helping others – Page 8 – PowerchairDiaries

Kevin

By Mark E. Smith

As he spun on the salon chair, his joy was contagious. No one else his age, 20s, would dare spin on the chair, hands thrust in the air, yelling, “Woohoo!” but he did. Most of us would be too self conscious, too restricted by social norms. But, his authenticity allowed him to do what we’d all love to do – that is, follow our unbridled enthusiasm. Yes, he was different from the rest of us, and we were all a little jealous.

He stopped spinning for a moment, looked at my 17-year-old daughter and waived, flashing a big grin.

“I’m Kevin,” he said.

“Hi, Kevin,” my daughter replied from her seat along the front window. “I’m Emily.”

“Emily, watch…,” he replied, spinning some more, hands in the air.

He spun, and he spun, and he spun until his mother and father pulled him from the chair.

“Bye, Emily – I’ll call you,” he said, putting his hand to his ear in a telephone gesture, and we all giggled at how adorably unabashed he was, moving toward the door.

As he left, I glanced at my daughter and soon there was a knock on the window behind us. We looked, and Keven blew Emily a big kiss, promptly dragged away, smiling, by his mom.

I was immediately struck with the thought that whoever defines intellectual disabilities has it all wrong. I realized that there were a lot of us with intellectual disabilities in the salon that eve, but Kevin wasn’t one. He followed his enthusiasm, lived with an uninhibited heart and wasn’t afraid to extend love to others. Few of us could say the same.

Me Being Me

By Mark E. Smith

At 43, I’ve had my challenges in life, but with a mix of hard work, the support of others and luck, I’ve been privileged to have accomplished a bit, from fatherhood to a pretty cool career. Nevertheless, someone asked me what my ultimate dream is from here? My answer could have been related to a next career challenge or maybe a materialistic goal like a lake house. However, none of that’s the case – its all too easy, too meaningless in ways. My answer from the depths of my heart was, “I just want to be me.”

Assuming that we’re healthy, productive, loving individuals, isn’t that our ultimate dream: to not only be free within to be ourselves, but to be truly embraced for who we are by others? How many of us have felt at times that for any number of reasons – a work environment, a relationship, family expectations – we couldn’t just be ourselves? Maybe it’s a seemingly huge issue like if your family knew you were gay, they’d disown you. Or maybe it’s a seemingly small issue like someone correcting your grammar. Or, somewhere in the middle, where your love interest wants to change something about you. All of these and countless other examples prevent you from being you, and it’s painful and it’s isolating – and I’ve been there.

I had a cute conversation with a buddy of mine. He shared with me that if he could find a woman who loved comic books as much as he does, she would be his soul mate. See, he’s had girlfriends in the past who’ve ridiculed him for collecting comics, so finding a woman who loves comics would be a dream come true. Yet, that’s not truly what he needs, is it? He doesn’t need a woman who loves comics; rather, he simply needs a woman who loves him for him, comics and all. It’s what we all want and deserve: to be loved as-is.

And, that is an epic battle of the heart for many of us, where we just want to be rightfully loved as-is, where we’re perfectly imperfect and nothing about us needs to change to fit in or be loved. We just need to be us and be loved on that merit alone.

Unfortunately, others may not get that concept and so it’s up to us to set the standard and set the boundaries. I genuinely love people, and there’s nothing I enjoy more than a great conversation. I don’t care who you are, what you look like, or how you live. Assuming you’re doing right by others, I don’t want to change anything about you. I just want to know the real you.

It’s this way of embracing others that I more and more expect in my own life. Regardless of the situation, I’m just going to be me as authentically as possible. I don’t need to prove anything or be anything – I just need to be me. And, when I’m not good enough for someone or criticized for just being me, I’ve developed the strength to put the onus back where it belongs – on the person doing the pointing.

I am me, you are you, and for anyone who wants to see flaws in us or seek to change us, well, we need to hand him or her a mirror and go about being just who we are: perfectly imperfect, as-is.

Not Different But Authentic

By Mark E. Smith

I had the privilege of being at a public venue with a five-year-old and his mother. The little boy uses a power chair due to a severe form of muscular dystrophy – and, man, he’s a go-getter! He’s happy, adorable, and a people magnet. And, everyone at the event saw what I saw: An adorable little boy with the world at his finger tips.

Yet, as he was literally surrounded by crowds who thought he was the cutest kid ever, there was a side that many didn’t know, nor wanted to know. Everyone wants to be inspired and delighted but a cute kid buzzing around in a power chair being… well… a kid. After all, it’s painful to think of any other possibilities, that maybe his life isn’t what it seems, that it might be disturbingly complex, something no child should experience.

