The Power of Abandonment

Mark Sit Skiing 1987
Mark Sit Skiing 1988

In art and dream may you proceed with abandon. -Patti Smith

By Mark E. Smith

The only sport that my disability level ever truly allowed me to compete in was downhill sit-skiing in the 1980s, when the technology – a kayak-type device, steered with short poles and edges on the bottom – just matched my limited coordination well enough to allow me to snow ski. In fact, it taught me a lot about how having the courage to push our boundaries isn’t about risks, but rewards.

It was the 1988 Western Regionals for what then was called National Handicapped Sports and Recreation, the governing body of adaptive snow skiing. In order to qualify for Nationals, one had to time in at Regionals, and my region was especially competitive because it was home to world-class athletes like Marilyn Hamilton, Dave Kiley, and Peter Axelson. However, I was lucky in that adaptive ski technology was rapidly changing that year, and those three ultra-skiers were in a new class called “mono-skis,” a technology that my lack of balance wouldn’t allow. So, the sit-ski class that I raced in was much smaller that season; yet, ultimately no less competitive.

My foremost competition was Mike Moleski, a paraplegic who was almost twice my age and definitely twice my size. I was a skinny 17-year-old kid with cerebral palsy, and Mike was a 30-something jock with muscles galore. He was also a bit of a loose canon. He appeared every bit your stoned surfer dude, right down to bleach-blond hair, and he sit-skied like he was on fire. I don’t know why, but when everyone else moved to the newer technology mono-ski class, he stayed in the sit-ski class with me.

And, I had no hopes of beating Mike, no matter how well I skied. He was too big, too strong, too coordinated, and too daring for me to realistically compete against on the race course. And, my coach knew it. “You’ve got three possible outcomes here,” my coach told me. “You can ski your own race and finish the course, but likely not qualify for Nationals. You can ski with abandonment and risk blowing out of the course, getting disqualified. Or, you can ski with abandonment and at least have a shot at keeping up with Mike and qualifying for Nationals.”

Of the three choices, only the two made sense to me: Ski with abandonment. Taking the safe way would get me down the course, but likely not with the time that I needed, so why even race? However, while skiing with abandonment would risk a disqualification if I got out of control and missed a gate, blowing the course, I still had an equal chance of ranking a leading time if by some miracle I could pull it off. I figured out of the three choices, only skiing with abandonment – and pulling it off – gave me a shot at qualifying for nationals.

The mono-ski class raced first, and the course was so steep and fast that they decided to start us sit-skiers off lower on the course. Mono-skis are a seat frame mounted to a single ski, with exceptional turning and edge control, so they handle high speeds and steep terrain better. Sit-skis are more of a sled, so they drift and speed can quickly become difficult to control. So, when I saw the steepness and speed of the course – even at half way – I was scared. I was no longer worried about blowing out of the course, but actually getting hurt.

Mike went first, and I saw his ski drifting as he flew down the hard-packed course, barely making each gate. If he was having trouble holding turns at speed, I was really in trouble. But, he finished the course, with a time I knew I couldn’t match – unless I skied with abandonment.

As the buzzer went off, I thrust myself out of the starting gate, and was immediately accelerated by gravity. Mike was smart in that he tried to stay in the trough carved by earlier racers, using it like a bobsled shoot to help steer his course. But, it likewise seemed to slow him down, so just past the first gate, I jumped out of the trough and opted a straighter, faster, more dangerous line, struggling to stay center course, hitting speeds that made it seem like the gates were much closer than they were. But, I soon figured that I really needed no technique, just abandonment. I applied no speed control whatsoever, and just used all of my strength to center the sled on each gate. And, as I hit the finish line, I had no hopes of stopping but to throw the sit-ski on its side, skidding to a stop in front of the crowd. Everyone cheered, including Mike – my time within a second of his – with my coach picking me up, sit-ski and all.

Sometimes in life – no matter sports, love, career, or disability, to name a few – the safest way isn’t always the surest or most rewarding way to accomplish what you wish. Sometimes you have to take calculated risks, and say, I don’t know how this is going to turn out. But, I’m going to put it all in my own hands, and give it a shot….

