vulnerability – Page 5 – PowerchairDiaries

A $20 Christmas

By Mark E. Smith

Through my six-year-old eyes, it seemed like a Christmas miracle. One day it was a drugstore parking lot, and the next eve it was a forest of Christmas trees, with strung lights and sawdust covering the pavement like snow. Christmas tree lots have long been common; but. based on my age and where my family was in the course of our lives that year, made that one tree lot appear as a beacon of hope to me when I first saw it through the window of my mother’s old station wagon.

It was a tough year for my mother, brother and me. No, it wasn’t tougher than any other; it was just tougher in a different way. We were used to being broke. We were used to volatility with my parents. And, we were used to not having much of anything, including at Christmas. However, that year, my father was long gone, my mother was drinking more than ever, and the only good fortune I recall was that a church left several boxes of food on our porch at our little rental on Robinson Street.

But, my mother somehow saved $20, which wasn’t just a lot of money in 1977, but a fortune to us. She loaded my brother and me in the station wagon and drove us to that magical Christmas tree lot. It would be a great Christmas after all – food and a tree. We didn’t want for anything else because just those two aspects, we were warned by our mother weeks earlier, may not happen that year.

We picked out a wonderful tree, and as my mother reached in her jeans’ pocket to get the $20, it wasn’t there. She searched her other pockets, then her purse, then the car, then the lot. But, the $20 dollars was gone. She’d downed a half-pint of vodka before leaving the house, and as the frantic search for the $20 transpired, she became increasingly drunk – stumbling, crying. The gentleman at the Christmas tree lot remained silent as she begged him to let her take the tree. My brother and I likewise remained silent as Mom drove us home without a tree.

Christmas was never normal in our family before or after that. My mother was never sober, and while my friends’ trees were piled with presents, ours was often scarce. Still, we were lucky to get a new winter coat and school clothes most years, sometimes something we wanted, as well. Mom at least always tried in her own ways.

Still, I can never defend my mother’s life choices. Her never being sober on a single Christmas will always be inexcusable to me as a son and a father. Yet, all of those Christmases growing up with my mother taught me invaluable lessons about what Christmas should be. Christmas should be about joy, not struggle. Christmas should be about people, not presents. And, Christmas should be about peace, not volatility. I didn’t have those growing up, but I’ve been blessed in my fatherhood that I’ve been able to bring those attributes to my own family’s Christmases – and along with the love of those around me, a warm meal and decorated tree remain all I could ever wish for. Like my mother, I, too, try in my own ways.

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….

Emily’s TED Talk: Video

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.

Life Isn’t Easy, But It Is Good – Spoken Word

The Power of Voice

By Mark E. Smith

What is the difference between speech and voice? Speech is the articulation of sound, and when those sounds are put together in a normative way, the ability to communicate audibly with others occurs.

However, speech in our lives is very different than voice. Speech is descriptive, whereas voice is emotive. Speech says what’s obvious, voice expresses what’s not. Speech says, My parents passed away when I was in my 30s. Voice says, Although my relationship with both my parents was never healthy, and I long ago came to terms with that, it remains a surreal thought over a decade later that they’re not on this Earth any more – the phone will never ring with a long-overdue call from either of them. Indeed, it’s voice that gives us the ability to express ourselves far beyond the basics of speech.

Interestingly, in knowing peers with progressive conditions – ALS, MS, and such – who “lose their speech,” they’ve often shared after moving to a communication device that it wasn’t the literal loss of speech that was so devastating, but the loss of voice – that is, the loss of communicating emotion to others. It’s one level to lose the ability to ask for a glass of water; however, it’s a profoundly deeper level to lose the ability to spontaneously say I love you to a spouse, or tell a daughter how proud of her you are. That’s voice.

Regardless of our situations, using our voice can likewise be a struggle. The foremost reason we squelch our voice – albeit in the intimacy of a relationship or the public venue of a stage – is out of fear of rejection. Why don’t we tell our partners how we’re really feeling? Why don’t we speak up in that class, meeting or crowd? Why do we prevent ourselves from expressing our voice – what we really want to say – in any circumstance?

The answer is, we fear the rejection that may come with using our voice. However, here’s what’s amazing: we’re never rejected in the end when it comes to using our voice. It may take initial courage to use our voice – sometimes stomach-wrenching courage – but the result is empowerment.

Now, using our voice can seem dangerous. Do I really want to tell my spouse I’m unhappy in our relationship? However, nothing can change unless we change it, and our voice is the ultimate tool for that. Situations may be difficult, but squelching our voice hurts us more. There’s nothing more empowering and liberating in the end than expressing our voice.

The other miraculous effect of voice is that it unites. Shame, guilt, embarrassment, sadness can all squelch our voice. Yet, using our voice to openly share the origins of such emotions can not only, again, liberate us, but can help others. We all have a common humanity, and we’re not alone in our experiences – but we can feel alone. Voice can be the bridge that not only connects us through shared adversity, but leads us through it. Voice allows us to hear someone else’s story and realize that it’s our story, too – we’re not alone.

Voice is among the most powerful tools that we have. Like all powerful tools, voice can seem scary to use. Yet, when we have the courage to use our voice in sincere, constructive ways, it’s life-changing – both for us and others. After all, when we share our voice, we share our common humanity.

