facing challenges – Page 14 – PowerchairDiaries

Me Being Me

By Mark E. Smith

At 43, I’ve had my challenges in life, but with a mix of hard work, the support of others and luck, I’ve been privileged to have accomplished a bit, from fatherhood to a pretty cool career. Nevertheless, someone asked me what my ultimate dream is from here? My answer could have been related to a next career challenge or maybe a materialistic goal like a lake house. However, none of that’s the case – its all too easy, too meaningless in ways. My answer from the depths of my heart was, “I just want to be me.”

Assuming that we’re healthy, productive, loving individuals, isn’t that our ultimate dream: to not only be free within to be ourselves, but to be truly embraced for who we are by others? How many of us have felt at times that for any number of reasons – a work environment, a relationship, family expectations – we couldn’t just be ourselves? Maybe it’s a seemingly huge issue like if your family knew you were gay, they’d disown you. Or maybe it’s a seemingly small issue like someone correcting your grammar. Or, somewhere in the middle, where your love interest wants to change something about you. All of these and countless other examples prevent you from being you, and it’s painful and it’s isolating – and I’ve been there.

I had a cute conversation with a buddy of mine. He shared with me that if he could find a woman who loved comic books as much as he does, she would be his soul mate. See, he’s had girlfriends in the past who’ve ridiculed him for collecting comics, so finding a woman who loves comics would be a dream come true. Yet, that’s not truly what he needs, is it? He doesn’t need a woman who loves comics; rather, he simply needs a woman who loves him for him, comics and all. It’s what we all want and deserve: to be loved as-is.

And, that is an epic battle of the heart for many of us, where we just want to be rightfully loved as-is, where we’re perfectly imperfect and nothing about us needs to change to fit in or be loved. We just need to be us and be loved on that merit alone.

Unfortunately, others may not get that concept and so it’s up to us to set the standard and set the boundaries. I genuinely love people, and there’s nothing I enjoy more than a great conversation. I don’t care who you are, what you look like, or how you live. Assuming you’re doing right by others, I don’t want to change anything about you. I just want to know the real you.

It’s this way of embracing others that I more and more expect in my own life. Regardless of the situation, I’m just going to be me as authentically as possible. I don’t need to prove anything or be anything – I just need to be me. And, when I’m not good enough for someone or criticized for just being me, I’ve developed the strength to put the onus back where it belongs – on the person doing the pointing.

I am me, you are you, and for anyone who wants to see flaws in us or seek to change us, well, we need to hand him or her a mirror and go about being just who we are: perfectly imperfect, as-is.

Really Skilled at Sucking

By Mark E. Smith

Imagine spending years running alone. Per your pace, you’ve gone from a 30-minute walk of a mile to running a 15-minute mile. That’s quite an accomplishment.

But, then, you get a running partner, and that running partner runs a 6-minute mile. What would you realize in this process?

For me, I’ve realized that this is my life and I’m really good at being really bad at much of what I do. I suck, and I’m proud of that fact. You can’t suck at as much as me without a lot of hard work and determination.

See, for years now, it’s been just my daughter and me in our home, where I live as independently as possible with cerebral palsy – and I’m pretty good at it, moving along at my own pace. A lot of it takes time and tenacity, but so be it. I’ve always looked at my independent living skills as the result, not the effort. I don’t care what I have to do as long as I can accomplish the task.

However, now I have a running superstar by my side – my beautiful fiancee – and it’s made me realize that I’m really good at being really bad. A task that takes me, say, 10 minutes on my own, takes one minute with her helping. And, for the most part, I’m secure and appreciative of her helping because I equally contribute to her needs in other ways.

Nevertheless, we’ve had an ongoing dialogue about how beyond my neanderthal stubbornness, she’s raised good points that just because I can accomplish a task doesn’t mean I do it the easiest way, that I often make things harder than needed, that just because I’ve used a haphazard technique for 20 years doesn’t make it necessarily the best approach.

