Expect the Unexpected

        We're hitting the road again soon. Already I know things will not go the way we planned.

        How do I know? From Mab. She has done a lot of traveling. She lived in Switzerland a few years and really saw Europe. Backpacking, constant weekend trips, saw all kinds of stuff and has a ton of stories. I've done a lot of road trips, but she's traveled. 

        When we started in the RV, she looked me in the eye. She said, Things are going to go wrong. This I promise you. Things will not go according to plan. Know that going in. You're traveling, deal with it. Words like that.

        That's also what I heard John Morris say a the stage at the Chicago Abilities Expo. Things are going to go wrong. Morris is not a pessimist, he's an expert. He's been all around the world in a wheelchair, which he writes about at WheelchairTravel.org  What I remember most in his message was to be prepared, know your rights and enjoy the adventure. Embrace the inevitable, figure it out and still enjoy epic self. 

        OK, so that's two people I heard from. Then I saw it in action.

        You have to be hands-on anyway to travel in an RV, ready to roll up your sleeves and get things back up and running. A lot can break down, a lot can go sideways when you're wheelchairing through set-ups like ours. And since the whole purpose of the thing is to get away from it all, who knows where you'll be when something does go down?

Joe Pool Lake on a nicer day.

        We were camping in Cedar Hills State Park right outside of Dallas. It's a beautiful place because you can feel your mind clearing itself as you drive through its woods (cedars are some literally gnarly old trees) to the campsites on a lake. So it's a peaceful refuge from the world - however if you look real hard, from a certain angle, miles beyond the lake I could make out the outline of one of the stadiums, like a continuity error in a movie. But we couldn't see it from our site or from most of the other sites either. Anyway, we had hurried away from Houston ahead of Hurricane Laura and it felt so good to have found this place. We slept late the next morning and marveled at the blue sky through our skylight, with an occasional white whisp of cloud racing by overhead. Moments like these were why we chose to buy the RV.

Wait, she said suddenly, the skylight cover is smoke-colored.

You opened it overnight? I said.

No, I didn't, she said. She checked, and there was no cover there at all. Our RV was open-air. Like the Pantheon in Rome, except it was only two years old. We had no idea. It must have flown away during the drive to Dallas. It was the second one we would have to replace in a year. The one in the bathroom had cracked several months earlier. Like I said, like the Pantheon, but not like the Pantheon at all.

Instantly, serenity became anxiety. It was Labor Day weekend, we were on unfamiliar turf, and we heard it's hard to find RV repairmen right away. That turned out to be true. We called all kinds of places, and we called Good Sam roadside. We struck out all around. To add tension to the plot, we were due for rain that afternoon, spillover from Laura. And it was true, the faraway skies above the stadium were definitely a different blue, the kind of blue that wants to rain on you. Further tension: our bed is directly under the skylight. Just imagine.

Mab snapped into action. Cue music. We were still relative newbies and had no ladder to climb on our 12-foot roof (and I wasn't crazy about the idea anyway). Instead of tearing open grocery bags for a patch, we cut up a vacuum-storage space bag, much stronger. We lifted the bed on its vertical track - it lifts up to the ceiling - so that she could reach the skylight easily. Then she climbed on the bed and got to work. The job was to seal the hole tight with plastic and duct tape from the inside of the trailer, without an outside view of what's going on. She worked and worked for what seemed like a couple of hours. Her mind and skinny little fingers were busy, never resting, feeling around, prying, pressing. I don't know how she did it, but she sealed it outside and inside with tape. It was really something. And, not a moment to spare: when I looked outside, the low grey rain clouds were creeping across the lake. Deep breath. It's a hard rain's gonna fall. 

Please, baby, hold!

In 20 minutes, it started. The plastic pounded with rain. The deluge didn't last long, but it was intense. But the shield held! No leakage. Amazing. It held all weekend long, although I don't think we had any more rain. On Tuesday, the first business day after the holiday, we were lucky to find a super helpful place south of Oklahoma City, Silverado Road service diesel and RV repair shop, 6700 South Eastern Ave., Oklahoma City, OK 405-830-8792 silveradoroadservice.com They took care of us right away and did not take advantage, very affordable and fast work. When we pulled in to the shop, the Mab shield was still there after driving a few hours on Interstate 35. She rocked it. The guys in the garage were impressed, but not as much as me. They said the original skylight cover had been not been locked down and so had jiggled a little ways open, then tore away, while driving. So many things to remember.

