working vape pen. )
–I don’t read as much as I did before 9/18. I’m thinking it’s one of the many side effects of the 800mg 3x a day of gabapentin. (Some of my magazines barely get touched before they’re headed to a downstairs table to share.) My tablet keeps me company awhile every day with NYT and WaPo. (I read lots of headlines, but seldom launch a story that’s more than 6 or 8 minute read.)
Gabepentin is for the nerve pain. But there is NOTHING to rebuild nerves. They’ll heal (if they ever do) on their own sweet time.
–I’ve made lots of specific goals/targets/wishes since late September ‘23. Surprisingly most of them are music related. LOL.
I’ve bought tickets to shows that I had to give away.
I hope it’s not the last time. (I like treating folks to live music…)
I’ll/We’ll keep making plans and buying tickets. Shelly has encouraged me to stop buying tickets in the near term, but she knows I’ll never really stop. I’ll just be very selective about the venue and the artist.
I hope to take in some house concerts and local shows…but I’m leary of small&packed rooms.
I don’t expect to be going anytime soon/ever to any festivals that require much walking or venues with lots of stairs.
My quantity of live music will never be the same as it has been the last dozen years since moving back to Missouri and discovering The Rock House….and having “my musical epiphany.”
But it will still Be.
Not a whole lotta people that I know have seen as much live music as I have.
I know that I am a lucky…and very Grateful… old coot.
–I’m not sure how to reply to people saying to me that Shelly & I are inspirational..or whatever it is they say.
I think we’re just a couple of introverts being very open about what is going on.
When we “were courting” we shared our picnics on FB. TM is a very different kind of picnic that we’re being open about.
But Believe me, I get choked up and sincerely appreciate every time friends (and FB friends who I may have never had a conversation with) say such nice things, make compliments, tell me they’re praying.
I don’t do the third component (crying) of a “Jimmy V Day” each and every day, but there is lots of laughing and thinking every day at our place.
Kind words and encouragement always leads to tears,
–A couple of my friends surprised me when they said something like this: “so you were really sincere with that every sandwich line?”
What the Fuck???
Of course I was sincere.
Jeez.
Enjoy the Reuben or Veggieburger….or waterfall or sunset. Eat it all up. Cherish it.
I didn’t name this blog “Things Happen” because I buy into that lame-ass “everything happens for a reason” thinking.
Get Real.
Things happen until they Don’t.
U Gotta Enjoy Every Day. (There will some Hellish days. Yeah there will be. But compared to the alternative, I’ll take alive&breathing. Thank U Very Much.)
I’m often a broken record. Sometimes it’s new and different.
But somethings never change:
Enjoy Every Sandwich.
Don’t be stingy with your hugs.
Tell them that you love them. Now.
Be. Just Be.
It’s a JibJab, a Christmas letter from a very different year, and a couple of songs that I love. Many of you already know why this was a very “different†year.
Either way…Read On.
Not all that much live music in 2023 compared to previous years, but I did see lots of my favorites:
Springsteen in KC and Tulsa; Dawes in STL and Lawrence; Tedeschi Trucks in Little Rock and STL;
The Mavericks twice at Knuckleheads in KC; Jackson Browne here in Spfd; John Fullbright in Joplin and Okeimah, OK.; National Park Radio in town and at the Rock House. I’m grateful that I got to see so many of my favorites.
{Noticeably missing is my current favorite: Jason Isbell…we’ll see him here in Jan}
There were another dozen shows, and some good times at The Rock House in Reeds Spring, but my concert going got cut short…Read On.
There were no road trips, other than the ones to the shows listed above and a few 200 mile trips over to visit Dad. At 97, he’s still hanging in there. For that I’m grateful.
Well, technically there was the 733 mile road trip home from the beach, after 18 nights, on January 3. {We drove straight thru. Never again. What were we thinking?!?!}
After 7 years of heading to Gulf Shores at the end of December, that road trip won’t happen in 2023…Read On.
I’m grateful every year for my garden.
