Living The Lifestyle – PowerchairDiaries

Robbing Banks

By Mark E. Smith

In the San Francisco Bay Area during the mid-1980s, it wasn’t hard to get harassed by the cops if you were a punk teen. Smoking in public, hanging out in front of a convenience store, being on the streets too late, having a house party, and so on would all but guarantee the appearance of cops. I witnessed many such scenes. Among my peers, there was teenage social credibility to it all. If you wanted to be the cool 11th-grader on Monday morning in homeroom, a run in with the cops on the previous Saturday night did the job.

For me, it was hard to be that cool kid Monday mornings. The cops simply didn’t hassle a kid using a wheelchair like me. I was once hanging out with a bunch of smoking, punk friends outside of an ice cream shop, and a cop threatened to haul everyone away, then turned to me and said, “Don’t worry, I don’t take people in wheelchairs to jail.”

I was instantly stung by his remarks. I wanted to be one of the guys, as teens do, but the cop clearly pointed out that I wasn’t, that I was different. In my mind, I was just as much a punk as my punk friends, right down to my black leather jacket. How dare the cop discount my punkness due to my disability. Worse yet, how dare he give me a pass in front of the punk peers I was part of – but suddenly differentiated from because of the cop’s attitude toward my disability.

My immediate emotions aside, I wondered if the cop spoke a universal truth, that people who use wheelchairs aren’t taken to jail? If it was a fact, should I skip college and take up robbing banks?

All of this – the cop’s condescending attitude and the potential of never going to jail – made me more mischievous than ever. One night, as my buddy and I prepared to cruise the avenue in his car, I got the brilliant idea to put a pillowcase over my head in the passenger seat and pretend like I was dead.

The avenue was heavily lit, so everyone saw in everyone’s car. When my buddy stopped at traffic lights, I relaxed my body, pillowcase over my head, and flopped against the dash like a dead body. It seemed like harmless fun and got lots of attention – until the cops pulled us over.

It turned out that I played such a convincing dead body with a pillowcase over my head that multiple people took our license plate number and description, and called the cops.

“What do you think you’re doing?” the cop asked, holding my passenger side door open, the scene illuminated by the cop car’s colored lights.

“Nothing,” I said, the pillowcase still on my head.

He yanked the pillowcase off of me, my grin appearing.

“This isn’t funny,” he said. “You’ve scared a lot of people.”

“It’s a joke,” I replied with no remorse.

He looked in the back seat and saw my manual wheelchair, then looked back at me.

“Let’s get your wheelchair out and get you to Juvenile Hall,” he said. “I bet your parents won’t find that funny.”

Obviously, not arresting people who used wheelchairs wasn’t a universal code among cops. I was in deep trouble, fast, and my disability wasn’t getting me out of it. So, I did what any punk teen would do: I apologized profusely and explained that I never intended to scare anyone, that it was a dumb prank gone wrong, that I’d never do it again.

Fortunately, the cop let me off of the hook – but kept my mom’s pillowcase.

At 16, I learned a lot that night. I learned that what I thought was funny scared a lot of people and that wasn’t right. I learned that there’s nothing cool about getting in trouble with the cops. And, I learned not to rob banks because they do put guys like me, who use wheelchairs, in jail.

Miles to Go

By Mark E. Smith

Whose woods are these I think I know. It’s the eve of my 46th birthday, and from the kitchen table – my in-laws marital set from 50 years ago – I look off past a pasture, into the rolling hills of woods. The glassed-in room makes such a vista easy, and it’s different not just from season to season, but from morning to eve.

A glass of wine sits on the table, and it’s alright. It’s all alright now.

Someone said that the pasture and the rolling hills of woods reminded her of Argentina. I’ve never been. But, do beautiful vistas change, regardless of geography? Pastures, rolling hills of woods?

My wife is upstairs painting. No, not the fine art she’s trained in, but our master bedroom. We sprung to have the first floor painted, but the second floor is sweat equity. The third floor is her art studio. It wonderfully just is.

The sun is setting on the hills of woods, and the reds and greens of the trees are incredibly vibrant for March. Some sort of evergreen trees, I imagine.