Aftermath. Relaxxx.

Now we're gearing up again and she is proud to have figured out the fix to a broken water heater (a fuse) and purchased and installed a backup camera on the RV, with a little help from our friends. Last year on the road, she fixed a leak behind the toilet, which is a small, small space to work. All these surprises and more from a two-year-old trailer (not the Pantheon). She is tenacious! Definitely living what she preaches.

We're about to shove off, so there will be more things to pop up. Because things ain't going to go the way we plan. That isn't going to stop us either. And that's life anyway, right?

How the Hell Can a Quadriplegic… Exercise?

Every once in a while I tell a friend on the phone, "Gotta go! I'm exercising with Mab (my wife) in five minutes."

And he may go, "Oh ho ho! Is that so?" because he knows I'm quadriplegic and I know I'm quadriplegic and maybe I'm talking code for some extracurricular activities about to go down. You know, the old wink-wink, nudge-nudge, say no more. (Any Pythons in the house?)

But I say, "Nope, gotta go, bud, can't be late. Bye." Quick, she's already casting it to the TV!

So now my friend's saying and probably you're saying, Dude, what kind of exercises can a quadriplegic do?

These are exercise videos that Mab started doing during lockdown. Planet Fitness began putting out free ones daily, with newbie-friendly exercises. Not her thing at all, but she was climbing the walls and was surprised to find herself having fun doing them. When retired NFL star Julian Edelmann led a session, I sat in for laughs and support. It grew into something to do together.

So, how the heck can a quadriplegic exercise? Is it wishful thinking? Is it woo?

Fair questions.

It's not woo. I'm actually doing this stuff, and sometimes by the end I'm out of breath and heart's a-racing. That's all real. In fact I crave it because wink-wink, nudge-nudge, there are few other activities as exhilarating.

Is it wishful thinking? No, it's not that either. I'm not pretending or hoping to exercise my way out of the wheelchair. I'm not trying to sell a book or diet that in 30 days is going to have you moonwalking across the floor.

So, what am I doing? Pretending? Scoring points with my wife? Because I'm putting in the time, many minutes over many days. It could be the power of positive thinking, but I'm thinking it's more than that. I'm thinking it's like dancing.

Do you know when you're on the dance floor and you hit that groove where the music sweeps you away and takes control? I was a terrible dancer, but even I had moments when my body surprised me with a juke here or a slide there, neither of which I planned or thought of in advance. It was the music cranked it out of me. Can you relate?

So now I watch and listen to the routine going on and try to move whatever's supposed to be moving, whether it does so or not, mostly not.

Even if not, there's a type of exercise called isometrics where there's little or no movement because you press your muscles into or against resistance. Oh, it'll tire you out. That's what I'm doing. 

I might try pumping my arms in a curl. Looking down, I may see they moved a centimeter, a millimeter or not at all, but I feel the muscle firing. Other times I swear I'm wiggling my toes or my foot, then check to find nothing at all. But I feel it firing: the muscles? the tendons? the imagination? Who knows? But I can tell you that after 20 minutes or sometimes even 10, I can feel my heart racing. From where I sit, any kind of cardio exertion's good indeed.

The best ones are trainers who throw in a lot of vocal cues and descriptions of specific muscles being used. I respond better, with better results.

I have some proof. After a while, sometimes my legs kick or arms move. It's not all the time, but it's like magic. Sometimes a jerk, or sometimes it goes on and on like a car in winter with engine knock, chug-chug-chug-chug-chugging long after you pulled out the keys. (Do they still do that?) It's funny and it's gratifying.

My torso, shoulders and neck are stronger, too. A lot of people in chairs end up slumping, me included. But I drive with my head, by pressing sensors in my headrest. The better my upper-body control, the better my access and control over my mobility. Also, the better to avoid injuries to neck muscles and bones.

