One Night Only

I have no idea what time it is, but it’s late – maybe eleven or midnight? But, because we’re strolling back to our hotel on the night of MedTrade’s big parties, Atlanta’s downtown sidewalks are still busy. Block after block, people have been congratulating me on my performance, as if I’m the real deal.

“You were awesome tonight!” a woman shouts to me as we wait to cross a main drag. “I was one of the women security pulled off the stage when you were up there – that was me!”

This all started a few hours ago, harmlessly enough. Every year, my company throws a provider appreciation party one night during MedTrade. First and foremost, the annual party is a terrific opportunity to socialize with the providers we work with throughout the year, an inspired occasion to get to know those who we strive to support. Secondly, many of us have spent a lot of time leading up to the tradeshow, preparing details and products, then once at the show, we work very long hours, so the party is an opportunity to relax a bit, and get to know providers and co-workers while enjoying great food and music.

Somewhere along the line this year, however, I decided I should get up on stage and sing karaoke with the live house band, reckoning that would be one heck of a good time, for me and the huge crowd.

…Well, in good conscience, maybe I need to stop that part of the story, and go back a tad farther in my retelling of the evening to explain exactly how I even got to the epiphany that I should get on stage in front of a huge club of people and put on the rock and roll show of my lifetime….

Somewhere along the line, I asked a bartender for an empty glass, a straw, an energy drink, and a double-shot of Jack Daniels. Not only had I never had an energy drink, I never had Jack Daniels, either – and by the looks on my friends’ faces, I concluded that no one had ever combined the two, no less. Indeed, my college chemistry was somewhat limited, but I knew enough to instruct my friend how to place the double shot in the glass, then add double that amount of energy drink, and then with a constant draw on the straw, I took it down in one breath. It burned like kerosene going down, but, surprisingly, it had no affect on me whatsoever – that is, until I felt compelled to get on stage with the band, and rock the house as no other.

“Brian,” I yelled to my co-worker and travel partner over the loud music in the packed club, “we have to get me on stage with the band.”

Brian chuckled and smiled at me, appearing skeptical but tempted to go along with this for the ride.

“Really – I’m serious,” I yelled. “Let’s get me on stage with the band – I’ll rock the house.”

We made our way through the crowd to the side of the stage, to the woman who was handling the band’s play list.

“I’m Mark Smith, with Pride,” I yelled into her ear, pointing to the company T-shirt I was wearing. “Can you squeeze me in quickly to do a song?”

I was trying to play two trump cards – the usual move-the-guy-in-the-wheelchair-to-the-front-of-the-line card, and the I’m-related-to-the-host card. I figured that she couldn’t say no to getting me on stage in short order.

“The band’s going on break till 9:20,” she yelled. “But, I’ll put you on the list for then.”

I thanked her, and realized that a wheelchair, a position in a company, and a self-invented cocktail is really all you need to become a rock star – what an easy gig.

Brian and I headed out toward the lobby to plot my performance coming up in half an hour.

“We have to spread the word,” I told Brian. “Let’s get everyone.”

Brian went upstairs in the club, and I stayed downstairs by the lobby, both of us spreading the word that I was going on stage at 9:20 – a performance not to be missed. And, word spread like wild fire, people pouring into the downstairs club room.

Close to show time, I rolled up toward the stage, everyone patting me on my back as I squeezed through the crowd, and security moved the front-row barricade, allowing me to the side of the stage, where there was a ramp. Off to the side, in the dark, I waited in the wings, ready to rock the house.

“Mark Smith,” the MC announced, and the crowd cheered.

I rolled on stage, looking out to the crowd of cheering people, a guitarist to my right and left, a drummer behind me, colored lights shinning down. I took the microphone from the MC, and was ready to roll.

“I’m Mark Smith with Pride,” I shouted. “I’m in my Q6000, and I’m on the highway to Hell!”

The band immediately went into playing the AC/DC’s classic, Highway to Hell, and the crowd went nuts.

With the mic in hand, fist in the air, I went into the lyrics.

Living easy, living free
Season ticket on a one-way ride
Asking nothing, leave me be
Taking everything in my stride….
…I’m on the highway to hell….
No stop signs, speed limit
Nobody’s gonna slow me down
Like a wheel, gonna spin it
Nobody’s gonna mess me round….
…I’m on the highway to hell….

Women were jumping on stage, and being removed by security. The crowd was pulsating up and down in sync with the beat, fists were pumping in the air. And, I was a man possessed, screaming the lyrics, working the mic, and playing to the crowd – my rock-n-roll attitude in full affect. At the guitar solo, the guitarist came up to me, leaning back with his guitar in play, rockin’ to each other, a scene from any great rock show. On queue, I went back into the lyrics, and the crowd was shouting along.

