A Dog’s Life

photo (19)

By Mark E. Smith

I’m sitting on my deck, roasting marshmallows this summer’s eve, my English bulldog, Rosie, sleeping on the honey-colored wood. Years ago, she would have ran off into the woods chasing critters, but now she’s eight, and would likely rather be laying on the couch in the air-conditioned house. However, this eve, it’s just her and me, so we stick together, relaxing on the deck.

“Rosie, you’ve gotten old and lazy,” I tell her, and she opens one eye, not moving a muscle, jowls flopped on the deck. “You’re no good for conversation anymore when all you do is sleep.”

I built this place twelve years ago, loving the property – close to work and town, yet rural and serene. In fact, the deck is designed so that when sitting on it, it overlooks lawn and woods and a creek, no other homes seen or traffic heard – just the nature of the Pocono region that stays lush and green throughout the summer – the grass, the trees, the native ferns.

Oddly, although I’ve always maintained my property and deck – often mowing twice per week, spraying surrounding weeds, and keeping the deck stained – I’ve never really enjoyed any of it till this year. I bought some cheap patio furniture and a not-so-cheap gas fire pit, and it’s all turned out well, soothing décor that gives me a front-row seat to nature without leaving home.

“Rosie, you’re snoring,” I pipe at the dog, wondering if I’m getting old like her, too?

Some eves I sit out here with my daughter. Some eves I sit out here and read. Some eves I sit out here and write. And, some eves I just sit here – with Rosie, the fire flickering, the lush grass, dense woods, and evening breeze surrounding me. And, I’m content. Maybe I am getting older, wiser, more relaxed?

“Rosie, in people years, you’d be fifty eight,” I tell her, and she opens her one eye again, slightly. “If you were a person, you couldn’t get away with your laziness. But, because you’re a mush-faced bulldog, it’s charming. And, maybe you’re just smarter than most – no one bothers you, and you don’t bother anyone.”

Those close to me say they’ve noticed changes in me, too. My sister said she’s observed that I only tell funny stories about our parents these days – I guess I’m letting the bad ones go. I was just down in Washington D.C., having lunch with my life-long best friend, and I think he sensed a more laid-back me. My daughter, work, the house, the dog – it’s all good, and I just don’t worry about much else. Like Rosie, I try not to bother anyone, and I don’t want anyone bothering me.

I toss Rosie a raw marshmallow, it landing directly in front of her face. She sniffs it, then scarves it down, looking to me for another.

“You’ve got it all figured out, Rosie,” I say. “Why waste time chasing the futile when, with faith and patience, life will eventually bless us with its best – and sometimes a marshmallow.”

Just Us – Video

By Mark E. Smith

If you’re a regular reader of this “blog,” you know that my daughter and I have a remarkable life together, really just the two of us. And, it’s my privilege to share this amazing video with you, giving a candid, poignant glimpse into our life together….

Brawling with Books

wheelsofchange

Mark E. Smith

The prevalence of alcoholism and drug abuse of many great writers, both past and present, is unmistakable, as is their urge to travel, expatriation in some cases. From Hemingway to Boroughs to Bourdain, our best writers have all sought escape in their lives. Why is that?

As a writer, I can tell you that the answer is, fear – and escapism from it. Spaulding Gray’s monologue – turned into a 1992 film – Monster in a Box, chronicled his emotional struggles to finish his first novel. In fact, on March 7, 2004, Gray committed suicide, a bout of depression that those close to him say was triggered by his struggles in writing his latest book.

See, many don’t realize the fear that most true writers have toward writing. If you’ve been in a bad relationship, knowing that leaving would lead to success, but you couldn’t find the courage to do it, that’s what sitting down to write is like. If you’ve been dissatisfied with your job, knowing that you could do better elsewhere, but were scared to make that leap, that’s what sitting down to write is like. Or, if you’ve ever wanted to diet and exercise, but were intimidated to start because of the commitment required, that’s what sitting down to write is like. It’s simply the fear of failure that stops many in their tracks, causing them to seek diversions or escapes instead of assuming accountability and just accomplishing the task at hand.

But, not me. At the age of 23, I met with a book publisher, and he verbally tore my manuscript to shreds, calling it “amateurish,” and I thought, I’ve spent two years writing this with nothing more than a belief that I could do it, so call me what you will – but, in my mind, I’ve had the courage to do it, and that’s all the validation I need….

