Rock-Starring Into Oblivion

By Mark E. Smith

Indeed, I am on the cover of the July 2012 issue of New Mobility, as the author of the magazine’s feature story, which is an all-night, true-life tale of me in Vegas (and, yes, it involves booze, chicks, and a bowling shirt – that is, the cerebral palsy version of Charlie Sheen, minus bi-polar disorder and cocain).

For me, making the cover of New Mobility as just … well …me, is among the coolest accomplishment in my career – and very humbling. Appearing in mainstream magazines – usually skewed toward a heroic, inspirational persona – isn’t my gig. Who I really am is lost in that. But, to make the cover of New Mobility not because I’m an inspirational figure or because I’m interviewed or because I’m representing anything, but because I’m just me on a tangent in Vegas is pretty darn cool, the ultimate compliment from those who truly matter to me – my peers and readership. (And, it’s an impressive feat for a man of such indiscernible skill and as void of charm as me, where somehow my just hanging out in Vegas and writing about it qualifies as a partial way to make a living – I’m like the Kardashians, but with even less talent, if that’s possible.)

However, while the cover is already framed and hung with pride on a wall among other such achievements in my home, it ultimately represents a larger truth: Beyond the lasting positive impacts we’ve had on others, what we accomplished yesterday does not dictate our potential for today. There’s no riding what we did yesterday. A magazine cover is great, but it’s yesterday’s news – my sleeves remain rolled-up and working, making the most of today. After all, today is all we really have to work with. Life’s like peddling a bike – the minute you stop putting effort into it, you stop.

Think about how that concept applies to every part of our lives. So many people get caught up in yesterday that they completely waste today, using excuses from the past not to make the most of the present. I hit my sales target for the month, so I can coast for a bit. My relationship has been good, so I don’t need to do that little something extra for my partner. I accomplished that awesome feat, so surely I’ll forever command respect.

No, yesterday is gone, and our only true merit is based on what we are accomplishing today. Just because you hit your sales target doesn’t mean you stop there. Just because your relationship has been good doesn’t mean that you shouldn’t make things even better today. Just because you had major accomplishments doesn’t mean that you should quit striving.

If we’re going to be successful, we can’t look at life as riding waves, where we just try to coast from one periodic success to another. Rather, if we’re going to be successful, we must look at life as a never-ending mountain to climb, a daily work ethic toward new growth in all areas.

Sure, it’s nice to hang a new memento of my success on the wall – rock-starring it on the cover of New Mobility, looking every bit the absurd part – but it’s all just memories and decoration in the end. My only value is in my current project, whatever it may be, where I’m hopefully making a difference in the lives of others.

As you read the piece, I hope you’ll recognize that any sort of celebrity is really an illusion, where such stints as the glitz and glam of me rock-starring is cool, but it’s not where the true value in life is. Rather, the real message in the piece – as in life – is that it isn’t who we are or what we have accomplished that adds value to our lives, but it’s our capacity to embrace others, from all backgrounds, that truly makes us each a superstar from the inside out, everyone equally deserving of gracing a magazine cover.

Read “Freewheeling in Vegas” online here.


Changing Like the Rising Sun


By Mark E. Smith

My daughter looks so cozy, curled up, under the covers on the sofa bed this morning as the sun rises over the Vegas strip, the full-wall of window glass framing her. She hated the thought of the sofa bed at first, preferring her own bedroom, but now she loves it – it is a tiny Vegas high-rise condo that she agreed after all is perfect for us, just the two of us, the way it’s been for some time. This is a week-long getaway, where I can visit my company’s western manufacturing facility and give a talk at the University of Nevada (UNLV), all while my daughter and I pursue some writing and photography in a town that’s a never-ending flow of story lines and imagery – and a sofa bed turns out to be just fine by her as a place to dream.

Glancing at my own bed, I wonder if I should make it or leave it for Housekeeping to change, but I can’t remember if it’s laundry day? I’ll wait till my daughter awakes, and discuss it with her – she knows the condo’s schedule better than I do, as she pays attention to such details. For now, I’ll sit quietly, watching the Vegas sun rise over my daughter, waiting for her to awake with a smile and a stretch, as she always does, and we’ll talk about whether to cook breakfast or walk to Starbucks or Denny’s, and she’ll tell me whether it’s laundry day.

After this quick trip to the Vegas condo, we’ll be back in Pennsylvania, on our usual schedules, celebrating our birthday that’s only three weeks away. Hers is March 3, and mine is March 2, so beyond the separation of midnight, it’s kind of a shared date, so we just call it our birthday. She’s turning 15, me, 41.

I always said that the joy of parenting is in seeing your child evolve and grow, where there’s no ideal stage, but that the entire process is awe-inspiring. However, as I sit here, I realize that I just want to stop time after all. She’s perfect the way she is – ideals, flaws, no matter – she is perfect, and I just want time to stop, freeze this moment forever, much as she does with her photography.

