Living with disability – Page 4

Life Vows

By Mark E. Smith

We’ve all heard at least some version of among the most traditional wedding vows in modern western culture:

I offer you my solemn vow to be your faithful partner in sickness and in health, in good times and in bad, and in joy as well as in sorrow. I promise to love you unconditionally, to support you in your goals, to honor and respect you, to laugh with you and cry with you, and to cherish you for as long as we both shall live.

And, for those among us who are married, ideally we live up to those vows, at minimum.

However, here’s an intriguing question – why don’t we practice such vows toward ourselves, as individuals? Put simply, why are we so reluctant to apply such unconditional love to ourselves? Why don’t we consistently honor ourselves in sickness and in health, in good times and in bad, and in joy as well as in sorrow, loving ourselves, supporting ourselves in our goals, to honor and respect ourselves, to cherish ourselves?

I see the struggles of this every day, on a multitude of levels, from family to friends to within the community. Countless life experiences can throw us into emotional tail spins, where our identity – namely, self-worth – degrades. Why is that? After all, when someone we love faces challenges, we embrace, love and respect them. We’re remarkably unconditional when it comes to applying the practice of vows not just toward our spouses, but toward everyone around us. Yet, we’re not so generous toward ourselves, are we? We can see the beauty in others, but not ourselves. We can note the strength in others, but not ourselves. We can compliment others, but not ourselves. And, alas, we can love others unconditionally, but not ourselves.

A lot of this is conditioned into us, whether by a society that suggests it in so many ways – from airbrushed models in magazines to the notion of thinking highly of oneself is “arrogant” – or by being emotionally abused and convinced we’re not worthy. In fact, a startling statistic in the U.S. is that 60% of us have been emotionally abused to a degree that diminishes our self-esteem. When we add all this up, it’s clear that we live in a society where little priority is put on valuing “oneself” in sickness and in health, in good times and in bad, and in joy as well as in sorrow. The fact is, many of us are conditioned to not feel good enough, no matter the circumstance.

And, it has to stop. We owe it not just to our spouses and others to practice vows of unconditional love and acceptance, but to ourselves. None of us are perfect, but why not commend ourselves for trying our best at what we do? We don’t invite adversity in our lives, so why not allow ourselves to recognize all is not our fault? We all have weaknesses, but why not be proud of our strengths? No one is better than another, but why not embrace our uniqueness? We love others, so why not love ourselves?

As one who’s struggled with all of the above, I can tell you that making that shift – that is, making the vow to love and honor yourself in sickness and in health, in good times and in bad, and in joy as well as in sorrow – doesn’t just improve your life, but also everyone’s life around you. When we humbly understand all that we are worthy of, it makes it so much easier to smile and offer all of us to others in ways that enrich the lives of both.

I know it’s extremely difficult to heal all of the wounds that blur our vision to how amazing we each are, how the words of affirmation we hear from those who know our beauty somehow don’t appear to us in a mirror. And, yet, the true “us” is there, to love in sickness and in health, in good times and in bad, and in joy as well as in sorrow. Yes, it’s in honoring such vows toward ourselves that not only elevates our lives, but it’s also the key to elevating our vows toward all others. Let us vow to love and cherish – including ourselves.

Winds of Life

By Mark E. Smith

If you’ve ever sailed a boat, you know it’s a combination of skill, faith and patience. Life, I’ve learned, is a lot like that, too. Many times, I’ve set a course in my life, where my abilities were only part of the equation, and having faith that it would all work out in the end – like counting on an unpredictable wind, far from landfall – was all I had to trust.

What might surprise you is that trusting in the wind of life has never failed me. As long as I’ve applied myself – like a sailor heading to sea at the helm – the winds of life have always come to carry me on my course. In the process, I’ve learned to be vigilant and have faith and patience – sometimes maintaining seemingly irrational faith and indomitable patience. But, the wind – that wind! – has always ultimately filled my sails.

Sure, I’ve found myself adrift at points in my life. As Coleridge put it in the Rime of the Ancient Mariner,”Water, water, every where / And all the boards did shrink / Water, water, every where / Nor any drop to drink.” We’ve all found ourselves adrift at points in our lives, waiting, wanting, needing a metaphorical wind to fill our sails and set our lives back on course. Maybe it was after a break-up or when we were broke or while looking for a job or, or, or…. When is my life going to get back on track?!