My father in his early life could have told me what sort of trees they are. After serving in Viet Nam, he studied to become a master landscaper in his early 20s. He could have told me a lot. By 30, though, all was lost.

The other night, I was trying to think of when my father died, then my mother, and I don’t recall. I’ve always heard that we remember these things down to the second – where we were, what we were doing. But, I just don’t. All was strained for decades, lives in turmoil, then it just ended, first my father, then my mother. Sometimes it just ends; dates don’t matter.

I check on our eight-year-old in the adjoining family room. She’s watching the Muppet Show, and I start the fireplace as the sun sets. Our oldest turns 20 the day after my birthday, and won’t return home from college for another two weeks, spring break. She hasn’t seen any of the paint in person. There’s always progress on the house that we’re excited to show her. Nuances discovered from its 1828 roots to changes we’ve made. It’s home now – ours.

Robert Frost, among the “New England poets,” captured rural settings like this in his work. I think of “Mending Wall,” where, in the spring, my 2daughter and I, too, will stroll our property lines, resetting stones on walls and placing pieces of the old timber fencing back on its hand-carved posts.

I could tell you how I got here, 46, my wife, the kids, the house, the rolling hills of woods. But, the beauty of life isn’t just the growth from where we stem, but the promise of where we’re going.

I gaze out the windows. The woods are lovely, dark and deep, but I have promises to keep. And miles to go before I sleep, and miles to go before I sleep.

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.

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.

I’ll Take Love Over Art

By Mark E. Smith

My wife and I have slowly become a poster couple – literally. And, we’ve been blessed that so many have found inspiration not just in the one iconic image, but the life we lead, commonly shared on social media, as is the way of the world nowadays.

However, we’re truly not a poster couple. No couple is. Who we are, are two unique individuals who love each other deeply, but face the challenges that every married couple faces. I note this because being the poster image of anything can be a trap all the way around.

I look at our life in ads or online, and realize that we’re doing well. And, it’s all true. However, what’s not reflected is the rest of the story – life is messy sometimes. We have a 19-year-old in college, a 7-year-old with special needs, a dog, and a house. The tuition bills for the 19-year-old never end, the 7-year-old struggles to sleep through the night, and the dog likes to eat grass and vomit on the new carpet. To top it off, our house doesn’t clean itself. Your life may not look a lot like ours publicly, but if you step in our house, chances are that our life is a lot like yours – from balancing finances, to caring for kids, to stressing over laundry, to trying not to lose your cool because the dog ate food off of the table again. And, it’s really hard to be romantic when the day has worn you down.

No, life isn’t a poster image. Rather, life is a mirror image – and there’s beauty in that. Some mornings, as my wife and I are scrambling to get ready, usually running late with all of the chaos, we’ll look in the big dresser mirror together – half dressed, hair uncombed, morning wrinkles emphasized by the sunlight – and we just laugh at what a mess we are.

See, what I’ve learned is that perfection – or the illusion thereof – doesn’t make a true marriage. What makes a true marriage is when you acknowledge how messy it all really is – and still smile at it.

Crystal Glasses of 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.

The Je Ne Sais Quoi to it All

By Mark E. Smith

There’s an ultimate je ne sais quoi to it all. It’s the tipping point where your skin fits – perfectly. It’s that inexplicable eloquence as you glide through life defying any preconceived notions of who you should be, all because you just are who you are, not a facade or a mirage, but true from the inside, out. Your core, anchored stronger than concrete, even an 8.0 on the Richter scale can’t shake you. As Nina Simone put it, “I’ll tell you what freedom is to me – no fear.” And, I’ll add that in everything you do, you don’t need to worry about any of it. Man, Woman, brothers and sisters – the je ne sais quoi of us all – just be. You.

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Foul Mouth Kids

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.

Full-Court Throw

By Mark E. Smith

Imagine your basketball team is tied at the ending of a game, seconds from the final buzzer. You’re standing at the opposite end of the court, and the ball comes to you. What do you do with it?

Most players dribble, hold or pass the ball as the buzzer times out. After all, what can be accomplished at the buzzer, an entire court away from the basket?