My spring garden exceeded expectations, thanks to the first cabbages I’d planted since Corvallis in 1981! Spring broccoli was excellent too. Lots of salads of mesclun.
Summer garden produced lots of tomatoes. Bumper crop of cherokee purple and brandywine. Still lots in the freezer for winter soups…
I hear that my fall garden did pretty well. Shelly gave away lots of lettuce, mesclun, kale, and broccoli…and that’s where “Read On†comes into play.
Four days after my 75th birthday my world changed. Many of you know already know all the details included in the 750 word post at my blog: http://slw913.com/transverse-myletis/it-still-doesnt-seem-real/
On 9/18/23 I woke up in the hospital, paralyzed from the shoulders down. Several days later I was diagnosed with Transverse Myelitis… a pair of words I’d never heard b4, and had trouble remembering for awhile. {But 2 words I’ll never forget…} Check out the wikipedia page.
Three months later I’m making slow progress. I get around with a walker for now. Below the waist I have issues and constant nerve pain. It’s gonna take awhile.
I can’t thank my friends enough for all the support and encouraging words. Keep ‘em coming…Shelly & I need ‘em!!
For my friends and support network I’m very grateful.
I’m proof that good things happen on dating sites (and that I am a lucky old coot).
Shelly and I met on OkCupid in 2012. We “celebrated†our 11th “Meetaversary†at the Meyer Orthopedic and Rehab Hospital here in Springfield, MO.
We’ve been saying that we make a Good Team since early in our relationship. I can’t imagine where I would be without her. For Shelly Drymon I can’t find the words to express my gratitude. Together we are gonna whip T.M. however long it takes.
Now for the tunes:
1. My favorite Christmas song: I’ve got all the gifts I need…friends, music, and Shelly. Never cared about “stuff†b4 and care even less about it now. Friends, music, a partner who I love and who loves me, and experiences are all that matters. https://www.youtube.com/watch?v=lTL0odryDN0
2. I’m not planning on going away anytime soon, but one of my favorite artists was when he wrote this. It’s the last song on Warren Zevon’s last album.
Hold your friends close. Don’t wait until tomorrow to make the call, send the text, or write the e-mail. Tomorrow never comes. https://www.youtube.com/watch?v=CHrtZbMx8GA
I hope our paths cross or that I hear your voice in 2024.
Merry Christmas. Happy Holidays. Take care. Keep in touch. Enjoy every sandwich.
Be. Just Be.
Steve
417-379-6817…call or text me sometime!! {we’d both enjoy it…}
This piece, and any that follow, will be getting help with excerpts from “my gizmo.” The “gizmo” is a Sony Dictaphone. {I bought one for my Dad several years ago in the hopes that he would tell lots of his stories into it, so that I would have them for posterity. He dubbed it a “gizmo” and it was only used when I was at his place. I got one for me and use it to clandestinely record our phone calls. Shhh…he doesn’t know.}
Since I wasn’t able to use a laptop between 9/18 and 10/26, I started keeping “notes” using the gizmo while I was at the hospital and inpatient rehab. {I have been keeping a journal on my laptop since 10/26/12. Wish I’d started loooong b4 that!}
On the morning of 9/18, as soon as a room was ready, they transported me to Room 849 of the Jared Neuroscience wing of Cox South. I wasn’t able to use the gizmo until the 23rd.
“They seem to know what they’re doing. But they’re having trouble diagnosing exactly what’s wrong with me? They put me on something called an IVIG* thing on Monday and on Tuesday I was getting a little use of my left hand, still nothing with my right on Tuesday and I’m probably getting some of this messed up because I’ve been on so many drugs, but not the kind of drugs I like.”
At first they thought it might be GBS. “There’s the Guillan-barre syndrome. And this other one. I have a total mind block on what it probably is…I can’t remember the name!” {I’m pretty sure I’ll never ever forget those two words now: Transverse Myelitis!}
My extreme claustrophobia didn’t help with the diagnostic process. “On Tuesday they sent me down to do an MRI and as soon as I got into the tube I pressed the button. I was freaking out. An hour later, they sent me back down. I stayed in there for like 40 minutes. I don’t think I squeezed the button, but maybe I did and it turns out that they would have liked two passes, one without contrast and one with. I didn’t do the with contrast, and came back upstairs.”
