Facing the Uncertain

By Mark E. Smith

If you speak with others about the effects of their disabilities toward their futures, you’ll hear a common theme: Uncertainty.

What’s interesting, though, is that most aren’t simply speaking of the literal uncertainty of their physical condition – as in, will it get physically better or worse or remain static? Rather, when most speak of how disability breeds uncertainty into their futures, they’re speaking toward the larger picture – that is, health, career, family, finances, and so on. To paraphrase the sentiments of many, As I move forward with disability, I’m overwhelmed by all of the uncertainties in my life….

Yet, what if we challenge such universal thinking with a provocative question: Does disability, in itself, truly create inordinate amounts of uncertainty in our lives, or does disability simply highlight the universal uncertainty in life, itself?

To get to the heart of the answer, we need merely to consider the world around us, from as close as family members to as seemingly removed as the stories that we see on the nightly television news – from local layoffs to distant disasters. After all, how much certainty is there really in anyone’s life?

Now, in some aspects, there’s seemingly more uncertainty in some individuals’ lives than others. For example, statistically, a Detroit autoworker’s career is more intrinsically uncertain than that of a physician practicing in Detroit in today’s economy. Yet, again, in a larger picture, uncertainty truly looms with striking equality in the lives of both. If both buy a lottery ticket, who will win or lose? Of the two, who will find love or lose love among relationships? Which might live till 89, or might die at 65? On the drive home, which will get in a life-changing accident, or never have an accident? Indeed, we could speculate on these two individuals’ futures in countless ways – all because their futures, like all of ours, are ultimately uncertain. None of us truly knows what tomorrow – or even the next 60 seconds – will bring. We can plan, prepare, and predict – but uncertainty is ultimately a fact in each of our futures.

Think about your own life and those around you – how much uncertainty have you witnessed over the past decade? Chances are, more than you realize, from unexpected situations in your own life – both positive and challenging – to world events, like 9/11 or the many natural disasters that have occurred around the globe. Maybe in your life during the past decade, you lost loved ones, had a child, were laid off from a job, got a job, became ill, got healthy, and on and on. And, if you’re like most of us, those types of events – which are part of all of our lives – absolutely contained the unexpected. The fact is, all of our futures – as shown by our pasts – are full of uncertainties. And, with few exceptions, if you have a disability, it, too, occurred as one of life’s uncertainties, where it wasn’t predicted, just another uncertainty that came your way.

Being that all of our futures are ultimately uncertain, why then are those with disabilities seemingly more preoccupied with that reality than others?

This question was especially peaked for me when I had an inspired conversation with a remarkable young woman. I would politely guess that she’s in her early 30s, and I must say that in our conversation, I was struck by her intelligence, poise, and grace. She’s one of those rare people who, even if you never met her before, you could sit down over coffee and share stories like old friends. And, in an hour conversation, we did just that – chatted like old friends, speaking of our pasts, presents, and futures. But, what deeply touched me was the uncertainty that she expressed about her future. See, she has a degenerative condition, but the long-term prognosis remains unknown. However, that fact, in itself, she candidly shared, has effected the way she sees her future, where while she once envisioned a future of marriage and children, she now focuses day to day. I got the distinct impression that the uncertainties of her condition have brought her vision for her future to a partial standstill. And, I was puzzled by it. There I was, speaking with an an amazing woman, more full of life than most people I’ve met, and if anyone has the potential to be an amazing partner and parent, she tops the list. Yet, for her, the uncertainties that her disability might have on her in the future seemingly hampered her vision toward the future, unable to look toward long-term hopes and goals. I felt like if she saw what I saw – that she has far more potential than most! – she could begin embracing the future, and stop avoiding it based on the uncertainty that she described based on disability.

In this way, I wondered why a vibrant 30-something woman, who happened to have a diagnosis of a degenerative condition, would seemingly avoid actively pursuing some of her dreams due to an “uncertain future,” whereas a woman without such a diagnosis has no qualms about the future, even though her future, too, is ultimately uncertain? After all, no one can guarantee a healthy 30-something woman that her future will be ideal, just as no one can guarantee that a 30-something woman diagnosed with a degenerative condition will have a bleak future – both individuals’ futures contain absolute uncertainties. Therefore, again, does disability, in itself, breed more uncertainty into one’s future beyond the potential for uncertainty that’s intrinsic to everyone’s life, or is it simply a false perception surrounding disability?