Besides, doing the work keeps my head in the game. It's what we do every day, to boost one another up. We even started looking forward to it. (I know: bizarre!) So we got up to day 123. That's not a brag, it's a lifetime. Then Mab got an attack of vertigo for a day - it's an inner-ear problem (BPPV) that comes and goes. We had to start all over, and got to 9. That's when I got together with some buds for the first time in 14 months, and we reunioned a little too hard, which wiped out most of the next day. Yeah. So we started over again, and today is 25. Again, just clinging to my liferaft. 

I've said it before, lockdown was same-old same-old to a lot of folks with disabilities. If you say 20-minute exercises will make my legs kick, keep my brain from turning into mayonaise, and sculpt my wife's legs? Cast that video.

Any quads out there with an exercise program? Tell me what you do.

"Opening the world, one disability story at a time" – KPFT FM Houston Peoples News

This year's Oscars showed that disability stories and issues are strongly in the public eye. And that's the mission of a group that's moving the needle of awareness, one story at a time. I talked to Celia Hughes of Art Spark Texas about Opening Minds Opening Doors, a program helping anyone, anywhere tell their own story and open people's minds. 

#ArtSparkTx #multiplesclerosis #advocacy #disability #omod #storytelling

Smooth n Creamy Like a Dreamsicle: Virtual WalkMS

This sassy gal walked 5 miles for MS today. It was Virtual WalkMS and she took it to The Woodlands, TX, walking along the waterways around Cynthia Woods Pavilion on a gorgeous spring day. For her uniform, she treated herself to some color. She's all smiles when she wears it.

It was a perfect spring day and you could hear that sunshine in her voice. She had so much fun.

The National MS Society is holding Virtual WalkMS all year round to accommodate immuno-compromised participants. Aided by a cool virtual experience website, the Walk MS Interactive Experience, they're encouraging all to get as creative and fun as they wanna be: let your freak flags fly.

I spoke to Amanda Payne of NMSS about this year's special event to get through the pandemic:

Exercise only makes her rev up higher. From there she went to the grocery store and we had something to eat. Later, we exercised together: we have been doing a routine of some sort every day this year – today was day 100.

Cheers to my champ!

A Guy and His Guitar - "Rock n Roll n Mangled Spinal Cords"

With a chronic illness, you have to focus not on what you can't do -- but what you can...

You've got this one life and time's ticking...

You're a fool if you just sit in your own shite all the time and don't look up at the sky...

Just because things didn't go the way you planned, guess what? It doesn't go according to plan for anybody else either...

That was a column I was reading, words to that effect.

Ah, shaddup! is what I was thinking.

Which is funny because the column in so many words summed up my approach to MS. I mean, I don't say things like that to others, but the self-talk in my head cycles through things like that all the time. But sometimes you don't want to hear the spiel, right? Not even if it's your own.

I kept reading though, because it was written well and I was almost through it. And it turned out to be a good piece, because before I got to the end it had sent my mind off spinning in its own direction, like what a good book will do to you. The author said not to focus on the things you've lost, but the things you've gained. Which makes for tricky math. You've got a lot of things on the one side, and not as many on the other. Do they balance out? Only if the things gained are a lot bigger, more substantial. Disability toughens you: plus. It makes you more resourseful: plus. I guess in a weird way, disability brought me my wife, because neither one of us was in it to get married. Our attitude toward marriage was more like, 'Ick.' But things changed, kind of fast, which is a whole other story. Bottom line, I got the girl, even if I had to get disabled to do it. Jackpot. Gotta do what you gotta do.

But while reading that column about losing things, images flashed through my mind. One of the first was giving away my guitar. A guy loves his guitar. We were literally attached at the hip for a dozen years. I walked around with it everywhere. It was a black '84 Fender Stratocaster, and it was all mine. But my fingers eventually were no longer mine. I loved playing but was never wizard, and yet my playing grew sloppier still. A lot of playing is muscle memory: practice practice practice and you'll play better and faster. But I was going the opposite direction. My fingers were unlearning songs. In the middle of jams, the guitar pick shot out of my hands like a bullet. There came a time when the guitar never left its case, and when the case grew dust. I scarcely noticed because life had become so tiring that simply going back and forth to work and school left no time for guitar anyway.