“But, there’s more to this story,” he continued. “You might just be among the most fearless writers I’ve ever met, so let’s see if you’ve got the balls to take this manuscript from good to great – and, if you do, I’ll publish it.”

From that day forward, fearless was my only way of writing. I may fail miserably in the attempt – and I have at times – but fear will never stop me ultimately succeeding.

And, so this past spring, when I embarked on my most ambitious book project to date, a part of me thought, How am I going to pull this off? Yet, a bigger part of me was like, Man, I’ve published over 1,000 formal pieces, with five books under my belt – I can do this….

The concept was to capture the birth, evolution, current state, and future of complex rehab – and, most importantly, tell the stories behind the story in an astoundingly compelling way. In my mind, it was like setting out writing The Social Network (the story behind Facebook) – that is, could I make what would seem a pretty mundane subject, and find the extraordinary in it? I remember one of my colleagues saying, “You’re the only one who can take this subject and make it fascinating.” Easier said than done, I thought. But, I was up to it.

With a dose of fearlessness, I went to work, tracing the roots, interviewing the individuals, and capturing the iconic moment of complex rehab, and it’s taken me on both an extraordinary professional and personal journey. At first it was intimidating and laborious, just a push to get through the first chapter. I remember saying to the woman working as my editor, I’m nine pages into this, and it isn’t getting easier. However, then I remembered that the best writing comes from fearlessness, and so I did what many in the complex rehab industry would view as a pretty bold move: I went to Ohio, rolled through the doors of Invacare, and sat one-on-one with Mal Mixon, in his office, for three hours, interviewing him about the evolution of complex rehab technology, Invacare having innovated several key technologies in the early 1980s. And, from there (with his sharing some pretty astounding never-told-before stories), I was like, Wow, these are the types of awe-inspiring first-person stories I need to write the book that I know that I can write – and, more importantly, the type of book that people won’t be able to stop reading.

From there, the writing and interviews snowballed, where I wasn’t writing from fear or pressure, but inspiration and passion. In no time this past spring, I had a book coming together that captivated me – one heck of a story unfolding. No, the manuscript won’t be done for about six more weeks at this writing, but I wake up seven days per week itching to squeeze in that day’s writing where I can.

In so many areas of life, fear dictates what we accomplish – or, don’t accomplish, as it is. However, when we put fear aside, and say, Yeah, I can do this regardless of the challenge, we will ultimately accomplish it. Replace fear and escapism with inspiration and passion, and you’ll be amazed where your goals will lead.

Heavy Sky

window

Now I’m a grown man, with a child of my own, and I swear I’m not going to let her know all of the pain that I’ve known. -Art Alexakis

By Mark E. Smith

When I was 17, I spent a lot of that summer camping in Yosemite’s White Wolfe region. It was part independence building, part adventure, part escape. I attended forestry seminars that summer, and learned that wild fires can prove good for the environment. Dense forests fill up with debris, and stifle new growth; however, a wild fire clears out the old, and allows new plants and trees to grow. What initially seems like destruction, actually builds a new, stronger habitat.

At that time, I wasn’t in touch with my father. He’d walked out on my brother and me many years earlier. We were little, maybe five and six, or a bit older – it’s hard to date such things, probably because it’s too painful to remember exactly when your father left. But, I remember.

Regardless of dates or circumstances, when your father drives away for the last time, it creates a void in you that many say never goes away – it’s just a heavy sky that’s left over you. And, as the seasons pass, you learn that other people, who you love, leave and don’t come back, either. It’s emotional dominoes set into motion by the man who’s supposed to be a boy’s hero, and you learn to just fall with them, relationship after relationship, where the fear of abandonment becomes the security of being alone.

Yet, you grow strong in ways, where you never distrust because there’s always a chance that someone might stay. You’re forever a seven-year-old starring out of the living room window, with the possibility that Dad might pull up in his pick-up truck, boozed up but playful. And, so you learn to trust in a counter-intuitive way – it’s the dream that’s the only comfort to hold onto.

And, you likewise learn to never leave anyone because you don’t want her or him to know the pain that you’ve known. Yes, everyone’s going to promise to be by you till the end, but who dare live up to it? You will live up to it because you won’t be like him.