The answer I’ve come to understand is, no – disability, in itself, does not make life more uncertain. Rather, disability simply brings life’s uncertainties to the forefront of our awareness – and people are unsettled by the realization of uncertainty in all of our lives. See, most causes of disability are so random – resulting from an unforeseeable accident or illness – that they highlight the uncertainty of life, itself. And, while we like to dream of “ideal” futures, we don’t like to acknowledge the possibility of the countless challenges that can arise in anyone’s life. Yet, when we have to acknowledge through disability that life for anyone can change at any moment – as with my acquaintance’s life – it brings life’s uncertainties to the forefront of our minds. Put simply, when we realize that life, itself, is uncertain, it makes many people more skeptical and fearful toward the future – emotionally and mentally paralyzing some. Really, it’s almost impossible for anyone to view disability or illness and not be reminded in the immediate of the uncertainties in all of our live, and for some it’s even more impacting toward the long term.

As those with disabilities, when we realize that it’s not our individual circumstance that breeds uncertainty into our futures, but that uncertainty is merely a part of life, itself, then that acceptance becomes liberating and empowering. Everyone’s future contains uncertainties, so when we, as those specifically with disabilities, recognize that putting our lives on hold due to future uncertainties is irrational, we’re instantly liberated, no longer trapped by fear. Life is uncertain, and solely based on that fact, we should live it to the fullest. Disability or otherwise, let us not fear what could be, but embrace what actually is, and our quality of life and accomplishments skyrocket.

Man Vs. Life

By Mark E. Smith

If there’s one common criticism of my writings, it’s that I’m an idealist. However, such critics couldn’t be more wrong. In fact, I’m the most cynical, paranoid person I know. See, I recognize that it’s Man versus Life, and when we’re not living to our absolute best, Life will take us out – it’s itching to drop us to the canvas like a soft-jaw boxer, never to get up again.

I figured out as a young kid that I could never give in to Life – I could never let it win. Sure, it’s tried every day since I was born to tear me apart, but I strive to stay one move ahead of it, a chess game of real consequence. It’s thrown adversity after adversity my way, landing a few blows; but, for the most part, I’ve bobbed, weaved, and ducked, telling it, Is that all you’ve got?

And, yes, it always has more – Life’s a worthy opponent, never ceasing. I give Life credit for being especially proactive with my cerebral palsy, where it thought that it could slow me down, placing an anchor around my neck right out of the womb. But, Life made a strategical error, lacking foresight, not planning on my simply choosing to grow bigger and stronger than that anchor, not dragging it as a burden, but carrying it as an honor.

Then, once life saw that physical limitation weren’t something that would slow me down, it decided to toss in mental and emotional turmoil – dysfunctional parents sure to defeat me. But, like watching old tapes of a boxing opponent, I learned Life’s most devastating tactics by seeing what it did to those around me, where it used addiction and poverty to defeat them. I knew it would send those my way, so I got my fists up as soon as the bell rang, ready to rumble.

Alcohol destroyed the lives of many around me, so I simply had to avoid that slippery slope of indulgence, not routinely drinking. Poverty kept those around me destitute, so I simply had to get a formal education, follow a strict work ethic, and live debt-free. And, irresponsible living took the health of those around me, so I knew that I had to maximize my health. Life lured those around me into easy defeats, placing them on the ropes – but, I wasn’t falling for its tricks.

Pushing 40 now, and having found security against many of Life’s blindsides, I might be inclined to relax a little, let down my guard, not be so cynical or paranoid. No way. To the contrary, I know that Life’s still waiting to tear me apart and rip me to shreds – as quick as we rise, Life will try to make us fall even faster. Life shadows me, where if I have one slip, I know it will kick all of the legs out from under my table, crumbling me like house of cards. But, I won’t let it. I sleep with my eyes open. I keep sobriety on my breath, and money in the bank. I work till I collapse on the keyboard, and I workout till my arms feel raw, ready to tear from my torso.

Life may be pacing me, but I’m pacing it, where when I take my last breath, I will know that I’ve likewise left Life bloodied, gasping on the canvas, with nothing left, from among the most epic battles it’s ever faced.

Count on the Counterintuitive

By Mark E. Smith

Among disability’s most intriguing aspects is in its capacity of proving counterintuitive – often to a point that makes one rethink human potential. See, the definition of counterintuitive is when we recognize that something is the opposite of what we expected – and that’s disability experience at its core.

Disability has a way of demonstrating one’s exceptional strengths among presumed weaknesses – and does so in ways that can seem so counterintuitive that they are mind-blowing. Literally, it’s often the case with disability that those who appear as the weakest are actually the strongest, where those who appear as the most downtrodden are actually the most empowered. Indeed, there’s a counterintuitive element to disability that turns common-sense perception upside-down.