In three years, she’ll be off to college, and our relationship will evolve in yet more ways. Of course, I want her to move out, attend an ivy-league school, maybe in the northeast, maybe out west, but far from me – she needs to fly on her own, to soar on her own. And, I, too, will be on my own – an empty-nester at such a seemingly young age, likely lost for a while. Maybe I’ll have a live-in girlfriend, or it’ll just be me and the dogs. But, no matter what, I’ll still be lost for a while – and it will be OK. It will all be OK.

And, as I sit here watching my daughter sleep, I can’t help but already miss having her as the everyday center of my life. I was the first to hold her when she was born. As a toddler, she spent more time on my lap than walking. We moved across the country together, sitting side-by-side on the airplane when she was three. I still take her to school each morning. My weeknights and weekends are filled with her band and drama rehearsals. And, the big comfy chair that she sits in while talking to me at night in my master bedroom remains her safe place to let it all out when needed. Yet, as I sit here watching her sleep as the sun rises over Vegas, I know it’s all changing – it’s ever-changing, her, me, life, all changing like the rising sun.

I really should wake her up to talk about breakfast, laundry, and our day’s events. But, I can’t. For a moment, at least, I can just sit here, admire her perfection, and watch the sun rise. Indeed, time can stand still – if only for a precious moment.

Hot Mess

By Mark E. Smith

So, I’m drinking at Tao in Las Vegas, parked in my power chair sideways against the bar, so I can sip my vodka and Red Bull through a straw. Whoopi Goldberg and Rod Stewart are with me – no, not the real Whoopi and Rod, but impersonators.

Prior to several hours ago, none of us knew each other. My plan was to go to Vegas alone as an adventure, but then my buddy was to meet me there. However, as the world is meant to be I suppose, my buddy opted not to meet me after all, leaving me on my own in Vegas for four days. So, after checking into my hotel, I headed to Tao – a top Vegas club that’s hard to get into unless you’re a hot chick, a dude with a hot chick, or a celeb – and I was ushered right in, skirting the line of smoking hot chicks and their steroid-strutting dudes, not even a cover charge for me.

What I’ve learned is that as a guy with a disability, using a power chair, in a suit and tie, with a big smile and gregarious personality, I can go into virtually any scene and immediately find great conversation – or have it find me. A lone guy at a bar is typically seen as creepy, where if he says hi to people walking by, they’re probably going to keep on walking – and, they certainly won’t approach him. However, I find that the novelty of my disability and inherently nonthreatening nature – along with a super-outgoing personality – really attracts people, where I can very quickly build rapport, becoming immediately engaged in great conversations, making fast friends, where even if I just park somewhere, someone will ultimately come up and start a conversation. In these ways, I get by very well, able to get into any club, quickly fitting into the scene. So, I end up in Tao within hours of landing in Vegas, surrounded by barely-dressed super-model type chicks and buffed bozos – rock-starring it on my own, one might say.

Now, vodka and Red Bull isn’t my drink of choice – that would be Southern Comfort, straight, by the double-shot. However, unbeknown to me when booking the trip, I picked spring break week, when all of the mid- and southwest college kids flock to Vegas. And, in a brilliant – and deviant – marketing ploy, Red Bull is the official sponsor, where at virtually any bar or club for the week, one can get a house vodka and Red Bull mixer for $6, whereas a double shot of Southern Comfort averages $15, so I opted to drink on the cheap (plus, being alone and looking to meet people, I had no interest in getting hammered drunk, but remaining sober while socially sipping a single drink much of the night).

So, I’m sipping my cheap drink at Tao, checking out the countless chicks who, on average, must be 19 years younger than me, when Whoopi Goldberg walks up and joins me at the bar. I immediately comment that she’s the striking image of Oprah, and she laughs – and we get to chatting. It turns out that she is, of course, Berndottea, a Whoopi Goldberg impersonator, complete with SAG card and all. However, the drunk college kids don’t know any better, so I’m in theory sitting at the bar with Whoopi Goldberg, with everyone wanting to take pictures with Whoopi.

And, then in walks Rod Stewart. No, not the real Rod Stewart, but Clyde, a chef who’s been in Vegas for seven months, and just so happens to be an exact image of a younger Rod Stewart, ’80s vintage, dressing the part and teasing his hair, no less. He immediately joins Bernodettae and me, likely because we’re a fitting lot, a bit of character and age to us compared to the young, hot bodies who fill the club with alcohol-fueled hormones running wild.

Sipping my vodka and Red Bull, I swap life stories with Bernodettae and Clyde, who are among the sincerest, kindest folks I’ve met, and we’re constantly interrupted by party-seekers who only see Whoopi, Rod, and a guy in a wheelchair at the bar – a spectacle that draws a non-stop crowd.

With the night in full swing, I end up with a drunk chick next to me, who knocks my drink off of the bar, spilling it all over my power chair, and she immediately apologizes, telling me that she’ll make it up to me. With all watching, she kisses me on the cheek, takes my hand, and gently slides it up her top, placing it on her bare breast. This, however, is little consolation to me, as having to clean vodka and Red Bull out of every crack of my power chair and losing my $6 drink is no price to pay to feel a chick’s boob – been there, done that, don’t care, over it – so while the surrealism of having my hand up a chick’s top with Whoopie Goldberg and Rod Stewart watching me isn’t lost in the moment, I’m really just perturbed that this drunk chick spilled my drink all over my power chair. Boobs are just boobs – they’re everywhere. It’s my custom-finished, carbon fiber power chair that I care about!