Make no mistake, I was up there, with the crowd in a frenzy, my stage antics in full affect, and the band blazing, living life at 300 miles per hour, with a wheelchair, and cerebral palsy, and an understanding that there’s nothing more liberating than simply enjoying every moment as you are, in your own skin, for the world to see.

Now, the woman on the corner is still going on and on about how I rocked the house. And, she leans in and hugs me, and my chair moves, suddenly powered.

“You ran over my foot,” she says smiling, stepping back.

I glance at the crowd around us.

“No, honey, you hit my joystick,” I quickly reply.

The crowd bursts into laughter, and I realize that there was something left to interpretation of my reply.

“If you know what I mean,” I say, winking at her, spinning my chair around, heading back to the hotel with my friends, a ruckus rock star for one night only.

Stories In My Pocket

Several times per week, I make the trip from my office near one end of my company’s building, down the back utility hall, clear to the other end of the building, a city block’s length, to our shipping department. I often need to ship an object that’s small enough to fit in my shirt pocket, but more valuable to its recipient than anything purchased on Rodeo Drive, all but irreplaceable: A wheelchair component that someone needs to get his or life back in motion, where such a seemingly mundane piece of metal, or plastic, or wire means the difference between passing finals in college or not taking them, enjoying a vacation or being confined to a hotel room, arriving to work on time or getting laid off, or being mobile to join family in the backyard or being stuck in bed – the difference between truly thriving or merely existing.

I’m reminded of the gentleman who flew from Minnesota to Maui, for the honeymoon he and his wife skipped decades before because of the accident that left him a quadriplegic just weeks prior to their original wedding date. As they rolled him off of the airplane in Maui via an aisle chair, approaching his powerchair on the tarmac of paradise in March, he immediately noticed a glaring omission: The goal-post joystick knob that he needed to drive his powerchair was gone. The difference between independence and dependence on the trip of a lifetime came down to a formed piece of plastic that fit in a shirt pocket, that cost less than a couple of Starbuck coffees to get it to the user within 48 hours, restoring his ability to stroll the walks of Kaanapali Beach with his wife for the following 11 days.

Indeed, some stories tell more cinematic than others, but there’s no difference among them, where the woman who can’t use her powerchair in her house because the joystick cable broke by catching on a doorknob isn’t any less impacted by not having a vital wheelchair component than the young lady set to march in the Rose Parade, who’s puppy got a hold of her charger cord, preventing her from charging her powerchair days before the big event. When life is on hold, there’s no hierarchy, just need. Like loosing the key to one’s house, suddenly not having among the most common wheelchair components can strip one of the aspects of life needed the most.

Sometimes I pause for a moment in our shipping department, watching boxes of many shapes and sizes flowing down they conveyor line, knowing that other wheelchair manufacturers serve similar needs, where the cumulative stories are endless, where I wish I could follow each package out the door, to where somewhere in transit, the seemingly mundane parts in boxes transform into invaluable keys that open lives.

Playing The Wheelchair Waiting Game

Here we are racing toward fall, the time of the year when the mobility industry debuts many of the new products for the coming year. For some, this is an exciting time, getting a glimpse of what, ideally, is another step in the evolution of mobility products. However, others view this time of year with great skepticism, unconvinced by any new products, unwilling to venture into so-called unproven realms. Indeed, the consumer debate between old and new is clear: Is a new mobility product something to obtain, delivering increased liberation, or should it be avoided, too much of a risk, possibly compromising one’s mobility with unforeseen issues?

The intent of new products is basic, to provide advantages over existing products. Maybe a new product performs better than previous models? Maybe a new product offers comfort beyond competing models? Maybe a new product offers a more cost-effective package than others? Or, maybe a new product offers all of these advantages over current models, with a cool new aesthetic added, as well. Who wouldn’t want a better performing, more comfortable, less expensive, sharper looking mobility product?

Still, with these many advances may come unknowns. Was the new product adequately tested prior to release to prove out any “bugs?” Is there appropriate manufacturer and dealer support for the new product? And, will the new product interface with aftermarket technology, such as seating, vehicle securement systems, and so on? Most certainly one wouldn’t want to place one’s mobility in an unproven product, with questionable support, and poor integration toward existing technology.

The question then becomes, do the potential rewards of purchasing a newly-introduced mobility product outweigh the potential risks of owning a product with an unknown track record?

To answer this question, one must begin by considering the nature of new products. Rarely is a new product entirely new, as they are usually an evolution of technology, building upon the proven and familiar. Specifically in the mobility market, electronics, for example, have a decades-old lineage, where the latest-and-greatest powerchair or scooter controllers aren’t of a technology that is entirely a technological shift or introduction, but rather an improvement and expansion of existing technology (similar to the evolution of personal computers, where we’ve seen a stepping-stone approach toward improvements, ensuring reliability while still consistently advancing technology). The unknowns, therefore, of new technology may not be as profound as one might believe, containing improvements on existing technology to offer both enhanced performance and reliability.