Many would assume that an individual in a restaurant, who was using a wheelchair, fed by others, uncommunicative, with no facial expressions, strikingly incapacitated, might be an “invalid,” to the point that most waitresses wouldn’t likely even address the individual directly, probably assuming that the individual lacked cognitive abilities. Yet, through the amazingly counterintuitive nature of disability, that individual – using a wheelchair, fed by others, uncommunicative, with no facial expressions – could be among the most brilliant individuals in the history of mankind: theoretical physicist, Dr. Stephen Hawking.

While Dr. Hawking maybe an exceptional – albeit, perfect – example of the counterintuitive nature of disability, it can be part of all of our lives. In fact, in living our best with disabilities, our lives should demonstrate the counterintuitive nature of disability, much like Dr. Hawking’s does, where beneath the seeming obvious physicality of disability resides the extraordinary nature of human potential. While our lives with disability may appear on the surface to be all about what we can’t do, our lives at a more core level should be about what we can do, proving strikingly counterintuitive in their successes – even surprising ourselves, at times.

A common thought process is that as our bodies lack abilities, our entire lives likewise degrade. However, again, disability proves amazingly counterintuitive, where when we fully utilize our intrinsic capacities, it often demonstrates that the less physical abilities we have, the more capable we are, where the weaker our bodies, the stronger our other assets – mentally, emotionally, spiritually. Disability as counterintuitive truly goes to the root of adversity, where intuition tells us that adversity defeats us, where in actuality, it uplifts us, where the more we face adversity, the stronger we become – that is, when we harness our fullest potentials.

A friend of mine recently asked me about the counterintuitive nature of my life. “How is it that, as a guy with cerebral palsy, bundled up in your power wheelchair, you have all this stuff going for you,” he asked? “You work like a maniac, you’re in better shape than anyone I know from working out, you’re always there for your daughter. Meanwhile, there are all these people with no physical issues, who don’t seem to do anything. It makes no sense.”

Of, course, from my disability perspective, the scenario that my friend presented makes perfect sense: It’s not how much we have, but what we do with what we have that counts, where the counterintuitive nature of life proves that if we have less, we can accomplish more. During his first two years as a student at Cambridge, Dr. Hawking wasn’t by any means a distinguished student; however, it was when his condition, Lou Gehrig’s disease, set in and progressed dramatically that his success in academics grew exponentially. Quite literally, rather than Lou Gehrig’s disease hampering Dr. Hawking’s education, it inspired it – as he seemingly had less in life, he accomplished more.

I’m always intrigued – sometimes amused! – when those without disabilities note the counterintuitive nature of our lives. I was waiting for some friends at a bar, and a woman next to me struck up a conversation. Surely, she had already had a few drinks in comparison to my absolute sobriety, and she quickly warmed up to me. After a few minutes of conversation, she noted that she had slept with many men in her years, and her all-time best lover was a gentleman who was a quadriplegic. “He seemed to somehow understand the power of physical intimacy more than any other man I’ve known, even though he had very little feeling from the chest down,” she shared.

I was certainly a bit blushed by her so candidly sharing her experience with me, but what she was really expressing was her recognizing the counterintuitive nature of disability, where someone with limited physical abilities can prove among the most skilled lovers. Again, what initially seemed like a deficiency, she shared, actually was a proficiency beyond all others – proving completely counterintuitive.

In our own lives, the counterintuitive nature of disability can often engage others, not only enlightening them, but inspiring them, as well. It can change the way they see themselves and the world around them for the better. Disability often unleashes the extraordinary potential within all of us, and when others witness the results, it’s inspiring to all.

Yet, it’s not so important that others universally recognize the counterintuitive nature of disability experience. After all, not everyone will have the insight to look beyond the superficial facade of disability in its most blatant physical form. However, it is vital that we, as those with disabilities, embrace the counterintuitive nature of disability, where we don’t merely focus an any negatives, but recognizing the corrilating positives and potential in our lives that also come with disability. This process is accomplished by recognizing that our physical limitations are always mirrored by positive potentials, and by focusing on counterintuitive nature of disability experience – that is, the positive potentials that are inherent within us all – our lives flourish.

Make no mistake, the fact that disability routinely adds more to our lives than it takes seems at odds with common sense. Yet, when we look around at those with severe disabilities living empowered, successful lives, where among the most challenged prove as among the most successful, the counterintuitive nature of disability experience proves the seeming impossible time after time: When we truly apply ourselves in living with disability, weakness strengthens, defeat empowers, and challenge elevates. Indeed, based on its intrinsic counterintuitive nature, disability doesn’t have to limit us – it can liberate us.

