vulnerability – Page 7 – PowerchairDiaries

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 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.

Origins of Kindness

By Mark E. Smith

We hear of “random” acts of kindness, but more aptly, they’re usually “intentional” acts of kindness.

I often write about coming up the hard way, and that experience, of course, has shaped who I am, feeling extremely blessed for however little or however much I have in all areas of life.

I’m very fortunate to have the means to eat out – especially since it’s something I enjoy. After all, what’s more relaxing after a day at work than having a fine dinner somewhere? And, my wife and I have our favorites, including the restaurant our acquaintance, Gary, owns. The food’s great, the staff and patrons know us, and they always fit us in, with or without reservations. We’re just comfortable there.

As a result, it’s become a tradition that we go to Gary’s place for his Christmas Eve buffet – an unbelievable seafood spread. We get dressed up, settle into our table, and have a terrific festive holiday dinner among our family and those we know.

This year, however, was an exception. Indeed, we got dressed up, had a fantastic feast, and exchanged holiday greetings with the staff and those we knew from the community. But, when we asked for the bill, there wasn’t one.

See, Dr. Freiman, who grew up with Gary – both my age – sat with his family at the table next to us. And, as he and his family left, he quietly paid our bill. Why would Dr. Freiman do that?

Well, there’s more to his and Gary’s story than most know. Dr. Freiman, an ENT specialist, and Gary grew up together. In looking at either one today, you’d never guess their upbringing. After all, one’s a doctor and the other is a very successful chef.

Yet, they grew up together in the worst of the worst conditions, living in dive motels, neglected and abused. As Gary told me, he was as shocked as anyone years ago when he was working as a chef at a wedding, only to find out the groom-doctor was Mike Freiman, the kid he tagged around with in school. “Neither of us came from a real home and we were always in trouble together,” Gary told me. “It’s a miracle we each made it to this point.”

Gary knows a bit about my story, past and present, and as kindred spirits, we know the unsaid code that Dr. Freiman clearly also knows: When you’ve survived your knocks in life and achieve some level of success, you give to others, both out of empathy in having once been where some are, and in recognition of where others have gotten, as well.

As one who’s always felt it’s better to give than to receive – being fortunate where I’ve gotten in life – it was a true honor to receive such an understanding gift this past Christmas Eve by Dr. Freiman. Whether giving or receiving, we are truly blessed in the process.