Similarly, a new model doesn’t usually mean unknown product support, and, as a new model, may actually promise more reliability and better support than prior models. Responsible manufacturers, learn and grow over time, improving processes and skills; in this way, a new model may have more knowledge and talent designed into it, ensuring that any enhancements fostered by previous models are automatically placed into new products – put simply, new products often begin where prior products left off, fostering the best of the best.

With some research and understanding, then, the perceived risks of purchasing a new model may not be a risk at all. In fact, purchasing newly-introduced product may prove more sound than remaining with one’s favorite product, making a great product genre even greater — which is the foremost reason one should purchase a new product, to obtain enhanced levels of mobility beyond the present.

Ultimately, there are few areas of life that are more important than one’s mobility. It is true that there is a sense of security in one’s time-proven mobility product. Nevertheless, with life-enhancing technology always evolving, one shouldn’t let the known mobility of today prevent the pursuit of newly-enhanced mobility tomorrow.

Crazy Talk

When I was six years old, I told my great-grandmother that, more than anything, I wanted new powerchair.

“That’s crazy talk,” she said, standing up from the couch where we both sat, pointing her finger at me. “A little boy should want a bike, not a wheelchair – you shouldn’t want something that you need like a wheelchair.”

While my great-grandmother’s frankness may have been well-meant, it certainly wasn’t accurate in my case, where a new powerchair was number one on my list, ahead of a bike or a room full of toys. What I knew even at that young age was that a new powerchair meant liberation, where improved mobility would take me beyond the present physical limitations of being all but housebound. For me, at that moment, a new powerchair certainly promised the freedom to go outside, away from Great-Granny’s old-world lectures.

As Great-Granny and my parents learned, when it came to my getting a new wheelchair, I was anything but patient, where I tossed and turned at night while waiting the three or four months that it took in those days to get a new powerchair. Time crept by, where I couldn’t think about anything else besides getting my new wheelchair. In school, I’d look out the window at a grassy hill, imagining my new powerchair taking me to the top. At home, I studied the brochure of my forthcoming wheelchair night after night till the pages were crumpled and torn from so much handling. And, during all times in-between, all I thought of was my new wheelchair, envisioning how it would handle in every environment I entered. After all, I wasn’t just getting a new wheelchair; I was hopefully getting a new way of life.

And, I was never disappointed. I remember getting my first powerchair, it taking me across the room like a magic carpet ride. I remember getting my second powerchair that had larger batteries than the first, so that I could stay outside playing longer after school. And, I remember getting my third, fourth, and fifth powerchairs, where painted colors, high-speed motors, and contoured seating propelled me ever farther. With each evolution of technology, each new wheelchair, my life changed, where I could go places previously inaccessible, where I could better interact with my peers in such ways as keeping up with them on their bikes, where the silver-on-black racing stripes and fast speeds made me feel more like a hot-rodder than the only disabled kid in my school. New wheelchairs weren’t simply part of life-long disability, they were tools of inspiration.

Today, I’m touched when a consumer asks me to track the order of his or her new wheelchair, wanting to know when it’s built, when it will ship, when it will arrive at the provider – that is, when it will take him or her across the room like a magic carpet ride. I can feel users’ excitement – I live the excitement – as I, too, can’t wait to see where their new wheelchairs take them.

Motocross

It’s early Sunday morning, and my buddy, Bryan, and I are driving due north, out of Pennsylvania, and into New York, heading for the motocross national races. I’ve never been in this part of New York, and the still-green, late summer foliage along this country highway reminds me of the California foothills in the spring, which turn wheat brown by this time of year. The sky is translucent blue, a striking contrast to the pouring Northeast rains of yesterday. I’m no expert, but I suspect this is good motocross weather – sun without dust.

As we get within a mile of the race track – transformed grazing land in the seeming middle of nowhere – there’s a policeman directing bumper-to-bumper traffic on the two-lane straightaway. Bryan rolls down the window, and asks the cop for handicapped parking. But, the cop says there isn’t any, and I suggest to Bryan that we keep driving to the next cop that I see at another entrance, a ways down the road. My never-take-no-for-an-answer policy pays off, and the second cop steers us toward parking in Pit Row, among the diesels that haul the race teams and their gear.

Bryan and I unload from my van, and head up toward the track, a bulldozed haven for motocross racers and spectators alike. The size of the venue is awesome, with herds of vendors and stampedes of fans making nature all but obsolete – a traveling carnival at its best, a metropolis constructed overnight.

