PowerchairDiaries

One Person at a Time

By Mark E. Smith

If there’s one principle I’ve learned in my 20-year career, it’s that you can have a tremendous impact on a global scale by simply serving one person at a time.

Somehow a mythology has evolved over recent centuries that in order to have a notable impact on the world, we have to do a single, epic act: invent electricity, cure a disease, write an ageless book, or any number of extraordinary acts that win a Nobel Prize.

However, that’s not, in fact, how we change the world. The fact is, if you look at the way the world’s changed over the past 100 years, it’s been by far because a single person had the vision to change lives of individuals one at a time.

We’re not a country of advanced automobiles because Henry Ford magically gave every person in America a car at once and changed the world. Rather he sought to build a car that individuals could buy, one by one, and individual lives changed, ultimately creating a cumulative effect. Fast forward toward the end of the 20th century, where personal computers fueled by Gates and Jobs, among others, and we saw the same process, where PCs were adopted by individuals one by one, where slowly the movement changed our lives. Now, in the present, look at Facebook – 1.59 billion users didn’t just pop up, but joined, one by one. Indeed, even in the most monumental success stories of world change, they’ve all started with individuals and flourished by the individuals’ lives impacted by them, one by one.

The Gates Foundation has been on a mission to change the world for millions of children in third-world countries. Over 1.5 million children die each year from diseases of which there are vaccines, but to which they don’t have access. The Gates Foundation has been eradicating this issue. How? By vaccinating one child at a time.

Now, most of us aren’t Fords or Gates. However, we possess the same ability to profoundly impact the world – by making a difference in the lives of others, one person at a time. It doesn’t matter who you are or what you do. All you have to do is be aware of who around you needs a touch of whatever it is you have to offer. Maybe you have a particular skill set that many can use, but not everyone can afford. Think of the difference it makes in a single life when you donate that skill to someone in need. Think about the contractor who quietly fixes up an elderly widow’s home; the college math student who tutors inner-city kids across town; the auto mechanic who fixes the single father’s truck at no charge so he can get to work and support his kids; the store clerk who asks everyone how they are because she truly cares; the pizza shop owner who makes every customer feel like family; the person who always answers the phone when a friend just needs someone to talk with. The list goes on and on, but the principle is the same: we each have the profound power to change the world one person at a time.

We can have a way of saying to ourselves, I’m nobody, with nothing to change the world. No, we’re each somebody – unique, with so much to offer, so many ways to change the world one person at a time. It doesn’t matter who you are, where you live, or what you do – you have the ability to improve the life of another person, and that single act alone does change the world.

I recently was interviewed, and the interviewer asked me what I saw as the greatest accomplishment of my career?

“I shipped a farmer in Iowa a part for his wheelchair this morning,” I said.

She looked surprised at my seemingly simple answer considering the complexity of my career.

“Is that an unusual situation?” she asked.

“No, it happens every day,” I replied. “But, you make a difference on this planet by embracing one person at a time.”

As Mother Teresa put it, “Never worry about numbers. Help one person at a time and always start with the person nearest you.”

Crystal Glasses of Ginger Ale

By Mark E. Smith

By the time I was vomiting uncontrollably in the shower that eve, I felt it a mixed blessing. On the one hand, I made it through a day that encompassed a media feature of my company, and I suspect vomiting in front of the press and my CEO may have influenced the story a bit. The press is fickle that way.

On the other hand, I was perplexed how I became so sick, so fast? And, so, as my wife brought me a baker’s bowl, so I could make it from the shower to the bed, vomiting on the move, I sought her expertise. After all, she’s a skilled medical professional – or, at least a high-end optician. If you can’t trust an optician to advise you on stomach viruses, who can you trust? OK, you can’t trust an optician at all for medical advice. While my wife could fit me for awesome eye wear, she was likewise clueless as as to why I was suddenly so sick?

