Let it Rain

adversity

By Mark E. Smith

Some had a limited life expectancy. Others had experienced life-changing injuries. While still others we’re born into it. All faced exceptional adversity, which made sense, as it was an expo for those with disability.

However, as I was surrounded by over 5,000 individuals that weekend facing adversity, I realized that the confidence, comfort and joy that many – not all, but many – exuded aligned with what I learned long ago: adversity dramatically improves our lives when we embrace it.

For those who haven’t experienced adversity or embraced it, they find fear in it and have sympathy toward those who live with it. For those of us who have experienced and embrace adversity know the remarkable role it serves in our lives. Our experiences have taught us that adversity shouldn’t be avoided, but actually welcomed.

See, adversity forces us to face problems and situations that are too big to resolve. In my situation, no one can change, fix or cure my cerebral palsy. And, because of that, it’s forced me to learn and grow in order to succeed in living with it. Think about what an extraordinarily fortunate situation that is to be in. Yes, we can grow without adversity, but like adding weights to a workout, adversity is a rare force that can fuel wisdom, inner-strength, understanding and perseverance, to name a few life-enhancing traits. Adversity, then, isn’t meant to restrict, but empower.

I realize that for some, adversity as empowerment is a ludicrous thought. After all, how is being seemingly down on one’s luck a positive in any way? Worse yet, when you’re down and you see someone in your situation who’s happy, that can be the perfect recipe for bitterness. But, again, if we view adversity with acceptance, we will intrinsically grow. If we embrace adversity, the challenges within will cause us to rise.

As the late singer, Prince, prepared to perform the Super Bowl half-time show, the producer called to tell him it was raining, convinced that Prince couldn’t or wouldn’t perform. Prince replied, “Can you make it rain harder?”

Prince ultimately performed among the most iconic concerts of all time, later noting that that caliber of performance could only be achieved when facing such adversity. That which he couldn’t resolve – the weather – elevated his performance.

There’s the notion in our culture that adversity is to be avoided, feared, that it’s tragic, life-detracting, that it’s asinine to even suggest welcoming it into our lives. However, that’s all gross misconception. The fact is, adversity allows us the remarkable opportunity to extract dignity from difficulty, strength from struggle, power from pain. That is, adversity allows us to not just rise in the rain, but it empowers us with the understanding that the harder it rains, the more we can rise.

Crystal Glasses of Ginger Ale

ginger ale

By Mark E. Smith

By the time I was vomiting uncontrollably in the shower that eve, I felt it a mixed blessing. On the one hand, I made it through a day that encompassed a media feature of my company, and I suspect vomiting in front of the press and my CEO may have influenced the story a bit. The press is fickle that way.

On the other hand, I was perplexed how I became so sick, so fast? And, so, as my wife brought me a baker’s bowl, so I could make it from the shower to the bed, vomiting on the move, I sought her expertise. After all, she’s a skilled medical professional – or, at least a high-end optician. If you can’t trust an optician to advise you on stomach viruses, who can you trust? OK, you can’t trust an optician at all for medical advice. While my wife could fit me for awesome eye wear, she was likewise clueless as as to why I was suddenly so sick?

Once in bed, things got worse. In my 45 years of having cerebral palsy, I’ve learned an invaluable lesson: the one downside to not being able to walk is not being able to walk. And, so as I felt my condition worsening, unable to sprint to the bathroom, I broke out my secret weapon: Depends. But, here’s the thing – as much as Depends are marketed as “underwear,” they’re diapers, poofy, odd diapers, sans the tape closure tabs. So, there I sat in bed – 1 am, 2 am, 3 am, 4 am – wearing a diaper while vomiting uncontrollably all night into a baker’s bowl. Some might find that embarrassing, but I found it an ingenious evolutionary system of survival. Prehistoric man and his tools had nothing on me – I had Depends and a baker’s bowl.