And, then there is her, your own child, and as a broken man, there’s something remarkably whole about you in that single role, where your pieces come back together, and you see everyone around you in the sunlight of spring. It’s inexplicable that where only destruction has been, beauty emerges – a single flower among ravaged woods. And, you realize that the injustice of not having a father is corrected by being a father – the better man, you are for it all.

The $29 Advocate

capitolhill

By Mark E. Smith

In my recent HME News column, I talked about how, unlike in the classic 1975 School House Rock song, a bill isn’t just a bill, rather, it’s about people, not paper, where getting legislation passed is about Capitol Hill face time, convincing our elected officials and their staffs to sign-on and support disability-related legislation is vital.

Indeed, I was privileged again this spring to be on Capitol Hill – as an advocate, not just a bill – summoning support for H.R. 942, the 2013 version of the Ensuring Access to Quality Complex Rehabilitation Act. We’ve introduced similar versions for several years now (much like in School House Rock, bills low on the priority get stuck on the steps of Capitol Hill, and fall off of the calendar, needing reintroduction). However, this year’s version, we believe, has a real chance, as face time and the quality of the proposed bill seem to have converged, where our elected officials have off-the-record at least noted it as a no-brainer, namely because it serves those with severe disabilities so well. See, H.R. 942 doesn’t just help protect complex rehab technology funding, but it eliminates the “in-home-use-only” rule; it allows those in long-term care facilities to qualify for vital technology like power wheelchairs; it sets standards so that technology is only prescribed to those with appropriate conditions; and, it further elevates the education and licensing of providers. Therefore, H.R.942 isn’t just about protecting funding, but also it’s about safeguarding consumers. And, it’s a cost-saver. For example, Medicare currently spends $1.6 billion annually on pressure sore treatments. H.R. 942 ensures access to both the right seating and clinical services to help prevent pressure sores. In this one area alone, a staggering amount of long-term healthcare costs could be saved, arguably hundreds of millions of dollars in the least.

But, again, H.R. 942 isn’t about paper, it’s about people. And, on the Hill with me, lobbying, were among the most amazing advocates, from a dozen or so of us who use complex rehabilitation technology, to clinicians like Gerry Dickerson, who have dedicated their lives to elevating – and, truly, creating – the field of applying complex rehabilitation technology to increase the quality of life for those of us with severe disabilities.

However, what struck me most about this spring’s lobbying effort, coordinated by NCART, was that we all are ordinary people doing the extraordinary – there’s no magic to making a difference, just dedication and tenacity. I mean, Mickae Lee and Jen Westerdahl are both single moms (and Mickae works two jobs!), yet they scheduled and coordinated hundreds of meetings for our lobbying day, literally staying up till all hours for weeks before the conference to make sure the schedule was complete. That’s the beauty of a democracy – anyone can help foster change with good ol’ effort.

I’ve been on the Hill quite a bit, more than maybe even I presumed, as in a few of my meetings, I was greeted with, “Mark, back for your semi-annual visit, are you?” See, the way it works is that anyone can make an appointment to meet with an elected official or staff (more commonly staff), and in our case with a proposed bill like H.R. 942, we have 15 minutes or so to make our pitch – and a lasting impression.

As a Pennsylvanian, that’s usually my lobbying territory, where I met with my two senators and four congressional staffs. Sometimes I’ll sneak in my old state of California, if needed. Nevertheless, six meetings in one day is a pretty intense schedule, where the size of Capitol Hill and its buildings makes it a race from one meeting to the next. I mean, when you have 15 minutes to get from the Rayburn building on one side, to the Dirksen building across the Hill, you put your power wheelchair in high gear!

I had the pleasure of tag-teaming with Matthew Clark, a wheelchair user from Philadelphia, and he’s emblematic of what I’d describe as the truest advocate – it all comes from the heart, just a guy making a difference. You’ve likely never heard of Matthew, as he’s not in the pages of New Mobility magazine, nor does he work in the mobility industry. He’s a photographer and filmmaker who told me, ”I do this [advocacy] because it’s the right thing to do.”

And, Matthew is astoundingly good at lobbying. Going into a congressional office with him was like walking onto a basketball court with Michael Jordan back in the day – you know you’re in the trenches with the best of the best. For starters, he has an I.Q. that has to be 140 or more, able to recite complex facts and figures by the dozens, making the H.R. 942 fact sheet obsolete. And, then, add to that his wit and charm, and he’s untouchable in meetings, winning everyone over with his eloquence and sincerity.

