facing challenges – Page 6 – PowerchairDiaries

Living Moby-Dick

By Mark E. Smith

I had always intuitively known of it and practiced it simply based on having my disability. However, it truly didn’t become part of my consciousness, in defined words, until the lesson in class that day.

I enrolled in an upperclassmen “winter course.” Winter courses at my college were a tremendous advantage because during the first three weeks of January – typically winter break – we could take a four-day-per-week class, for five hours per day, and get credit for a semester course. Most enjoyed winter break; but, for those of us who wanted to knock off classes left and right like bowling pins, the winter semester was a goldmine.

That particular winter semester, I took a literature course titled, “The American Renaissance,” covering 19th-century American literature from 1830 till the Civil War. If you know of the Scarlet Letter, The House of Seven Gables, Walden, or Uncle Tom’s Cabin, you know something of the era. Having a concentration in American lit, I wasn’t concerned at all about blowing through more Emily Dickinson or Fredrick Douglass. Three weeks? Game on!

The first day of class, we began with an enrollment of around 20 students. The same number showed up the next day. It was a sharp group, and at the end of the second day’s class, the professor announced our homework assignment for the night: we were to go home and read in entirety Herman Melville’s Moby-Dick, and be prepared to present scholarly analysis at 9:00 a.m. the next morning. The fact that Google didn’t yet exist didn’t help, either – we had to literally read the book and pull out every nuance, overnight.

Depending on the book form, Moby-Dick ranges from 500 to 700 pages. Additionally, the professor made it clear that we would not be discussing the plot, but true scholarly aspects. As we headed out of class, many of my peers noted the impossibility of the task and how unreasonable the professor was. I, though, was only concerned with reading the book. I rolled straight to the bus stop, and opened the book. “The pale Usher—threadbare in coat, heart, body, and brain; I see him now.” Tonight is going to suck!

I spent the bus ride, train ride, then the entire night reading Moby-Dick, and I used every technique I was schooled in to extract the text, from as mundane as the name, “Ishmael,” and its connection to the book of Genesis to Melville’s assimilation of Shakespeare. By the next morning, I had double vision, but I could tell anyone a lot more about Moby-Dick than the tale of ticked-off Ahab who’s chasing down a whale for biting off his leg.

In class that morning, only six of us showed up. We spent the day dissecting Moby-Dick, and by the end of class, we just wanted to go home and go to bed. But, the professor stopped us.

“I have a confession,” he said. “Today wasn’t a test on Moby-Dick. It was a test on you. Life isn’t about education, intelligence, or skill. It’s about who is willing to persevere. The six of you didn’t do the impossible – Moby-Dick can be read overnight. However, you did what 14 others in this class weren’t willing to do: you persevered. That’s all you need to not only get an ‘A’ in this course, but to be unbelievably successful in life…”

That experience, along with my disability experience, change my life forever. What I realized was that hardship makes us want to give up. Perseverance allows us to rise up. If you want to rise, choose perseverance every time.

Author’s Note
One can’t logically read the entirety of Moby-Dick every night for the rest of one’s life. However, not taking the easiest routes in life is invaluable toward our constant growth. For me, at 46, with cerebral palsy, I put everything I have into working out several times per week. You might say it’s my constant reminder of the perseverance we’re all capable of. No, I don’t have the best coordination, strength or balance. But, none of that matters – because I’ve got perseverance on my side.

Video

Dropping the F-Bomb: Fear

By Mark E. Smith

Have you ever thought about the power that fear has in your life? No, I don’t mean a fear such as that of public speaking or bugs or heights – those are all trivial. I’m speaking of fears that truly impact us: the fear to express ourselves to our partners; the fear of expressing vulnerabilities; the fear to truly just be who we are; and other such fears that emotionally stifle us.

And, it’s painful and debilitating, isn’t it? How many of us have been in a marriage or relationship, and have an inexplicable – or, sometimes, rightful – fear of expressing our needs or desires to our partners? We lay in bed at night, feeling alone, and our hearts just ache, don’t they?

Or, how many of us are living with trauma in our past of some kind, and we fear sharing it with anyone? The result is we feel isolated, needing to keep people at arm’s length, don’t we?