By the next day, I was gut-wrenching sick, vomiting ad nauseam, to painful dry heaves beyond anything I’d ever experienced. On the upside, it gives you one heck of an ab workout. I see dry-heave gyms catching on. But, I was getting sicker and sicker.

Now, here’s the brilliance of medical science: when you’re vomiting uncontrollably, they tell you to drink lots of clear fluids – all so that you can promptly vomit them back up. Gatorade in, Gatorade out. Water in, water out. It’s like I was the opposite of a waste water treatment plant, putting perfectly good fluids in me only to vomit them back up as bio hazard.

Finally, I settled on ginger ale. No, it wasn’t anymore effective than the other liquids. However, there was an elegance to it. Darling, won’t you please bring me a glass of ginger ale, with ice, in our finest crystal? And, that my beautiful wife did. Was I a sick, pathetic mess? Absolutely. I was in bed, wearing a diaper, vomiting into a baker’s bowl! But, the crystal glasses of ginger ale added a certain class to it all – even as I vomited every last drop. I was a hint of a British gentleman – vomiting, wearing a diaper.

After a few days, my wife wisely wanted to call an ambulance. I was only getting worse, unable to eat in days, and arguably pushing the line toward dangerous dehydration. My wife knew best. However, I’ve long trusted a slightly off-kilter Italian – my doctor. He’s long lectured me on trying to stay out of the hospital. English is his second language, so I don’t always know what he’s saying, but his theory is something to the effect of: Hospitals are full of viruses. You eat bad fruit, go to the E.R., touch something, get a flesh-eating bacteria, and, boom, you die! Yes, he’s prone to slippery-slope exaggeration, but has his points.

Still I followed my doctor’s advice and opted to stay in bed, wearing diapers, and vomiting the finest ginger ale from crystal glasses that money can buy – $1.79 per 2-liter bottle, imported from Canada.

Out of boredom one eve, I lay watching CNN political coverage. I was already sick, so the dynamics of the 2016 political race technically couldn’t make me any sicker. Governor John Kasich told the story of confiding in former governor Arnold Schwarzenegger that he didn’t know how to handle personal attacks? Schwarzenegger replied with classic Arnold advice, “Enjoy the punishment.”

Schwarzenegger is no philosopher, but he was on to something. We have choices in our lives. We can be bitter and resentful, or find some sense of gratitude, no matter how bleak the circumstance. Yes, I was sick to a troubling level, but at least I was sipping – and vomiting – ginger ale from a fine crystal glass.

Foul Mouth Kids

foul

By Mark E. Smith

In my neighborhood, none of us kids took anything from anyone. It was where the two sides of the tracks intersected – upper- and lower-class kids intertwined. Neither had much parental guidance. You just never knew where anyone’s parents were. Some were drinking in dark bars in the afternoon, others working in the city in high-rises till all hours, and some straddling both lives. Because of this, in my neighborhood, most kids had free reign from parents, and when out wondering our suburban streets, you didn’t take gruff from anyone.

Being the kid who used a wheelchair didn’t make me exempt from any of it – the dysfunctional home, taking jabs from the other kids or dishing it back. Mostly, though, I kept to myself after school. At 14, I had a lot going on teaching myself to be independent with cerebral palsy. I was three or four years into my mission of being as independent as possible and I saw a lot of progress. My main self-therapy was pushing my manual wheelchair for two hours or so after school every day. The repetitive motion of pushing my manual wheelchair was a sound exercise in strength and coordination. But, I was dismal at it. I’d started a few years earlier barely able to propel across our living room, and by this point, I could make it around our neighborhood. Yet, there was no grace in it.

I pushed painfully slowly. Really, it wasn’t even pushing – pushing implies consistent movement. For me, it was push, roll feet or inches, regather my flailing, spastic limbs and then push again. All that mattered, though, was that I was seeing progress.