So, as lucky as I was to end up partnered with the best consumer advocate I’ve ever worked with, I wondered how he ended up on the Hill that day? The answer, $10. As he shared with me, long-haul buses travel between Philadelphia and Washington DC, and much like with airlines, the fares fluctuate, where he scored a $10 bus ticket down, but was admittedly disappointed that it was $19 to return home. Literally, Matthew was taking Capitol Hill by storm, advocating for millions of Americans with disabilities, on his own time and effort – all for $29.

Again, everyone lobbying on the Hill that day had his or her own remarkable story. Yet, when I think about Matthew Clark, he embodies advocacy at its best: One person, one voice serving the interests of millions. And, it proves such a valuable lesson to all of us. You don’t need fame, fortune, or formal training to help create legislative change – just the self-initiative to get involved.

Dream On

equalrights

I never doubted that equal rights was the right direction. Most reforms, most problems are complicated. But to me there is nothing complicated about ordinary equality. -Alice Paul

By Mark E. Smith

When I was born, there was no humility in disability, just the medical authority calling people like me the vegetative minority. No, I couldn’t walk, speak or crawl; but, with my toddler eyes and ears, I saw and heard it all. Dream on.

And, as I grew, no one knew what my fate would be, a prognosis based on speculative hyperbole. But, still, with ignorance, everyone all labeled me – crippled. …Yep, that was me. Yet, inside hid the person I knew I could be. And, at night, when I cried — trapped by an ignorant society — even my mother couldn’t comfort me. Dream on.

When I was seven and sent to the back of the church, I was taught children like me didn’t go to Heaven. How could a God, who I came from, not let me with a disability into his kingdom? It wasn’t some Father’s place to say we aren’t anointed by the Lord based on physicality, when inside me, I knew I was appointed, worthy of spirituality. Dream on.

Mainstream education brought taunts and stares – kids who didn’t know better, teachers who didn’t care. I could read but I couldn’t write, so I bought a thrift-store typewriter and clicked the keys, teaching myself to type one night. And the words that flowed were bold and grew, and I knew I had something to say to the world – even at eight years old. That’s right. Dream on.

My family fell apart, ignorance toward my condition stung at my heart, and back in those days, a step into a store meant I could get in, and they had the right to refuse me service, a hypocrisy to no win. America the beautiful, the bold and the brave; but, my wheels of steel made everyone my master, gave me little more than the rights of slave. A country founded from oppression, surviving wars and the Depression, and I still I faced daily oppression? Stigmas did follow me, and I felt this: Where was truth in equality? Dream on.

But, for me segregation didn’t stop my education, and I wouldn’t give up my mind’s elevation. Heart strings tatter, but a spirit that wouldn’t shatter, I’d just move on; different day, same song. Things went wrong, but I’d move on. Dream on.

I remember at the prom when she wouldn’t dance with me, then going home that night, questioning my sexuality – for months it went on, the depression, a repeated song. I awoke in the hospital despite the pills taken, and it registered with me that I wasn’t a soul forsaken. I was who I was and just had to be me, why drown in self-loathing when I could swim in a sea – of acceptance. That had to be me. Dream on.

It all got easier as I went, worth the sweat and the tears that were spent – but who knows. I was always told that life goes as it goes till we grow old, and the forces that once held us down soon push us up from the ground. Our weaknesses become our strength, and those who’ve wronged us, we should thank – adversity from diversity is a character that we build, and successes that are earned create lives that are willed. Dream on.

Still, think what you will, but when I travel from the Pacific Northwest to Capitol Hill, there’s ground to be gained, equality sustained, where one nation for all is exactly where we fall – short. And, until everyone – regardless of disability, gender, sexual orientation, race, or religion, of unity, not division –is seen as humanly proficient, not different or deficient, I will continue to question America, the bold, the beautiful, and the brave as it holds up discrimination and prejudice to save – yes, even in this so-called progressive age. Until there’s equality for all, as a nation we fall. But, as for me, I’m optimistic. I dream on.

Empty Chairs

KITCHENCHAIRS

There’s a grief that can’t be spoken. –Empty Chairs at Empty Tables, Les Miserables

By Mark E. Smith

I’m really striving to keep a super clean house these days. It’s always been tidy, but after 11 years of living there, dust bunnies and cobwebs collect in corners. However, my close friend sneaked into my house while I was away working an Abilities Expo, and did a dramatic deep cleaning, where my kitchen looks new again. So, I’ve been doing my best to keep the house spotless.