Guys Nights

mitch

A friend is someone who gives you total freedom to be yourself. -Jim Morrison

By Mark E. Smith

“Bionic Brogan” is what one of many headlines called him. But we just call him Mitch. He’s one of only a handful of people in the world to own an exoskeleton, a $110,000 bionic “suit” that allows him, as a quadriplegic, to walk. Yet, beyond his owning the coolest gadgets among our group, we just like Mitch as Mitch, a hipster Canadian with a great laugh and a completely silly sense of humor – a class clown at heart. He wears his trade show credentials on an elastic neck lanyard, and stretches it like a rubber band, so that it retracts and hits him in the face. And, I find it more hilarious every time he does it.

Voitek!

With Mitch is his buddy and bionics colleague, “Voitek.” Voitek is a literal rock star – minus any musical talent or an actual career. He’s a cross between Justin Timberlake and Johnny Depp, with the swagger and charisma we could all only wish for. And he dresses the part, pulling off the retro, bad-boy look in blazers and hats like he just walked out of a black-and-white Dolce & Gabbana ad. And, he’s always got some mystery to him, once showing up with a black eye, where he even pulled that off as cool. And, I constantly shout his name no matter where we are, just because I like the sound.

Voitek!

Rene sits next to me, and I first met him when I was 18. And, he’s the “orange man.” In an inexplicable way, everything he owns is orange – not just orange, but the exact same color orange, defying the difficulty of matching an exact color shade. From his wheelchair to his watch, to his phone to his clothes, it’s all the same, exact color orange. He told me it’s an attention-getter as a salesman – and it is. But, I remain boggled by his ability to get so many items in an exact shade of orange. I think he owns a Willy Wonka-type machine that creates orange things. Rene and I are affectionate toward each other, as is the whole group, where hugs and, “Love ya, Man,” trumps handshakes or Neanderthal bravado.

Voitek!

Across the table from me is Ryan, the “wheel guy.” Virtually every ultralight wheelchair in the country has his wheels on it. Ryan has boyish good-looks, and just smiles, seemingly glad to be anywhere. He’s the all-American guy, whom I could see teen girls getting a crush on because he comes across with a charming ease and innocence. He’s just a genuinely great person, and puts everyone at ease. And, he always ends up the designated driver, namely because he’s arguably the most responsible among us. You wouldn’t look at the rest of us and think that adding a motor vehicle to the mix would be wise. But, Ryan legitimizes everything – he’s the front man to our motley crew.

Voitek!

As for me, I’m always in a tie – the “tie guy” – completely overdressed for virtually every occasion, including dinner with the guys. And, I always have a ridiculous but true story to share – and sometimes create in the moment based on my pure stupidity. It usually begins with, “So, you won’t believe what happened to me last week…,” and ends somewhere hilariously bad. Or, it begins with, “Watch this…,” and ends somewhere hilariously bad. In whole, it usually ends up with my life being hilariously bad, which all of the guys appreciate and admire. Getting my power wheelchair stuck in a revolving door because I bet one of the other guys $100 that I could make it through is the story of my life.

Voitek!

Rene knows the owner of the high-end restaurant we’re at – and the owner and staff are as amusingly ridiculous as we are, right down to the model-ish blond hostess who tells me she’s from the Ukrane, but seems to ignore all customers, chatting us up. We’ve forgone menus, and the staff just brings us dishes of food – and we’re not totally sure what most of it is, but we just eat it, trustingly. The talk, besides trying to figure out what we’re eating, revolves around the nonsensical – no room for business when there are so many stories to swap. Women usual come up – no, not literally, as we’re too ruckus for that – but in our conversations. Married, divorced, dating, dumped, we all struggle. Except for Rene, who’s just glad that his wife has tolerated him all of these years. I’m sure it must be true love for Rene and his wife, but a few of us would gladly settle for tolerated by a woman at this point. And, tolerated is good because we can behave like the well-meaning but wacked-out bunch we are, and not get yelled at by our significant others. Mitch is a clown, Voitek ends up with black eyes, Rene dips himself in orange, Ryan just smiles, and I get stuck in revolving doors. That’s well-behaved and tolerable in my book. What woman wouldn’t want guys like us?

Voitek!

And, then a bottle of Patron just shows up. I still don’t know what Patron is, other than hearing it used as a status symbol in rap music. And, we all do a shot, where to me it tastes like chocolate milk. The conversation soon shifts to a group Vegas trip – which is both the best and worst idea ever. The five of us in a 550-square-foot condo, with unlimited access to …well …everything we shouldn’t be doing, is a disaster waiting to happen. I love Vegas, and if the plan went down, even with Ryan as the front man apologizing, I may never be allowed back again – that is, to the city. And, I’m not sharing a bed with Rene no matter how cuddly he is. I say, let’s just light ourselves on fire now, and save the airfare, condo cleaning fee, and various police citations.