And, so, as he charmed the crowds, I was with his mom, knowing the whole story. The seemingly care-free little boy averages one hospital stay per month, sleeps hooked up to a breathing machine, and he must be turned every few hours to keep his lungs clear at night. For his mom – single, with three children – this means around-the-clock care. And, get this, she works from 12:00am to 3:00am as a reservations clerk from home to help make ends meat. The carefree child and family that all assumed, in fact, has unfathomable challenges every day. I discussed the challenges with the mom and gave her a hug, and she got a bit teary-eyed.

How many of us can relate to this story? How many of us gloss over the challenges of others because they’re too painful to learn the realities? How many of us hide our own struggles because we don’t want others to see us as different, to know how difficult our lives really are?

But, we all have struggles. And, when we don’t recognize them in others or disclose our own at appropriate times, a facade goes up and we don’t make connections to the depths that our humanity allows. No, we shouldn’t then treat each other “differently,” but more authentically.

My point is, let us strive to recognize and embrace the entirety of others, and allow others to know the entirety of us, struggles and all, where adversity isn’t ignored but unites.

Righting Wrongs

By Mark E. Smith

From the back of the concert hall, I see my daughter in the very front, standing on the choir risers. Even though the distance is far, we make eye contact and I smile big….

Often, it’s our obligation to make things right. If we don’t, then we, too, are perpetuating a wrong or injustice, further harming others. No, I don’t mean make things right because we’ve intentionally done wrong. Rather, I mean that if there’s a cycle of dysfunction, we must have the courage, wisdom, and tenacity to say, Enough! This destructive pattern not only stops with me, but actually changes with me. It’s a really powerful process where you, as a lone person, can change your life, your family tree, and the lives of many around you.

We unfortunately are cyclical creatures, following the pack. Although we have free will and astounding amounts of opportunity, we rarely use it. We know that our life paths are alarmingly dictated by those of most influence in our lives. The surest way to be a teen parent is if your parents were teen parents. The surest way to become an alcoholic is have parents who were alcoholics. And, the surest way to being a terrible boss is to be groomed by a terrible boss. These risk factors create systemic, generational wrongs – and they go on and on.

And, it’s up to us – and only us – to stop them. No rule book said that because my parents were uneducated, impoverished, alcoholic-addicts, I had to follow that path. Sure, statistics said I would. However, I’m not a statistic. I’m an individual. And, I’ve long known that I alone had the power to right the wrongs in my life – and I continue working at that every day. This is my life and no one dictates its potential but me.

Breaking the cycle isn’t easy. I’ve been there, and it’s a never-ending process. It’s a difficult journey because there’s no road map and usually no support. It’s like walking on ice for decades, where as long as you stay up, you’re fine, and the fear of losing footing keeps you laser focused on every move you make. Yet, the struggle is motivating, righting wrongs is empowering, and breaking cycles is liberating. You may have been born into it, but you can likewise grow out of it. Heritage, genetics, environment, upbringing – you can be more than all of it. Right the wrongs, break the cycles, and live to your potential.

…And, my daughter – born to me, where my examples of fatherhood were grim and bleak – smiles back as the choir begins to sing.

Confessions of a Bad Alcoholic

To John, February 5, 1951 – July 24, 2010

By Mark E. Smith

If you’ve read the research of recent years, then you probably already know about me: I’m an alcoholic.

Indeed, the medical establishment has concluded that alcoholism is hereditary – that is, if your family tree is lined with drunks, you’re a drunk, too. Or, you’re at tremendous risk of being a drunk. Walking past a bar or liquor store is like a metal shaving passing a magnet – it wants to suck you in!

For me, being an alcoholic is torturous because I think it’s the only thing I’ve failed at. I mean, I’m a bad alcoholic – really bad. My parents, grandparents, great grandparents and probably their parents were great at it. I mean, my mother and father had it down to a science – it’s not easy losing everything, including your life. But, me, I’m a terrible alcoholic. I’m so bad of a drinker that I haven’t drank today, nor did I drink yesterday or the day before or the day before or the day before or the day before….

But, my alcoholism even gets worse, pathetic, really. I’ve never hidden bottles, lost jobs, sobbed, Please take me back, ruined a wedding or child’s birthday party, bathed in cologne, slept on the front lawn in my clothes, wondered how my car keeps getting smashed up, vomited blood, feigned vertigo, passed out with a lit cigarette and burned my fingers, lied to everyone about everything, stole money from my child’s piggie bank, stood with belligerent narcissism before a judge, drank because of this or that, drank vodka from a water bottle at church, hugged a tree while the Earth spun at tremendous speed and I urinated on myself, or explained to a bank teller why my signature doesn’t match. Yes, I’m a terrible alcoholic.

