2019-10-19

Playing the Disability Card FTW

I throw caution to the wind so frequently that I’ve practically been forced to learn how to parasail. Now I’m not running out into a lightning storm with a kite and key—c’mon, I’m not daft (nor am I a printer, political philosopher, politician, Freemason, postmaster, scientist, inventor, civic activist, statesman, or diplomat). But I’ve been rolling the dice since way before Andrew Clay coined his middle name. I’ve been pushing envelopes for so long I can remember the days when you actually had to lick them. I’m not going to say Livin’ On The Edge is my anthem, but Aerosmith has a point, and author J.K. Rowling perhaps said it best.

"It is impossible to live without failing at something, unless you live so cautiously that you might as well not have lived at all. In which case, you fail by default."

There are going to be failures when you live with a challenging disease, but at least you are living, damn it. So that’s why I wantonly attend chaotic outdoor events—most recently the Albuquerque International Balloon Fiesta held on monstrously thick grass—that are not especially friendly to a disabled person with multiple sclerosis … particularly one who also uses a wheelchair and has a mercurial bladder with an attitude problem.

Allow me to set this stage: I surprised Laura with a pair of tickets to see Sting in concert. An outdoor concert. At a grassy community park. In Taos, New Mexico. Yes, the tiny mountain town of Taos, population 5,668 people. Number of concert tickets sold to see Sting in the tiny mountain town of Taos? 9,000. What could possibly go wrong?

As you might expect, the town was crowded. The ski area was crowded. The restaurants were crowded. The park was gonna be hella crowded. To prepare, concert organizers informed attendees that basically you could bring in jack squat: no chairs, no umbrellas, nada. A blanket to sit on was permissible, but pure folly as there was no room on the ground to place said blanket—it was going to be standing room only. Ah, unless you were handicapped! There was a special fenced-off section reserved for us “specials” complete with a paved path, chairs, and even two wheelchair-accessible porta potties just outside our area.

The evening started perfectly. We easily found parking. We got a restaurant reservation at a steakhouse directly across from the park. We got to cut the line to get into the concert. And we found a great spot to park my wheelchair in our reserved area. Just when I thought it couldn’t get any better, while we were waiting for Sting to take the stage, the woman sitting behind us tapped me on the shoulder.

The accessible porta potty appears sooo close!
“They gave me an extra pint of beer for free, and I can’t drink both. Would you like one?”

As I took the beer, uttering profuse thanks, it dawned on me that this is what it must feel like to hit the Powerball. Cold beer. Cool night. And a hot Sting. (Seriously, the dude is 68 years old and looks twenty years younger. Sings pretty well, too, I hear.) But before I took my first sip of that icy cold, delicious free beer, I overhead someone complaining. About the bathrooms. The wait was over an hour.

I looked at the beer. I looked at the handicapped bathrooms. I looked at the long, long, long line waiting to use the handicapped bathrooms. I knew what had to be done. Using tremendous, and to date, unknown willpower, I passed the beer to Laura, not even taking a sip.

“Too risky,” I said. “The last thing I need to do is pee.”

As the words escaped my mouth, I knew I accidentally had just violated the cardinal MS rule. Never, ever talk about bathrooms unless you have easy access to one. No, no, no, I apologized to the MS gods. It was just a passing observation! Nope. Now I had to pee. And Sting was coming on. I turned my wheelchair around to head into the gauntlet of the snaking bathroom line when a bathroom door opened, and—for the win—I played the card. The gimp in the wheelchair card. I locked eyes with the woman at the front of the line. I pointed, she nodded. It was understood. 

Safely in the bathroom, the panic soothed. I started to relax and focus on the task at hand. Until I overhead a man in line angrily yell loudly that he had been in line for an hour and 15 minutes. And that he really, really had to pee. Which meant, suddenly, I didn’t have to. Oh, MS! After 10 minutes I emerged, puzzled as to why there were only two bathrooms for 9,000 people when I spotted, on the other side of the field, the dozens of porta-potties reserved for able-bodied concert-goers. All underneath a mammoth sign that read RESTROOMS. Too bad that guy, and the hundred or so behind him, couldn’t read.

I got back to our spot just as Sting started to sing. I closed my eyes to absorb the moment. Message in a Bottle vibrated my wheelchair. But at that moment, I didn’t need to send an SOS to the world. I had the world in my hands. We might not have control over our diseases—and at times we might channel the King of Pain (Laura might also vote for King of Pain-in-the-Ass)—but we have control over our attitudes. Never forget that. And never let that go.






12 comments:

Tara said...

As always, you make me laugh about MS, which is a gift. Thank you. And I hadn't read/heard that J.K.Rowling quote, that's a great one.

Dave Bexfield said...

Thanks Tara! Glad I make you laugh. Sometimes it's all we can do...

Anonymous said...

I always enjoy your tales about all your adventures. Good for you that you attend all the things you tell us about. Sting certainly is worth the effort (in my opinion).
As far as that guy, and what sounds like many others, using the HP facilities, you shouldn't feel any guilt about using it before them. Some people!
Glad it was a good show.
I think of you in Albuquerque whenever I watch "Better Call Saul" or previosly, "Breaking Bad"- 😉
Susan

Dave Bexfield said...

Susan! Thanks so much. And being connected to two of the best shows ever is flattering. :)

Anonymous said...

Hysterical, as usual, David. I am a care partner for my dear one of 37 years. We know how to play the "gimp card" (our name for it, not to offend anyone) when we need to and it usually was for concerts. But, of course, there are always the able bodied numb nuts that take advantage of it also. I hope your offender wet his pants!

Dave Bexfield said...

Gimp card?! I call it that too, haha. Sometimes you gotta play it. Try to avoid it, but that doesn't always work...

Kathy said...

Hi I love getting your letter & I know that I will have a laugh! Yes, that is a fear to be at a concert particularly outside & need to pee but boy does it feel good to have the pee & then sit inside or outside & enjoy listening to the concert or show or whatever! That sigh & breath relaxing is gold!
Take care, Kathy

Dave Bexfield said...

Thanks Kathy, people have little clue how challenging seemingly minor issues can be.

My Odd Sock said...


Ah man I am jealous. A great night indeed. Thanks for giving us a sneak peak. Nothing like trying to pee when you know others are waiting. (NOT jealous about THAT)

Carrli said...

Hi dave, I welcome and encourage an opportunity to communicate with you, preferably talking in person eventually. I have had MS since 1999, at age 22. I have failed numerous DMTs, and feel I actually do worse on them. I plan to join a life study at NIH, currently scheduled for the end of January. Please contact me thru email, and hopefully we can arrange to speak on the phone.

Roland Clarke said...

Not reading signs must be a disease spreading everywhere. I resorted to a condom catheter to evade dire straits. I'd love to see Sting in concert. (Last concert I attended was Steve Hackett - ex-Genesis lead guitarist - at Royal Albert Hall; comp tickets as a best friend.)

Dave Bexfield said...

MOS, thanks sir! And Carrli, feel free to write me anytime—my newsletters all have my e-mail. And Roland, I brought my CC but didn't deploy it because I *thought* we had our own private bathroom. Like you, I forgot to account for illiteracy. And nice '80s band plug, but I'm not sure why you'd want to avoid Dire Straits. They played some decent music!