Voitek!

Yet, the more that I think about it, the better the idea of Vegas with these charming sloths sounds. Maybe it’s because these are among the best friends a guy could ever have, and I’d never pass on a chance to hang out with them. Maybe because when I’m with these guys, all of our troubles are left behind, and we live in the moment, making up the rules as we go, where we just accept each other as-is. Or, maybe because I’d love a few more ridiculous stories shared, where Rene could bring up in another city, at another time, “Remember when we were in Vegas, and….”

It Gets Better

morgan
Morgan Duffy & Crew, Stanford Class of 2013

By Mark E. Smith

Author’s Note: There’s a disturbing undercurrent that, in this modern day, some teens with physical disabilities still feel isolated, depressed, even suicidal. So, let us talk about being a teen with a disability, and how life gets better….

As a teenager struggling with having a disability, you need to know only one truth: Life gets better – remarkably better.

I remember being a teenager with cerebral palsy and, like you, I remember struggling with it all – feeling different, but wanting to fit in; being treated different, but wanting to fit in, or, at times, feeling completely “normal,” but not being accepted as such. No, high school for me wasn’t all terrible – there were some good friends and good times, as I hope there are for you. We should all see good where there’s good. But, it wasn’t easy for me being different. But, it did get better. And, I know it may not be easy for you right now, but it will get better – remarkably better.

See, high school is tough for everyone, typically a confusing time, and everyone just wants to fit in. I have a 16-year-old daughter who “fits the mold,” and it’s even tough for her and her friends at times. Like you and my daughter and her friends, I just wanted to fit in, too – to have the right friends, have the right persona, and get invited to the right parties. And, for me, maybe like you, sometimes it worked, and sometimes it didn’t. Well, a lot of times it didn’t work. And, when it didn’t work – the occasional bully calling me “retard,” or not getting invited to different events and such – it really, really hurt. At points, I, too, just wanted to give up and die. And, before it gets better, sometimes it gets worse.

I remember at among the lowest points in my teen years, I had a girlfriend who I thought truly accepted me, but when it came time to dance at the prom, she wouldn’t dance with me because I used a wheelchair. I remember thinking that my disability was the blame, that if I wasn’t plagued by cerebral palsy, I’d have all of the friends, girlfriends, and coolness in the world. However, I would never be accepted or successful because of my disability.

But, I was wrong. High school and my peers had no impact on my ultimately living a happy, successful life. The day that I graduated, virtually everything got better for me. I went from bullies calling me “retard,” to being a writer, speaker, and academic. I was soon invited to real parties, with amazing people, even getting to meet the President of the United States. And, while no relationship is perfect, I had my ultimate dances with amazing women since – loving, accepting, sincere. It all got better – remarkably better.

My daughter and I were planting Marigolds this spring in a flower bed in front of our home. It was a 70-degree sunny day, where our English bulldog lay on the ultra-green grass. And, although my life, again, isn’t perfect, I was reminded of all I’ve been blessed with – my daughter, a career that helps others, a nice home, the respect of those in my community – and I thought back to my days in high school, wondering where those who treated me poorly are today? Oddly, when I was on Capitol Hill recently, none were there. I don’t see any of them in magazines that I write for, or any with Internet followings. And, I have to wonder with a smile, is their grass as green as mine?

The fact is, while those who hurt you today in school may seem so powerful, they’ll soon enough get lost in the world. But, you. You were born into the extraordinary, with capacities toward life success that they’ll likely never realize. Let’s wish them well, but they don’t have what you have – that is, potential waiting to explode. And, it will, where your life is going to get better – remarkably better. You’re a survivor and a thriver, and that which seems to work against you now, will work for you soon. You’ve been given the gifts of tenacity, perseverance, and empathy – traits that are rocket fuel for life, just waiting to ignite your life in the most rewarding of ways.