My neurological NP and hospitalist were great. They told me how important the MRI with contrast was. “They loaded me up with Benadryl and a shot of Ativan and I did it for the duration. They discovered I have a lesion on my spine, which is complicating the diagnosis. Because it might be an indication of Ms. Isn’t that lovely?” {No MS…but it was also an indicator for Transverse Myelitis!}
“The next procedure that was done was the Spinal Tap, which wasn’t painful at all in my drugged up state. They roll me up in a ball as tight as they can. Which is really hard based on the lack of mobility, especially on my right side. They sent some some of the spinal fluid to the Mayo Clinic to have it diagnosed. No MS”
I didn’t mention it on the gizmo, but about that time they started me on IV steroids for several days.
“The next treatment that began was plasma transfer or PLEX, and that started on Friday. That involved putting what they call a catheter down the carotid artery in the right side of my neck. It’s got 2 little ports and what happens is on one side they’re flushing plasma out of my body. On the other side, they’re putting new plasma into my body, and so they get about 20% of the plasma each of the 5 treatments. When they’re done you’ve had ‘an oil change’ of your plasma. Each procedure takes three hours. It addresses both the Guillan-berre and this other one, which I guess I’ll keep calling ‘the other one’ until I get can remember it.”
So those are the treatments: IVIG, spinal tap, IV steroids, IV antibiotics, Plasma transfer.
But how was I doing? The gizmo was no help for that first week. Fortunately Shelly set up a Caring Bridge site on Friday the 22nd and wrote about it there: “He can move his left hand now and has a very strong grip! He is feeding himself, taking a drink of water, and brushing his teeth with his left hand. He can pick up his left leg and wiggle his left toes. He can move his right hand, but not his right leg. With help, he was able to sit up on the side of the bed twice.”
For the first few days either Shelly or my sister Paula fed me and brushed my teeth. Four days in I was able to pick up a fork and a tooth brush in my left hand. Shelly or Paula slept every night on a couch while I was in room 849.
She also wrote: “He gives the nurses, the aids, and the docs his personal recommendations for music and tells all kinds of stories.”
All the rooms on the 8th floor were large and private. Mine had a great view. I saw lots of sunrises (I wasn’t sleeping well) and moon rises.
I had Shelly bring my laptop (with it’s thousands of songs) and Bose speaker. She had to operate the laptop to launch the playlists. (I didn’t touch a keyboard for almost 6 weeks.)
There were “concerts from” playlists from several years of bands I had seen that particular year. Several were 6 or 8 hours long from years when I saw 50+ shows and went to a few festivals. The staff started calling 849 “the party room.”
They did that even when they were responding to me pressing the call light when we thought I might have had “an accident.” Losing feeling from the mid-torso down also meant that I had no control over my bowels. (Smell was the deciding factor re pressing the call button. I had a catheter, so urinary incontinence wasn’t an issue.)
As if that isn’t TMI there is this: I’ve often told people that if I had 1000 bucks for every individual who wiped my ass in Room 849 I’d be able to buy a new Lexus.
I had some visitors. (I’m sure tahe some of them were freaked out!) I made and received a few calls toward the end of the week. Shelly read me the comments on Caring Bridge or comments to her FB posts.
I had lots of Jimmy V moments: I laughed; I thought; I cried.
I really am a lucky old coots with old friends and many that I’ve made since moving to MO in 2011.
And so ends week 1 of “the other one.” In week 2 the words “Transverse Myelitis” became indelibly etched into my memory.
*IVIG= “Intravenous immunoglobulin (IVIG) is a pooled antibody, and a biological agent used to manage various immunodeficiency states and a plethora of other conditions, including autoimmune, infectious, and inflammatory states. The ultimate goal of this therapy is to normalize a compromised immune system.”