However, here’s what I’m really good at: a little thing called personal accountability. Unlike the color of my hair, hereditary doesn’t dictate jack squat when it comes to my being an alcoholic or not. Life gives me free will to choose my path. And, while I understand the science, it’s 100 percent my choice to drink or not to drink. My mother did nine months in jail due to her third DUI, and upon being released, she stopped by a liquor store on the way home and downed a pint of vodka. Time and time again, I’ve watched people around me choose to re-elect life-destroying alcoholism, while others choose sobriety (and the science behind addiction recovery shows that the only time alcoholics maintain sobriety is when they literally choose to).

In this way, I’m among the worst alcoholics you’ll ever meet because I’ve turned my back on my own heredity.

Kids Be Kids

By Mark E. Smith

As a classically-trained writer, I understand words – their efficacy or impotence, the way they twirl off of the tongue and echo in the ear. Words are powerful, captivating, emotive. And, sometimes, words are defining, both in the positive and negative.

For some time, as a writer, as a parent and as one with a disability – but, really, just as a person – I’ve been struggling with three words that we use to define what I’ve come to know as an ambiguous, possibly specious term: special needs child.

I, of course, understand our social definition of a special needs child, that of a child with a physical, emotional or intellectual disability. But, is it – special needs child – a logical term to use? I mean, I’m not questioning it from a political-correctness or ethical perspective. I simply question if the label is logical?

And, I don’t think it is. After all, have you ever met a child who didn’t have special needs? Of course not. If we truly acknowledge what each child in our life needs, every child is a special needs child. There are eight children in my close family, and they’re all so unique in character and at different stages from one another that each one has special needs. Why only project “special needs” onto children who have disabilities when every child clearly has special needs?

The label also represents a type of reverse discrimination that’s unfair to all children. If you’re with several children in public, and one has a disability, adults often fawn over the child who has a disability and ignore the other children. Yes, such adults mean well, but they’re doing more harm than good. Such situations inadvertently patronize disability and ignore others – everyone loses.

Instead, let’s see kids as kids. Each is special and unique and has needs, and should be recognized as such. Most importantly, let’s drop the labels altogether, and just let all kids be kids.

The Tortoise Mindset

By Mark E. Smith

No matter how many times I’ve read Aesop’s fable, The Tortoise and the Hare, the tortoise always wins. Logically, at some point shouldn’t the hare win? After all, the hare is physically faster.

The answer is, no – not in the fable and not in life. Aesop, a slave in ancient Greece in the 5th century BC, was onto something: Dedication and perseverance always pay off in the end. Think about every aspect of your life, from health to career to relationships to finances – does taking the easy way ever work in the long run?

Never. The University of Wisconsin did a study (one example of many) on how long it takes to get in true physical shape. After six weeks of rigorous training, there were no results seen in the sample group; three months showed progress; but, it wasn’t till one year, then four years that there were significant physiological changes. Everyone wants a quick fix to shed those pounds and have six-pack abs, but there’s no such thing. However, you can absolutely do it if you have a tortoise mentality, where dedication and perseverance will pay off over years.

Want to be a millionaire? Maybe winning the lottery, flipping houses or playing the stock market is the ticket. No, the hare loses again. In the U.S., tortoises get rich. The average millionaire is 57, works over 50 hours per week, has a graduate degree, and is first-generation wealthy. What’s been their number one wealth-building tool? Saving 20% of their monthly take home pay over their career. Put simply, you get rich over decades, not overnight.

Of course, in relationships, the hare must win, right? Love at first sight rules all. Statistically, not so. See, your odds of staying married increase if you date for at least a year before tying the knot, and those who get married around age 30 are much more likely to stay married than those who get married younger. Want the healthiest marriage? Be a tortoise and take things slow and steady.

I live and work in the world of disability experience, where challenges abound for many of us. And, what I’ve learned is that rehabilitation doesn’t stop when released from the hospital; rather, it’s truly just beginning. There are no quick fixes, and some skill sets – from the physical to the emotional to the mental – can take decades to master. Heck, every morning I still work on the coordination needed to tie my shoes and button my pants– after over 30 years of trying. Yet, it’s the tortoise mindset that keeps us striving. If we simply stay dedicated and persevere, we will succeed in one way or form. It can take 20 or 30 years, but success will come.