My young friend, Morgan Duffy, graduates from Stanford University in a few weeks at this writing. She’s a Dalai Lama Fellow; she’s done an internship on Capitol Hill; and, she’s studied abroad. And, get this, she’s accepted a job with Genentech – without even applying (the recruiters found her based on her accomplishments). But, I’ll let Morgan’s own words explain the rest of her story:

So I’d like to tell you that I am your average 21 year old, living life and learning through mistakes and experiences. Most of my experiences, however, are less than average. Three years ago, I packed up my life and moved from the small city of Scranton, PA to begin my college education at Stanford University. I am a Cross Cultural Health and Intervention major with interests in disability, health policy, social justice, women’s health and choice. Like most, my interests are based in experience. I am a woman with a physical disability, who navigates the world in a wheelchair. And I like to feel the world beneath me in that way, taking each bump and knock consistently and steadily. My mother is a nurse, and through my years listening to her complain of the inefficiencies and inequities of modern US health, I have been motivated to learn how to change this. Social justice was the foundation of my high school career at Scranton Prep, and I have vowed to never forget.

Morgan isn’t an exception, she’s the rule – just as you are. You, too, will leave your town and “feel the world beneath you,” as Morgan puts it, going on to successes that won’t just change you, but will change the world.

It may all seem tough today, but the strength to hold on was born into you – there’s a purpose for who we each are, and yours is extraordinary. Tough out the tough times, as it all gets better, remarkably better. And, yes, the grass will be greener on the other side. I’ll see you there.

Empty Words

emptywords

By Mark E. Smith

The two symbolic, ground-breaking shovels that sit in the corner of his office catch my eye. One is gold-plated and the other, chrome. They’re the type of shovels that dignitaries and politicization use to pose with in a dirt patch when kicking-off a new development project. And, they’re leaning in the corner of his stately office, which clearly has not been remodeled since the 1980s, right down to worn leather chairs. But, all is spotless clean – even the shiny shovels.

I could picture him back in the day, likely slamming one of those shovels onto a board room table, and saying in a larger-than-life voice to his executive team, “Are we going to dig our own grave, or dig our way to the top?”

Yet, now he’s a kind, calm, soft-spoken older man, a proud grandfather. And, as he talks I feel a bit writer and a bit grandson. “Never trust words,” he says. “Flow charts, a good dresser, a great speaker – never trust any of it. Only trust results. When someone delivers, trust that. Trust whomever backs you in the trenches.”

And, for a moment, my eyes drift back to the shovels leaning in the corner, and I think about how true his words are, not just in business, but in life. As a writer and speaker, I’m a contradiction in that I’ve always distrusted words. It goes back to my mom and her always lying about not being drunk, my therapist would say. And, while maybe that’s where my distrust of words likely began, it runs more universally than that. I’ve learned that when we truly care about others, we don’t just say it, we show it. Show me you care about me, show me you love me – don’t just tell me. I’ve fallen for words too many times, only to be hurt by them – empty, hollow in the end, the words, me, all of it. You have, I have, we all have. And, what’s insane is that we continue wanting to hear them, the words, and believe in them – I’ll pick up the pace, I’ll make things right, I’ll quit doing it, I’ll change…. But, what’s any of it mean if there’s no action or effort behind the words?

The answer is, nothing. Here’s the fact: when we look and don’t listen – that is, when we gauge a person on what they do, not what he or she says – it’s the ultimate truth of what we mean to that person. No matter if it’s an employee, friend, or love interest, follow what one does, not what one says. Lots of people will say they’re there for you; but, who’s truly there in the sincerest ways? It quickly becomes a short list, doesn’t it?

And, yes, it’s a painful realization, but also a poignant one. See, in the process of realizing how adrift we are, alone at sea, we likewise realize who’s truly there for us, not in words, but in heart, soul, good times and bad. Words are so often an empty gesture; but, actions of the heart always prove true intent. Grab those who put their hearts and souls out there for you – hold on to them, truly trust in them, no longer adrift but anchored by them.

And, as he continues speaking, I stare at the shiny shovels, and again wonder why any of us still trust in words at all?

Find A Way

findaway

By Mark E. Smith

I’m not a miracle worker, but no matter what problem you throw at me, I can tell you in three words how to solve it: Find a way.

If there’s one life-changing, ever-empowering truth that disability experience has taught me, it’s that there’s always a way to resolve or accomplish what we wish – we just have to find a way to do it. It may not be initially evident; it may not be easy; it may not seem practical; and, it may even seem ludicrous. Yet, to any challenge or situation in life, there is a way to resolve it – we just have to find the way.

I often share the story of my shoe laces. For the first 25 years of my life, I couldn’t tie my own shoes based on my lack of dexterity and coordination. Now, in the grand scheme of life, not being able to tie one’s own shoes may not seem like a big deal – after all, there are far more serious limitations in life – but it was one of the last pieces to my physical independence. The ability to tie my own shoes meant the difference between being able to fully dress independently or forever rely on others.