Once in bed, things got worse. In my 45 years of having cerebral palsy, I’ve learned an invaluable lesson: the one downside to not being able to walk is not being able to walk. And, so as I felt my condition worsening, unable to sprint to the bathroom, I broke out my secret weapon: Depends. But, here’s the thing – as much as Depends are marketed as “underwear,” they’re diapers, poofy, odd diapers, sans the tape closure tabs. So, there I sat in bed – 1 am, 2 am, 3 am, 4 am – wearing a diaper while vomiting uncontrollably all night into a baker’s bowl. Some might find that embarrassing, but I found it an ingenious evolutionary system of survival. Prehistoric man and his tools had nothing on me – I had Depends and a baker’s bowl.

By the next day, I was gut-wrenching sick, vomiting ad nauseam, to painful dry heaves beyond anything I’d ever experienced. On the upside, it gives you one heck of an ab workout. I see dry-heave gyms catching on. But, I was getting sicker and sicker.

Now, here’s the brilliance of medical science: when you’re vomiting uncontrollably, they tell you to drink lots of clear fluids – all so that you can promptly vomit them back up. Gatorade in, Gatorade out. Water in, water out. It’s like I was the opposite of a waste water treatment plant, putting perfectly good fluids in me only to vomit them back up as bio hazard.

Finally, I settled on ginger ale. No, it wasn’t anymore effective than the other liquids. However, there was an elegance to it. Darling, won’t you please bring me a glass of ginger ale, with ice, in our finest crystal? And, that my beautiful wife did. Was I a sick, pathetic mess? Absolutely. I was in bed, wearing a diaper, vomiting into a baker’s bowl! But, the crystal glasses of ginger ale added a certain class to it all – even as I vomited every last drop. I was a hint of a British gentleman – vomiting, wearing a diaper.

After a few days, my wife wisely wanted to call an ambulance. I was only getting worse, unable to eat in days, and arguably pushing the line toward dangerous dehydration. My wife knew best. However, I’ve long trusted a slightly off-kilter Italian – my doctor. He’s long lectured me on trying to stay out of the hospital. English is his second language, so I don’t always know what he’s saying, but his theory is something to the effect of: Hospitals are full of viruses. You eat bad fruit, go to the E.R., touch something, get a flesh-eating bacteria, and, boom, you die! Yes, he’s prone to slippery-slope exaggeration, but has his points.

Still I followed my doctor’s advice and opted to stay in bed, wearing diapers, and vomiting the finest ginger ale from crystal glasses that money can buy – $1.79 per 2-liter bottle, imported from Canada.

Out of boredom one eve, I lay watching CNN political coverage. I was already sick, so the dynamics of the 2016 political race technically couldn’t make me any sicker. Governor John Kasich told the story of confiding in former governor Arnold Schwarzenegger that he didn’t know how to handle personal attacks? Schwarzenegger replied with classic Arnold advice, “Enjoy the punishment.”

Schwarzenegger is no philosopher, but he was on to something. We have choices in our lives. We can be bitter and resentful, or find some sense of gratitude, no matter how bleak the circumstance. Yes, I was sick to a troubling level, but at least I was sipping – and vomiting – ginger ale from a fine crystal glass.

The Success of Being You

By Mark E. Smith

If you look back at the GOP primaries of 2016, an interesting dynamic occurred at one point. There were two candidates – Marco Rubio and Donald Trump – with very different dispositions. Rubio was historically one of a positive message, while Trump was much more aggressive. And, both personalities had their place, per voters. Some were drawn to Rubio’s personality, while others were drawn to Trump’s.

Going into the Florida primary, the state was arguably up for grabs. It was Rubio’s home state, giving a candidate typically an advantage, but Trump, a known businessman in Florida, had very strong poll numbers.

However, the week of the primary, a lot changed. While Trump stayed with his aggressive messaging, Rubio made an abrupt change with his. To supporters’ dismay, Rubio went from his typical messaging to very aggressive, Trump-like messaging. And, it contributed to costing Rubio the primary.