I’ve been there. And, what I’ve learned is that as long as we stay the helm – holding the course with faith and patience – we are never let down. The wind always comes, always fills our sails, and we always reach our destination, our purpose. We may encounter lulls and rough seas, adrift for weeks, months or years; but, eventually – hands blistered from grasping the helm – the wind comes.

For some in life, they never leave port, not wanting any risk. But, they never reach their intended destination, their potential. For others, they lose hope, giving up the ship, likewise never reaching their destination, their life’s purpose. However, for those among us who have vigilance, faith and patience to stay the course, the winds of life will take us to destinations beyond our dreams. All life asks of each of us is to take the helm and trust that the wind – although often unpredictable – will lead us through whatever journey we are meant for….

The Wet Pants Approach to Life

humility word in mixed vintage metal type printing blocks over grunge wood

By Mark E. Smith

A friend told me how she knew her fiancé was originally the right guy for her. They pulled up to a grocery store in his car, and she insisted that he go in alone. He never shopped without her and found her insistence odd. Upon his wondering what was going on, she burst into tears, explaining that due to her paralysis and related bladder control issues, she’d wet her pants.

She shared with me that, in the moment, she felt so embarrassed and humiliated, and didn’t know how he’d respond? After all, they’d only been dating a short time.

He hugged her, told her it was alright, then leaned back in his seat, closed his eyes and hummed. She asked what he was doing, and he explained that he was wetting his pants, too, so they could be together in the moment. They both burst out laughing.

What my friend’s story illustrates is what we all need in our lives and relationships, regardless of disability: humility and humor. Truly, if you can live just in that space – with humility and humor – you can gracefully move through even the most awkward of life’s moments.

So often we fall into modes of pride, perfectionism and self-consciousness, and everyone is defeated by it. Perfection in life is a myth, and when we fight against that reality – clinging to false senses of Pride – we and those around us lose. The destructive emotions range from feeling shame to pushing others away.

Yet, when we’re humble and acknowledge that we all have vulnerabilities, and have the capacity to laugh at ourselves in the most trying times, that’s when we’re most receptive and endearing to others. After all, empathy binds two people, and when you can build that connection with humility and humor, in life’s awkward moments, it’s arguably the healthiest approach to such circumstances.

Now, I’m not saying that wetting your pants will lead to true love – although apparently it can. What I’m saying is that living our lives with humility and humor, in spite of adversity, opens us up to others, and them to us. So, let us pass on pride and portrayals of perfection, and find humility and humor in who we are – wet pants and all.

What We Might Be

By Mark E. Smith

The philosopher, Laozi, founder of Taoism, asserted, “When I let go of what I am, I become what I might be.”

How many of us have felt trapped in our existence at points in our lives, where circumstances dictate who we are? So much of our lives can be painfully defined by such aspects as our physicality, our family history, our socio-economics, and what’s projected upon us. I know, as I’ve spent my whole life as “one with cerebral palsy,” where from the moment of my birth, I was told what I am. If we go back in time, or even today, as some may still see me, seemingly incapable on realms ranging from the physical to the mental. And, in some ways, they are right. After all, as one with cerebral palsy, my wife does help me on and off of the commode, and, no, I can’t physically even write my own name.

I could have spent my whole life buying into what I am. We all could, no matter our circumstance or situation. However, there’s nothing to gain by buying into “what we are.” Rather, we have everything to gain by striving toward what we might be. I often recount the story of being thrust from an institutionalized school as a seven-year-old to being one of the first publicly mainstreamed students with a severe disability in the U.S. I had no support, but I did have two choices: I could be the child with severe cerebral palsy who many thought belonged in an institutionalized school – after all, that’s who I literally was. Or, I could push toward who I might be – that is, in my young mind, a “normal kid in a normal school.” Everyone knew what I was, but few believed in who I might be. At seven, I didn’t know who Laozi was, or even the gravity of what I was pursuing. The power of the human spirit drove me toward who I might be.

Here’s the key that I now realize: no matter where we find the courage, consciously or intuitively, we must believe in our power to rise above what we are in order to achieve what we might be. I know it’s hard. In ways, it’s easier as a child because the human spirit is naive to how brutal life can be. As adults, time can wear on us – broken and battered. Toxic relationships, dysfunctional upbringings, social pressures, and on and on can all weigh us down, teaching us what we are, in ways that defeat us instead of inspiring us. There was a period in my 30s where I looked in the mirror and saw what I was: a divorced, full-time single dad with severe cerebral palsy. That’s a grim prospect on the dating scene. What woman would ever take on that mess?