Or, how many of us are dissatisfied with our life paths overall, but we fear telling anyone because we don’t want to rock the boat or upset those around us? It leaves us trapped, doesn’t it?

I’ve faced many challenges in my life, but the absolute most difficult has been conquering such deep emotional fears of expression. And, it remains an ongoing process, where bursts of courage have been allowing me to slowly become more and more open over the years – read that, more honest with myself and those around me. I’ve been on a deliberate and liberating path from emotionally fearful to fearless.

In knowing my struggles and progress in this very personal emotional battle, I recently had the privilege of having a friend confide his fear to me. He was diagnosed two years ago with ALS, which has progressed very rapidly, his now using a power wheelchair and losing physical abilities day-by-day till he passes away. However, he’s been the picture of strength, not only for his wife and children, but for his whole community.

Despite his outward portrayal, he shared with me that he’s been keeping a secret, one he fears telling anyone. As I listened, he paused and said just two words: I’m scared.

Everyone handles adversity in his or her own way. However, any reasonable person who’s slowly dying, leaving behind a spouse and children has every reason to be scared. Yet, out of fear of not being “the strong one” that all labeled him as, he was terrified to express his real emotion, not wanting to let others down, as he put it. Meanwhile, he was struggling on this frightening journey internally alone – fear had him trapped within himself.

I asked, if he was to put his fear aside and share those two words – I’m scared – with his wife, how would she react? His answer was breathtaking: I know she’d reply, “I’m scared, too….”

I haven’t learned if he was able to ever have that conversation with his wife, but I hope he did because I trust it would bring them closer together and allow them to be more open in supporting each other in this process. You can’t have genuinely heartfelt conversations as long as you have fear.

See, that’s what overcoming such fear does – it opens us up. Sometimes we receive a positive response to releasing our deepest fears into the world, while other times a disappointing response. However, the reward of expressing ourselves, despite our fears, is in our actions, not the result. The power, for example, in coming out as gay isn’t in seeking approval; rather, it’s about not living in fear of being oneself. This equally applies to no matter what we’re keeping inside. Expression over fear liberates.

What I’ve learned in my own process – from my relationships to my career – is that life is more authentic when I choose to live openly as myself rather than stifled by fear.

Expressing Truth in Struggles

By Mark E. Smith

I had the privilege of Ms. Wheelchair International, Yvette Pegues, visiting recently. She’s one, like many of us, who’s not only faced challenges, but continues facing them on a daily basis. As I always value, our conversations became deep and heartfelt very quickly, and she asked me a profound question: How do we express the truth of our struggles?

It’s a question many of us who struggle – whether physically, emotionally or mentally – face every day. After all, how candid should we be about our struggles, and with whom?

For me, I see it as a vital balance. We all have those in our lives who pour out every little problem to everyone they meet. There’s nothing authentic about ”woe-is-me” individuals. However, what is authentic is sharing valid, appropriate truth about our struggles. See, when we genuinely have struggles in our lives, it can feel natural to keep them to ourselves because… well… we don’t want to feel like we’re playing the woe-is-me card. Yet, not only do we benefit from being honest about our struggles, but it can also serve others. The only way others can truly know and help us is by our letting them know of our struggles, and in that process it can be remarkably comforting to others because they, too, have their struggles. For all of us, there’s power in not feeling alone – and that’s what the process of sharing the truth of our struggles does.

My wife and I were at church one Sunday, and a parishioner came up to us and said, “I know it took you more than most to get here this morning, and I want you to know I appreciate that.” His words were kind and empathetic – and remarkably true. He had to have known of disability experience, as it does take many of us hours to get ready in the morning. Nevertheless, what touched me was his emotional extension, having the heart to subtly say to me, a stranger, I know the truth of your struggles.

For those of us who know struggles in our own lives, we can be remarkably intuitive in recognizing it in others. Expressing the truth of struggles that we see in another can be an ultimate act of compassion and connection. No, we don’t need to give a drawn-out soliloquy. Rather a simple acknowledgement that simply says, I truly see you, and you’re not alone in this… can take weight off of the spirit.

Let us not just have the courage to express the truth of our own struggles, but to also have the courage to express the truth of others’ struggles, with compassion and connection. Ultimately, let expressing the truth of our struggles not be about us, but togetherness.

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.

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

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….