Eight weeks ago, on September 18, I woke up in the Critical Decision Unit at Cox South Hospital in Springfield, MO.
I was paralyzed from the shoulders down.
I could move NOTHING.
As I tell the story, as I see my body that morning in my mind’s eye, and as I type this, it seems like a dream. A very, very Bad One.
But it was/is Very Real.
The day before had been a normal Sunday. We’d been up late the night before. Six bands kicking of Drury University’s 150 year Anniversary. Our first time seeing the Ozark Mountain Daredevils. Late night eats at IHOP. (No place in town to get midnight pie, so I had to settle for pancakes with strawberries and whipped cream.)
The 17th started with a quick stop for Shelly at the library while I washed the car with a wand across the street. Then grocery shopping.
At 2pm or so I grabbed a snack and settled in to watch the KC Chiefs with the announcers muted and Jason Isbell playing on the stereo.
As I was about to sit down it seemed like I had stepped on something. I rubbed the carpet. Nothing. I had vacuumed the day b4.
The ball of my right foot felt funny.
Half an hour later it was the same thing with my left foot.
I took a short nap after the game and didn’t stand up again until 5 when I put my shoes on to go for a short walk and to check on my garden.
My ankles and feet felt tingly. Pins and needles.
I cut my walk short.
As usual I called my 97 year old Dad at 5:30.
After the call I headed for the shower…and admired Shelly’s strawberry rhubarb pie.
(I never got a bite of it. It was 38 days until I was back in the apartment.)
In the shower the soap in my hand felt weird against my body. (I still can’t find the word for this sensation…which continues in my lower arms and from the waist down. “Weird” sums up this nerve pain…)
I knew something wasn’t right.
I cut my shower short and told Shelly that we needed to head for the ER.
My walking was getting shaky as we headed for the elevator.
{We almost always took the stairs in our 3 story building.}
Shelly got the car as I sat on a bench out front and waited for her to drive us the 1.4 miles to the hospital.
She walked me inside Cox South and quickly got me into a wheelchair.
Surprisingly the ER was almost empty.
The computer system was down.
It took 15 minutes to get a bracelet.
{You don’t got anywhere in a hospital without a bracelet.}
The delay didn’t matter in the long run..but it was frustrating.
Not too many minutes later I was being evaluated by a Nurse Practitioner.
She checked to see how far the “pins-and-needles sensation” (aka Weird) had advanced up my legs.
I squeezed her fingers. My hands were strong.
When she asked me to push her hands, I almost knocked her off her feet.
We both laughed.
That was the last thing I found funny for awhile.
They moved me to the Critical Decision Unit.
You feel like you’re in the hospital (you’re in a gown and you have an IV), but you’re not admitted yet.
They whisked me away for a CT scan…and after that things get murky until I woke up, so I’ll rely on what Shelly tells me.
But I sorta remember the 3am MRI. It should be no surprise that I had been in that godforsaken tube for only a minute b4 I pressed the panic button…and not just because of my intense claustrophobia. I knew that something was very wrong and I was scared.
After being told that I was being admitted Shelly made a quick trip to the apartment to grab a few things. She notified my sister and let her know what was going on.
When Shelly got back 30 minutes later I was thrashing about with muscle spasms in my arms and legs. (That was the last time they’d move for several hours.)
She went looking for someone for help.
I was hollering repeatedly I’m gonna lay here and die!!
They gave me some medication to put me to sleep.
I’ve already told you what happened when I woke up…this is the start of this adventure.
Part 2 in several days: My time at Jared Neuroscience.
It’s an interesting phenomenon: the older I get, the shorter the letter.
There was quite a bit of live music in ‘22…but not as much as I would’ve liked.
Saw some of my favorite artists multiple times. Saw some folks I’ve listened to for years, but had never seen before. Sweet.
There were road trips…but not as many as I would’ve liked. Most of them were music related, and the favorites were meeting up with friends who had also road-tripped to KC and Nashville.
Friends came from FL and GA once again in June for music at The Rock House. Awesome.
