Foul Mouth Kids

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By Mark E. Smith

In my neighborhood, none of us kids took anything from anyone. It was where the two sides of the tracks intersected – upper- and lower-class kids intertwined. Neither had much parental guidance. You just never knew where anyone’s parents were. Some were drinking in dark bars in the afternoon, others working in the city in high-rises till all hours, and some straddling both lives. Because of this, in my neighborhood, most kids had free reign from parents, and when out wondering our suburban streets, you didn’t take gruff from anyone.

Being the kid who used a wheelchair didn’t make me exempt from any of it – the dysfunctional home, taking jabs from the other kids or dishing it back. Mostly, though, I kept to myself after school. At 14, I had a lot going on teaching myself to be independent with cerebral palsy. I was three or four years into my mission of being as independent as possible and I saw a lot of progress. My main self-therapy was pushing my manual wheelchair for two hours or so after school every day. The repetitive motion of pushing my manual wheelchair was a sound exercise in strength and coordination. But, I was dismal at it. I’d started a few years earlier barely able to propel across our living room, and by this point, I could make it around our neighborhood. Yet, there was no grace in it.

I pushed painfully slowly. Really, it wasn’t even pushing – pushing implies consistent movement. For me, it was push, roll feet or inches, regather my flailing, spastic limbs and then push again. All that mattered, though, was that I was seeing progress.

As I went out each day, I purposely stayed on quiet streets. I needed to do what I had to do and didn’t want to be bothered. Besides, I never knew if anyone would understand why I was doing what I was doing, and I didn’t want to have to answer any questions. When I was eight, I was in a grocery store trying to buy a pack of gum and an elderly woman made a huge scene that crippled people like me shouldn’t be out alone in public. That experience shook me a bit, and I suppose it made me want to avoid such a scene while out pushing my manual wheelchair, self-aware of how awkward I looked. So, the side streets were my sanctuary, where I could push and progress at my own pace, in solitude.

There was a hill leading to our driveway. It wasn’t the steepest of hill, but long – maybe two blocks – lined by vacant land on each side. It took me a good year to get to where I could push up that hill myself, but I got to where I could do it, although it was forever a challenge, inch by inch.

One afternoon while halfway up the hill, a group of neighborhood kids came up from behind me.

“Need help?” one of them asked as they all surrounded me.

“Do I look like it?” I asked with an attitude, pushing toward a boy standing in my path.

“Yeah,” they all replied at once, laughing.

“Screw you!” I shouted, giving my chair another push, wanting to be left alone.

“Screw you!” they shouted back as they walked in front of me.

“You’ll never make it up the hill, retard,” one kid yelled.

I pushed even harder.

“And I’m going to kick your ass in school tomorrow!” I yelled.

Of course I made it up the hill, and I didn’t kick the kid’s ass in school the next day. I guess achieving one of my two goals wasn’t bad considering the circumstances.

Full-Court Throw

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By Mark E. Smith

Imagine your basketball team is tied at the ending of a game, seconds from the final buzzer. You’re standing at the opposite end of the court, and the ball comes to you. What do you do with it?

Most players dribble, hold or pass the ball as the buzzer times out. After all, what can be accomplished at the buzzer, an entire court away from the basket?

My answer every time in life is to take a leap of faith in our talent, luck and what’s meant to be, and throw the ball as high and hard as we can across the entire court, toward the basket – because there’s a chance it will go in. When we have nothing to lose and everything to gain, go for the longshot every time.

I was writing an article a few years ago on pediatric wheelchair use, and I called the mother of a little girl in Southern California for an interview. We’d met a year or so earlier at an event I attended in L.A. on business, and we were linked through Facebook.

When I called her for the interview, I only had one thing on my mind – the interview. However, she was so engaging and wonderful to talk with. We ended up speaking the next eve, then the next, then the next. I quickly realized this woman was amazing, having it all: outer beauty, humor, intellect, compassion, you name it.

But, by all accounts, she was out of my league, though. If anyone objectively looked at the reality of the situation, I was at the wrong end of the basketball court to have any chance of making a basket. I was a single dad with cerebral palsy living in rural Pennsylvania. Why would a gorgeous high-end optician and artist living in San Diego even entertain me as a potential love interest?

However, as I fell for her, I turned to the one trait that’s always got me to new heights in my life: I went for the seemingly impossible longshot. I put my heart out there with nothing to lose and everything to gain. You might say I threw the longest basket in history – from Pennsylvania to California – and it miraculously swooshed the net. Yet, while making a full-court basket only lasts for one game, my now wife and our marriage is for a lifetime.

Life is going to put us at the end of the court from time to time. When we’re blessed, a ball comes our way. And, when the ball comes to us, we can pass or we can trust in ourselves and fate, throwing the ball as high and hard as we can toward the basket. No, it won’t go in every time – it hasn’t for me. But, when it does, it changes our lives forever.

