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.

Really Skilled at Sucking

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By Mark E. Smith

Imagine spending years running alone. Per your pace, you’ve gone from a 30-minute walk of a mile to running a 15-minute mile. That’s quite an accomplishment.

But, then, you get a running partner, and that running partner runs a 6-minute mile. What would you realize in this process?

For me, I’ve realized that this is my life and I’m really good at being really bad at much of what I do. I suck, and I’m proud of that fact. You can’t suck at as much as me without a lot of hard work and determination.

See, for years now, it’s been just my daughter and me in our home, where I live as independently as possible with cerebral palsy – and I’m pretty good at it, moving along at my own pace. A lot of it takes time and tenacity, but so be it. I’ve always looked at my independent living skills as the result, not the effort. I don’t care what I have to do as long as I can accomplish the task.

However, now I have a running superstar by my side – my beautiful fiancee – and it’s made me realize that I’m really good at being really bad. A task that takes me, say, 10 minutes on my own, takes one minute with her helping. And, for the most part, I’m secure and appreciative of her helping because I equally contribute to her needs in other ways.

Nevertheless, we’ve had an ongoing dialogue about how beyond my neanderthal stubbornness, she’s raised good points that just because I can accomplish a task doesn’t mean I do it the easiest way, that I often make things harder than needed, that just because I’ve used a haphazard technique for 20 years doesn’t make it necessarily the best approach.

Beyond me, her point is one that’s strikingly universal: Questioning how we do what we do can help us find better solutions, from our careers to parenting to everyday life. But, I have my point, too: It’s taken me a lot of years to get this good at doing independent living tasks really badly – that’s hard to give up when you’re so talented at sucking as I am!

Honoring Being Wanted

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By Mark E. Smith

I’ve just returned from my daughter’s first college visit. It was actually a bit more than a typical college visit that high school seniors do because she’s being recruited by the school based on her achievements. As a dad, I see aspects like a waived application fee, streamlined early application, early acceptance and a scholarship as all the reasons to go there – plus, it’s a great school in a great part of the country for internships and a subsequent career. However, there’s a more profound reason why my daughter is leaning heavily toward this particular school: she’s wanted.

So many people want; yet, in most circumstances, wanting isn’t emblematic of success. However, being wanted has everything to do with success. As I’ve told my daughter, anyone can want to go to any college and apply, hoping to get in. However, the ultimate success is in being sought out based on merit, where a college wants you.

The realized value of being wanted instead of simply wanting, applies to so much of life. Top executives never apply for jobs – they’re recruited. When we’re in the most fulfilling relationships, we’re desired by our partners. Among the greatest successes in life involve being wanted, not just wanting.

However, there’s a caveat to being wanted, one that I continue seeking to instill in my daughter. Being wanted has nothing to do with entitlement, but everything to do with unyielding dedication and responsibility. You earn being wanted by being extraordinarily dedicated, and then you honor being wanted by striving even more. In my daughter’s case, she’s being wanted by a college because she’s worked hard in high school, but now she must work even harder to honor the college’s recognition. The recruited executive can’t rest once he’s landed among the country’s top jobs, but must honor it by working even harder. And, in our relationships, we must always honor our spouses with love and attention, where desire is unwavering.

I’ve been fortunate to experience the privilege of being wanted via the writing portion of my career. I used to have to hustle and try to secure paid writing jobs. However, I’m fortunate that now editors come to me with writing assignments. However, tight deadlines and working late nights are par for the course — again, the privilege of being wanted must be honored with dedication or it won’t last. Being wanted means being unyielding in what you do.

Wanting is great, especially when there’s effort behind it to achieve a goal. However, being wanted is emblematic of ultimate success because it’s where dedication intrinsically leads our lives to new levels of potential and opportunity.

Pink Undies in the O.R.