The other road trip favorites of ‘22 were the 200 miles over to visit Dad. I threw him a surprise birthday party at the DQ. It was special…as was everyone who attended.
At 96, he’s still hanging in there. He’s now the only one remaining from the Elvins class of ‘44.
I know how very lucky I am to still have him, as several friends lost their parents in 2022.
I lost several friends and acquaintances this year. Probably every one reading this did too. As Dad says: “the troops are thinning.”
Like most everyone I know, Shelly and came down with Covid. Fortunately our cases were mild.
I didn’t badger friends to donate to The Victim Center’s Wine Women & Shoes fundraiser in 2022.
I’m sure that made some people on the receiving end of this e-mail happy.
But I did try to make up for it by taking advantage of a QCD (Qualified Charitable Distribution) to that and several other worthy organizations.
If you’re an old person like me and required to take distributions from your IRA, you really should utilize QCDs. Reduce your taxes while doing good.
Lord willin’ and the creek don’t rise, on12/16 we head for Gulf Shores, AL. It’s our 7th annual late December trip to the beach, and once again friends will be meeting us there. This year they’ll be coming from: Cumming, GA; Mulvane and Pittsburg, KS; and Reeds Spring, MO. Looking forward to 17 days of hugs, sunrises, sunsets, walks on the beach, naps, and more.
Now for the tunes: two songs from the album that I listened to more than any other in ‘22…“Liars” by John Fullbright. These two help me do a couple of the Jimmy Valvano Three: one makes me think and the other makes me laugh. John Fullbright – Stars (Live @ 2018 Fayetteville Roots Festival)
I hope our paths cross or that I hear your voice in 2023.
Merry Christmas. Happy Holidays. Take care. Keep in touch. Enjoy every sandwich.
Be.
Steve (aka a Lucky Old Coot)
417-379-6817…call or text me sometime!!
In 3 days we head for Gulf Shores, AL. It’s our 6h late December trip to the beach, and once again friends will be meeting us there. Looking forward to 16 days of sunrises, sunsets, naps, and more.
2021 has been similar in many ways to last year: Masked up; Hunkered down.
Add in: vaccinated; boostered; some road trips and live music.
Once again the first weekend of June was a highlight of the year: Shady Acres Motel; Tom and Gloria; Steve and Claudia; 2 nights of music in the back yard at The Rock House…The Creek Rocks…The Lacewings. Plus The Shandies at Bear Creek.
That weekend would have been on the short list of highlights for ANY year.
For the second year in a row I was named King of Soul at the Wine Women & Shoes fundraiser. Thanks again to the 50 folks from 16 different states who helped me raise $6,238.08 for The Victim Center. It’ll be my last year hounding friends for $$…it was Shelly’s swan song at the V.C.
It was my first time taking advantage of QCDs (Qualified Charitable Distributions). There will lots of checks from my Fidelity account to 501(c)(3) organizations in the future.
Shelly has been taking some time off since then…but she is NOT retired. In 2022 she will be moving on to another venture.
We celebrated with our first long road trip of 2021. It began with seeing Dawes at the Ryman and visiting some dear friends in Nashville, then we were off to Hotlanta, Tampa, Siesta Key, and Panama City Beach. Great visits with a few friends and with both my kids and their partners.
There have been other music related road trips: to Pittsburg, KS twice; KC once; STL 3 times; and another weekend in Nashville for 2 shows by The Mavericks at The Ryman.
And then there was a weekend in CoMo for the Roots&Blues Festival.
In many ways 2021 bore a semblance of normalcy.
But we still mask up when we go out, and I shake my head at the anti-vaxxers and the apologists for what happened on January 6. Lunacy, willful ignorance and apathy are deadly pandemics.
Here’s a repeat from last year:
I hope to do a better job of living “The Jimmy Valvano Three” each and every day of 2022.
“To me there are three things everyone should do every day. Number one is laugh. Number two is think — spend some time time in thought. Number three, you should have your emotions move you to tears. If you laugh, think and cry, that’s a heck of a day.”
Indeed.