The Life and Death of Humor

To John: After writing the essay, I had to have an illustrator colleague bring my image to life - or death!  -Mark
To John: After writing the essay, I had to have an illustrator colleague bring my image to life – or death! -Mark

By Mark E. Smith

Among my all-time favorite people is Callahan – John Callahan. He’s been dead now for going on 6 years, and I’m sure there’s still a hilarious punchline to that waiting to be told… maybe a cartoon of two grave diggers with shovels standing over a grave dug in the silhouette of a wheelchair?

See, Callahan was abused as a child, an alcoholic by his teens, and a high-level quadriplegic by 21 from a drunk-driving accident. There’s nothing funny about any of that – except to Callahan and his millions of readers who understood through his twisted but totally candid cartoons that humor can be among the truest healing forces. I mean, his most famous cartoon was where cowboys on horses in the desert surrounded an empty wheelchair, noting, “Don’t worry, he won’t get far on foot,” exemplifies where tragedy evolved into humor in Callahan’s life. Many were mortified by the tasteless cartoon; but for those of us who live with disability, it was hilarious.

I’ve seen it so many times, where our pain, when addressed with humor, can become joy. And, making that transition is life-changing. If you can genuinely laugh at something, you’ve survived it. You’d be hard pressed to find a successful comedian who hasn’t experienced trauma, but through that has somehow found humor.

For me, humor has always kept me from the dark sides of life. If you ask me about cigarette smoking, I’ll tell you to go for it. After all, my mother smoked throughout her pregnancy with me, and I was born just fine, right? …The whole cerebral palsy thing was just an uncanny coincidence.

I likewise grew up with alcoholic parents, and they died from it at young ages. Along the way, I spent time accompanying my drunk mom to Alcoholics Anonymous meetings as a teenager – because when you’re 16, with cerebral palsy, it’s the one place your slurred speech and uncoordinated body gestures fit in. At times, I wanted to truly participate: “I’m Mark, and I’m not an alcoholic, but I sound like one and sometimes I pee my pants – where’s my AA coin!”

No, there was nothing funny about being born with cerebral palsy or having drunks for parents – it was all tough stuff. Yet, I survived it all, and I can’t help but see humor in most of it now. Humor, in so many ways, is the power to rise above pain, to take back our joy, our spirit.

As they say, that which does not kill us – or does! – only makes for a hilarious punchline. And, as Callahan taught us all so well with his work, if you’re not at the point yet where you can laugh at your own pain, you don’t need to worry – there are plenty of us who will do it for you!

Sunsets and Rooftops

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By Mark E. Smith

Sometimes our pasts, presents and futures collide all at once – and for a moment we see how it all makes sense.

I’m at Perch, an insanely hidden but outrageously hip rooftop patio bar and restaurant atop a skyscraper, with a 360-degree view of Los Angeles. It’s like walking onto a terrace party on Manhattan’s upper east side, only I don’t know anyone. But, they all are fashionable and laid back, sitting in upscale patio chairs around fire pits – 65 degrees in L.A. is cold, even for me, an east-coaster.

I’m with my fiancee, my soon-to-be step daughter, and my fiancee’s high-school friend, Deb. Deb is so down to earth and grounded that you’d never know she’s an exec with AE Sports, the video game giant, and her husband is some sort of brand manager for Aston Martin in Beverly Hills. I ask Deb if she knows of Magnus Walker, but she doesn’t, so I just tell her he’s a crazy Porsche guy in L.A.

The L.A. skyline at sunset is stunning. As spectacular as the ridges of the Grand Canyon, the surrounding skyscrapers create reflections and shadows that make it all appear beyond man-made. I just take it all in, and wonder amidst the beauty of it all – the rooftop, the sunset, the view, L.A., my fiancee – how’d a guy like me ends up here, at this place, this moment, this point in life where I feel blessed in so many ways?

Earlier today, I worked a big consumer trade show. While returning from lunch, I ran into my ex-girlfriend who I hadn’t seen in 24 years. We were so young when we dated, and when we broke up, I was crushed. There’s fragility to a young heart, and I just couldn’t make sense of the breakup. But, then I met who would become my wife, then we had my daughter, grew my career, moved cross country, built a very prosperous life, got divorced, raised my daughter on my own and just strove to live right by all. That first breakup turned into just good memories from my youth.

As I chatted with my ex-girlfriend, it was a very touching moment, no weirdness or awkwardness. Through the wonders of Facebook, we’d both known where each had traveled in life, and we both were genuinely happy for each other. It was sort of like just smiling at how far we’d both come. And, after a hug and a picture, we parted ways, she going to catch a flight home to her husband and daughter, and me, back to my company’s booth.

And, so as I sit on this L.A. rooftop, I look out at the sunset over the Pacific and flash back over those 24 years – my beloved daughter having turned 18 just a few days ago – and the question of how I ended up in this breathtaking spot, at this exact time, answers itself: despite the twists and turns, life always leads us to where we’re supposed to be.

A Power Chair, a Warehouse, and Me

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By Mark E. Smith

How fortunate are we when life hands us an unyielding passion? And, sometimes life-sustaining passions stem from the most unlikely of sources. In fact, they almost always do.

