Posts Tagged ‘Living with disability’

By Mark E. Smith

It was the sickest I’d ever been. In a matter of days, I went from the masculinity of a mid-forties man to the physical dependence of an infant. A corner was turned, and I was in unknown, uncontrolled territory.

Living with a disability may seem unique, as with my cerebral palsy, but there’s an equilibrium to it. Yes, there are limitations inherent to my disability that require assistance from my wife in personal ways that we’re both comfortable with. But, we all have discreetness and self-consciousness boundaries. In fact, such boundaries seemingly help us define our own sense of masculinity or femininity. Put simply, we say, I’m comfortable with having my spouse see me this way, but can’t imagine ever being comfortable seen in XYZ circumstance. These boundaries vary from person to person, couple to couple, including among my wife and me.

In my time of need and illness, I had no choice but to give up such preconceived boundaries. My wife was there, willing and able to help. I had to accept it based on my illness. I had no choice but to remove my constructed boundaries.

Often, we look at those jumping in to help as the strong ones, and they are. However, as I continue learning, it takes tremendous strength to let others in to help. However, when we do, it takes us to far deeper levels of connection and love. Boundaries can be great, but self-constructed ones of self-consciousness – which all of us have in some forms – can serve as walls that prevent us from getting closer to others and letting others fully know us. For me, sick in bed, totally dependent upon my wife, I realized not just her unyielding love and devotion, but how letting down my own guard allowed me to more fully immerse in our love.

All of this got me thinking, why does it take such extreme circumstances for us to allow ourselves to remove our boundaries, to further trust in love? Why do we cling so tightly to self-consciousness that it prevents us from fully opening ourselves to others?

Of course, the answer is, vulnerability. By nature our biggest fear, admit it or not, is rejection by those we love. Sure, we open ourselves up to love, but most often we have a last-ditch protection mechanism that prevents us from going all in – that is, we hold back in a few areas. However, if we’re being prudent and healthy in our relationship, there’s zero risk, so holding back simply holds us back. It shouldn’t take a situation like a serious illness to forego self-consciousness and fully trust in the deepest forms of love. Here’s all of me for you to love, and I cherish having all of you to love….

Trusting fully in deep love is tricky. It can expose our vulnerabilities, require us to face them, and then let them go, all of which is scary. However, when we do so, we create a pathway to loving and being loved that’s deeper and safer than we’ve ever known. Love is always uncharted territory, and allowing ourselves to follow it to greater and greater depths is life’s most miraculous journey.

By Mark E. Smith

I’m lying in bed. The TV won’t work, something about it cannot connect to the network. I’m old enough to remember when simply pulling a knob turned on a TV – and it worked every time. Now, I just stare at the spinning ceiling fan.

I think about my conversation with my best friend, Drew, today. He’s the wisest soul I know, and he inexplicably knows more about any subject than he should. We talked about what it’s like being in the throes of life crises. So many people tout the growth that comes from it. However, those are people speaking from the other side. As Drew noted, when you’re in the middle of it – an ended relationship, a health crisis, a job loss – you struggle just to breathe, where five minutes feels like an hour, a night feels like an eternity. There’s a tunnel vision in those times, the loss of everything joyful. No one stops to smell the flowers when it feels like life, itself, has stopped.

And, it’s OK, it’s all OK. Adjusting to a new normal is… well… normal. When we have the wind knocked out of us, we need time to get back up, we need time to rediscover ourselves in this new space. Anyone who tells you to snap out of it has never been there, or worse, has forgotten what it’s like to be there. There’s a time to be in such a space, to just be.

My wife comes in and wonders why I’m not watching TV? I explain the technical issue, and she lies next to me, staring at the ceiling fan, also lamenting the loss of televisions with antennas that simply turned on.

By Mark E. Smith

Someone asked me if struggling ever ends? After all, it seems like for many of us, no matter how far we get in life, adversity still finds us.

It’s a fair question, especially when we’ve spent decades striving to get ahead in life, yet struggles still arise. Maybe you’ve been there. You seemingly have all in order, then adversity strikes – again. Why is that?

Firstly, life is not purely positive or negative, but an ebb and flow of both. Just as all is better, all will get worse. Just as all is worse, all will get better. The key is to find blessings in life not just when we’re on a winning streak, but also when on a losing streak. The blessings are always there; we just need to see them, even during the bleakest of times. In this way, we then maintain gratitude no matter the phase of our life.

Secondly, struggles are intrinsic to life pursuits. If we are to thrive, we are going to likewise experience adversity. You can’t face challenges in a career without having a career. You can’t feel heartache without being in love. You can’t know how difficult it can be to raise children without having children. You can’t know health adversities without a semblance of health. In these ways, the more we live, the more we will intrinsically know struggle.