For years, I tried all sorts of shoes, with all sorts of practice. But, alas, I could never coordinate shoe laces well enough to tie them. I even got to the point where I could make the loops, but as I went to cross them, all fell apart. It was forever frustrating, to say the least, right down to my brother having to tie my shoes on my wedding day.

Yet, after years of practice, trial, error, and failure, I was so close to tying my own shoes that I knew that I could do it – I just had to find a way. And, so I reanalyzed my process, and realized that where the issue was, was that when I went to cross the shoe lace loops, my poor coordination over-extended the shoelaces, causing them to come undone. If only I had more shoelace length to work with, I could cinch the loops before pulling the ends out…. And, in that was the answer: get longer shoelaces! Indeed, I found a way, and till this day, 72” shoelaces are the solution I use to tie my shoes. It wasn’t that I couldn’t tie my own shoes; rather, I simply had to find a way to do it.

Finding a way is amazing because it empowers us to find a solution to any problem rather than accepting it. A task or situation may seem impossible, but if we truly believe that there is a way to successfully solve it – we just have to find it – it inspires us to not just try, but try harder, as well as go into situations with a can-do attitude.

I admit, I’ve become pretty skilled at finding a way, where when I encounter a challenge, I don’t shy from it; rather, I go into find-a-way mode. I recently wanted to interview a business titan for a book I’m writing. The individual is bigger than life, worth an estimated $2-billion, and has an insanely busy schedule. I remember thinking, How am I going to track this individual down, let alone get a several-hour interview? The answer immediately struck me: Find a way.

I thought for a moment who might have the individual’s personal contact information – as I wanted to get direct to the source – and with a single email exchange, I scored both the individual’s and the individual’s assistant’s contact information. Bingo! I then sent an email to the assistant, and within 20 minutes, I had an interview scheduled. I flew to the individual’s headquarters, and ended up with an amazing two-hour interview. If I had told most folks who I wanted to interview and where, they would have thought it crazy. There’s no way you’ll pull that off, most would have said. However, knowing that I just had to find a way to pull it all together made the seemingly impossible ridiculously easy. There I was, having flown partly across the country, sitting in the individual’s stately office, hearing amazing, never-before-told stories to include in my book.

See, that’s the eloquence of find a way – it immediately makes the impossible totally plausible. Are you having difficulty accomplishing a goal? Find a way. Are you struggling to get the results in a particular aspect of your career that you want? Find a way. Do you want to make major changes to your life? Find a way. Do you want to live your dreams? Find a way!

No, anything truly worth striving for isn’t easy, nor without complications. But, if it’s truly worth doing – if you’re truly dedicated to accomplishing it – there’s a way to do it. Find it. Live it. Never give up hope, as there’s always a way….

From the D Word to the O Word

psychologist-couch

A pessimist sees the difficulty in every opportunity; an optimist sees the opportunity in every difficulty. ― Winston Churchill

By Mark E. Smith

So, I’m in counseling, and tackling it like the gym, where I’m there every week, hitting it hard – I’m in the mental and emotional trenches, no messing around. I’m getting it done. For me, it’s about refinement and getting further on top of my emotional game at this stage of my life. Personal growth is a never-ending process, especially if we want to be the best that we can be for those we love. And, it’s an empowering process, where I’m getting clearer perspectives, in a truly objective, safe setting.

However, my kind of unique life experience has muddied the waters a bit, where, philosophically, some of what I’ve done in my life simply contradicts the basics of psychotherapy. For example, I want to ask you the same question that I asked my therapist: What’s the difference between denial and optimism?

It’s a profound question, one that hinges on life experience in many cases. Denial, put simply, is the refusal to accept realities, whereas optimism is the belief in a positive outcome, which often contradicts accepting seeming realities. If everyone tells you something is impossible, but you believe it’s possible, is that denial or optimism?

It’s so important for each of us to consider because it dictates our potential. I work with a lot of people going through the initial stages of disability experience – from new spinal cord injury to the onset of progressive diseases like multiple sclerosis. And, the medical diagnoses, supposedly based on science and statistics, are often grim – the bleakest of the bleak prognoses one can receive in many cases. And, when individuals dare challenge the limitations placed on their condition, the establishment is quick to use the D word, denial. Yet, I encounter individuals every day who are convinced with optimism that they can exceed their prognoses – and then they actually go on to do it….