See, voters wanted the Marco Rubio they’d always known, not a candidate who suddenly engaged in Trump-like aggressive rhetoric. By all accounts, Rubio becoming someone he wasn’t proved a catastrophic mistake.

Of course, there were a lot of other dynamics – some going back years – that cost Rubio Florida, but by most political observers’ accounts, his trying to be someone he wasn’t in the final week was the tipping point for Rubio’s loss.

The whole situation reminds me of our personal lives, how miserably we fail when we try to be someone we’re not – and worse yet, the toll it takes on us.

Outwardly, we can seem ridiculous in trying to be someone we’re not. A buddy of mine is one of the kindest, most sincere guys you’ll ever meet – the kind of gentleman many women would fall for in an instant. But, he has it in his head that he has to be a “cool player” when it comes to meeting the ladies, transforming into a cologne-drenched show-off who’s… well… ridiculous. The female friends in our circle have told him the simple truth: being yourself attracts others, not trying to be a studly caricature.

When we’re outwardly trying to be someone we’re not, we mostly risk embarrassment – or not getting dates in my buddy’s case! However, when we’re trying to be someone we’re not on the inside, it’s painful at best, self-defeating at worst. When I began dating my wife, I put my best foot forward, but I also vowed to myself – and ultimately her – that I wasn’t going to hold any aspect of myself back. If she fell in love with me, great. But, if any aspect of who I am chased her away, it would be my loss, but at least I was honest in the process. Nowadays, when we’re in the kitchen and I’m admittedly letting my twisted sense of humor fly, sometimes to her dismay, I have the ultimate defense, “You knew who you were marrying!”

Imagine, though – or maybe you’re there now – how painful it is not to be able to fully express yourself out of fear of rejection by those you love. Think about what it’s like to be in a family dynamic or relationship where you don’t feel safe expressing who you truly are. We know clinically that when we keep aspects of our identity bottled up, rates of depression, low self-esteem, substance abuse, and even suicide all skyrocket. Not being ourselves can literally be dangerous. Marco Rubio lost an election; but, Tyler Clementi lost his life when he jumped off of the George Washington bridge due to the shame he felt from being outed as gay.

None of this need be – and it’s a two way street. We must have the courage to just be ourselves, and we likewise must create an interpersonal dynamic where we welcome others to be themselves. In living such an open life, just think of how easy, comfortable and fulfilling it all becomes, where you can just be you. A Chinese proverb puts it best: Tension is who you think you should be. Relaxation is who you are….

That Man – Spoken Word Video

Transcript:

That man. That man. No Sam I am, but I am a minority, rolling with authority, living life proudly as who I am – because, man, I am that man.

No, I’m not a misfit, but a paradigm shift, where when the world says I can’t, and I say screw you, Captain Sulu – because I can. Man, I am that man.

Like a two-dollar bill oddity disband, I can thrive and jive – on the dance floor, had a boombox back in ’84 – and the band plays on and on and on like the wheels rolling on my chair, wind blowing in hair. Because, man, I am that man.

There’s no price of admission – disability isn’t a curse or condition – it’s just the way it is, say it like it is, live it as it is – screw those with ignorance, where what some call a hairdo is really just friz. Because, man, I’m that man.

Bold and determined, bulldozing like a tank named Sherman, I am a minority, and I’ll use my authority to make the world stand on end – screw you, I refuse to pretend who I am, because I’m proud to be me, all that you see – shout it, cerebral palsy – because, man, I am that man.

Why So Angry?

By Mark E. Smith

Terry wasn’t just mad. She was the angriest individual I’ve ever dealt with.

“What!” she exclaimed every time she answered the phone. Then after trying to argue with me over this or that, she’d hang up on me, only to then call back even madder. Terry would work herself up something fierce.

“Terry, you have to have faith that some of us truly care,” I’d try to explain to her regarding the industry I work in, the one she was furious at. “We’re all truly trying to help you.”

My words were most often overshadowed by her simultaneous yelling, but I was always sincere with her, no less.