Miles to go Before I Sleep


By Mark E. Smith

Someone recently asked me, At what point does living with disability get easier?

My answer surprised him. “Surely it takes time to accept disability – and at some point, most are able to accept it as a part of their life, and move forward with an emotional stability toward it. And, in that way, living with disability does get easier. However, on a larger scale, if you’re living with disability to any degree of success, life should never seem easier,” I said. “The moment that life seems easier, you’re truly losing the battle, both toward disability and overall.”

As I went on to explain to him, living with disability is life, itself, where the easier it is, typically the less we’re striving. See, we only grow when we’re rising to challenges, and when we’re not striving, pushing ourselves to our fullest potentials, beyond our comfort zones, we aren’t moving forward and bettering ourselves. Truly, in order to take our lives to increasingly higher levels of success, it requires constant effort and sacrifice – and that’s anything but easy.

I highly value exercise, not just for the health benefits, but because it’s a metaphor and model for empowered living. I have a wheelchair-accessible gym, and if I were to do the exact same exercise routine everyday for months, it would become strikingly easy, but it wouldn’t improve my strength or endurance. Rather, to constantly improve my physical fitness, I must increase the intensity of my exercise routine week by week, where as the workouts get harder, I get stronger – and as I get stronger, I must intentionally make the workouts harder. This same process is how we grow and succeed as individuals with disabilities – that is, the farther we evolve in disability experience, the harder we should strive, never resting but constantly propelling. We must maintain momentum to keep our lives on track and flourishing because the minute we stop, our lives effectively stop.

The evolving process for most of us with disabilities, no matter if our condition stemmed from birth or later in life, began in a notably universal way: We strove to adapt to the physical realities of our conditions, then moved on from there, addressing the emotional, social, and other aspects of living with disability as we “grew.” Now, surely some get frozen in the initial stages of evolving with a disability, where a seeming lack of personal accountability and motivation hold them back from ever living a healthy life, getting trapped in a woe-is-me state of mind. And, it’s easy to point a judgmental finger at such a 28-year-old with a disability who collects SSI, lives with his parents, and plays video games all day, and note such shortcomings.

However, complacency likewise reigns among far too many of us with disabilities who seem quite successful. In fact, in evolving through our disability experiences, many of us reach some level of personal accomplishment, and then hit the cruise-control button, noting, I developed my physical abilities, went to college, built a career, and I’m raising a family – what else can anyone expect of me as one who’s overcome disability?

The answer is, a lot. Just because we may think that we’ve “succeeded over disability,” doesn’t let us off of the hook to keep working at it – and life. See, here is the fundamental fact that everyone from those with disabilities to the mainstream overlook: We never truly “succeed over disability,” where just like every other aspect of our lives, there’s always room for exponential growth. Any success in living with disability isn’t an end, but should merely lead to our next levels of growth.

As individuals, we need to be far less impressed by what we’ve accomplished with disability, and far more concerned with what we can and must accomplish to keep our lives moving forward. This isn’t to say that we should dismiss previous accomplishments; to the contrary, we should use them as inspiring precedents that motivate us to move our lives even farther forward. But, we shouldn’t slap our disability experience on the page and declare, Done!; rather, we should look ourselves in the mirror each day and say, Great, I’ve gotten this far, but now the work really has to begin!

Interestingly, this principal of not being overly conceded about past accomplishments, but focusing on future ones, applies toward those living with progressive disabilities, as well. It’s so easy to say, I’ve already coped with so much loss of abilities, now I have to cope with this next stage – it isn’t fair! Again, the way we move forward is not by holding on to the past, but by rising to our present challenges, propelling ourselves into them with all of our might. And, with a progressive disability, one better buy into the truth that forging ahead is the only way to succeed – and to retain a sense of control over one’s life! – or life will become a disparaging mess. Keep sending adversity my way because I will rise to it, not be defeated by it, is a strikingly empowered way to live.

Where our will to move forward begins – or, hopefully, continues – is by asking ourselves, What areas of my life do I need to focus on right now to move forward in real time? And, Where am I dropping the ball or not raising the bar high enough for me to keep striving?

What’s especially interesting about such questions is that they’re easy to ask, but extremely challenging to live up to. And, that’s the point: We have to hold ourselves accountable toward constantly growing, or our lives stagnate. We have to constantly question how we can improve our lives – in both the bleakest and most successful of times – and consistently live up to pursuing the answer with all of our might. Neither the worst nor the best baseball players further their careers by sitting on the bench – they both have to consistently take to the plate and swing the bat.