The examples go on and on, but here’s the point: there’s literally no secret to success. Success isn’t luck of the draw or magic. We need only to look to Aesop’s fable of the tortoise and the hare – a slave’s philosophy from ancient Greece – to know that success is a marathon, not a sprint.

The Real Investment of Complex Rehab Technology

By Mark E. Smith

I strive not to overlap my print writing with my online writing because, really, there’s too much of my work floating around the literary world as it is. How much of me can any one reader take? However, I’m crossing my own boundaries and linking you to a very poignant piece in this month’s print edition of Mobility Management Magazine. You’ll learn a bit more about my life journey — and hopefully a bit more about others’ and your own. http://mobilitymgmt.com/Articles/2014/06/01/Complex-Rehab-Technology-Investment.aspx

The Effort of Faith

By Mark E. Smith

When I look at the three biggest challenges that have spanned my adulthood – writing, disability and romance – there’s a common denominator that forever keeps me pushing forward during both highs and lows: Faith.

Now, I don’t mean faith in religious terms – although, many people do, and that’s great. Rather, faith for me is belief, it’s an innate understanding that no matter what I face, I will pull through ultimately to my own betterment – that is, the light will be brighter at the end of each tunnel.

Faith for me, however, doesn’t function on its own. Faith directly correlates with effort. When I was in my early 20s as a young writer, my rejection ratio by magazine editors was around 20 to 1. For several years, my mail box was a literal daily dose of rejection, seemingly indisputable proof that I was failing as a writer. Yet, I simply had faith and I used all of that rejection as inspiration. I knew I wanted to write and I had faith that I could make it as a writer, so I put effort behind my faith and went to college to learn formalities and hone my craft. It’s taken over two decades, but my closet shelves are now lined with over 1,000 formal publications that I’ve been published in, plus all of my books and countless essays from the web. I went from spending my days seemingly writing for the sake of rejection to now editors offer me assignments. The factor of success has been having faith that I could be what I believed, and then applying the effort to become that success.

Disability and romance in my life have followed the same faith-based path. At many points individuals, situations and society have told me that I’m lesser, that I couldn’t achieve based on my disability. But, my faith has ultimately had the final vote. Dismiss me or count me out, but my faith assures that in the end, with effort, I will overcome. I may face challenges, but my faith dictates that I will succeed in the end in spite of them.

Of course, the struggle to find enduring love is a universal, epic one. Think about the canon of literature, art, music and movies that address our desire for enduring love. And, I’ve faced that struggle, too. Yet, I’ve had faith that as long as I live my best, with effort and awareness, enduring love will sustain itself in my life.

I put it this way: Life is a roller coaster – the highs are exhilarating and the lows are frightening. Yet, there’s a surefire way to even out the course. It’s called faith. With faith, and effort behind it, it’s impossible to get emotionally mired in even the bleakest situations because no matter what all signs may tell us, there’s only one truth: We will ultimately overcome. Have faith, put effort behind it, and believe that you are intrinsically capable of living the life of your dreams.

Working Class Hero

By Mark E. Smith

John Lennon coined it, and I’ve always believed in living it – as a father, as a bread winner and, yes, as one with a disability: A working class hero is something to be.

See, to me, a working class hero isn’t about a literal vocation or social class, but about drive and determination. Are you strong enough every morning, regardless of the challenges you face, to put your boots on and go into your day willing to do whatever it takes to get the job done, with little reward beyond knowing you’ve done right?

And, like I said, this purest form of heroism isn’t about vocation or social class. Yes, the roofer who’s on a roof in July, working 12 hours a day with 130-degrees radiating around him, all to support his family, is a literal working class hero. But, so is a full-time single parent. And, so is one sustaining sobriety. And, so is one thriving with a disability. Although each of these examples are very different – and you can insert any life path into the list that requires internal tenacity to succeed – they all demonstrate an extraordinary work ethic, they all demonstrate quiet, dignified heroics in everyday life.

And, there’s a certain rebellion to being a working class hero, where when life presents roadblocks that others don’t have the strength or courage to knock down, you utter a barely audible F-you, and fight your way through. Working class heroes punch adversity in the face and proceed on.

I want to introduce you to a working class hero of mine, Scott Belkner, who puts on his boots every day and just goes to work. There’s no one motivating Scott but Scott. He’s not someone you know, no fame or money. But, he demonstrates an internal work ethic that demands respect, that sets the bar for how so many of us should approach our lives.

Watch Scott’s story, and I bet he becomes a working class hero of yours, too.