Oh, yeah….here’s the song. I certainly have all the gifts I need: friends, music, a partner who loves me, health, and more money than time: https://www.youtube.com/watch?v=opktLUqP2Ek
I hope our paths cross or that I hear your voice in 2022.
Merry Christmas. Happy Holidays. Take care. Keep in touch. Enjoy every sandwich.
This is my first blog post of 2020!! I drafted a number of items, but never finished them…it has been that kind of year.
-=-=-=
December 16, 2020
I’m writing this from Gulf Shores, AL. It’s our 5th late December trip…and only the second time I have been out of the state of Missouri during this shitshow of a year.
If I wanted to keep it really short, this annual letter would only require six words to describe 2020:
Masked up; Hunkered down; Stayed home.
I had high hopes for 2020 (and not just because of the symmetry): roadtrips planned and some booked, concert & festival tickets purchased, a 30th Year Tax Director Reunion in Sarasota…for starters.
Your hopes and plans were wiped out too.
2020 sucks for everyone, but at least we’re still breathing.
Add those last 2 words to the 6 above.
The first weekend of June was the highlight of the year. Shady Acres Motel. Joseph and his friend Karla. Tom and Gloria. Steve and Claudia.
2 nights of music in the canyon….Jeff Porter…The Nace Brothers.
That weekend would have been on the short list of highlights for ANY year.
Last year’s letter ended with a link to a song that matters and these words:
“Don’t let this happen to you: ‘All the words I never said falling from my eyes…’
Don’t miss your last chance.”
Soon after sending that, and being the spreadsheet guy that I have been since Visicalc, I created a file named “I wanta hear your voice in 2020.” I talked with 88% of the people on my list once, and most of them a couple of times or more. Others only heard my voice in a message.
Many of those conversations make the 2020 list of highlights too.
I missed the “last chance” once. That is one too many.
So now we all look forward to 2021, getting vaccinated, and getting back to some semblance of normalcy.
I hope to do a better job of living “The Jimmy Valvano Three” each and every day of 2021.
“To me there are three things everyone should do every day. Number one is laugh. Number two is think — spend some time time in thought. Number three, you should have your emotions move you to tears. If you laugh, think and cry, that’s a heck of a day.”
I hope you do too.
And I hope to hear your voice in 2021…and to give you a real hug. In 2020, this is the best I can do:
Not sure how many people read their e-mails… Fewer still re Christmas letters… Whatever. But everyone loves JibJab. Sent the following to my e-mail list earlier today
-=-=-=-=-=
It’s a JibJab, an abbreviated “Christmas Letter” and a song that matters.
RE the letter: I reread last year’s. Too long…what a windbag!!!
This year it’s short & sweet.
Saw lots of live music in a variety of venues. Hope to see lots of shows in 2020.
Had some success raising vegetables. Hope for better crops in 2020.
Took several road trips. We’re on a roadtrip right now….our 4th end-of-December trip to Gulf Shores, AL. Hoping for more road trips in 2020.
On our CO/NM road trip we visited with one of the first friends I made in Orygun in 1976, who I hadn’t seen since my solo cross country drive in 2000. On our last night of the trip, I visited with friends from Sarasota who live in Denver. I hadn’t seen one of them since that 2000 roadtrip. Awesome.
A couple of contemplated trips never materialized. Enjoyed the contemplating.
Didn’t do any fishing. Maybe in 2020. Need to find a good farm pond/lake.
Didn’t get a haircut in 2019. Maybe in 2020. Maybe not.
Helped raise money for The Victim Center in my role as a “Sole Man” for their Wine Women & Shoes event. Thanks to all who donated. Hope to raise even more money for them in 2020. Expect to be asked…
Talked to my 93 year old Dad almost every day. He might outlive me.
Made more calls and sent more texts than I received. What’s up with that?
Read too many obituaries of friends and acquaintances. Two friends died suddenly. It’s a good way to go…we’re all gonna die…but it’s hell on the survivors.
If you want details, i.e. the windbag version, give me a call.