At the age of five or so, with severe cerebral palsy, I was blessed to have an occupational therapist place me in a power chair, and I went from a world of confinement to one of liberation at the touch of a button. And, I haven’t let off of the joystick since.

Thirty nine years later, I remain not just passionate about power chairs, but obsessed. I know the empowerment they bring, and I live it. My career revolves around power chairs; my personal life revolves around power chairs; and my friends revolve around power chairs.

But, my power chairs aside, here’s what’s amazing about having such a passion: no one can take it away from you because it’s your intrinsic life force. Lot’s of people like what they do. However, a passion is what you love to do, what you’re compelled to do – it’s who you are – and nothing can change that.

So, at 44, after 39 years of using a power chair – despite all of my life’s accomplishments – there’s still that one, ultimate thrill for me: when I have an awesome new power chair, as was the case this past week, where I immediately become that five-year-old again (a secret warehouse as my personal race track), where I feel an awe-inspiring sense of liberation and empowerment that wipes away all of the complexities of life – and I’m just living my passion to the core.

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Prize Fighting

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Mark E. Smith

As I lie on my bed in the surrounding silence, I should be angry, frustrated, maybe even panicked. I just literally beat the hell out of myself – scraped, bruised, exhausted – in three failed attempts to simply use the commode.

See, as one with cerebral palsy, in order to use the commode, I have to go from my power chair to my bed to my manual chair to the bathroom to the commode, keeping my balance on the commode, then back to my manual chair to my bed to my power chair. On my best days, it takes 20 minutes; on an average day, 40 minutes; and, on this day, after one and a half hours, I’ve not accomplished getting on the commode. I’ve tried three times, my uncooperative body struggling with every transfer, slamming me off of the commode, against walls, on the floor over and over.

Yet, as I lie here on my bed, I’m not angry, frustrated or panicked. While physically I’m uncomfortable, to say the least, I’m genuinely happy, full of gratitude. As poorly-functioning as this body is, it always gets me through. It’s the body of a prize fighter. It can get knocked down, bloodied, counted out by others, but it never quits and always gets back up.

For the moment, like a jaw-stung boxer dizzied on the canvas, I lie here with all things good streaming across my closed eyes. I think about the upcoming Christmas holiday – I’ve done no shopping yet, but I’m excited to give very meaningful gifts from a list I’ve been covertly gathering from those I love. I think about my daughter’s pending college applications to NYU and Cornell and the University of Pittsburgh, pondering if any of those are better choices than her seeded spot at George Mason University in the Washington D.C. area? I think about having my fiancee and soon-to-be step daughter back from their native west coast in about a week, joyed to be spending another holiday season together as a family on the appropriately wintry east coast. And, I think of the myriad of exciting aspects going on with my career. There’s so much gratitude in my life that I’m even thankful for the predicament I’m in – that is, having to simply use the bathroom, but knocking the hell out of myself in the process, seemingly unable to accomplish such an everyday task.

But, prize fighters never stay down long, and I’m about to sit up, struggle to transfer back into my manual chair, make my way to the bathroom and try to make the small but courageous leap from my manual chair to the commode once again. If I make it this time, fantastic. If my body fails to cooperate further, and I crash from wall to wall to the floor, having to start all over again, that’s great, too.

See, here’s the beauty of adversity: it’s not an easy route to success, but it is a proven route to success. Adversity makes us that promise – that is, as long as we’re willing to embrace it and address with gratitude and perseverance toward whatever it throws our way, we will ultimately achieve victory.

In this way, I’ve only gone three rounds – and I’ve got a lot more in me. Ring the bell. I’m ready.

Kevin

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By Mark E. Smith

As he spun on the salon chair, his joy was contagious. No one else his age, 20s, would dare spin on the chair, hands thrust in the air, yelling, “Woohoo!” but he did. Most of us would be too self conscious, too restricted by social norms. But, his authenticity allowed him to do what we’d all love to do – that is, follow our unbridled enthusiasm. Yes, he was different from the rest of us, and we were all a little jealous.

He stopped spinning for a moment, looked at my 17-year-old daughter and waived, flashing a big grin.

“I’m Kevin,” he said.

“Hi, Kevin,” my daughter replied from her seat along the front window. “I’m Emily.”

“Emily, watch…,” he replied, spinning some more, hands in the air.

He spun, and he spun, and he spun until his mother and father pulled him from the chair.

“Bye, Emily – I’ll call you,” he said, putting his hand to his ear in a telephone gesture, and we all giggled at how adorably unabashed he was, moving toward the door.

As he left, I glanced at my daughter and soon there was a knock on the window behind us. We looked, and Keven blew Emily a big kiss, promptly dragged away, smiling, by his mom.

I was immediately struck with the thought that whoever defines intellectual disabilities has it all wrong. I realized that there were a lot of us with intellectual disabilities in the salon that eve, but Kevin wasn’t one. He followed his enthusiasm, lived with an uninhibited heart and wasn’t afraid to extend love to others. Few of us could say the same.