But, that wasn’t what I had to be. What I might be is a loving father, and a man who grew and learned from his past marriage, where life-long cerebral palsy instilled in me attributes of perseverance, self-confidence and empathy toward others who’ve faced adversity. Who I might be was once again what I looked toward, and while change didn’t occur overnight, it led to finding my wife and a second daughter, where my life has remained on an empowered, blessed trajectory encased by love for years now.

See, whenever we find ourselves trapped or discontent with what we are, it’s an opportunity to pursue what we might be. We don’t have to settle for where we’re at. We can strive toward what we might be. Is it easy? No. Is it scary? Yes. Might we fall short in the attempt? Absolutely. Yet, as one who’s found himself at such crossroads many times, indeed, it is only when I’ve let go of what I am that I’ve moved closer to what I might be.

One Night in Suite 500H

By Mark E. Smith

When I roll into my suite at the famous Waldorf Astoria Hotel on Park Avenue in Manhattan, around 5:00 pm, nothing seems different from any other hotel – that is, except the suite is a multi-room apartment, with lavish mid-1900s furnishings and a view straight up Park Ave. I picked the room online through my Hilton Honors reward program based on location and accessibility. Frills don’t impress me; practicality does. I need a bed and an accessible bathroom – no more, no less. That’s how I ended up here.

So, late for a dinner engagement, I dump my well-traveled adventure backpack luggage on the rug in the entry and split.

Nice suite. Who cares. I’m out of here, late for dinner.

Around 11:00 pm that night, I return to the suite with my wife and her friends and everyone who’s met up in the city, and we gather in the living room. Good friends, great conversation, New York City on a Saturday night – great times. As the late night gets later, right before crashing into bed, I wind my way to the bathroom. I pass through a huge dressing room, and stop dead in my tracks as I gaze at the truly palatial bathroom. While it’s the biggest, most lavish bathroom I’ve ever seen – gold and marble throughout – that’s not what’s stopped me in my tracks. Rather, what’s stopped me in my tracks is there’s a step up to the bathroom, steps to every feature in the bathroom, and even the commode is recessed in a tiny closet.

It’s some time past midnight, I have to use the bathroom beyond belief, and I have no access whatsoever.

In these situations, I strive to retain the dignity we all deserve. And, I need to clarify what I mean by that. Sure, I could call the hotel staff and have an entourage of them do whatever it takes to get me into that bathroom. But, at what personal price? And, why, in 2016, at arguably the most prestigious hotel in the world, at which I booked an accessible room, should I have to?

I just want to pee like anyone else, and it shouldn’t have to be an all hands-on-deck production with strangers to do so.

I pick my battle, and just want to crash into bed, so we find a water bottle, I pee in it, and go to bed. The next morning, I use the wet bar in the foyer to get cleaned up for the day. Of course, I roll down to the manager’s office, and we have a very candid and poignant talk about my experience, where the error in accommodations occurred, and how they need better protocols.

If a dude books an accessible suite, he should get that.

Disability is a fascinating life experience. It’s not just grounding and humbling, but it demands that we maintain perspective. I suppose the Waldorf Astoria exists because some people see luxury and lavishness as adding some sort of value or meaning to their lives – and that’s fine. However, for me, for better or worse, I’m just genuinely grateful to use a bathroom.

Pursuing the Ultimate in Failure

By Mark E. Smith

I don’t know if having my physical disability created my thirst for that which is difficult, or if it’s uncanny luck that as one who thrives off of that which is difficult, I was bestowed disability? Regardless, the two have formed an incredible synergy that’s fueled my life since I was a young child.

A big part of it is that, as a result, failure is innate to me. By physical nature of my disability, I fail a lot – sometimes as simple as tying my shoes or transferring from my wheelchair to the commode. Yet, what it’s taught me is that when we fail a lot, we counter-intuitively gain a confidence toward trying. If I do this, what’s the worst that can happen? I’ll fail. So what – I fail every day. But, I also have the chance to succeed. In this way, if we’re not afraid to fail, we’ll try anything, and when we’re that bold, it’s bound to lead to successes.

I witnessed this in action with my 19-year-old daughter recently. She took the bold step of doing a TED talk. Once you are selected, it takes months of work to prepare for the talk on stage. Then, when you’re up there in front of a live audience, with a huge production crew filming you, really it’s a chance for failure on the grandest scale. Some people try to cheat the risk of failure, wanting the glory without the guts. For example, at my daughter’s TED event, some other speakers used notes. However, you can’t fake risking failure, and when we do, we cheat ourselves in the end by not giving our all.

