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.

Serving with MS webinar, Friday & Mab's 1st 5K!

Happy Veterans Day! 

On Nov. 13, the MS Society's Ask an MS Expert webinar will feature the challenges of serving while dealing with multiple sclerosis. This Friday, Air Force veteran Karla Clay will share her story of living with MS. One of my best and strongest friends went down this same difficult path: I'm watching for him.

Also, this lady ran her first official 5K! (She usually does one on her own every week.) She ran to raise funds for the Wounded Warriors Project.

For years she performed patriotic musical shows for veterans on this day. She got into her special audiences, and they were really touched by her show too. So many of them would thank her afterward and share their stories. It was one of her favorite days of the year. Now she misses those Veterans Days. Today she ran in their honor. Her write-up:

First, a big thank you to all the veterans out there - we owe you so much! Today I did the Carry Forward 5K for the Wounded Warrior Project (and another big thank you to all who donated.) The goal is to raise $600,000 by the end of the year and to date we're at over $586,000.  Of course, the temperature dropped from the 70's yesterday to 46 degrees today, but as you can see, I was appropriately ostentatious in my attire for the event.  I started by giving a flag to my neighbor across the street who is retired Coast Guard and ended by giving my Wounded Warrior Flag to another neighbor who is retired Air Force. My plan was to jog as much as I could, but I must have jolted one of those pesky inner ear crystals loose when I started to jog and got a little vertigo, so I ended up walking. Last Saturday, I walked out my course for the 5K, but when I got to the end my watch said I was only at 2.7 miles - so I kept going. Turns out the GPS from my phone wasn't connecting to the watch and I ended up doing an extra 1/2 mile (I'll be ready for a marathon soon --- NOT!)

Roll On

Out on the road, things don't always go as planned...

We took off on a big trip west. It came together quickly. The perfect small travel trailer came on the market, and they don't last long, so we put our money down. It's a toy hauler, meaning the back flips down into a ramp that will be great for the wheelchair, and it's 16 feet long, so it should be OK for us to sleep and eat but still be able to fit in most campgrounds at the national parks which is our goal. The catch is that the toy hauler is all the way on the other side of the country in Arizona, but we've wanted this for a long time, so now the trip is part of our adventure.

The big day comes, and we got a late, late start. We don't travel light: as my health becomes more and more involved, so do the number of suitcases, bags and the like. Stuck with the work as usual, Mab has a hard time planning and packing. What can be packed, and what will still be needed in the morning before we leave? What will we need handy in the car? In the hotel? In the RV? These things frustrate her.

To make things worse, in loading the van, the stacked containers she uses to store the luggage toppled, creating more confusion.

Then when we finally loaded up, the van lift that transfers me from wheelchair to passenger seat had no charge. Sometime during the past week a button had jostled and turned the unit on. So, while we embarked and the lift was charging up, I sat in the back of the van. I'll do this for short trips when it's not worth the hassle of transferring. But being in the back of a cargo van (no windows installed yet) can be a drag, especially during a road trip. The music's garbled, there's no one to talk to and nothing to see. I sit tall, so all I see through the front windows are grass, pavement and sometimes the bottom half of cars and buildings flashing by. So here we are, driving down colorful Route 66, but all I'm getting is Route 33.

But I remembered something Mab has told me about travel, and she's done more than her share. She said that no matter how much you plan, things rarely if ever go exactly according to plan. You've got to be willing to deal with whatever comes up, and roll on to experience your trip. And sure enough, the traveling I've done has gone that way, and so it was today. It's kind of the way you have to be with a disability anyway, willing to roll on.

UPDATE: 48 hours later, we were driving through the desert brush and oil pumps of arid west Texas. We weren't where we were supposed to be: We should have been a couple hundred miles to the north, but we took a wrong turn for Abilene instead of Amarillo, because we were both punchy the night before and they both start with "A." But we rolled on until our newish vehicle with only 15,000 miles on it lost all power on a four-lane interstate. We pulled over on a thin strip of shoulder with loaded oil rigs whipping past on one side, and a steep ditch on the other, so that we were stuck there in 100° heat. Of course it was Sunday afternoon and the roadside services were slow to help.
I have MS, so after two hours in the heat I was seeing Jesus. Jesus was wearing a brown law-enforcement uniform, and turned out to be a sheriff, hallelujah. Big Thanks to him and Nissan Roadside Assistance and to Dale at Westwind Transport of Big Spring, Texas, who towed us to a completely accessible hotel with lovely air-conditioning. Thanks to these guys, the middle of our story has a happy ending.

We were stranded in the hotel until Monday. On Tuesday we lost the room to somebody with reservations. All that day we sat in the lobby, with Hoyer lift and all those bags around us, while we furiously made phone calls to the Nissan warranty garage 100 miles away. (We were waaaay out in nowhere.) It was a little bit exciting where we'd end up.

But long story short, we got the van back and on Tuesday night were back on the road. The rest of the trip was brilliant.

Roll on.