Yet, my 16-year-old isn’t so mindful. She has a bad habit of piling jacket after jacket on a kitchen chair. And, with her virtually never home anymore – at school during the day, and drama rehearsal, band practice, and hanging out with friends at night – I’m the cerebral palsy version of Ozzy Osborne, with this over-the-top career by day, but puttering alone in the house in the eves, somewhat lost beyond my work.

So, amidst my immaculate kitchen, I saw my daughter’s myriad of coats, sweaters, and hoodies once again piled on a kitchen chair one evening, and I got really mad. How come she can’t just put these jackets in her bedroom? I’m stuffing all of this in a garbage bag, putting it on the curb, and teaching her a lesson!

Of course, I didn’t really do that. Instead, I went and lay on my bed, surrounded by the silence of the house. And, when my daughter got home around 10pm, I asked her how rehearsal was, not mentioning the jackets piled on the chair.

A few days later, I was working on a project, and a distant colleague raised a very trivial issue, one of no real consequence other than to get a rise out of others. “Why’s he making an issue of nothing?” I asked another colleague.

And, she said among the most profound insights, “Sometimes when people feel a lack of control over aspects of their lives or careers, they focus on that which they can control, the small things.”

Indeed, we do often focus on the small things that we can control when the bigger aspects seem overwhelming or uncontrollable. In the wheelchair world in which I work, consumers sometimes hyper focus on small details regarding a wheelchair, only later to share how overwhelmed he or she is by the entirety of disability experience, that the small issue with the wheelchair was merely a way to avoid facing the larger issues in life. Similarly, think about how often emotions build up in relationships, where a small issue ends up representing much deeper issues. Even in the movies, think about how often one character wants to tell another his or her feelings, but can’t get the words out, instead rambling about something trivial – it’s a classic cinematic tension builder based on human nature. …It’s true that it’s often emotionally easier to hyper focus on small issues rather than tackle the big ones – especially when we’re not ready or don’t feel emotionally safe doing so.

For me, I immediately thought back to the jackets on my kitchen chair. In the grand scheme, it really doesn’t matter if they’re there. But, as a single dad puttering around my empty house, it’s about all that I felt that I could truly control these days in the larger picture of my parental life. After all, my daughter’s growing up, times are changing, and while it’s all good, healthy, and normal, it’s also a bit scary – namely on my own, as a single dad, where my daughter has been my foremost focus. It’s the realization of, Wow, I’m not caretaker of a child anymore, but father of a wonderfully-flourishing young lady…. and where do I fit into all of this, and go from here?

Of course, I know the logical answers. My role remains vital, where my daughter comes home at night, plops on the big, stuffed chair in my master suite, as I’m already tucked in bed, and I listen to what’s going on in her life, asking questions, sometimes giving advice. Sure, she still needs me very much – just in different ways – and I’m forever there for her.

But, the heart isn’t so logical. It realizes that my little girl is growing up, and soon the jackets piled on the kitchen chair will be a fond memory as she heads off to college. And, there’s both a joy and sadness in that process. So, what I’ve realized is that those aren’t just jackets piled on the kitchen chair, but my own emotions as a father watching his truest pride, joy, and love grow up – and rightfully struggling with it all.

And, so for now, I’ll just leave the jackets on the kitchen chair, not worrying about it, but appreciating this stage of her life – our life – before it changes even more. Why strive to control such trivial aspects when I can just enjoy the more important aspects of life as a father.

The Real American Dream

537534_10200108382422591_1767967630_n

By Mark E. Smith

We often hear of the American Dream, but what does that really mean? In my home, it means a lot – because we’re living it.

This past week, I was in Atlanta, working with the Georgia Association of Medical Equipment Services, advocating at the Capitol and its Legislature for sustained mobility funding and disability-related services.

Before I left, my daughter and I sat at our kitchen table, and laid out our 2013 schedules, finances, and priorities. As a family – even though it’s just the two of us – we must be on the same page, as a team, pursuing my goals, her goals, and most importantly, our goals as a family building a legacy.

