facing challenges – Page 9 – PowerchairDiaries

Meals or Feasts?

By Mark E. Smith

My life has been somewhat extraordinary in that I’ve known both sides of human experience – that is, what it’s like to live with exceptional adversity versus what it’s like to experience great fortune.

However, while my own life has made me acutely aware of extremes, it’s the individuals I encounter that have raised a profound question for me. In parts of my life, I interact with those facing tremendous adversity, while in others, I interact with those of great fortune. Overall, I’ve witnessed that people are people, and no matter how different two individuals’ life paths are, there’s a uniting humanity – people are people.

Yet, I’ve also witnessed a juxtaposition that’s intrigued me. If I shared that I knew a 40-year-old mother with progressing ALS who was bitter at the world because she would not live to see her children graduate high school, we all could empathize with her. On the other hand, if I shared that I knew a 40-year-old mother of great health and wealth who was dedicated to serving her community, we could empathize with her, as well. In both these scenarios, we could say that both women are doing the best that they can. And, indeed, in some form, I’ve known these women – and likewise men in the same situations – many times over.

But, here’s where the intriguing juxtaposition comes in. I similarly meet those facing tremendous adversity – literally that 40-year-old mother dying of ALS – who approaches every day with grace and joy, appreciative regardless of the devastating blow life has dealt. Meanwhile, I encounter those who are extremely fortunate – with health and wealth and thriving lives – who are bitter, jaded, living with a miserable sense of entitlement, as if the world owes them. How is it, then, that someone facing unimaginable adversity in life can live with such grace, while by contrast, I’ve more than once witnessed someone of great health and wealth throw a tantrum over the smallest, most trivial circumstance? How can this juxtaposition logically occur?

The answer is, gratitude. See, gratitude is the great equalizer – and you have it or you don’t. If you have it, it’s irrelevant what your situation is in life, as you’re grateful regardless of any circumstance. However, if you don’t have gratitude, you’ll conversely be bitter and jaded no matter how fortunate your plight. In this way, what life deals us has no bearing on our outlook – unimaginable adversity or great fortune are of no matter. What dictates our perspectives is whether we have… gratitude.

Author Melody Beattie writes, “Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend….”

Therefore, if we are to understand the true origins of fulfillment in our lives and whether we find true contentment, we don’t need to weigh the scales of adversity versus good fortune. Rather, to understand fulfillment and contentment in our lives, we merely need to consider the levels of sincere gratitude we possess.

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.

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.

From Dirt to Gold

By Mark E. Smith

A gracious colleague noted that I’m very skilled in business at seeing the positives and negatives in situations, and then pragmatically steering both toward the positive.

I replied, “That’s not a business skill, that’s a life skill that I’ve learned from disability experience, where if I didn’t know how to work with adversity, I wouldn’t be sitting here.”

In 1993, when Britain’s James Dyson introduced his first vacuum, it had a clear dust-collection canister of great controversy. Vacuums had always had bags, and the vacuum industry all said no one would want to see the dirt they vacuumed up in a clear canister. It was a totally valid point, proven by market research. Dyson had two choices: he could avoid the potential market controversy by enclosing the canister or he could see it as a counter-intuitive selling feature.

In among the most brilliant moves in business history, Dyson saw the controversial clear canister not as a detriment, but as an advantage. He wasn’t deterred by the market research, but embraced it proving his vacuum was unique. He used the clear canister to show consumers how his vacuum’s cyclonic action picked up more dirt than other vacuums – and consumers were mesmerized by it. People loved seeing how much gunk they vacuumed up! Within 18 months, it was the best-selling vacuum in the U.K., and today, virtually all vacuums have a clear canister.

So often when we face obstacles, we’re taught to work around them. However, working around obstacles rarely results in our greatest successes. Rather, working with obstacles is where success comes in. If you can succeed by addressing obstacles head on – like showing dirt in a vacuum canister instead of hiding it – that’s where ultimate success is found.

Many years ago, based on my disability, I couldn’t button buttons, so it was suggested that I have all of my clothing buttons replaced with Velcro. Velcro would work, except for one aspect – it wasn’t truly overcoming the obstacle, as I still couldn’t button buttons. I used thick, stiff wire and put a loop on one end, and discovered that by pushing it through a button hole, looping on to a button and pulling it back through, I could button buttons (other such tools are now sold). As a result, I could button any button. By addressing buttoning head-on, I solved it rather than avoiding it. Velcro was no solution; finding a way to button buttons was!

What I’ve learned is that life gives us obstacles no matter our circumstance, and we have the choice to use them as a deterrent or an opportunity. Maybe it’s based on my disability experience, business skill or smart-alecky tenacity, but when life presents me with obstacles, as it does all of us, I try my hardest to turn that canister of dirt into a pot of gold – obstacles into advantages, that is!

The Life and Death of Humor

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

By Mark E. Smith

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

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

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

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

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

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

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

Broken Pianos

By Mark E. Smith

The story of American jazz piano great, Keith Jarrett’s, 1975 concert in Cologne, Germany, is legendary. See, Jarrett was scheduled to perform solo that night at the Opera House in front of a sold-out crowd of over 14,000 people, to be recorded live for an album.

However, when Jarrett arrived at the Opera House the afternoon of the concert – exhausted, with a bad back from touring Europe – he was horrified to find that they didn’t have his required piano. Instead, they had an old, small broken piano – not concert worthy.

The young promoter called around, but couldn’t come up with the needed piano. The best she could do was get the old piano tuned, but the upper keys were all but useless and the pedals didn’t work. Jarrett was done, insistent that he couldn’t perform without a proper, working instrument.

With 14,000 people waiting until close to midnight and recording equipment set up, the young promoter begged Jarrett to perform. With nothing but tenacity, Jarrett took a leap of faith in himself and walked onto the stage, standing behind the tiny, broken piano. The packed Opera House was silent.

Jarrett focused on only the piano’s center keys, the only ones that worked, and pounded them with ferocity that allowed the tiny piano to project, rearranging the songs in real time with each key strike. The result was over an hour concert that ended in a standing ovation – and became the best selling solo jazz album of all time, The Koln Concert, with over 3.5 million albums sold.

How often do we, in our own lives, find ourselves in Jarrett’s situation, seemingly not having what we need to succeed? How often do we only see limitations in the face of adversity? But, more importantly, how often do we have the tenacity and courage to do as Jarrett did, and not dwell on what may limit us, but strive to find that which may elevate us?

I’ve had my share of adversity in life, as have many who I’ve known. After all, adversity doesn’t discriminate. What I’ve learned is that when we succeed in adversity, we do so by using what we have, ignoring that which we don’t. We’re fearless experts at playing broken pianos.

It’s trite, cliché and undeniably true: Never let what you can’t do stop you from what you can do. There’s stunning form waiting to be played on our own broken pianos.