Since an adolescent, I’ve been asking myself such self-critical questions about how I can continually improve my life, and I’m always striving to live up to the answers. What I’ve learned first-hand is that when striving to live up to our fullest potentials, we never “overcome disability” – life never gets easier, nor should it. After all, when it comes to living with disability, we can always improve at it, just like in living the entirety of life, itself. Sometimes in improving with disability, it’s physically, other times it’s emotionally, and yet other times it’s mentally – but we always have room to grow and improve even further. In the process, whenever we feel like giving up, or fool ourselves into thinking that we’ve succeeded, let us remember that when it comes to living with disability, we must be humble and wise, knowing that our work is never done, knowing that we mustn’t allow life to get easier, but to remain challenging as we improve further – for, as poet, Robert Frost, put it best:

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.

Never In-Between

By Mark E. Smith

I had a lot of respect for Vic – that is, until he downed a fist full of muscle relaxers on December 23, 2009, at age 45, dying two days later in the hospital, surrounded by his horrified family and friends on Christmas Day. Now, I’m just sorrowful.

The back story to Vic’s suicide would have made the actual event less surprising – but, Vic had to throw in a final torturous twist to those who loved and admired him. See, it was no secret that since the car accident that left him a quadriplegic at age 18, Vic wanted to die – at some points more than others, where lows in his life were punctuated by suicide attempts. And, in that context, Vic’s suicide would have been viewed as his finally succeeding at his long-time wish – popping a bottle of pills, checking out once and for all. End of story.

But, in the time just prior to his suicide, Vic Chesnutt made it known that he was finally past wanting to die, that one of his latest songs, “Flirted With You My Whole Life,” was his letter to the world that he finally wished to live, that suicide was behind him. And, the lyrics read true to his word:

I am a man
I am self-aware
And everywhere I go
You’re always right there with me

I’ve flirted with you all my life
Even kissed you once or twice
And to this day I swear it was nice
But clearly I was not ready

When you touched a friend of mine
I thought I would lose my mind
But I found out with time that
really I was not ready, no no

Oh, Death
Oh, Death
Oh, Death
Really, I’m not ready

In a November interview, just weeks before his suicide, Vic discussed his now-prophetic song with NPR: “Well, it occurred to me that I would like to sing this song where, at the first half of it, you think I’m singing it about a lover, and then it becomes obvious that I’m singing about death. Death is my lover…. You know, I’ve attempted suicide three or four times. It didn’t take. And, this is really a breakup song with death.”

So, Vic made the rounds in summer and fall 2009, describing himself publicly as a man who’d learned his lessons and grown – and he was arguably at his peak in the music industry. No, you may not have heard of Vic Chesnutt, as he never achieved Billboard-type success or radio airplay in rotation. But, for 20 years, Vic was a musician’s musician, idolized by contemporaries like Michael Stipe of R.E.M., Madonna, and even alternative bands like Garbage. As an indie artist, Vic was known for his true talents as a writer, singer, and musician with longevity – which commands more respect among many in the music industry than one with a sole Top-40 hit. And, Vic was a relentlessly-working musician, always writing, always recording, always performing. As a lyricist, his work wasn’t from the soul, but it was the soul, itself – the trials of humanity at its core.

Despite Vic’s professional success, many still believed that Vic’s personal life was tortured and tragic, his disability a cross to bear, a seemingly horrible plight that they have ultimately used to justify his suicide. One of Vic’s fans wrote, “I am not sure that Chesnutt’s death is tragic. Maybe it was his life that was tragic. But before he left, he blessed us with a poignant firsthand picture of that tortured existence. Anyone who would judge his last act should realize that they never walked in his shoes – or sat in his chair.”

I’ve known many who have sat in wheelchairs as Vic Chesnutt did – some with physically and socially tougher plights than his – and they didn’t take the sorrowful way out by overdosing, devastating all around them. Why, then, did Vic choose at this point in his life to commit suicide, once and for all?

My speculative answer from what I knew of Vic, from what I’ve since learned of Vic, and from what I’ve witnessed and experienced in my own life, is that I believe that the unique pressures of living ultra-successfully with disability caught up with him, where he wasn’t able to cope with the extreme fluctuations in his life. See, when you have an exceptional level of success like Vic did while living with a disability, it can become a tale of two cities. On the one hand, publicly, everyone’s telling you that you’re a huge success and inspiration, putting you atop the world. Yet, on the other hand, you’re a real person, with real-life issues toward health, relationships, and finances. And, when all isn’t kept in balance, you can go from extreme highs to extreme lows in literally a matter of moments – in the time it takes to go from on-stage in front of a cheering crowd to a lonely hotel room where you’re left to face the realities of your everyday life. Truly, when you have such extremes in life – and you’re emotionally unable to center yourself – it’s just as easy to get consumed by the lowest of the lows as the highest of the highs, where the healthy middle-ground needed to survive doesn’t exist.