And, a lot of us continue doing it, where we’ve not just surpassed the “realities” of others, but continue striving to do so when needed or wished. It’s optimism at its best that allows us to overcome hurdles that the “denial” labelers set.

With all of that said, here’s where I think the biggest difference between denial and optimism comes in. When one accepts the term denial, it’s an end-all to human potential. Stop your dreaming – you’ll never succeed at that…. However, optimism is the complete opposite – it allows all possibilities. Given the right circumstances, it could happen….

Which label would you rather take accountability for, denial or optimism? To my counselor’s frustrations, I choose optimism, where I truly believe in all of our potentials. As I tell her, I’ve simply seen too many people accomplish the seemingly impossible to label anyone’s optimism as denial.

Flipping Coins

Image

By Mark E. Smith

They say that there are two sides to every coin – and that’s so true in life. The fact is that adversity happens to all of us, but so can success, often all in the same circumstance. Often turning a vying into a victory, you might say, comes down to simply flipping the coin to the other side. On a deeper level, it’s a principle that I call, Making that which seems against you, actually work for you. It’s about taking the bad tosses of life, and flipping the coin over so that they become blessings, successes, better than where you started.

A friend of mine loved her job, having worked it for 10 years, making close to $100,000 per year. She admired her co-workers, was immensely talented, and was loyal to her employer. She told me that she hoped to run the whole division she was in some day. She was inspired, accomplished, and on the fast track. So, imagine how devastated she was when she was abruptly let go, her job gone.

I worried about her tremendously, wondering where she would go, what she would do? To make matters more concerning, she was the bread-winner in her household, supporting two children and a mortgage. What good could possibly come out of that situation, one that countless Americans currently face? Indeed, it was a terrible toss of the coin, the losing side of life flipped up.

However, my friend did something amazing: She did what it took to turn the coin right-side-up. Within two weeks, she had a new job several states away, bold enough to make that move. And, after a year at that job, doing very well, she was hired at one of her old employer’s competitors for more money, in a more prestigious position. That which originally seemed to work against her, ultimately worked for her. She didn’t just come out of adversity, she came out on top.

Think about how many aspects of our lives that seem against us, actually work for us. An ended bad relationship leads to a healthy new one; a job loss leads to a better one; addiction-recovery leads to healthier living. The list goes on and on. However, the truth comes down to this: Just when you think life’s dealt you a blow with the bad side of a coin, remember that there’s always another side. Flip it over, and make that which seems against you, actually work for you.

I recently saw the movie, The Sessions, based on the true story of writer, Mark O’Brien. Struck with polio as a young boy, he spent his life completely paralyzed, most of the time living in an iron lung. Yet, he used among his only capabilities – the ability to move his head – to control a mouth stick, meticulously typing one letter at a time, ultimately publishing countless articles and poetry on subjects ranging from disability commentary to baseball to interviewing Dr. Stephen Hawking. O’Brien took among the toughest plights – imagine all that was against him – and made it work for him.

Life is going to give us all bad tosses of the coin. Heck, I sometimes think I’ve had so many bad tosses of coins that my adversities keep the Federal Reserve’s mint in business! Yet, I always know exactly what to do when bad tosses of the coin come my way: flip it over, making that which seems against me, actually work for me. I was raised by alcoholic-addicts, so I’ve lived a very sober life. Being a full-time single dad has made me a better dad, bring more joy to my life as a father than I could have ever imagined. Having cerebral palsy has allowed me among the most rewarding careers. I could have easily gone down terrible paths with each adversity in my life. However, before the coin even hits the ground, I’m usually snatching it mid-air, ensuring I’m righting it as quick as I can toward favor and blessing.

Bad tosses of the coin are going to come your way – that’s a fact. However, it’s up to you to leave it as-is, working against you, or strive to flip that coin over, making it work for you. I say, always strive to find the shiny side to any coin – read that, situation – as that’s the only one that will add value to your life, taking you to levels of success that others may not have foreseen. 

Play In Pain

By Mark E. Smith

At this writing, hurricane Sandy is bearing down on us, and it looks like I have to ride home in my power wheelchair in rain and 40mph winds. And, I’m totally fine with that – no big deal. Now, I have other options, but they seem illogical to me. I have over 400 hours of accumulated time off, so I could have stayed home, or even worked from home. Or, I could call someone to bring my van and pick me up. But, why would I do either of those? Schools are closed, and people are hunkering down with storm supplies, but a little discomfort – or, a lot – never persuaded me to stop from doing what’s best for me and those who count on me, like my going to work like any other day, regardless of a supposed looming hurricane.