At just turning 16, my daughter is on her high school’s honor role, and on an Ivy-League track toward college, leaning heavily toward an ultimate doctorate in psychology. She plays and holds a seat not just in the school band, but regional orchestra, too, and is next auditioning for the state level in March. She’s a member of the National Thespian Society, where she acts, as well as serves as Secretary for her troop, and she’s a gallery-shown photographer. This summer, she’s attending George Mason University, where she was nominated as among the top 250 youth leaders in the country, and she’s also volunteering as a counselor at a muscular dystrophy summer camp. Yes, the kid is freakin’ awesome, nailing life at 16!

My career continues in full swing, where I have more corporate, advocacy, writing, and speaking projects lined up than in the history of my career, and what I’ve accomplished in just the first month of the year makes my head spin. Again, I was in Atlanta last week – recently back from Detroit! – now I have a radio interview, magazine columns (both in print and in process), a MDA Muscle Walk fundraiser, which I’m helping coordinate, an on-going book project, engagements in Nashville, and Los Angeles, and a full-time corporate job, message board, and weekly blog. And, that only gets me to mid March! (Then it’s Capitol Hill time, Abilities Expos… you get the idea….)

Yet, as a family, my daughter and I not only have to annually budget time, but also finances. We take money management very seriously in our home, where it’s not just about wealth-building and security, but “stewardship.” We believe that what we’re blesses with isn’t truly ours, but that we manage it for a greater good. We live totally debt free, put necessity before want, share with others, and give as much as we can to charity. We don’t live with a scarcity mindset, where we hoard for ourselves; rather, we live an abundant mindset, where there’s enough for us to really enjoy life and not worry, but we have the ability to give generously, as we believe giving to others is the absolute most fun that one can have with money (and, it’s the reason why we’re “stewards” of income – that is, to ultimately do good with it for others, as opposed to seeing it as ours to keep).

But, here’s what struck me about our 2013 family schedules, finances, and priorities meeting: We’re living the American Dream. In two generations – mine, now my daughter’s – we’ve changed our family tree beyond what many would deem possible. The number of firsts for us is astounding. Although a non-traditional family of just the two of us – there’s no mother figure in our family photos – we personify the American Dream.

See, it’s easy to look at me in a suit and tie traveling the country, speaking to audiences, or read my magazine columns, or know of my corporate career, or see me sunning on my boat or jetting off to Vegas, and say, Sure, Mark, life is easy for you when you and your daughter have money and opportunity….

However, the fact is, I was born into less than nothing, with the four generations before me living in abject poverty, all addicts, most serving prison time, none with an education, most just to steal and harm whoever they could. As I open some of my speaking engagements, On the day I was born, my grandfather was in prison, a lifelong criminal; my grandmother was a heroin-addicted prostitute; my father was an alcoholic, drinking in a bar at noon; and, as I was born on that day, I wasn’t breathing….

And, my family tree got worse from there. My grandmother called my mother on the phone and shot herself in the head, committing suicide. My grandfather died of a heroin overdose after endless years of prison time. Both my parents were Skid Row alcoholics, dead by the time I was 40. And, it all made sense, going back for generations on both sides of my family.

So, how did my daughter and I end up here today? Well, there’s been a lot of hurt, pain, struggle, and success in-between; but for me, it all started with getting myself in and out of a bathtub at age 11, where I simply learned that with unyielding tenacity and vision, my potentials could extend as far as I wished. I couldn’t just change the direction of my family tree, I could grow my own. …And, I did.

I was the first one ever to graduate high school in four generations. I was the first to go through college. I was the first to never serve jail time. I was the first to have a career. I was the first to own and invest. I was the first to not be an addict of any sort. I was the first to not do what those before me and around me had done, but to live by a radically different moral and ethical compass. I was the first to live the American Dream.

Yet, the climb has never been linear. Many of the ghosts of my heritage have chased me at times. At 17, I awoke in intensive care after my own failed suicide attempt. I got myself horribly in debt in my 20s. And, I have yet to sustain a life-long romantic relationship. Yet, every time I’ve fallen down, I’ve used second chances, which we all have, to make things right. I immediately got into counseling at 17; I worked my way out of debt in my early 30s; and, at this writing, I’m currently in counseling, striving to take accountability for a string of ended relationships, and get this whole love life thing right. Indeed, the beauty of the American Dream is it gives each of us the chance to change the directions of our lives at any time and redefine who we are. Again, we can get knocked down and fall down, but we have the chance and the choice to get up stronger every time. And, I’ve never passed on that opportunity.