As I went out each day, I purposely stayed on quiet streets. I needed to do what I had to do and didn’t want to be bothered. Besides, I never knew if anyone would understand why I was doing what I was doing, and I didn’t want to have to answer any questions. When I was eight, I was in a grocery store trying to buy a pack of gum and an elderly woman made a huge scene that crippled people like me shouldn’t be out alone in public. That experience shook me a bit, and I suppose it made me want to avoid such a scene while out pushing my manual wheelchair, self-aware of how awkward I looked. So, the side streets were my sanctuary, where I could push and progress at my own pace, in solitude.

There was a hill leading to our driveway. It wasn’t the steepest of hill, but long – maybe two blocks – lined by vacant land on each side. It took me a good year to get to where I could push up that hill myself, but I got to where I could do it, although it was forever a challenge, inch by inch.

One afternoon while halfway up the hill, a group of neighborhood kids came up from behind me.

“Need help?” one of them asked as they all surrounded me.

“Do I look like it?” I asked with an attitude, pushing toward a boy standing in my path.

“Yeah,” they all replied at once, laughing.

“Screw you!” I shouted, giving my chair another push, wanting to be left alone.

“Screw you!” they shouted back as they walked in front of me.

“You’ll never make it up the hill, retard,” one kid yelled.

I pushed even harder.

“And I’m going to kick your ass in school tomorrow!” I yelled.

Of course I made it up the hill, and I didn’t kick the kid’s ass in school the next day. I guess achieving one of my two goals wasn’t bad considering the circumstances.

The Stories We Share

OUR_STORIES

By Mark E. Smith

When I entered San Francisco State University’s creative writing program some two decades ago, I did so with one goal in mind – to be a better writer. After all, writing is a technical craft – not unlike painting or music – and if you want to get better at the craft, you expand your skill set. And, I wanted to possess the largest skill set possible so that, as a writer, I could write about virtually any topic, in any form. If writing was carpentry, I wanted the skills to build anything.

Upon my first week in the program, I realized it wasn’t what I expected. The fact was, I quickly learned that the true craft of writing wasn’t about technical skills at all. Yes, as students, we’d long learned the formalities of writing, with more to come. However, what we were there to really learn was the power and universal impact of stories. We learned what it was like to be impoverished and black in the south under Jim Crow laws through Alice Walker. We learned what it was like being a disenfranchised white, middle-aged male through Charles Bukowski. And, we learned what it was like to be a teenage heroin addict through Jim Carol. The stories went on and on, and we learned that every one has a story – ones of universal impact. We learned that writing wasn’t just about a skill set, but more so a deep acknowledgment of the human condition we all share.

As students, we were required to write with courage and vulnerability, to share our stories. Writing workshops, where you critique each others’ pieces, were cathartic, safe places where we could write and share the stories in our lives. The beautiful twenty-something who seemed to have it all wrote about her struggles with self harm, cutting her thighs with razor blades. The silent guy in the army surplus jacket wrote about being raped in his high school locker room by three jocks. And the happy-go-lucky, surfer dude wrote about living on friends’ couches because he was disowned by his parents when he came out as gay. What it taught us was that everyone had a story – including ourselves – and the true craft of writing isn’t just about telling stories, but honoring them.

During that time, my twenties, I was struggling with a lot. I was trying to understand my identity as one with severe cerebral palsy, and struggling with the guilt of separating myself farther and farther from my dysfunctional family. When we go through these periods of our lives – deep emotional struggles – it’s impossible to not feel alone. It’s unfortunately intrinsic to the process. Yet, our individual struggles – read that, stories – are universal to the human condition, and whatever we’re feeling or have experienced, we’re not alone.

What I gained from attending the two-year creative writing program – and writing of my struggles in the process – was recognizing the importance and vulnerability in sharing our stories, as well as embracing those of others. While there’s a time and a place for light conversation, it’s in sharing our stories that truly connects us.

Since that time, not the writer in me, but the person in me, has lived a life of connecting with others – through stories. Of course, I’ve shared mine countless times, as cerebral palsy can’t be hidden and understandably can become a topic. However, what’s shaped my life are the stories that others – with trust, courage and vulnerability – have shared with me. See, I’ve learned that no one’s story is more or less significant than another, just different. And, we intrinsically relate to them all. Pain, joy, sadness, fear, courage, failure, success, heartache, love, guilt, pride, resentment, elation, self-doubt, confidence and on and are all emotions that we universally share. They unite us.