Dangerous Black Man Armed With Strat

Times with my friends were rarer too, so once, when one of my best buds was leaving my apartment, I happened to spot the guitar standing in the corner. I didn't think about it beforehand, but I told him to take it. Of course it had to go to him, the only one of us with talent and seriously playing anymore. His bands would go on to play the big Chicago clubs on Saturday nights. It was instantly clear to me, so I said to take it with him. I had to say it twice because he didn't understand. I didn't either, I just wanted it gone. That and the acoustic, a chunky strumming guitar. That was a helluva weird feeling afterward. Notice how detailed this got? It's like telling your friend about a breakup. A guy loves his guitar.

I don't remember getting a mobility scooter, or getting approved for disability, or getting the blue parking tag, but I remember that feeling of my guitar being gone so well. I'm feeling it right now. I felt it while reading that column.

That was years ago. Water under the bridge. I think I saw it once in all that time. I couldn't play it, so who cares anymore? We broke up. But here's the cool wrap-up, the thing gained.

Little King

My friend's son, who is my godson, grew from a little train fanatic into a tall, cool teenaged bass player like his daddy. And just like his daddy, he's fronting garage bands. In the past year photos surface of him slinging a guitar that's looking mighty familiar. He's made a couple slight modifications to it, and I'll admit wtf'ing at first sight. But a guitar is a very personal thing. A guy loves his guitar. So you'll do what you want to make it yours. The Strat's his, and they look right together. I'm loving that. I got the girl, he got the guitar. It's a crazy life, ain't it?

I also have admit something else that says everything turned out just the way it was supposed to. Because honestly, truly, I totally sucked at guitar.

Whew Times Two

Last year we took the Pequod, our RV, on an epic (for us) trip along the Gulf Coast from Houston to the Everglades. We were gone for a month and had a blast. On our way back they closed the Louisiana border behind us. So began the pandemic. We took that trip at just the right time, and thank God we got back with all those great memories. I was looking at Mardi Gras too on the way back, which turned out to be a super-spreader event. But we missed that as well. Whew.

Last week we took it out for a week at Lake Corpus Christi State Park. Saw some cool stuff: Padre Island National Seashore, Goliad, Corpus Christi, and discovering the state park itself. We were having such a good time that we seriously wanted to extend the trip to another site. But we decided against it, and returned a week ago, Saturday. On Sunday, historic statewide winter storm began. If we had been out there another day, we'd have been screwed.

That makes Whew Times Two.

The neighbors

"The Castle" overlook, built by the CCC 

Something Fishy: Here's to beautiful, boring Routine

On this hellday, hypnotized by horrible images, I'm sooo looking forward to a chunk of sanity to grab onto. Something nice and predictable and boring. I'm going to play Mr. Fish again.

During the lockdown my wife @char2go and I started drifting. It was a weird, anxious time for all. So what we tried was to exercise to a YouTube video together. It could be short, it could be easy, but we tried it. Then we tried it a second day, and then a third, and eventually it became our habit that we laughed about and looked forward to every day.

I'm a quadriplegic, she is not. She does all the movements, I do few if any. But I flop all over the place. I flop around like a fish out of water. It ain't pretty. But every day I do so, and I laugh and by the end I'm out of breath just like she is. It became our routine, boring and beautiful.

Today that routine sounds mighty good. I'm zipping into my Fish suit.

Who dat, bottom right of Skype screen

BTW congrats to my lovely @char2go for helping ring the closing bell yesterday with @PlanetFitness on the New York Stock Exchange! The sky's the limit, Coach.

#disability #multiplesclerosis #PTSD #BipolarDisorder #Anxiety #Depression #PanicDisorder #Agoraphobia #ObsessiveCompulsiveDisorder #MentalHealth  #MightyTogether #ADA #planetfitness #move #exercise