And, while my daughter’s life hasn’t been a piece of cake, either – her mother ultimately unable to break free of her past and demons, to the point where she hasn’t been in my daughter’s life – my daughter has taken the torch of the American Dream, and ran with it. What we’ve both learned is that life isn’t what you’ve been born into; rather, it’s what you make of it, and despite hardships and hurt, you can move through it all, day by day, hurdle by hurdle, to success that you’ve earned by simply striving to do right – that’s living the American Dream.

I Am Who I Am

735848_10151378064262268_1264377270_o

By Mark E. Smith

I’m heading back to Detroit at this writing. It seems that city, which has far more going for it than most realize, can’t get enough of me. This trip, I’m giving the keynote address at a healthcare leadership conference for doctors and hospital executives. My theme is,”The Quality of a Practitioner’s Character Dictates the Quality of Care.”

See, I know a little bit about the subject – or, more aptly, I’ve known the impact of a practitioner’s character on patients’ care since right before my birth.

Twenty minutes or so before my birth, my mother was given an epidural, a routine anesthesia to lessen the pain of child birth. However, an incorrect amount was given by the anesthesiologist – a massive overdose – resulting in my mother not breathing, with me quickly born not breathing, as well. To make matters worse, the delivery room staff forgot to have an infant respirator in the room or even on that hospital floor, and when they did get one, it had a hole in it, not properly maintained. I was manually resuscitated by the delivery doctor, minutes of brain-damaging loss of oxygen having passed.

It later came out in court that, in an attempt to bolster his income, the anesthesiologist was illegally moonlighting, working revolving shifts unbeknownst to anyone between a military hospital and the public hospital where I was born. By his own admission, he had been working 90 hours, with virtually no sleep, when he administered my mother’s overdose of anesthesia.

Now, it is true that there was a snowball effect. The overdose of the anesthesia caused me to stop breathing, then the lack of an infant respirator prolonged my loss of appropriate oxygen, and then the final broken infant respirator was simply a topping on the cake, you might say. And, it all culminated in my severe cerebral palsy.

Again, I know a little bit about how the quality of a practitioner’s character dictates the quality of care.

Now, there are a lot of potentially different outcomes looking back. If the anesthesiologist hadn’t given my mother the overdose, everyone agreed that I wouldn’t have cerebral palsy. However, what if a nurse had ensured that an infant respirator was in the room – would that slight attention to detail have prevented my condition? Or, what if someone ensured that the broken respirator was repaired – would that slight attention to detail have lessened my condition?

The answers in my case are, no one will ever know. What happened, happened. And, truly, it’s of no concern to me. I’m proud of what I’ve made of my life, where it’s about potentials, not limitation, where it’s about passion for what I have, not longing for what I might have lost. I am who I am because of who I am – and I would never change that. I would never change me.

Yet, for others to come, my experience does teach a valuable lesson: The quality of a practitioner’s character does dictate the quality of care.

Now, if you’ll excuse me, my publicist and I have a plane to catch. Cerebral palsy, no matter – I’m rock-starring this gig!

Bigger, Faster, Stronger

photo (14)

By Mark E. Smith

Alight, I admit it, I’m one of those sentimental fools who gets fired up about the New Year. I’m not about New Year’s resolutions, though. I’m about continuing courses, plotting new courses, and forever getting better at this thing called life. And, I’m stoked for 2013, where my motto is Bigger, Faster, Stronger – that is, in all aspects of my life.

I’m hitting the ground running (not literally, of course, as curing myself of cerebral palsy is far too lofty of a goal!), pumped with a new book project. Books in progress are a bit like creating a new product, where you keep them a bit under wraps till you’re closer to launch (it’s a competitive edge thing). However, it’s about mobility and people – and that’s cool stuff! I’m looking forward to getting out on the road, having some fascinating conversations with mobility and disability icons, and undoubtedly learning more about all of our potentials in life to do what others might not dare in the face of adversity.

My role as father continues as my most cherished. On the one hand, my daughter and I are closer than ever, in a great emotional groove. On the other hand, my daughter is growing up fast, demonstrating such amazing potentials, a dad’s true pride. She’s on the honor role; is in the school and district bands; is a member of the National Thespian Society, and acts; she has her photography currently on display in an art gallery; has an Eagle Scout boyfriend; and, is in driver’s education (first car, March!). So, I’m learning more and more that parenting isn’t about letting go of the rope, but giving a bit more slack – and I’m so proud of not just how she’s handling her independence, but also who she’s becoming as a young woman: compassionate, humble, loving, and sincere. It’s extraordinary to watch as a parent, and my life would be merely a blank page without her. I’ve had my adversities in life, but the single blessing of my daughter trumps them all toward my never-ending gratitude.