My answer every time in life is to take a leap of faith in our talent, luck and what’s meant to be, and throw the ball as high and hard as we can across the entire court, toward the basket – because there’s a chance it will go in. When we have nothing to lose and everything to gain, go for the longshot every time.

I was writing an article a few years ago on pediatric wheelchair use, and I called the mother of a little girl in Southern California for an interview. We’d met a year or so earlier at an event I attended in L.A. on business, and we were linked through Facebook.

When I called her for the interview, I only had one thing on my mind – the interview. However, she was so engaging and wonderful to talk with. We ended up speaking the next eve, then the next, then the next. I quickly realized this woman was amazing, having it all: outer beauty, humor, intellect, compassion, you name it.

But, by all accounts, she was out of my league, though. If anyone objectively looked at the reality of the situation, I was at the wrong end of the basketball court to have any chance of making a basket. I was a single dad with cerebral palsy living in rural Pennsylvania. Why would a gorgeous high-end optician and artist living in San Diego even entertain me as a potential love interest?

However, as I fell for her, I turned to the one trait that’s always got me to new heights in my life: I went for the seemingly impossible longshot. I put my heart out there with nothing to lose and everything to gain. You might say I threw the longest basket in history – from Pennsylvania to California – and it miraculously swooshed the net. Yet, while making a full-court basket only lasts for one game, my now wife and our marriage is for a lifetime.

Life is going to put us at the end of the court from time to time. When we’re blessed, a ball comes our way. And, when the ball comes to us, we can pass or we can trust in ourselves and fate, throwing the ball as high and hard as we can toward the basket. No, it won’t go in every time – it hasn’t for me. But, when it does, it changes our lives forever.

The Life and Death of Humor

To John: After writing the essay, I had to have an illustrator colleague bring my image to life - or death! -Mark — To John: After writing the essay, I had to have an illustrator colleague bring my image to life – or death! -Mark

By Mark E. Smith

Among my all-time favorite people is Callahan – John Callahan. He’s been dead now for going on 6 years, and I’m sure there’s still a hilarious punchline to that waiting to be told… maybe a cartoon of two grave diggers with shovels standing over a grave dug in the silhouette of a wheelchair?

See, Callahan was abused as a child, an alcoholic by his teens, and a high-level quadriplegic by 21 from a drunk-driving accident. There’s nothing funny about any of that – except to Callahan and his millions of readers who understood through his twisted but totally candid cartoons that humor can be among the truest healing forces. I mean, his most famous cartoon was where cowboys on horses in the desert surrounded an empty wheelchair, noting, “Don’t worry, he won’t get far on foot,” exemplifies where tragedy evolved into humor in Callahan’s life. Many were mortified by the tasteless cartoon; but for those of us who live with disability, it was hilarious.

I’ve seen it so many times, where our pain, when addressed with humor, can become joy. And, making that transition is life-changing. If you can genuinely laugh at something, you’ve survived it. You’d be hard pressed to find a successful comedian who hasn’t experienced trauma, but through that has somehow found humor.

For me, humor has always kept me from the dark sides of life. If you ask me about cigarette smoking, I’ll tell you to go for it. After all, my mother smoked throughout her pregnancy with me, and I was born just fine, right? …The whole cerebral palsy thing was just an uncanny coincidence.

I likewise grew up with alcoholic parents, and they died from it at young ages. Along the way, I spent time accompanying my drunk mom to Alcoholics Anonymous meetings as a teenager – because when you’re 16, with cerebral palsy, it’s the one place your slurred speech and uncoordinated body gestures fit in. At times, I wanted to truly participate: “I’m Mark, and I’m not an alcoholic, but I sound like one and sometimes I pee my pants – where’s my AA coin!”

No, there was nothing funny about being born with cerebral palsy or having drunks for parents – it was all tough stuff. Yet, I survived it all, and I can’t help but see humor in most of it now. Humor, in so many ways, is the power to rise above pain, to take back our joy, our spirit.

As they say, that which does not kill us – or does! – only makes for a hilarious punchline. And, as Callahan taught us all so well with his work, if you’re not at the point yet where you can laugh at your own pain, you don’t need to worry – there are plenty of us who will do it for you!