With my hand still on her breast, I look up and realize that she’s wearing a tiara that says, Bachelorette. I pull my hand out of her top, and ask loudly, “Can I get your fiancé’s phone number?”

“Why?” she asks.

“I want to tell him not to marry a hot mess like you,” I say.

Without hesitation or even a blink, she hauls off and slaps me across the face – hard. And, people grab her, pulling her into the crowd, away from me.

I turn to the bartender like, Did you see that?, and the bartender has already served me up a fresh drink, on the house.

Rod Stewart walks around and puts his arm around me.

“You know, Mark,” Rod says, “I’ve put my hands on women’s breasts and been slapped, but never have I had a woman place my hand on her own breast, then slap me for it. You’re a champ in my book.”

“Welcome to Vegas, Marko!” Whoopi says, holding up her drink.

Where It All Leads

By Mark E. Smith

With my 40th birthday here, I wished to note it with an act emblematic of the life I’ve lived – overcoming some personal challenge, and hoping to meet others and grow in the process.

Friends suggested skydiving, which is strikingly cliché, and actually void of any real risk. When it comes to tandem skydiving, your odds of dying I learned are 0.4 out of 100,000, whereas my riding my power wheelchair to work each day has my risk of dying many times higher, 2.5 out of every 100,000. Therefore, while most unknowingly see skydiving as a brave, risky feat, it’s actually a totally controlled, unrisky feat, far safer than simply crossing a street.

No, for my 40th birthday, I want real adventure, real risk on my own terms, so I’ve bought a plane ticket to Las Vegas, heading out by myself, cross country, to see where it all leads.

The first part of my journey is getting to Vegas. We’re in an odd time of post-ADA corporate disability rebellion it seems, where airlines, in particular, have been proving alarmingly disability-phobic. Over the past two years, we’ve heard discouraging stories of airlines refusing to fly single disabled passengers. In fact, two days before this writing, a young woman with muscular dystrophy, who uses a ventilator, was by all accounts illegally denied boarding a Delta flight home.

I fly often on business, but with colleagues, so this will be my first solo trip in quite some time (I always flew alone years ago based on necessity, never having an issue, but this recent trend toward disability discrimination by airlines has me curious as to my forthcoming solo flights). I know CFR 14, Part 382 that outlines federal guidelines for how airlines must treat passengers with disabilities, but gate agents, in their ignorance, don’t seem to follow federal regulations or acknowledge basic human dignity these days, so I’m curious to see what it’s like for a guy as severely disabled as me to fly alone during these times. Again, it’s easy for any of us to say it’s a piece of cake to fly with a companion. An acquaintance of mine is always boasting to others how easy it is to fly with a disability; yet, his wife or a caregiver is always with him – man-up and go it alone, and see how you’re treated, is what I always want to tell him. Therefore, that’s what I’m doing – manning-up and leaning into it – seeing what it’s truly like to travel alone with a severe disability in 2011. Do I think I’ll get kicked off of a flight like Johnie Tuitel, the motivational speaker with cerebral palsy similar to mine who made national headlines by being unjustly removed from a flight? I hope not – namely, because I’m extremely familiar with federal airline regulations and my airline’s policy, where I trust that I can cordially talk my way through any situation. However, I am curious to see what, if any, ignorance I encounter.

Of course, logistically, a lot else could go wrong during the trip. What if I get stranded at an airport based on weather? What if my power wheelchair gets damaged or breaks? What if any number of scenarios go wrong? Again, I fly all over the country with colleagues and there are no worries on such trips. But, now I’m a 40-year-old with severe cerebral palsy flying to Vegas alone – that’s an adventure, one where I’m placing myself in my sole confidence to get by no matter what.

Once I’m in Vegas, I’m pursuing an interesting tact – as a person first, and as a writer second. I’m meeting up with a lifelong friend, and the goal isn’t to know Vegas, but to get to know the people of Vegas, seeing where it all leads. We’ve both been to Vegas countless times – mostly on business – and the uniqueness of Vegas is that everyone is from somewhere else, all with an often amazing story – from the inspiring to the tragic. I’ve spent the last 22 years telling my story, and I want to hear others’ stories on a diverse, candid scale, the types of conversations you’ll typically only find in Vegas. Drinking, gambling, and strippers, don’t interest me – been there, done that, didn’t impress me. I want to know about the waitress working at the Denny’s on the Vegas Strip at 1:00am – what’s her story, what brought her to this point in her life?

The fact is, at 40, there’s absolutely nothing remarkable about me or my story – I’ve merely lived life potentials that everyone possesses – and I’m eager to hear how others have accessed their potential, or struggled to do so. I have no idea who we’ll meet, or where conversations will lead, but I hope realizations by all will be made in the process, that a common humanity runs among us regardless of who we are, where we come from, or the lives we live.

I’m getting on a plane headed for Vegas. Where it will lead is the mystery that is sure to create the adventure.