Archive for the ‘Living The Lifestyle’ Category

woods

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.

waldorf

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.

winnie

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.

NM_iLevelMark_July16.indd

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.

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.

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.

Video:

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.