And, that’s where the tragedy in Vic Chesnutt’s life occurred – not in his literal disability, but in his inability to find that middle ground of understanding and comfort in life as a whole, where, by all accounts, he lived a tormenting oscillation between the highest heights of elation in his work, and the deepest plunges of despair in his personal life, with no middle ground to just be at peace.

Indeed, Vic left us with a remarkable catalog of the human experience as voiced through his music. And, maybe as some have pointed out, his suicide – that is, his final choice – isn’t to be judged by anyone. Yet, I can’t help but think that Vic called it quits too soon, never to find his middle ground, as when we find it, we realize that while life can be full of ultra-highs and super-lows, all of it is of value, never to be squandered, and relished everywhere in-between.

Author’s Note:
I wish to include the following two videos of Vic that personify him better than any writing can. The first video, “Everything I Say,” demonstrates the Earth-moving force that was Vic. The second Video, “Flirted With You All My Life,” is, in many ways, Vic’s prophetic letter to the world regarding his ultimate act of suicide. When you watch the videos, I think you’ll be left speechless, simply wondering what many of us wonder: How does such a life force just cease? …Or, maybe it doesn’t.

Facing Invisible Fences

By Mark E. Smith

Friends of mine installed an “invisible” dog fence, one where a wire is buried in the ground, and if the dog gets close to it, it safely shocks him via a collar, deterring him from crossing the boundary. My friends trained the dog well with the system, and for over a year, he stayed in its boundaries. However, one day, my friend came home to discover the dog lying on the front driveway, well outside of the invisible fence, sunning himself without a care in the world.

Of course, my friend presumed that the fence wasn’t working, and the installer came out to check the system. Oddly, all was working correctly. Wondering how the dog got out of the invisible fence, they decided to try an experiment. They placed the dog on the inside of the invisible fence, stood on the outside, and called the dog. At first hesitant, the dog then suddenly charged through the shock field, right to freedom. Sure, the dog was momentarily shocked by the fence, but he seemed to know that by simply getting past an instant of pain – and not being deterred by the prospect to begin with – he could go wherever he wished. Till this day, you’ll find that dog sunning himself on the driveway, his owners having given up on trying to contain him in the backyard – he set his own boundaries, and my friends have learned to respect them.

We should all take a lesson from that bold dog. How many boundaries – how many limitations in our own lives – are we refusing to overcome, not because we can’t, but because we simply don’t? How many of us aren’t living our best lives because we’re simply not willing to truly explore our potentials, thrown off by past experiences, fear of the unknown, or avoidance of potential discomfort?

Yet, here’s the bigger question that summarizes them all: How many of us are turning reasons into excuses? We all know that aspects aren’t right in our lives – maybe its our relationships, career, health, finances, or disability – but why aren’t we making painstaking, life-changing efforts to address them? Why aren’t we bursting through the invisible fences in our lives?

This past summer, I had to look at my own potentials, and once again question if I, myself, wasn’t turning a reason into an excuse? I was fortunate to have been in the midst of my best summer ever, with a boat on a lake, spending remarkable quality time with family and friends on the weekends. Water sports were big on my boat, from tubing at speed behind the boat to anchoring and swimming in glass-calm coves. Yet, week after week, while everyone else was in and out of the water till no end, I stayed in my wheelchair, behind the helm, never entering the water. See, when I was a child, I took swimming lessons, and my muscle tone and muscle spasms were so severe due to my cerebral palsy that I was instructed to never, ever enter the water again, for if I did – even with a life vest – I could easily drown, sinking like a rock. So, despite having a life-long passion for boating, I stayed out of the water my entire adult life – fearful of it based on my childhood experience and warnings.

Yet, this past summer, as boating days past, I wondered if I shouldn’t go into the water – that is, I wondered if I wasn’t turning a reason, cerebral palsy, into an excuse, my own fear of the water? I wondered if my not swimming was an invisible fence that I was simply accepting as one of my life’s boundaries?

Interestingly, as the summer went by, family and friends encouraged me to go into the water, and I explained to them that I couldn’t due to cerebral palsy – and they’d drop the issue, accepting the answer as a logical reason. But, I couldn’t accept the answer inside of myself. See, we can convince other people that reasons are reasons, but it’s much harder to convince ourselves, deep-down, that reasons aren’t excuses – it’s called shame.