Beyond me, her point is one that’s strikingly universal: Questioning how we do what we do can help us find better solutions, from our careers to parenting to everyday life. But, I have my point, too: It’s taken me a lot of years to get this good at doing independent living tasks really badly – that’s hard to give up when you’re so talented at sucking as I am!

Honoring Being Wanted

By Mark E. Smith

I’ve just returned from my daughter’s first college visit. It was actually a bit more than a typical college visit that high school seniors do because she’s being recruited by the school based on her achievements. As a dad, I see aspects like a waived application fee, streamlined early application, early acceptance and a scholarship as all the reasons to go there – plus, it’s a great school in a great part of the country for internships and a subsequent career. However, there’s a more profound reason why my daughter is leaning heavily toward this particular school: she’s wanted.

So many people want; yet, in most circumstances, wanting isn’t emblematic of success. However, being wanted has everything to do with success. As I’ve told my daughter, anyone can want to go to any college and apply, hoping to get in. However, the ultimate success is in being sought out based on merit, where a college wants you.

The realized value of being wanted instead of simply wanting, applies to so much of life. Top executives never apply for jobs – they’re recruited. When we’re in the most fulfilling relationships, we’re desired by our partners. Among the greatest successes in life involve being wanted, not just wanting.

However, there’s a caveat to being wanted, one that I continue seeking to instill in my daughter. Being wanted has nothing to do with entitlement, but everything to do with unyielding dedication and responsibility. You earn being wanted by being extraordinarily dedicated, and then you honor being wanted by striving even more. In my daughter’s case, she’s being wanted by a college because she’s worked hard in high school, but now she must work even harder to honor the college’s recognition. The recruited executive can’t rest once he’s landed among the country’s top jobs, but must honor it by working even harder. And, in our relationships, we must always honor our spouses with love and attention, where desire is unwavering.

I’ve been fortunate to experience the privilege of being wanted via the writing portion of my career. I used to have to hustle and try to secure paid writing jobs. However, I’m fortunate that now editors come to me with writing assignments. However, tight deadlines and working late nights are par for the course — again, the privilege of being wanted must be honored with dedication or it won’t last. Being wanted means being unyielding in what you do.

Wanting is great, especially when there’s effort behind it to achieve a goal. However, being wanted is emblematic of ultimate success because it’s where dedication intrinsically leads our lives to new levels of potential and opportunity.

Not Different But Authentic

By Mark E. Smith

I had the privilege of being at a public venue with a five-year-old and his mother. The little boy uses a power chair due to a severe form of muscular dystrophy – and, man, he’s a go-getter! He’s happy, adorable, and a people magnet. And, everyone at the event saw what I saw: An adorable little boy with the world at his finger tips.

Yet, as he was literally surrounded by crowds who thought he was the cutest kid ever, there was a side that many didn’t know, nor wanted to know. Everyone wants to be inspired and delighted but a cute kid buzzing around in a power chair being… well… a kid. After all, it’s painful to think of any other possibilities, that maybe his life isn’t what it seems, that it might be disturbingly complex, something no child should experience.

And, so, as he charmed the crowds, I was with his mom, knowing the whole story. The seemingly care-free little boy averages one hospital stay per month, sleeps hooked up to a breathing machine, and he must be turned every few hours to keep his lungs clear at night. For his mom – single, with three children – this means around-the-clock care. And, get this, she works from 12:00am to 3:00am as a reservations clerk from home to help make ends meat. The carefree child and family that all assumed, in fact, has unfathomable challenges every day. I discussed the challenges with the mom and gave her a hug, and she got a bit teary-eyed.

How many of us can relate to this story? How many of us gloss over the challenges of others because they’re too painful to learn the realities? How many of us hide our own struggles because we don’t want others to see us as different, to know how difficult our lives really are?

But, we all have struggles. And, when we don’t recognize them in others or disclose our own at appropriate times, a facade goes up and we don’t make connections to the depths that our humanity allows. No, we shouldn’t then treat each other “differently,” but more authentically.

My point is, let us strive to recognize and embrace the entirety of others, and allow others to know the entirety of us, struggles and all, where adversity isn’t ignored but unites.