Here’s the “song that matters.” Give it a listen. Travis (the banjo player) had only written the first verse when his 91 year old grandpa passed.
Don’t let this happen to you: “All the words I never said falling from my eyes…”
I got started early on 9/23/19 and picked up speed later in the day. I posted comments on and links on Facebook to 14 songs by Bruce Springsteen on his 70th birthday.
They were done in chronological order based on release date, except for the last one. From 13 of his 19 studio albums.
#1 FB at 8:24
Bruce Springsteen is 70 today. Happy Birthday to The Boss.
His audition tape is pretty sweet.
“when they said ‘Sit down’ I stood up…”
-=-=-==
#2 FB at 9:00
I’ve been cranking this one UP for 46 years. That ain’t gonna stop anytime soon.
He said: “I wrote ‘Rosalita’ as a kiss-off to everybody who counted you out, put you down or decided you weren’t good enough.”
My favorite line:
“Someday we’ll look back on this and it will all seem funny…”
Crank. It. UP!!
-=-=-=-
#3 FB at 11:22
I was a fan in my 20’s…back in the 1970’s.
I’ll be a fan in my 70’s in the 2020’s.
“So you’re scared and you’re thinking that maybe we ain’t that young anymore
Show a little faith, there’s magic in the night…”
Crank. This. UP!!
-=-=-=
#4 FB at 1:14
The record company and lawyers mucked everything up for awhile.
It was almost three years before The Boss released his fourth album. This song is the first cut on the long-awaited “Darkness on the Edge of Town.”
“You spend your life waiting
For a moment that just don’t come
Well don’t waste your time waiting…”
And this: “it ain’t no sin to be glad you’re alive…”
-=-=-=
#5 FB at 2:08
“The River” was his 5th album, his only double album and the first of the 80’s. This was his first album to go #1 on the Billboard 200. (He’s never had a #1 single…)
It was never my favorite album, but I’m a sucker for a rocker.
The link has the lyrics…but all you really need to know is this: “I’m a rocker, baby, I’m a rocker, every day…”
-=-=-=
#6 FB at 2:44
This is the second cut of Springsteen’s sixth album, released 37 years ago on 9/30/82.
This song is NOT about Philip Testa. But Philly’s “chicken man” did get blown up in early ‘81 by a nail bomb as he was entering his south philly home. It started a gang war, with a couple of dozen made guys getting killed over the next few years.
Whatever…
Nebraska is a great album,,,but damned is it bleak or what?
Everybody knows this song. Damned near everybody covers it.
Nobody does it any better than my friend David and The Nace Brothers. Seriously.
I’ve always loved this line: “Everything dies baby that’s a fact, But maybe everything that dies someday comes back…”
But I love it even more now that i’m looking forward to being reincarnated and in 40 years or so reading about “the times in which we live.” (Dad uses that one often. 😉 )
-=-=-=
#7 FB at 3:22
“Born in the U.S.A.”
Released 6/4/84.
Seven top 10 singles.
The Boss & the E Street Band achieve commercial success.
My favorite lyrics from any of the 12 songs aren’t from one of those seven songs.
“Well, we busted out of class
Had to get away from those fools
We learned more from a three-minute record, baby
Than we ever learned in school…”
(BTW…I loved school…most of the time…
I’ve learned a thing or two from 3 minute songs too.)
And: “We made a promise we swore we’d always remember
No retreat, baby, no surrender…”
Resist.
And have fun like these folks.
-=-==
#8 FB at 4:24
“Tunnel of Love” is the 8th studio album. Springsteen married Julianne Philips in Lake Oswego, Orygun on May 13, 1985 in Lake Oswego. A bad relationship spawned a pretty decent album.
I lived in Portland at the time. There was a rare sighting of The Boss in the PDX area. None by me.
At the time, I had made several more trips around the sun than I deserved based on a bit of risky behavior. And I was still making some bad choices, especially for my liver.
But my perspective on life had changed a bit.