Ask those in debt why they’re in debt, and their first reactions are usually to deny or minimize their situations. Debt is almost always based on a lack of personal accountability – spending more than one can afford – and there’s most often a sense of shame that goes with it, as shame occurs when we know we’re doing wrong, but keep doing it anyway. However, where the psychology of debt becomes really interesting is that it’s all about people turning reasons into excuses. After denial or attempted minimization, those in debt will almost always give you several seemingly logical reasons why they’re in debt when pushed on the subject: My car was old, so I needed a new one; we were expecting a baby, so we needed a bigger house; I had a rough year, so I deserved a vacation…. But, deep-down, most people in debt know why they’re in debt – that is, because they irresponsibly spend more money than they make. However, as long as they continue coming up with reasons as excuses – my car was old, so I had to buy a new one! – the dysfunction continues. Now, debt is one example of how using reasons as excuses holds us back, but it’s a component of most dysfunctions, and if we don’t stop using reasons as excuses in all areas of our lives, the courses of our lives never change for the better.

So, there I was nearing the end of the boating season, shameful in knowing that I was turning my reason, cerebral palsy, into an excuse for my fear of water. And, I knew that I had to address it – I had to live up to my potential, expanding my boundaries, crossing one of my invisible fences.

For two weekends in a row, I had swimming trunks laid out in the morning – and, for two weekends in a row I allowed fear to get the best of me, where I didn’t put them on, electing pants instead. Not wearing swimming trunks is yet another perfect reason – read that, excuse – not to go swimming!

The third weekend was the deal-breaker for me. I realized that I could easily keep using the reason why I couldn’t swim, cerebral palsy, as a lifelong excuse to never enter the water. Or, I could live up to my fullest potential, and push myself beyond my boundaries, overcoming my fear, taking the plunge into the lake. In an overly dramatic debate, I ultimately fathomed that the risk of drowning was far less of a consequence to me than living the rest of my life in fear, shame, and imposed limitations – that is, I’d rather take a so-called risk in a noble attempt to emotionally grow rather than live knowing that I couldn’t overcome my fear. I decided at that moment that I was going to stop turning a reason into an excuse, and simply force myself off of the boat, into the water. I was going to cross that particular invisible fence in my life.

I’ve pursued what some might kindly describe as brave accomplishments during my life, many out of pure necessity in living with disability. But, literally throwing myself off of my boat was among the most harrowing that I’ve ever approached. After all, I had built up decades of fear, and I had no clue what to expect when I hit the water. But, what was extraordinary was that once I crossed the point of no return – once I’d left the deck of the boat, and plunged into the water – fear immediately turned into liberation. No, the liberation wasn’t physical – after all, my body did tremendously struggle. Rather, the liberation that I experienced upon entering the water was emotional and psychological – I instantly knew that I had more control over the potentials in my life than ever before. As I thrashed about in my life vest, I was positive that the limitations in our lives truly are like invisible fences – they only hold us back when we refuse to cross them.

Surely, most of us turn reasons in our lives into excuses at times, where self-imposed complacency or fear keeps us from improving upon vital areas – relationships, careers, health, finances, or disability – not because we can’t, but because we simply don’t. However, if we are to move our lives forward, we have to take a lesson from that bold dog, and not just stare at our seeming boundaries in life, but charge through them with all of our might. See, what I’ve learned is that every excuse that we willingly remove from our lives – including those surrounding disability! – allows our lives to dramatically expand, and an amazing event occurs: We grow.

And, that’s the beauty of invisible fences – with honesty and courage, we can charge right through them, where our lives are no longer about self-imposed boundaries but about empowered liberation.

Stopping the Should’ve-Could’ve-Would’ves

By Mark E. Smith

Imagine for a moment that you’re driving a car at 55mph on the highway, with other cars traveling around you, with twists and turns in the road ahead. And, in a split second decision, you decide that you’re done looking forward, and you’re only going to look backward – foot still on the accelerator, cars all around, and twists and turns in the road ahead. Maybe your family is in the car, and they’re pleading with you in horror to look forward; but, you continue only looking backward, with no discretion toward what’s in front of you.

What happens next?

At best, if your family can get control of the car, you’ll stop on the side of the road, going no where till you realize the importance of looking forward. Or, at worse, you’ll cause a devastating accident, destroying yourself and everyone around you.

Living with disability can be a lot like driving a car, where as long as we look forward, all is notably well. However, the minute we choose to only look backward in life – on what should’ve been, could’ve been, or would’ve been if we hadn’t been effected by disability – life stalls at best, crashes at worst.

A buddy of mine, who received a later-in-life disability, is sure that his life would’ve been perfect if it weren’t for disability. According to him, he would’ve been rich, famous, and in love, but disability has single-handedly ruined his life, and all he wishes is to go back in time and avoid the accident that paralyzed him.