Who Really has the Power

By Mark E. Smith

I thrive on possessing power. But, not in the way you might think. In my business and family, I, in fact, practice the opposite, seeing my roles as humbly serving others. And, yet, when it comes to me, power is synonymous with personal accountability. I learned at an early age that in order to have power, you must be personally accountable; and, if you’re not personally accountable, you have no power. You can control life or life can control you. It’s initially circumstance, but ultimately choice.

It all started with my failing Biology in high school, namely because I wasn’t doing my homework. I wanted to do my homework, but my home life was a mess. My mother and stepfather made our home Hell. I came home from school each day to my mother in the most horrendous conditions – always drunk, but sometimes high, overdosed, manic, or suicidal – and then my stepfather came home drunk, where they fought and smashed up the house. My mother loved to break things and my stepfather loved to scream, and it made for long nights. On top of that, I was struggling to develop my independent living skills due to my cerebral palsy. How was I to somehow do homework with so much volatility in my life?

I lay in bed looking at my report card one night feeling ashamed because it was dotted with Fs and Ds. I’d worked really hard to be mainstreamed in an era when it wasn’t common practice, and I was watching it all slip away. I tossed the report card on the floor and decided my parents and cerebral palsy weren’t going to dictate my grades. I had the power, not them.

I went from a failing student to the honor roll the next report card period by literally locking my bedroom door in the evenings and letting my parents trash the house and there lives as I focused on my homework. I remember typing my homework while trembling and crying as my mom pounded on my door, screaming. Still, I wasn’t giving her power over my life. My grades were my responsibility – and I had the power to succeed over all.

Those years of finishing high school with A’s didn’t make me smarter, but they did make me wiser. I learned that our lives, in the long term, aren’t dictated by anyone or anything, but us. Circumstances may set us up as victims, but we can choose to be victors.

Righting Wrongs

By Mark E. Smith

From the back of the concert hall, I see my daughter in the very front, standing on the choir risers. Even though the distance is far, we make eye contact and I smile big….

Often, it’s our obligation to make things right. If we don’t, then we, too, are perpetuating a wrong or injustice, further harming others. No, I don’t mean make things right because we’ve intentionally done wrong. Rather, I mean that if there’s a cycle of dysfunction, we must have the courage, wisdom, and tenacity to say, Enough! This destructive pattern not only stops with me, but actually changes with me. It’s a really powerful process where you, as a lone person, can change your life, your family tree, and the lives of many around you.

We unfortunately are cyclical creatures, following the pack. Although we have free will and astounding amounts of opportunity, we rarely use it. We know that our life paths are alarmingly dictated by those of most influence in our lives. The surest way to be a teen parent is if your parents were teen parents. The surest way to become an alcoholic is have parents who were alcoholics. And, the surest way to being a terrible boss is to be groomed by a terrible boss. These risk factors create systemic, generational wrongs – and they go on and on.

And, it’s up to us – and only us – to stop them. No rule book said that because my parents were uneducated, impoverished, alcoholic-addicts, I had to follow that path. Sure, statistics said I would. However, I’m not a statistic. I’m an individual. And, I’ve long known that I alone had the power to right the wrongs in my life – and I continue working at that every day. This is my life and no one dictates its potential but me.

Breaking the cycle isn’t easy. I’ve been there, and it’s a never-ending process. It’s a difficult journey because there’s no road map and usually no support. It’s like walking on ice for decades, where as long as you stay up, you’re fine, and the fear of losing footing keeps you laser focused on every move you make. Yet, the struggle is motivating, righting wrongs is empowering, and breaking cycles is liberating. You may have been born into it, but you can likewise grow out of it. Heritage, genetics, environment, upbringing – you can be more than all of it. Right the wrongs, break the cycles, and live to your potential.

…And, my daughter – born to me, where my examples of fatherhood were grim and bleak – smiles back as the choir begins to sing.

Pink Undies in the O.R.