“Now some may wanna die young man
Young and gloriously
Get it straight now mister
Hey buddy that ain’t me
‘Cause I got something on my mind
That sets me straight and walkin’ proud
And I want all the time
All that heaven will allow”
The Mavericks often have this one on their setlist. 🙂
-=-=-=
#9 FB at: 5:08
I don’t own the next 3 albums.
On 9/11 I posted links to a couple of songs from his twelfth: “The Rising.” This was his first album with The E Street Band in almost 20 years.
Fifteen tracks. Damned near perfect.
For a 70th birthday party…or a wake, this one is also perfect.
“Seven days, seven candles
In my window lighting your way
Your favorite record’s on the turntable
I drop the needle and pray (turn it up)
Band’s countin’ out midnight (turn it up)
Floor’s rumblin’ loud (turn it up)…”
Turn. It. UP!
-=-=-=
#10 FB at 5:58
The E Street Band was back for album #15. “Magic.” 9/25/2007.
Rolling Stone put it at #2 for the year.
Once again, the first track is my favorite…at least for today. 🙂
“This is radio nowhere, is there anybody alive out there…”
“I want a thousand guitars
I want pounding drums
I want a million different voices speaking in tongues…”
“I just want to hear some rhythm,
I just want to hear some rhythm…”
-=-=-=
#11 FB at 6:56
Springsteen’s seventeenth album was released on March 6, 2012.
I’d been back in Missouri for 9 months. I was living alone. There was lots of music in A-306 at The Abbey.
“Wrecking Ball” was in rotation for awhile.
He wrote “Easy Money” right after the 2008 financial fiasco and said this about Wall Street walking away unscathed: “That hustle has been legitimized over the past four years, when you have the level of risk and greed at the top of the financial industry, and people basically walking away, relatively scot-free, completely unaccountable.” [Do NOT get me started!]
“There’s nothing to it mister, you won’t hear a sound
When your whole world comes tumbling down
And all them fat cats they just think it’s funny
I’m going on the town now looking for easy money…”
-=-=-==
#12 FB at 8:24
Jan 14, 2014. “High Hopes” is released.
I like the album. It’s different. Covers. Outtakes that didn’t make earlier albums. Songs that had been on live albums or promo CDs.
There is good stuff here.
But picking just one cut is too easy.
It’s a song that was written in 2000 re Amadou Diallo. He started singing it again in 2012 after Trayvon Martin was gunned down.
This is an Important Song.
So is “What it Means” by Drive-by Truckers.
Black Lives Matter.
“Is it a gun, is it a knife
Is it a wallet, this is your life
It ain’t no secret
No secret my friend
You can get killed just for living in your American skin
41 shots
41 shots
41 shots
41 shots…”
-=-=-==
#13 FB at 9:16
This makes it a Baker’s Dozen on The Boss’ birthday.
Just over 3 months ago, on June 14, 2019, Bruce Frederick Joseph Springsteen released his nineteenth studio album.
“Western Stars” is a solo studio album….and it is a dandy. I heard something about a documentary.
I loved this song at the first note…at the first sound of his voice…and the first time I heard this:
“Some find peace here on the sweet streets
The sweet streets of home…”
And this:
“When everyone’s asleep and the midnight bells sound
My wheels are hissin’ up the highway
Spinning ’round and ’round…”
-=-=-=
#14 FB at 10:18
Why stop at thirteen? This wraps up Birthday songs for The Boss on his 70th, 9/23/19.
I have cranked this song up more than any other by Springsteen. It has rattled walls and made cars shake.
It was released Aug 25, 1975.
We were living in Cape Girardeau and had gotten married 237 days earlier on 12/31/74.
We wanted the hell out of Missouri. (I never expected to move back. Thirty-five years later I did…)
Not much more than a year after I first heard this song, our 2 VW bug caravan arrived in Corvallis.
No doubt this song gave us a push…not that we needed one.
“I’ll love you with all the madness in my soul
Oh, someday, girl, I don’t know when
We’re gonna get to that place
Where we really wanna go and we’ll walk in the sun
But ’til then, tramps like us
Baby, we were born to run…”