However, sharing our stories does more than unites us. The process has far more power. Sharing our stories can heal, uplift, inspire, empower, and most of all the process shows us we’re not alone.

I don’t know what your story is. Maybe it’s one you’re struggling with alone. Or, maybe it’s a story that can help another person in your situation. Share your story. Let it out to someone, somewhere, in a safe place, where I promise it will change both your lives. None of us need to be writers to be courageous and vulnerable in sharing our stories. We just need to be ourselves.

Broken Pianos

piano

By Mark E. Smith

The story of American jazz piano great, Keith Jarrett’s, 1975 concert in Cologne, Germany, is legendary. See, Jarrett was scheduled to perform solo that night at the Opera House in front of a sold-out crowd of over 14,000 people, to be recorded live for an album.

However, when Jarrett arrived at the Opera House the afternoon of the concert – exhausted, with a bad back from touring Europe – he was horrified to find that they didn’t have his required piano. Instead, they had an old, small broken piano – not concert worthy.

The young promoter called around, but couldn’t come up with the needed piano. The best she could do was get the old piano tuned, but the upper keys were all but useless and the pedals didn’t work. Jarrett was done, insistent that he couldn’t perform without a proper, working instrument.

With 14,000 people waiting until close to midnight and recording equipment set up, the young promoter begged Jarrett to perform. With nothing but tenacity, Jarrett took a leap of faith in himself and walked onto the stage, standing behind the tiny, broken piano. The packed Opera House was silent.

Jarrett focused on only the piano’s center keys, the only ones that worked, and pounded them with ferocity that allowed the tiny piano to project, rearranging the songs in real time with each key strike. The result was over an hour concert that ended in a standing ovation – and became the best selling solo jazz album of all time, The Koln Concert, with over 3.5 million albums sold.

How often do we, in our own lives, find ourselves in Jarrett’s situation, seemingly not having what we need to succeed? How often do we only see limitations in the face of adversity? But, more importantly, how often do we have the tenacity and courage to do as Jarrett did, and not dwell on what may limit us, but strive to find that which may elevate us?

I’ve had my share of adversity in life, as have many who I’ve known. After all, adversity doesn’t discriminate. What I’ve learned is that when we succeed in adversity, we do so by using what we have, ignoring that which we don’t. We’re fearless experts at playing broken pianos.

It’s trite, cliché and undeniably true: Never let what you can’t do stop you from what you can do. There’s stunning form waiting to be played on our own broken pianos.

Projecting Oneself

confidence

By Mark E. Smith

My friend texts me from a restaurant on New York City’s Upper East Side. He explains that it’s full of those who are ultra-wealthy, and they’re acting awkwardly toward him, as if they’ve never seen a person using a power wheelchair. He further texts that there’s an attractive, older women next to him who seems possibly approachable.

“Say to her casually, ‘I’m just back from London, and I’m amazed at how warm the weather is here,’ and see where the conversation leads,” I text back.

Of course, my buddy has never been to London and, yes, my reply was sarcastic.

We live in a culture where people may make totally uninformed, ignorant presumptions of us – and we can feel it sometimes, can’t we, like my friend in that restaurant. They perceive us as they wish. I mean, think about all of the stereotypes people can make about a gentleman using a wheelchair in public. And, it’s so easy for those of us who use wheelchairs to absorb those. It would be understandable for my friend to want to avoid that restaurant scene and high-tail it out of there. But, there’s every reason to stay.

No matter who you are – disability or not – you have far more control over such situations than you likely know. The fact is, just as others attempt to perceive us, we can completely project who we are, totally reversing the process. My text to my friend wasn’t meant for him to literally lie, but rather to imply gaining comfort in his skin. There was no reason for him not to fit in. It wasn’t up to those in the restaurant to tell him who he was; rather, he had the power to project who he was.