Cerebral Palsy and Cigarettes

By Mark E. Smith

I don’t believe in self-confidence or ego. Those can waiver, be swayed or mislead us. What I believe in is self-comfort.

See, self-comfort is when we truly accept who we are, as we are, to the core – mind, body and soul. We’re comfortable with ourselves beyond all else. It doesn’t mean we’re full of ourselves or delusional. It simply means we know who we are, from the inside, out – and live as such.

And, it makes life so much easier and successful. Rather than wasting energy on trying to be what we’re not or invest in the opinions of others, we can simply thrive by being who we are. With self-comfort, we know our value, we know our favors and our faults, and we work with it all. Life need not be a struggle; it can be as easy and graceful as a leaf drifting in a breeze.

Being a teenager with cerebral palsy taught me this lesson young. I remember being a freshman starting high school, wanting to squelch every spasm, correct every slur in my speech – an overall fantasy of being someone I could never be. I had unbelievable anxiety on the first morning of school that year. The last person I wanted to be was “the kid with cerebral palsy” at my high school. I did an awesome job at covering up all my insecurities, though, by creating the most ridiculous smoke screen – literally. …I took up smoking.

At my high school, in those days, there was a smoking section, and as long as you could score cigarettes, you could smoke. So, as the initial weeks passed, I slowly merged in with the “tough crowd” in the smoking area After all, when it comes to insecurities, there’s strength in numbers. I bought a black leather jacket and biker boots out of the Sears catalog, stuffed my chest pocket with a Zippo lighter and a Marlboro Hard Pack, and my insecurities flipped into rock-solid confidence. Again, self-confidence and ego can fool even ourselves. In my insecure, skewed mind, however, I was a bad-boy in a power chair – right down to smoking Marlboros, no less.

However, as the school year went on, I realized that I didn’t need to be a so-called tough guy. As my classmates of all sorts embraced me, cerebral palsy and all, I didn’t need to hide behind a smoke screen or facade. I could just be me. I was a teenager with cerebral palsy, and if my peers accepted it, why shouldn’t I?

Ultimately, I gave up cigarettes, and fell in with the general crowd, focusing on my grades, girlfriends, and just being me, spasms, slurred speech and all. And, life was so much easier when I was comfortable truly being me. …But, I wore the leather jacket and motorcycle boots all the way through graduation because …well …they were awesome.

Why I Stopped Jumping Power Chairs

By Mark E. Smith

In my 20s, I achieved notoriety for jumping power wheelchairs off of ramps. To see a guy with cerebral palsy rev up a power wheelchair and jump it off of a ramp, a few feet in the air, was quite the spectacle. For me, it was a mix of misguided bravado, showmanship and stupidity. Unfortunately, though, it worked.

See, although I had overcome and was accomplishing a lot – I was a formal academic and writer at the time – people seemed mildly interested in any of that. But, the power wheelchair jumping, which I cringe to think now as a bit of a freak show, was an attention magnet. Before I knew it, I was featured in big-time magazines, and due to the advent of the Internet, I became widely known as “the guy who jumped power wheelchairs.” Soon, my reputation was bigger than I ever imagined, labeled by one men’s magazine as the “Stunt Cripple” – and my identity fractured.

There was no talent or point in jumping power wheelchairs. It, again, was a shameless spectacle. And, it surely wasn’t who I was. There was so much more to my life and accomplishments. Yet, a single aspect was defining me by reputation. I began to feel boxed in – and I wanted to be who I really was, instead of a one-dimensional caricature.

Many of us have found ourselves in such an identity crisis, haven’t we? We find ourselves in the situation of who others project us as isn’t who we are. In my case, it was admittedly of my own doing, but so often misconceptions, projections or circumstances by others can leave us feeling boxed in. No one should be defined by one dimension; rather, we should be seen in our entirety.

Now, my example of falling into an identity trap is a unique, ridiculous one – stupidity reigned – but it wasn’t the end of the world for my life and career. In far more serious examples, some of us have been boxed in to identities who we’re really not – and it’s been painful and extremely detrimental. How many of us have been in relationships where we felt obligated to act as someone we’re not? How many of us have been stereotyped based on our ethnicity, religion, sexual orientation, disability, and so on? How many of us have been labeled based on where we live, what we do for a living, or even how we dress? Indeed, most of us at some point have felt our entirety stripped down to a single trait that doesn’t just make us seem one-dimensional, but may not reflect us at all. The vital question is, how do we avoid that trap?

In some cases, we can’t. We may inevitably encounter stereotypes and ignorance that we can’t control. However, we can control our own behavior and teach people how to treat us. I recently did a big press conference in the New York City metro area. With a podium full of microphones, a row of TV cameras and a crowd of people, I don’t think a person in the room expected me to take the podium. After all, when’s the last time you saw a guy with severe cerebral palsy and a speech impairment command a press conference? But, I wasn’t going to let others’ perceptions or my disability define me. I made it clear that I’d take the podium – and I ended up on the NYC ABC affiliate’s 6 o’clock news that night holding the press conference.

We don’t have to be boxed in by ourselves or anyone else. With a little courage and a lot of introspection, we can most often avoid one-dimensional identities we misguidedly create or are thrust upon us by others. People call me a lot of titles nowadays – General Manager, writer, advocate, humanitarian, intellectual – but there’s one title that taking control of my own actions and identity buried a long time ago: Stunt Cripple.