By Mark E. Smith

So, I’m laying stretched out on the surgical hospital bed in my neon-pink underwear and nothing else. And, I’m great with it. Muscular, with my trademark tattoo of the universal wheelchair symbol on my shoulder, I feel like a superhero. Cerebral Palsy Man here to save the day! But, the medical staff is here to save me – or at least figure out how to fix me up so they don’t have to literally save me. This is pre-surgery surgery, or as I like to call it, surgery.

My sister is with me because she’s had the worst luck of anyone I know – cancer, a critical automobile accident, over 20 surgeries. She knows the practice of medicine so well that I often have medical professionals ask if she’s one, herself. In this way, my sister is a double-edged sword: she’s great to have in the room as a medical advocate, but I don’t want her touching me out of fear her bad luck will rub off.

The nurse loves my pink undies, and I think she’s a bit charmed by my sense of humor around it all – my pink undies, flaunting my body regardless of disability, and my optimism toward the procedure itself.

Yet, I’m genuinely scared. I’m so scared that I’ve waited to do this far longer than I should have. It was my physician and friend who finally convinced me, knowing how potentially serious this could all be if I kept putting off surgery and treatment of anything else found in the process. Then once the specialists told me of the extreme risk my health was under, I knew I had to take responsibility, not just for myself, but for the sake of those who love me. And, I still have a lot of lovin’ to do.

The nurse asks me to put on the hospital gown, and I want to wear it as a cape. But, she insists I wear it the right way. My sister helps me put it on as I pout like her four-year-old. But, I want to wear it like a cape!

The anesthesiologist comes in and notes my “chronic” cerebral palsy. Is there non-chronic cerebral palsy, where you only have it on, say, Thursdays? She then stands at a computer and asks me questions from the screen, including, do I get short of breath walking up stairs?

My sister bursts out laughing and I point to my power chair parked against the wall, saying with absolute seriousness, “Only when I’m carrying that up stairs.”

Finally, the surgeon comes in to give me the rundown before we go into the O.R. He’s wearing the exact model watch I own and love, and for a moment I wonder if a man of such impeccable taste is wearing pink undies, too?

Now I’m getting even more scared, and the anesthesiologist isn’t helping. The initial shot that was supposed to put me in La-La Land still allows me to recite the first page of Chaucer’s Canterbury Tales – from the tenth grade. Still alert, I watch out of my peripheral vision as they roll me into the O.R. And, I see the size of the camera they’re going to slide down my esophagus and the table of tools they’ll ultimately use to take three biopsies. And, I watch as the anesthesiologist injects a new drug into my I.V.

Next thing I know, I awake. I think I’m still in the O.R., but as I open my eyes, a nurse tells me I’m in recovery. I’m still on my back, with the gown on, but I’m oddly now wearing pants, socks and shoes, with no recollection of the procedure or getting dressed.

“How are you feeling?” the nurse asks.

“…Like the morning after an awesome night in Vegas,” I reply. “How’d I end up here, and where’s my shirt?”

Confessions of a Bad Alcoholic

To John, February 5, 1951 – July 24, 2010

By Mark E. Smith

If you’ve read the research of recent years, then you probably already know about me: I’m an alcoholic.

Indeed, the medical establishment has concluded that alcoholism is hereditary – that is, if your family tree is lined with drunks, you’re a drunk, too. Or, you’re at tremendous risk of being a drunk. Walking past a bar or liquor store is like a metal shaving passing a magnet – it wants to suck you in!

For me, being an alcoholic is torturous because I think it’s the only thing I’ve failed at. I mean, I’m a bad alcoholic – really bad. My parents, grandparents, great grandparents and probably their parents were great at it. I mean, my mother and father had it down to a science – it’s not easy losing everything, including your life. But, me, I’m a terrible alcoholic. I’m so bad of a drinker that I haven’t drank today, nor did I drink yesterday or the day before or the day before or the day before or the day before….