Being humble is among the most admirable traits. However, feeling as though you need to apologize for who you are should never be in our emotions. I use a power wheelchair, with severe cerebral palsy, right down to muscle spasms and labored speech. At 44 – and it took me a long time to get here – I don’t feel awkward in who I am, and I certainly would never apologize for who I am. As I go through the entirety of my daily life, I am who I am, and I’m not making an issue of it, and neither is anyone else, per me. Here I am, as I am, period.

And, that’s what I’ve learned: We teach people how to treat us by both how we view ourselves and what we project. If I’m in a conversation and I spasm, I correct my posture and keep with the conversation. If I don’t make it an issue, typically neither does anyone else. It’s amazing how our reactions and projections can completely dictate how others react to us. Just be you, and you’ll be impressed at how others recognize you as just that.

As for that awkward restaurant scene, how would I handle it? …I would just be myself.

The Iris Effect

12196161_10207777888755456_2604424288050660940_n

By Mark E. Smith

Ninety-four year old fashion icon, Iris Apfel, once said, “I’m not going to be a rebel and offend anybody, but I’m not going to live in somebody else’s image.”

Being somewhat of a public figure, I recently was engaged in a several-day online banter with an individual being very critical of me, to the point of irrational. Still, I felt the need to respond to his criticisms. For one, I didn’t want false statements about me left unaddressed in a public forum, and secondly, I was trying to be respectful and not ignore the individual. I didn’t take it too personally, but I also didn’t just let it emotionally go – and logistically it consumed a lot of time. However, I finally realized I didn’t deserve to be treated that way, and I didn’t care what else was said of me – and I simply ceased the unhealthy dialogue. I know who I am, I know what I do, and I’m proud of it all, so there’s no need to waste time with concern over others’ opinion of me – good or bad.

Most of us have been in this type of predicament, sometimes more serious than others, right down to abusive. I mean, maybe you know what it’s like to be inappropriately criticized, judged or condemned by others. And, it’s most painful when it’s by those who claim to love us. Something as small as a comment like, “You’re not going to wear that, are you?” after we’ve gotten dressed up can sting. Of course, situations like when parents stop talking to a child because he or she came out as gay can crush. From tiny comments to huge judgments, it all just hurts, doesn’t it?

But, there’s a way to stop it all, to take away the pain – and, more importantly, remove the power of others from effecting us. We need to realize that, if we’re good people, living good lives, no one has the right to criticize, condemn or judge us, period.

As I grew up with a severe disability, it was always in the back of my head whether others would accept me? This insecurity extended well into my adulthood. Granted, I was really good at concealing it, where self-confidence was a mask I wore. However, in my 30s – and it’s unfortunate that it took me that long to come to such a simple truth – I realized that I was to be accepted as I was, and I didn’t need anyone’s approval toward my having a disability. It’s really a brilliantly childish life strategy: I don’t need anyone to accept me because I don’t accept anyone who doesn’t accept me. It’s my ball, and if you don’t like the way I play, then I’m taking my ball and going home!

See, the prize is in you and me, not those who criticize, condemn or judge. I’ve run into several circumstances where friends have come out as gay to their parents, only to be shunned. Again, imagine how painful it is to have your parents shun you. However, who should shun who in such a circumstance? It’s painful and hard, but a child needs to say to his or her parents, I’m your child and I deserve to be loved as-is, and guess what, folks, until you love me as I deserve, you’re going to have an empty chair at the dining room table.

Life and relationships are full of compromises, but our intrinsic value isn’t. We shouldn’t live to others’ criticism, condemnation and judgment. I know, it can be hard to break free of investing in what others think of us, especially when it’s gotten to a toxic level in family dynamics and relationships. Yet, we owe it to ourselves to be our own cheerleaders, champions of the self, where the only opinion that counts is our own, based strictly on the positive, meaningful lives we lead.