In one of my more blunt moments, I responded to my buddy’s pity party at dinner one night by stating, “You weren’t rich, famous, and in love before your disability, and I know people with disabilities who are rich, famous, and in love – so, has it occurred to you that your disability isn’t the problem here? You’re so busy dwelling in the past and resenting your disability that you’re overlooking all of your potential in the present. Stop looking back, start looking forward, and you’ll finally get somewhere.”

Of course, all of us with disabilities could look back on our pasts, and have pity parties for ourselves, no matter if our disabilities resulted from birth, a later-in-life injury, or a progressive condition. We can all assert that we got the short end of the stick, that if it wasn’t for damn disabilities we should’ve, could’ve, would’ve had the best lives ever. In fact, the best pity-party hosts, like my friend, will tell you exactly how much better their lives would’ve been, scene by scene – and, they should know, as virtually all of their time is spent dwelling in it!

Yet, here’s the problem: When one dwells in the past, the present becomes null and the future void. See, we ultimately only find progress in the present, the only point in our lives that we can control – if not physically, at least emotionally and mentally. However, one aspect of our lives that we absolutely can’t control is our past – and when we get stuck forever trying to somehow control it, like wishing to go back and change it, of course it drives us into depression and destroys our lives. Again, we can’t steer a car forward by looking backward – we crash every time – and the same holds true for life.

The other part of the disability puzzle that keeps some from moving forward is when they insist, This isn’t how it was supposed to be. No, disability may not have been what we wanted, but it’s what we got, and insisting that this isn’t the way it was supposed to be is an entirely futile, looking-back state of mind that’s irrational, to say the least. In my own life, as a young child, I figured out that although my parents pointed to a medical error as the cause of my cerebral palsy, believing that my disability wasn’t supposed to be, it was what it was, and I had to get with the program, as is, and move forward in the present. We can tell ourselves till our last breaths that having a disability isn’t the way it was supposed to be, but it’s only effect is trapping us in a past that we can’t change. However, the minute we look forward, to the way life is, then we’re in control, able to pursue positive directions.

In one of my books, I extensively discuss that life is about change, and if we’re ever going to live successfully, we must embrace change, not fight it. After all, like disability itself, change often occurs no matter our ideals, and if we go with it, we grow, and if we fight it, we stagnate. What’s intriguing is that disability demands that we embrace change if we are to live successfully with it. In fact, have you ever noticed that the very terminology of our physical disabilities – developmental, injury, progressive – instructs us to live in the present, not the past, suggesting how to best address the changes that they bring to our lives? Take a look how they spell out that embracing change and living in the present are paths for success:

If you have a developmental disability, what should you emotionally do as a person? Develop!

If you have an injury-related disability, what should you emotionally do as a person? Heal!

If you have a progressive disability, what should you emotionally do as a person? Progress!

This realization of how disability-related terms are fitting directives on how to grow with change came to me when considering a friend of mine who, for a decade, has had a steadily-progressive disability. Yet, he’s seemingly no better at coping with it today than at diagnosis. Again, he’s one who’s clung to the should’ve-could’ve-would’ves of his past, only looking backward. And, it occurred to me that he literally hasn’t kept pace with the directives of his disability. As his disease has progressed, he’s refused to emotionally progress with it, and has stagnated as a person. Whenever he speaks of how increasingly depressing his life is, I want to exclaim, Obviously – and it’s that way because your disability is progressing, but you’re not! After 10 years, my friend simply hasn’t developed any coping skills, and he never will – that is, unless he stops living in the past, and moves into the present to address the true potentials in his life.

Now, I’m not saying that there’s not a grieving period to disability – there absolutely is. For those born with disabilities, the teenage years can raise why-me? questions. For those with later-in-life injuries, recovery can involve only-if? questions. And, for those with progressive disabilities, initial declines in abilities can usher in what-if? questions. However, we must soon move beyond the grief stages – that is, we can’t allow ourselves to only look backward and hold on to the past forever. At some point, if we’re to succeed with disability – and, more importantly, life – we must shut off the should’ve-could’ve-would’ves, stop dwelling in the past, embraces change, and lives in the present, fully addressing what is.

As an Australian acquaintance of mine put it, You’re disabled, mate – get over it, then get on with it, and quit your bellyaching! His words are a bit more frank than I would choose, but he gets at the point: Let us let go of the past, drop the should’ve-could’ve-would’ve thinking, and move forward in the present, where we don’t stagnate because of disability, but we develop, heal, and progress all the better for it – thriving with what is.