Of course, I continue working on myself physically, emotionally, mentally, and spiritually. As iconic wheelchair racer and amazing spirit, Candace Cable, recently flattered me with, “Yes, Mark, I admire your ripped-ness,” I continue working out like a maniac in my gym. I’ll be 42 in March, and I’m physically in better shape than ever. I guess it’s one thing to have cerebral palsy, and another to be middle-age. But, to be both and be ripped… well… that’s an impressive feat, if I say so myself (and I do!). I can’t wait to see how much farther I can push myself in the coming year. Seeing your body sculpted at this age is admittedly fun, especially when few expect it from one with my disability level. But, it’s really the challenge that inspires me – the actual work it takes to literally become bigger, faster, stronger! I met ‘80s icon, Rick Springfield, recently, who’s 63 and he’s totally ripped, so if Rick can look that awesome at 22 years my senior, I better keep pushing bigger, faster, stronger!

Also toward the physical – and admittedly superficial! – I’m growing my hair out for the first time in 15 years. However, I have no intention of just growing my hair out. No, I want the craziest rock-star hair that styling products can make. I want the kind of hair that it takes an hour to make it look that messy. I want the woman in my life to run her fingers through my hair and think it’s the hottest thing ever. I want to come off stage, and have someone say, “That was a great talk, but your hair is freakin’ awesome!” I want to make Russell Brand look sane!

Toward the emotional and spiritual, 2013 turns a major page in my life. I’ve written a lot about my struggling with feeling worthy of love – and, Lord knows I’ve struggled! But, I’m done struggling. I’ve realized that those in my past incapable of truly loving me don’t define my value. I love fully, I strive in my relationships, and I give all that I have to those I love – and they now give back to me. I’m done with this not feeling worthy of love bull. I’m worthy because I’m me, and you’re worthy because you are you. I’m not longing for love or needing love – I am love, and that’s enough. Put simply, I have ridiculous amounts of love to give, and my heart is more receptive than ever – let the love in, baby! And, what’s not to love about a ripped bod and forthcoming rock-star hair?

And, in the area of love, I’m looking forward to catching up with so many great friends in 2013. I believe that the quality of our friends reflects the quality of our character and, ultimately, the quality of our life. I’ve been blessed with developing among the wisest, sincerest friendships that I could fathom. They’re scattered around the country, and my time with each of them throughout the year always teaches me a bit more about myself and life – I never leave a visit or conversation without growing somehow in the process. So, get the guest rooms ready because I’m showing up in 2013 – it’s a priority of mine! (And, when I say, “showing up,” it means I’m like Publishers Clearing House – I’ll just appear on your porch with balloons one morning.)

As for spirituality, I’m totally excited to once again be spending my birthday, the first week of March, in Las Vegas – you know, Sin City. …Wait, that doesn’t sound spiritual at all! Actually, Dave Ramsey is doing a personal growth seminar there that week, titled, “Living a Legacy.” Dave isn’t everyone’s gig, as he mixes the biblical with the practical to convey ethical leadership skills in business, family, and life, but he sure nails his subject matter as a brilliant speaker. So, I’m excited to close the first quarter of 2013 on such an inspired adventure – and further define my legacy in a bigger, faster, stronger kind of way.

Of course, bigger, faster, stronger applies to the mobility industry, as well. We not only have bill H.R. 4378 gaining momentum – which strives to gain complex rehab technology its own funding class and removes the in-home-use-only funding rule – but CELA is a bigger educational event this year, both great causes that I’m focused on (look for my column in the February issue of HME News). On the product side, you will be seeing innovation in a lot of power mobility areas – can’t say what, but cool stuff is in the pipeline.

I could go on and on because I’m so pumped about 2013, but my point is this: I have no New Year’s resolution. But, what I can promise you is that for 2013, I will be bigger, faster, stronger in all parts of my life – namely because I never stop loving, learning, and giving. If we just follow those three paths, we can’t help but become bigger, faster, stronger! …But, rock-star hair takes a little more time.