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By Mark E. Smith

So, I’m laying stretched out on the surgical hospital bed in my neon-pink underwear and nothing else. And, I’m great with it. Muscular, with my trademark tattoo of the universal wheelchair symbol on my shoulder, I feel like a superhero. Cerebral Palsy Man here to save the day! But, the medical staff is here to save me – or at least figure out how to fix me up so they don’t have to literally save me. This is pre-surgery surgery, or as I like to call it, surgery.

My sister is with me because she’s had the worst luck of anyone I know – cancer, a critical automobile accident, over 20 surgeries. She knows the practice of medicine so well that I often have medical professionals ask if she’s one, herself. In this way, my sister is a double-edged sword: she’s great to have in the room as a medical advocate, but I don’t want her touching me out of fear her bad luck will rub off.

The nurse loves my pink undies, and I think she’s a bit charmed by my sense of humor around it all – my pink undies, flaunting my body regardless of disability, and my optimism toward the procedure itself.

Yet, I’m genuinely scared. I’m so scared that I’ve waited to do this far longer than I should have. It was my physician and friend who finally convinced me, knowing how potentially serious this could all be if I kept putting off surgery and treatment of anything else found in the process. Then once the specialists told me of the extreme risk my health was under, I knew I had to take responsibility, not just for myself, but for the sake of those who love me. And, I still have a lot of lovin’ to do.

The nurse asks me to put on the hospital gown, and I want to wear it as a cape. But, she insists I wear it the right way. My sister helps me put it on as I pout like her four-year-old. But, I want to wear it like a cape!

The anesthesiologist comes in and notes my “chronic” cerebral palsy. Is there non-chronic cerebral palsy, where you only have it on, say, Thursdays? She then stands at a computer and asks me questions from the screen, including, do I get short of breath walking up stairs?

My sister bursts out laughing and I point to my power chair parked against the wall, saying with absolute seriousness, “Only when I’m carrying that up stairs.”

Finally, the surgeon comes in to give me the rundown before we go into the O.R. He’s wearing the exact model watch I own and love, and for a moment I wonder if a man of such impeccable taste is wearing pink undies, too?

Now I’m getting even more scared, and the anesthesiologist isn’t helping. The initial shot that was supposed to put me in La-La Land still allows me to recite the first page of Chaucer’s Canterbury Tales – from the tenth grade. Still alert, I watch out of my peripheral vision as they roll me into the O.R. And, I see the size of the camera they’re going to slide down my esophagus and the table of tools they’ll ultimately use to take three biopsies. And, I watch as the anesthesiologist injects a new drug into my I.V.

Next thing I know, I awake. I think I’m still in the O.R., but as I open my eyes, a nurse tells me I’m in recovery. I’m still on my back, with the gown on, but I’m oddly now wearing pants, socks and shoes, with no recollection of the procedure or getting dressed.

“How are you feeling?” the nurse asks.

“…Like the morning after an awesome night in Vegas,” I reply. “How’d I end up here, and where’s my shirt?”

Zach And I Are In Love

Holly & Mark / Gillian & Zach
Holly & Mark / Gillian & Zach

By Mark E. Smith

It’s official: Zach Anner and I – the two most eligible men with cerebral palsy in America – are in love.

Now, when I say that Zach and I have been the two most eligible men with cerebral palsy in America, what I really mean is, we couldn’t get dates if our lives depended on it. And, while we were tempted to date each other out of pure complacency, it turned out that waiting for the two most beautiful women in the world to sweep us off of our feet (which, let’s be honest, isn’t hard to do when we’re not on our feet to begin with), turned out to be a better idea. I should clarify that we weren’t both waiting for the two most beautiful women each, which would equal four women in total and would be really weird and a TLC reality show, but one amazing woman each. And, we scored!

In an uncanny twist, about 10 months ago, Zach and I started falling in love – with two separate women, not each other! – in Southern California. And, amazing women they were (they, of course, still are amazing, even more so, but I’m trying to keep my tense straight). Zach’s beloved Gillian is an internationally-known singer-song writer, and my beloved Holly is an artist. Both women are creative, witty, caring souls, who’s personalities truly radiate at a tangible level. Their depths of character range from funny to empathetic to being up for all that life has to offer. So, how did Zach and I ultimately get so blessed with such amazing women?