I’m wide-eyed, both at the grandness of the event and from the excitement of witnessing the sport in person. When you watch motocross racing on television, you see guys on motorcycles riding through dirt, throwing in a jump here and there, and round and round they go. But, in person, the scale is awe-inspiring, with riders defying gravity, roaring at 60mph up and down hills as steep as the most extreme ski slopes, flying several stories in the air, and bathing in eye-blinding mud – it’s like a real life video game. And, for me, the video game analogy plays itself, too, with my powerchair churning in mud as we make our way up the pedestrian paths intertwined with the track, strategically choosing my course amidst the crowd.

My chair’s in good shape, though. I have the widest possible knobbies on the back of my chair, and the biggest balloon casters on the front – a powerchair that I especially configured to run through muck and mire. Every once in a while, I encounter a deep patch of mud, and my wheels spin, but just when I’m about to ask Bryan for a push or tug, I make it through. I am, however, concerned that if the mud doesn’t dry up and clear from my tires by the end of the day, my wife will have my head for tracking mud into our van and house. Nevertheless, as I weave through the increasing crowd of late-morning motocross fans, noting an exceptional mix of busty, scantily-clad motocross babes crossing my sight – eye-to-chest level – I’m less concerned about my muddy tires or homeward fait. Motocross babes are the best, I tell Bryan as I ogle the countless hot chicks on the arms of their bleached-haired, baggy-pants boyfriends.

Bryan and I watch a few amateur races from the infield, then decide to scope out a better spot for the heats of professional racers coming up next. We wind our way back through the muddy paths, past the T-shirt stands and tobacco tents, ending up by the starting line. As the pro’s line up, revving their engines, I scan the 5-person-thick crowd lining the course, and spot amongst them a fence post with handicapped sign and arrow pointing down a narrow, gravel path. I motion for Bryan to follow my lead over the roar of the race bikes, and we end up in a secured area with bleachers, overlooking a prime part of the course, where the racers fly down the hill, straight toward us, bank a turn, jump a double, hit the whoopies, and blast back up the hill. Maybe a wheelchair isn’t always the best seat, but in these instances, it is, guaranteeing a front-row spot. If I could throw a rock, I could probably hit the racers in their helmets as they race by.

With an open throttle and pop of the clutch, the pros shoot out of the starting gate, and crank around the first turn. Just then, I notice two powerchairs and a titanium ultralight chair at the other end of the bleachers – all of the wheelchairs are shiny and spotless, void of the mud and mire that coats my chair. Somehow the other wheelers traveled the same terrain as me, but stayed clean. I look back to the track, and the pro’s are flying down the hill like a swarm of bees, traveling seemingly twice as fast as the previous amateurs who rode the same course, with the same motorcycle technology. I look back at the spotless wheelchairs, then down at my mud-baked tires, then back to the pro’s flying the course – and think, it must be true that it’s not what you ride, but how you ride it.

Logs

“I like riding on your lap to the bus,” my daughter says as we make our usual morning path to the school bus stop, where I see her off to school, then make my way to work.

“You don’t know how good you have it,” I say, peering over her right shoulder, driving my powerchair down the sidewalk.

“I know – the other kids have to walk to the bust stop,” she says.

“No, I mean, you don’t know how good you have it compared to when I was a kid,” I say.

“How?” she asks.

“When I was a kid, not only did everyone walk to the bus stop, but it was four miles away, and it was worse for me because not only couldn’t I walk, but I didn’t have a wheelchair, either,” I say.

“That’s no true – you had a wheelchair,” she says.

“No, I didn’t,” I say.

“Then how’d you get around?” she asks.

“A log,” I say.

“What do you mean, a log?” she asks.

“My parents were poor and mean, and sat me on a log, telling me to learn to push it,” I say.

“No – that’s not true,” she says.

“Imagine trying to push a log for four miles to the bus stop each morning, up hill,” I say.

“I’ve seen pictures of you as a little boy, and you had a little wheelchair,” she says.

“…But, coming home was easy because it was all downhill – I just had to stay atop the log as it rolled,” I say.

“You’re the most teasing dad ever,” she says.

“You call it teasing, but I’m telling you, it’s absolutely true,” I say, pulling up to the bus stop.

Living Bold

I like about profound physical disability what others hate about it: You ultimately can’t hide it. Clear physical disability demands living in your truest sense, as you physically are, undeniable to the world. You can buy a lot of disguises – fancy clothing, enhancing cosmetics, and other surface masks – but none vale a wheelchair, muscle spasms, or impaired speech. And, there’s liberation and empowerment to embracing such a simple rule, knowing that no matter how you dress or what airs you strives to present, you are still as you are, with your true cards on the table for all to recognize. I say that you can be better because of it – your relationships can be better because of it – where others take and leave you truly as you are, undeceived by fancy clothing, enhancing cosmetics, and other surface masks. I say, that’s living with disability – that’s living bold.