Prologue: No Pressure

When you spend your life in a wheelchair, you get approached with a lot of questions. Strangers want to know, “How’d you wind up in that thing?” Acquaintances ask, “Any progress on the cure?” or “Have you tried moving anything lately?” Kids mostly want to know how I drive the thing. Oh, and how I pee. Over the last calendar year or so my friends, however, have been pestering me with one that has very little to do with paralysis: “When is your next trip?” Well, here’s your answer.


That’s right. Another fantastic voyage starts tonight, but this one is going to be much different than the rest, for a handful of reasons. For the first time since my injury, our destination does not have a southwesterly aim. Thanks to a great experience with other folks in chairs at a conference in Las Vegas last October, we’ve set our sights toward the east. Our main goal is Washington, D.C., where paralysis advocates from all over the country will converge for a Roll on Capitol Hill through United Spinal.

The main purpose of the conference is to pester our elected officials who, in typical Washington style, are considering cutting Medicare funding for complex rehab equipment like wheelchair cushions that help prevent pressure sores in people like myself. Coincidentally, I have had nearly 4 years of bedrest experience from those kinds of sores that might make a compelling argument against those actions. It will be an interesting conversation at the very least.

But since we were planning on hitting the East Coast, we figured why not extend the trip a little more by heading to New York City a little early and working our way south for the conference?

“But Kenny,” you say, “that’s a very long drive from here to there! How long will it take?”

Sheesh… More questions. What is it with you people?

Okay, fine. It’s actually good question, and the answer is what makes this trip even more fascinating than both our destination and purpose for it combined. This time, there will be no 14 hour days on the road trusting outdated GPS. Tonight, we tackle a flight. For those not familiar with traveling by air whilst paralyzed, here’s a quick rundown of what it entails:

Obstacle #1: Your legs go under the plane. Yes, you read that right. While every other passenger on United Flight 1695 departing at 11:17 p.m. from Seattle to Newark gets to walk onto the plane with their choice of quasi-comfortable seating, yours truly has to detach from his only mode of transportation at the gate, where a couple of underpaid baggage handlers (a.k.a. throwers) will gently place said “legs” in the underbelly of the plane with the rest of everyone else’s socks and undies.

Obstacle #2: 5+ hours on a bony ass. Once I say goodbye to my normal wheelchair, I’ll be strapped like Hannibal Lecter into what’s called an “aisle chair” which is exactly what it sounds like; a clipboard on wheels they’ll use to drag me onto the plane. Once aboard, they’ll plop me onto a pillow of someone else’s beer farts that “can act as a flotation device in the unlikely event of a water landing.” Remember what I said about needing specialized seating arrangements? I’ll be bringing a spare.

Obstacle #3: Humpty Dumpty, is that you? It’s only after clearing the first two hurdles that I have heard plenty of horror stories from my peers who have flown before me about being reunited with their wheelchair at their arriving gate only to find it broken, missing parts or both. It’s this final hurdle that has kept me in “Road Mode” these last dozen years. But anyone with familiarity of my track record of wheelchair issues over the last few trips (Exhibit A and Exhibit B to refresh your memory) understands that it’s now become a wash in a risk management sense. Five days on the road, or five hours in the air, shit will still hit the fan. Bring it on.

So here we go. I’m accompanied by the usual suspects and their assortment of skills. I’ve got my lady friend with her unshakable positive attitude. Slumberjack has her Breathe Right Strips. And Alicia just bought a new ukulele. On second thought, pray for Claire and me.

I received a card in the mail this afternoon from one of my nearest and dearest friends who knows how much of a quote guy I am. The front of it bears a quote from Neale Donald Walsch that says, “Life begins at the end of your comfort zone.” The inside reads “Bon voyage mother f*cker! Cheers to you and your adventurous spirit.”

What can I say? I love my friends. Stay tuned for plenty of pitfalls snafus hijinks that will make for entertaining reading.

9 Comments Add yours

  1. Suzy Q says:

    It’s 11:17pm and time for take-off. Wheels up, mother f*cker!

  2. Tara says:

    Good Luck on your adventure. Can’t wait to see how everything works out. We have been to new your 3 times. My situation is quite a bit different, so I really feel for you all!! You guys are AMAZING!! Safe Travels!!

  3. Lynn Murray says:

    Great stuff, Kenny. Gotta admit – I can’t remember meeting, although I think we have. At Vegas last year? Later.

  4. Joe Preti says:

    Bon voyage Kenny. I’ve flown about 5-6 times and it hasn’t been that bad. Take pictures of your chair before turning it over to the airline so you have proof of any damage. Also know they can’t charge you for any of your medical supplies. Self advocate and direct your care when being transferred. NY is my hometown and you’ll have a blast. If you have time go to Arthur Avenue in the Bronx for great pizza and Italian food. Carnegie deli in Manhattan will blow your mind. Overall, best food anywhere.

  5. Ted Czyzowycz says:

    Didn’t get a chance to say goodbye when we met today at Newark Airport this morning. I have met hundreds of people in my 20 years at the airport but you and the girls were the most pleasant, beautiful and inspirational people I have ever met. And I thank the good Lord above that I had the opportunity to meet all of you.
    I couldn’t wait to get home and log into your blog. Love it. Don’t ever stop.
    I can’t imagine how you felt when you lost your soul mate but God has blessed you with three more fantastic, beautiful people. You truly are a lucky man.
    Wishing you and all the rest all the best wishes. I think things happen for a reason and i believe you will accomplish a world of good. Keeping a special spot in my heart for you all. Ted (United)

  6. Cora says:

    “Clipboard on wheels” 😂😂😂

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s