Cerebral Palsy. Fellas, trust me on this one. Forget the cheesy pick-up lines, fancy cars and medical degrees. All you need to attract a woman is cerebral palsy. Even if you don’t have cerebral palsy, say that you do. You can have a Ferrari and medical degree, but unless you tack cerebral palsy on the end, you don’t have a chance. Why? Because every woman knows cerebral palsy is where it’s at.

Of course, cerebral palsy has nothing to do with Zach and my finding love. The truth be told, we know the real secret to our finding the two most amazing women in the world: We’re just ourselves. What makes Zach and me who we are is just that – we’re happy as we are, cerebral palsy, poor posture, twisted senses of humor and all. And, with self-acceptance comes a confidence and comfort, where we have the ability to laugh and love and embrace life with an enthusiasm that’s contagious. We’re easy to love, but we equally love easily, where we know that vulnerability is a strength, empathy is a gift, and a true lover is also a best friend.

If you want to be loved for you… well… just be you.

Awesome socks don't hurt, either!
Awesome socks don’t hurt, either!

Even When Losing, Let’s Win

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By Mark E. Smith

I speak a lot about seeing opportunity in adversity because it’s where our biggest successes are formed, and it’s really been the guiding principle of my life. If you can take the bleakest circumstance and turn it completely around – to work not against you, but for you – that’s where the most rewarding circumstances of our lives occur.

I was recently mortified when I was informed by one of my team members that I’d missed an article deadline. These days, I write several formal magazine articles per month, with deadlines six to eight weeks in advance of publication. And, I’m fanatical about deadlines, where I never run up to the wire, always ahead of the game. But, this article escaped me. I don’t know if I’d never received the request or if I simply totally forgot about it; but, for whatever reason, I had no recollection of it. I’d missed the deadline, let the editor and my staff down, and, of most regret, I’d blown an opportunity to publish a piece that I believed could impact the lives of others with a very poignant topic. I’d failed completely.

Yet, I don’t give up that easily. I immediately took ownership and disclosed to my whole staff that I’d blown it, that for reasons I couldn’t explain nor excuse, I’d dropped the ball. And, I asked all to give me the opportunity to try to make things right. I went to the editor and sincerely apologized, noting that my failure was inexcusable, but if she could give me two days, I could make things right. She, understandably, was reserved, but gave me two days to write a 1,600-word article – a seemingly impossible task considering all of my existing commitments over those 48 hours. And, reading between the lines, the editor didn’t seem too optimistic, as pulling off a 1,600-word article of quality in two days is rarely accomplished.

Yet, I had the only tool I needed: opportunity. The editor was gracious enough to give me a second chance, two days to rise to a challenge – and I thrive on the opportunity in adversity. And, so I squeezed a half hour here and five minutes there, and rather than neglecting any other obligations, I wrote around them – literally – and got the job done. But, was the quality of the piece up to par, or had I struck out twice?

Upon submitting the piece, just a day before the editor needed to go to lay-out with the magazine, I didn’t hear back from her – that is, until she let me know that she’d decided to give my piece both the feature position and the cover, as big of compliment that writers get. In 48 hours, I went from a no-show to the feature. Talk about going from a zero to a hero.

Now, it is true that without the editor extending me the gracious opportunity, I’d been shut out, and rightfully so. After all, I missed the original deadline. However, by not accepting a loss, assuming accountability and seizing opportunity in adversity, I scored big time. I went from losing to winning, from out of the magazine to getting the feature and the cover.

Think about how many times in all of our lives we find ourselves at a dead end, a game-over moment. Think about how many people accept that and just quit. No, these are the times of utmost possibilities in our lives, where a dead end is virtually always a fantastic starting point. What’s to the right or the left or beyond that dead end? That’s where to look, that’s where there’s always opportunity in adversity.