To the contrary, my daughter got up on stage with nothing but a microphone and the willingness to fail. She knew the obligation she had to herself and the audience to be authentic in every word that came not from shaky notes but the depth of her sincere heart. She was willing to risk failure in a shot at positively impacting the lives of countless others. And, that she did, arguably delivering the best performance at the event.

See, what I’ve learned is that the risk of failure shouldn’t deter, but inspire. As the adage goes, we shouldn’t dare to be great; rather, we’re great because we dare. As long as we try with absolute authenticity, we will risk failure while simultaneously setting ourselves up for success. It’s in that process of having the courage to put it all on the line – no matter transferring from a wheelchair to a commode or giving a TED talk – that our character is shown. Let us fail big and succeed even bigger because there’s nothing to gain from the safety of mediocrity….

The Greatest Election

By Mark E. Smith

I want to share with you one of the most influential, but least known, political races of all time.

The year was 1982, and it was a mid-term election amidst the first term of President Reagan. Two years earlier, in 1980, Reagan beat Carter in a landslide, 489 electoral votes to 49. There was, however, a bigger loser in that race – John B. Anderson, an Independent who garnered zero electoral votes. And, as history now shows, an even larger defeat was to come in two years, one that might even surpass Anderson’s.

By the 1982 mid-term election, a lot was at stake. The Dems needed to gain 27 seats or so to secure a majority in the House. However, down-ballot, there was a far more consequential election occurring, one that would alter my life forever: the Valley View Intermediate school elections.

See, I was on the ballot in the sixth grade, running for Vice President of School Spirit. After all, who was more fitting than me, the ever-chipper kid with cerebral palsy to represent school spirit?

Actually, Winnie, to be exact. Her name wasn’t really Winnie, but it should have been, as she was every bit as adorable and popular as Winnie from the television show, The Wonder Years. And, she was my competition.

Still, I wasn’t deterred. Like among the biggest losers of all time, John B. Anderson, I campaigned hard. I plastered the school with posters and even put a billboard on the back of my power wheelchair. I had a fighting chance, and I was going for it!

On the day of elections, I was more scared than I’d ever been. All office candidates had to give a stump speech in front of the whole school in the auditorium. As I sat on stage awaiting my turn, everything was a blur of sights and sounds drowned out by my pounding heartbeat – except for the unbelievable cheers and applause Winnie received after her speech. Then it was my turn.
I rolled up to the microphone and gave my speech – with courage and conviction – and as I finished, I realized I had no idea what I’d just said. Apparently, neither did anyone else, as they just stared, silent.

After votes were counted, I listened anxiously as the principal read the winners over the intercom system. Then, it happened – Winnie’s name was announced. No, they didn’t share the vote count – that is, how badly I lost – but some things are better left unknown.

I never ran for office again, but I say that having the courage to do so and learning humility through loss at such a young age was among my greatest victories. We can only hope that the conceding candidates in this election cycle possess the innate dignity and grace of a sixth grader.

The Ultimate Equation

By Mark E. Smith

I’ve known and heard the most inspirational speakers in the world – from Nick Vujicic to W. Mitchell. However, when I heard one of my colleagues recently speak to a group of teens, it stopped me in my tracks and gave me goosebumps. How was it that I’d never heard such profound words come from the world’s best speakers?

“Some call what I have a disability,” he said to the students, noting his going totally blind in his 20s, but now in his 50s. ”However, I just call it a ‘problem,’ because problems have solutions.”

If we expand his philosophy beyond visual impairment or disability, think how liberating that is. So many of us see any form of adversity as a roadblock, end-of-the-line, full stop. I can’t do that because of… fill in the blank. We allow adversity to stop us because we don’t allow ourselves any alternatives.

Yet, what if we follow my colleague’s astounding wisdom, where adversity isn’t a full stop, but simply a problem that needs solving? OK, here I am – how do I solve this?

That single question changes everything, doesn’t it? It takes a situation that’s seemingly out of our control and puts us completely in control. It allows us to turn pessimism into perseverance. Most importantly, it allows us to turn adversity into opportunity.

As I learned in hearing my colleague speak to the teens that day, adversity is a great problem to have – because problems always have solutions.

Pump Up The Hate!