Now, it would be easy to assume that there were emotional or mental health issues going on with Terry. But, it was clear there wasn’t – she was just angry, the angriest person I’d ever dealt with.

To a point, I felt for Terry. I mean, can you imagine going through life so bitter and resentful that it consumes you? There’s no question that she saw life as her against a rotten world. That’s an agonizing state to live in.

However, what’s puzzling to me about such angry people is why they give anger so much control over them? After all, it’s not like bad things haven’t happened to the rest of us. I know I have my scars. Yet we’re not consumed by it. Yes, at some point events are going to make us angry. But, we have the power to let it go. When someone darts in front of you in the Walmart parking lot and takes “your” spot, there’s a choice to be made: get out and threaten the person’s life out of anger, or smile and move on to find another spot. Anger isn’t our only option.

While I’ve always been a happy, optimistic person, I haven’t always been free of harboring anger, which is why maybe I empathized with Terry. In my 20s, I harbored tremendous anger at my father, in particular. It wasn’t that he only walked out on our family when I was little, but that by phone he’d pop up from time to time and make promises he wouldn’t keep or say hurtful things as drunks do. That builds a resentment and anger when you’re carrying that inside you while growing up. By my 20s, I was boiling over with anger toward him. At one point I reached out to him – admittedly looking for a capacity that I wanted him to have, Just say you’re sorry, Dad, and make things right – and his ultimate lack of response made me even angrier.

However, after harboring anger toward him for years, I realized he wasn’t the one hurting me – I was hurting myself. By my 30s I had so much good in my life, why let a guy who gave me no thought, drinking himself to death in a trailer in the mountains thousands of miles away, induce three decades of anger in me? The situation was the situation, no harm was being done to me anymore, so why not let it go?

So, I did. I was me, he was him, and the two no longer needed to effect each other. Before his death, I went 10 years without speaking to my father. I made the choice to let it all go – any anger, any resentment – and it worked. My life was genuinely happy, and I wished him no harm. It was a weight lifted off of my heart.

I learned a lot in that process, that while there are places and times for anger, it’s not healthy to hold on to it, and it’s certainly not healthy to let it interfere with that which is good in our lives. Some think holding on to anger is a sign of their strength. However, I learned that holding on to anger is an ultimate weakness that… well… simply holds us back.

The Je Ne Sais Quoi to it All

By Mark E. Smith

There’s an ultimate je ne sais quoi to it all. It’s the tipping point where your skin fits – perfectly. It’s that inexplicable eloquence as you glide through life defying any preconceived notions of who you should be, all because you just are who you are, not a facade or a mirage, but true from the inside, out. Your core, anchored stronger than concrete, even an 8.0 on the Richter scale can’t shake you. As Nina Simone put it, “I’ll tell you what freedom is to me – no fear.” And, I’ll add that in everything you do, you don’t need to worry about any of it. Man, Woman, brothers and sisters – the je ne sais quoi of us all – just be. You.

Video:

Foul Mouth Kids

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.

The Stories We Share

By Mark E. Smith

When I entered San Francisco State University’s creative writing program some two decades ago, I did so with one goal in mind – to be a better writer. After all, writing is a technical craft – not unlike painting or music – and if you want to get better at the craft, you expand your skill set. And, I wanted to possess the largest skill set possible so that, as a writer, I could write about virtually any topic, in any form. If writing was carpentry, I wanted the skills to build anything.

Upon my first week in the program, I realized it wasn’t what I expected. The fact was, I quickly learned that the true craft of writing wasn’t about technical skills at all. Yes, as students, we’d long learned the formalities of writing, with more to come. However, what we were there to really learn was the power and universal impact of stories. We learned what it was like to be impoverished and black in the south under Jim Crow laws through Alice Walker. We learned what it was like being a disenfranchised white, middle-aged male through Charles Bukowski. And, we learned what it was like to be a teenage heroin addict through Jim Carol. The stories went on and on, and we learned that every one has a story – ones of universal impact. We learned that writing wasn’t just about a skill set, but more so a deep acknowledgment of the human condition we all share.