We live in culture where too many people seem to resist “playing in pain,” sidelining themselves from the game of life, albeit due to emotional, physical, or mental challenges. It’s as if why try when you can just give up? There’s a storm brewing, so let’s cancel school. I’m sick, so I’m not going to work. My boyfriend broke up with me, so I’m going to sleep all weekend. I lost my job, so I’m just going to sit around the house….

No, just because bad things happen doesn’t mean that we throw in the towel, give up on ourselves, make excuses, or stop our lives. Rather, in times of adversity, we should pick up the pace. They make rain gear to weather storms, and when storms hit our own lives, you might say that rather than run and hide, we should don our rain gear – that is, our inner-strength – and head into the storm, head on. After all, weathering storms is how we grow and become stronger.

The next time you find yourself with the two options of adversity – to play in pain with pride, or seat yourself on the sidelines of life with pity – don your rain gear and head into the storm, with courage and tenacity. Choose to “play in pain,” and you will come out stronger.

Living as Josh Does

By Mark E. Smith

Twenty-one-year-old Josh has been an increasingly remarkable spirit in my life since I met him four years ago. I’ve never known a young person with such wisdom and insight, making our recent conversation par for the course based on Josh’s amazing character.

Josh was diagnosed in his adolescence with a very progressive form of muscular dystrophy. However, unlike many others with his prognosis, the disease didn’t progress as rapidly as usual – that is until approximately two years ago. In fact, when I first met Josh, he was still walking, using a mobility scooter for longer distances. Yet, in the last two years, the disease caught up with him, dramatically diminishing muscle tone. I’ve seen Josh go from drinking from a soda can normally, to struggling to lift it with two hands; and, I’ve seen Josh go from walking to not being able to transfer himself from a power wheelchair.

Make no mistake, the physical realities of Josh’s condition are disheartening. But, the lessons learned and the personal growth that’s resulted from his challenges have been inspiring, teaching us both invaluable lessons along the way.

Josh and I have traveled a lot together, working trade shows, summer camps, and advocacy events. We’ve lobbied the halls of Capitol Hill, and rock-starred it in Los Angeles. However, the heart of our friendship has been formed from our weekly phone calls, where every Thursday, Josh and I talk on the phone, tossing around subjects ranging from relationships to dealing with disability to music. My role is supposed to be that of mentor, but Josh has so much wisdom and is so reflective of the struggles and victories that we all face, that I often think I learn more from him than he does from me.

One of Josh’s recent victories – and a process that we talked about for many months – was his driving independently via an accessible van. After a year and a $120,000 in technology, Josh now independently drives a van with ultra-high-end hand controls that are closer to resembling those that control an airplane more so than a car. And, for his first long-distance drive this summer, he drove 3-1/2 hours to vacation at a lake where he vacationed often as a child.

When we spoke the week after his vacation, he explained to me that the trip was ultimately a realization for him: Most of the activities that he could do as a teen – boating, fishing, and so on – were no longer feasible or easily accomplished, that he realized in very real terms the progression of his condition.

I, of course, asked how he felt about his sudden realization of the progression of his condition? And, his answer was a lesson for all of us. Josh explained that what realizing how much his condition has progressed made him intimately understand is the importance of making the most of today because we don’t know what tomorrow brings.

I couldn’t have been prouder of Josh’s insight because it demonstrated a perspective that we should all live by: Being bitter or regretful of our pasts – or of what’s seemingly been lost – is pointless. Valuing our present – no matter the circumstances – is truly what it’s about.

Moving well beyond disability, think about how many of us dwell on past relationships, childhood trauma, lost jobs – you name it – where rather than accepting, healing, and evolving to live fully in the present, we just get stuck in the past. Josh could have likewise gotten caught in the past, returning home bitter as to what his condition has done. Instead, he recognized the past as just that – gone, done, over – and was even more inspired to appreciate whatever abilities that he has today. It’s kind of like rather than dwelling on how bad your past relationship was, you focus on how great the current one is – that’s how you move forward.

And, if there’s a single lesson that Josh teaches us, it’s to live in the present, simply appreciating all that we have today.