But, my alcoholism even gets worse, pathetic, really. I’ve never hidden bottles, lost jobs, sobbed, Please take me back, ruined a wedding or child’s birthday party, bathed in cologne, slept on the front lawn in my clothes, wondered how my car keeps getting smashed up, vomited blood, feigned vertigo, passed out with a lit cigarette and burned my fingers, lied to everyone about everything, stole money from my child’s piggie bank, stood with belligerent narcissism before a judge, drank because of this or that, drank vodka from a water bottle at church, hugged a tree while the Earth spun at tremendous speed and I urinated on myself, or explained to a bank teller why my signature doesn’t match. Yes, I’m a terrible alcoholic.

However, here’s what I’m really good at: a little thing called personal accountability. Unlike the color of my hair, hereditary doesn’t dictate jack squat when it comes to my being an alcoholic or not. Life gives me free will to choose my path. And, while I understand the science, it’s 100 percent my choice to drink or not to drink. My mother did nine months in jail due to her third DUI, and upon being released, she stopped by a liquor store on the way home and downed a pint of vodka. Time and time again, I’ve watched people around me choose to re-elect life-destroying alcoholism, while others choose sobriety (and the science behind addiction recovery shows that the only time alcoholics maintain sobriety is when they literally choose to).

In this way, I’m among the worst alcoholics you’ll ever meet because I’ve turned my back on my own heredity.

The Tortoise Mindset

By Mark E. Smith

No matter how many times I’ve read Aesop’s fable, The Tortoise and the Hare, the tortoise always wins. Logically, at some point shouldn’t the hare win? After all, the hare is physically faster.

The answer is, no – not in the fable and not in life. Aesop, a slave in ancient Greece in the 5th century BC, was onto something: Dedication and perseverance always pay off in the end. Think about every aspect of your life, from health to career to relationships to finances – does taking the easy way ever work in the long run?

Never. The University of Wisconsin did a study (one example of many) on how long it takes to get in true physical shape. After six weeks of rigorous training, there were no results seen in the sample group; three months showed progress; but, it wasn’t till one year, then four years that there were significant physiological changes. Everyone wants a quick fix to shed those pounds and have six-pack abs, but there’s no such thing. However, you can absolutely do it if you have a tortoise mentality, where dedication and perseverance will pay off over years.

Want to be a millionaire? Maybe winning the lottery, flipping houses or playing the stock market is the ticket. No, the hare loses again. In the U.S., tortoises get rich. The average millionaire is 57, works over 50 hours per week, has a graduate degree, and is first-generation wealthy. What’s been their number one wealth-building tool? Saving 20% of their monthly take home pay over their career. Put simply, you get rich over decades, not overnight.

Of course, in relationships, the hare must win, right? Love at first sight rules all. Statistically, not so. See, your odds of staying married increase if you date for at least a year before tying the knot, and those who get married around age 30 are much more likely to stay married than those who get married younger. Want the healthiest marriage? Be a tortoise and take things slow and steady.

I live and work in the world of disability experience, where challenges abound for many of us. And, what I’ve learned is that rehabilitation doesn’t stop when released from the hospital; rather, it’s truly just beginning. There are no quick fixes, and some skill sets – from the physical to the emotional to the mental – can take decades to master. Heck, every morning I still work on the coordination needed to tie my shoes and button my pants– after over 30 years of trying. Yet, it’s the tortoise mindset that keeps us striving. If we simply stay dedicated and persevere, we will succeed in one way or form. It can take 20 or 30 years, but success will come.

The examples go on and on, but here’s the point: there’s literally no secret to success. Success isn’t luck of the draw or magic. We need only to look to Aesop’s fable of the tortoise and the hare – a slave’s philosophy from ancient Greece – to know that success is a marathon, not a sprint.

The Real Investment of Complex Rehab Technology

By Mark E. Smith

I strive not to overlap my print writing with my online writing because, really, there’s too much of my work floating around the literary world as it is. How much of me can any one reader take? However, I’m crossing my own boundaries and linking you to a very poignant piece in this month’s print edition of Mobility Management Magazine. You’ll learn a bit more about my life journey — and hopefully a bit more about others’ and your own. http://mobilitymgmt.com/Articles/2014/06/01/Complex-Rehab-Technology-Investment.aspx