As students, we were required to write with courage and vulnerability, to share our stories. Writing workshops, where you critique each others’ pieces, were cathartic, safe places where we could write and share the stories in our lives. The beautiful twenty-something who seemed to have it all wrote about her struggles with self harm, cutting her thighs with razor blades. The silent guy in the army surplus jacket wrote about being raped in his high school locker room by three jocks. And the happy-go-lucky, surfer dude wrote about living on friends’ couches because he was disowned by his parents when he came out as gay. What it taught us was that everyone had a story – including ourselves – and the true craft of writing isn’t just about telling stories, but honoring them.

During that time, my twenties, I was struggling with a lot. I was trying to understand my identity as one with severe cerebral palsy, and struggling with the guilt of separating myself farther and farther from my dysfunctional family. When we go through these periods of our lives – deep emotional struggles – it’s impossible to not feel alone. It’s unfortunately intrinsic to the process. Yet, our individual struggles – read that, stories – are universal to the human condition, and whatever we’re feeling or have experienced, we’re not alone.

What I gained from attending the two-year creative writing program – and writing of my struggles in the process – was recognizing the importance and vulnerability in sharing our stories, as well as embracing those of others. While there’s a time and a place for light conversation, it’s in sharing our stories that truly connects us.

Since that time, not the writer in me, but the person in me, has lived a life of connecting with others – through stories. Of course, I’ve shared mine countless times, as cerebral palsy can’t be hidden and understandably can become a topic. However, what’s shaped my life are the stories that others – with trust, courage and vulnerability – have shared with me. See, I’ve learned that no one’s story is more or less significant than another, just different. And, we intrinsically relate to them all. Pain, joy, sadness, fear, courage, failure, success, heartache, love, guilt, pride, resentment, elation, self-doubt, confidence and on and are all emotions that we universally share. They unite us.

However, sharing our stories does more than unites us. The process has far more power. Sharing our stories can heal, uplift, inspire, empower, and most of all the process shows us we’re not alone.

I don’t know what your story is. Maybe it’s one you’re struggling with alone. Or, maybe it’s a story that can help another person in your situation. Share your story. Let it out to someone, somewhere, in a safe place, where I promise it will change both your lives. None of us need to be writers to be courageous and vulnerable in sharing our stories. We just need to be ourselves.

Full-Court Throw

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 Solemnity of Serving

By Mark E. Smith

A presidential candidate was asked if it was difficult to balance service to others with self-gratuity – that is, serving others simply to serve others versus serving others to benefit oneself in return?

The candidate’s answer was honest, but unimpressive: “I’ve always struggled with that balance.”

Ultimately, by nature, we can’t fault any politician for being self-serving. After all, politicians need the support of others to achieve their goals – they must, even with the best of intentions, give in order to get, as well as vice-versa.

In our personal lives, we’re far more fortunate. We can serve others simply to serve – among the truest liberties in life. See, when we give of ourselves, there’s no catch, no other concern, just the opportunity to serve another, and that’s the ultimate freedom – no strings attached.

Now, some might argue that the personal satisfaction of serving is self-gratuitous. It can be, but it doesn’t have to be. I assert that in the truest sense, serving is an action made, then released. It doesn’t change how we feel about ourselves or effect our lives – we just carry on.

Interestingly, religions differ on this topic. Under Buddhism, the Law of Cause and Effect says, “The kind of seed sewn will produce that kind of fruit,” so simply doing right by others is doing right by ourselves – that is, we can’t escape karma. Serving others is to serve ourselves in the end.

Christianity, however, has another take on how we should handle serving others. In a translation of Matthew 6:3, it’s said, “But when you do merciful deeds, don’t let your left hand know what your right hand does,” meaning that good deeds should be kept secret, not done for praise.

In the end, serving others has a very simple universal truth: Whether you’re a politician, altruist, Buddhist, Christian or one of a million persuasions in-between, serve others because it’s the most sincere act we can extend to other human beings.