By Mark E. Smith

Steve Aoki is among the most hated people in the world of social media. Every day there are tens of thousands of comments by his haters. Who’s Steve Aoki and why is he the object of such widespread vicious attacks?

He’s a music DJ and producer. In fact, he’s among the top musicians in the world, performing over 300 shows per year, headlining music festivals around the globe, where Guinness declared him the most traveled entertainer in the world. By all accounts, his work ethic is relentless. He doesn’t drink or smoke. He has a charitable foundation. He produces the top musical acts of our time. And, he brings joy to millions of his fans, a true superstar on stage at global venues. And, this remarkable success is why so many hate Steve Aoki.

Researchers have discovered that there’s a direct correlation between success and haters. The more successful one is, the more haters he or she will have. There’s some basic logic to it. In order to be hated, you must have merit, and the more merit you have, the more haters. On a Sunday at noon, millions are hating NFL quarterback, Ben Roethlisberger – and, it makes sense based on his success.

So, if success breeds haters, what is it about witnessing success that makes them hate? Firstly, psychologists have found that healthy, happy, successful people simply aren’t haters. If you’re satisfied with your life, you’re simply not preoccupied with others’. Rather, what they’ve found is that those who are dissatisfied with their own lives are exponentially more likely to hate those who are successful. As has been clinically put, hating the success of others is one’s own self-defined inadequacies manifesting themselves. Steve Aoki makes $23 million per year, jet-setting around the globe, filling arenas with adoring fans. That seems awesome if we’re content within ourselves. However, if we don’t feel we have the talent or drive to live a life of success, Steve Aoki proves a harsh mirror, where psychologists say that such expressed outer hatred is, in fact, self-hatred.

What’s more, many haters exhibit a defense mechanism – like an “armchair quarterback” – where they convince themselves that they know better than those who are successful, but never accomplish anything. Lots of passengers criticize a pilot, but none have invested what it takes to fly a plane. As Entrepreneur magazine put it, “…Hate is often a sign of weakness, envy and fear. Haters hate on you because you’re doing what they cannot, will not or are too afraid to attempt.”

In these ways, we know we’re rockin’ the world like Steve Aoki when we have two facets to our lives. Firstly, we feel content, passionate, and successful in our own lives. And, secondly, we observe the amount of haters growing in direct correlation with our success!

Ridding Weeds

By Mark E. Smith

Sitting on the porch with among my best friends, George, I drifted the conversation to what I’ve been dwelling on: the tiny weeds in-between the hundred-year-old stones of the walkway.

Now, all anyone has noted is the beauty of the house and its serene surroundings. And, isn’t there charm to a real field-stone walkway, weeds in-between, leading to a house?

However, to me, they were just weeds, detracting from all – and I wanted them gone. I was admittedly oblivious to much – except for the tiny weeds in the walkway.

As I thought about getting rid of the weeds for several days – a distraction I couldn’t shake – I finally had to ask myself an introspective question. With all of the beauty of the house, property, family and friends not just surrounding me, but truly blessing me, why was I so focused on something entirely insignificant like the weeds between the stones of the walkway?

No, it wasn’t because I was ungrateful or unaware of all else. Rather, I was simply doing what so many of us do at times in our lives. Instead of seeing the 9,999 aspects of beauty around me, I was focused on the one annoyance.

How many times do we do this in our lives? A friend of mine, in a much more profound point in his life, shared with me once that three years after his paralysis from a diving accident, he realized that instead of focusing on the 9,999 things he could do, his life was stalled as he dwelt on the one thing he couldn’t do – walk. He went on to share that once he shifted his focus from that one aspect of his life, to the other 9,999 aspects, the world around him changed from dark to light, where joy and love and laughter and a success re-entered.

I go back to my question. How many of us choose to dwell on the one seeming negative in our lives – at least by our own definitions – instead of focusing on the 9,999 positives? We do it in our relationships, our careers, our self-images, and on and on. Why?

It’s innately human, that’s why – and it can counter-intuitively prove a profoundly life-affirming experience. See, we are all more blessed than we’ll truly ever know, even during times of extreme adversity, and our flawed capacity to not see the 9,999 positives in our lives at times, but to find a single negative, is life’s reality check. Yes, if we forever dwell on the one negative, it will defeat a beautiful relationship or great career, diminishing all the miraculous fortune that we have in our lives. Yet, if we are self-aware, those single negatives serve as an amazing compass that points us back to where our heads and hearts belong: cherishing the 9,999 positives in our lives.