wheelchairjunkie – Page 19 – 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.

Learning to Love to Capacity

By Mark E. Smith

Currently, with tremendous strain, I can bench press 210 lbs. one rep. But, I don’t. Instead, three days per week, I bench press 120 lbs. 20 reps, then I drop to 100 lbs. and bench press another 20 reps. Guys all boast how much they can bench press one rep because it sounds impressive. However, it’s truly a specious exercise – they’re not building endurance or true fitness because they’re only doing it once, lifting beyond their real capacity. Me, I choose to lift less weight at higher reps because I want to build meaningful fitness to my genuine capacity.

It’s a lesson from the gym that’s even more important in our relationships. We should only represent ourselves to our truest capacities, as well as recognize the true capacities in our partners. Otherwise, relationships fail and people get hurt.

All of us mean well going into relationships. We put our best self forward and we see only the best in our love interest. Yet, it’s so easy to get caught up in that which we’re not. We want to be what the other person seeks, and we want him or her to be what we seek. And, it all works perfectly – that is, till we realize one or both of us are beyond our capacities. It’s like my bench pressing 210 lbs. I can do it once to impress, but I can’t sustain that level. If you want the real me, I bench press 120 lbs. really well.

In relationships it’s vital that we know our true capacities from the start, adhere to them, and truly recognize our love interest’s capacities. It’s just being honest, and when we do this, it dramatically reduces the odds of someone getting hurt.

Yet, it’s tough to do. It’s so hard because ideals don’t always align with reality. What we want in a relationship can be the antithesis of what we’re capable of. There are classic examples we all can relate with. Someone wants a relationship, but makes no time for it. Someone wants a relationship, but is emotionally still buried in a past one. Someone wants a relationship, but doesn’t have the emotional health to cultivate it. We’ve all done this, experienced this or witnessed this – and it only results in pain.

Bishop T.D. Jakes talks about the importance of realizing our capacities for love and how they vary based on who we are and what we’ve been through. He uses the metaphor that if we’re 10-gallon people looking to be filled with love, we’re never going to be filled by someone who only has an ounce to offer. By the same token, if we only have an ounce to offer, that’s fine, but let’s know that we can’t promise to give more than we have. There’s no right answer, just an honest one.

In this way, we must approach a relationship with accountability on our part, and clarity toward our partner’s capacities. We may want a certain type of relationship, but are we capable of it, and are we being honest and fair to our partner? And, are we able to view our partner with clarity, ensuring he or she is capable of the relationship?

The key to this is utter honesty and following our instincts. If we overextend our capacities in any way, it never feels right, and we have an obligation to stop it or, ideally, be authentic enough not to do it in the first place. Similarly, if our partner’s words are contradicted by actions or circumstances, don’t overlook that. Recognize each other’s true capacities and respect them because if you don’t, someone will get hurt.

Now, this isn’t psycho babble or new-age psychology, but common-sense life experience. I’ve been on both sides, as many of us have. I’ve tried to be someone who I wasn’t, and it didn’t work. And, I’ve overlooked signs in others that I shouldn’t have. There was no ill will in any of it, just intentions wishful beyond our capacities. What I learned in the process, though, is that there’s ultimate joy in being authentic in acknowledging both our own true capacities. Maybe the relationship will reveal itself as soul mates or prove unrealistic. It’s the variables of love. But, the beauty in being authentic in our capacities is that we have the honesty, authenticity and courage to just be us.

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.

Zach Anner Takes Over

By Mark E. Smith

You know Zach Anner – the man of all media. Well, whatever you do, don’t let him in your office….

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?”

Zach And I Are In Love

By Mark E. Smith

It’s official: Zach Anner and I – the two most eligible men with cerebral palsy in America – are in love.

Now, when I say that Zach and I have been the two most eligible men with cerebral palsy in America, what I really mean is, we couldn’t get dates if our lives depended on it. And, while we were tempted to date each other out of pure complacency, it turned out that waiting for the two most beautiful women in the world to sweep us off of our feet (which, let’s be honest, isn’t hard to do when we’re not on our feet to begin with), turned out to be a better idea. I should clarify that we weren’t both waiting for the two most beautiful women each, which would equal four women in total and would be really weird and a TLC reality show, but one amazing woman each. And, we scored!

In an uncanny twist, about 10 months ago, Zach and I started falling in love – with two separate women, not each other! – in Southern California. And, amazing women they were (they, of course, still are amazing, even more so, but I’m trying to keep my tense straight). Zach’s beloved Gillian is an internationally-known singer-song writer, and my beloved Holly is an artist. Both women are creative, witty, caring souls, who’s personalities truly radiate at a tangible level. Their depths of character range from funny to empathetic to being up for all that life has to offer. So, how did Zach and I ultimately get so blessed with such amazing women?

Cerebral Palsy. Fellas, trust me on this one. Forget the cheesy pick-up lines, fancy cars and medical degrees. All you need to attract a woman is cerebral palsy. Even if you don’t have cerebral palsy, say that you do. You can have a Ferrari and medical degree, but unless you tack cerebral palsy on the end, you don’t have a chance. Why? Because every woman knows cerebral palsy is where it’s at.

Of course, cerebral palsy has nothing to do with Zach and my finding love. The truth be told, we know the real secret to our finding the two most amazing women in the world: We’re just ourselves. What makes Zach and me who we are is just that – we’re happy as we are, cerebral palsy, poor posture, twisted senses of humor and all. And, with self-acceptance comes a confidence and comfort, where we have the ability to laugh and love and embrace life with an enthusiasm that’s contagious. We’re easy to love, but we equally love easily, where we know that vulnerability is a strength, empathy is a gift, and a true lover is also a best friend.

If you want to be loved for you… well… just be you.

Awesome socks don't hurt, either! — Awesome socks don’t hurt, either!