I, too, once wondered when the struggles would end? Then I realized that life is a process, not a scorecard.

By Mark E. Smith

Many couples face adversity. Some come together, while others fall apart. What foremost trait keeps couples together while facing among life’s toughest of times?

I recently worked an Abilities Expo, a consumer trade show for all products related to disability. During the expo, I met countless couples where one partner had experienced a life-changing illness or accident. It was the perfect opportunity to ask, What’s been the single biggest relationship key that’s helped you move through this as a couple?

The answer that most gave surprised me when it probably shouldn’t have: humor. Over and over again, couples told me that shared humor made the toughest situations bearable. And, they nailed it, knowing what all of us should know.

In fact, there are scientific reasons why humor and laughter enhance our relationships. Humor is an intrinsic “mood lifter.” When we smile or laugh, it releases endorphins, the “feel good” chemicals in our brain. In a way, we get a little high when we smile or laugh, so it dramatically points our perception toward the positive, even in the bleakest situations. Therefore, when in a relationship, humor makes uncomfortable situations comfortable and breaks us out of daunting thoughts. If there’s a surefire way to direct a moment or mood as a couple, humor is it.

There is a caveat, however. It’s vital that both people share the humor. There’s no room for jaded or cynical humor. If one person finds humor in a situation and the other doesn’t, it will only make a situation worse. Two people laughing is a shared connection; one person laughing is angering to the other. We must laugh together, not apart.

I met a couple at the show, where the husband is living with ALS. The wife told me, “We can laugh together and cry together. If you can laugh together, you can cry together. But, it’s a lot more fun to laugh together….”

Life and relationships aren’t easy – especially when adversity comes our way. However, among the best tools we can have is humor. If we can laugh amidst a situation, we can address and cope with it. After all, the couple who laughs together stays together.

By Mark E. Smith

In March of 1862, we first saw the phrase, Sticks and stones may break my bones, but words will never break me, in the Christian Recorder, presented as an old adage. Of course, to most of us, it is a rhyme from our childhood that we sang as a self-affirmation.

However, is it true? I mean, it sounds logical, and we’d like to think we can rise to such self-confidence, but is the saying scientifically true? Can we, as a species, self-evolve to a point where the words of others don’t impact us?

I’ve faced this subject my entire life and have seen merit to both sides of the paradox: We’re innately social creatures, but don’t want to be affected by social scrutiny. As one with a disability, I’ve experienced negative dialogue from others my whole life. What’s more, as a public figure and in working with the public in my career, I’ve experienced the dark sides of dealing with the public. I’ve faced terrible adjectives slung at me. So, how have I coped with all of it?

I’ve believed in dismissing strangers as just that, strangers. If you don’t know me, how can you have a valid opinion about me? Also, two wrongs don’t make a right, so I try to be kind to others even when their words sting. These approaches have worked fairly well, but not flawlessly – for good reason.

Firstly, you and I, as humans, are hardwired as social creatures. It’s ingrained in us to care what others think as a matter of our survival mode. In modern society, the risk factors aren’t as obvious as they were in previous evolutionary periods; we don’t face getting eaten by wild animals when banished from a tribe as we once did. Yet, susceptibility to wanting social approval remains a natural instinct.

Secondly, scientists now know that our physiological connection to others is so strong that words can break us. Researchers discovered that emotional pain and physical pain both trigger the same area of the brain. They performed brain scans of those suffering a romantic breakup, and then subjected them to physical discomfort, finding identical responses in the brain based on emotional and physical pain. Further, research proves that verbal abuse can alter a child’s brain structure, that those who experienced verbal abuse experience the same degree of later-in-life impacts as those who suffered physical abuse.

When we put it all together, words really can hurt us. We can intellectualize all we wish, but to be human is to feel the literal pain of words.

With advancements in technology, it’s vital that we realize the adverse impact words can have. We, as individuals, are in more contact with others than ever in the history of mankind. You can call, email, text, direct message, or video chat loved ones at any time. You can jump on the Internet or social media platforms and say anything to almost anyone. And, it’s dangerous territory. We all know that words can hurt – because we’ve been hurt by them! – but some are still so quick to say the worst to others through the keyboard of a computer or smartphone. It doesn’t matter if it’s family, a friend, a public figure, or a complete stranger – sock it to ‘em with your words online! I’m all too familiar with this troubling mentality of others and guard myself against as much of it as I can. However, what about teens who are at a point where they’re seeking peer approval, but lack the emotional development to cope with the levels of negativity and rejection that come in deluges on social media? Words can devastate lives.

The point is, given the world we live in, we need to get better with words. We can care less what others think, despite our nature, and live rooted in reality, not worrying about what some try to project upon us. Few truly know us and it’s ridiculous to invest in what strangers say about us, good or bad. Similarly, we need to use our own words more carefully. Just because some people fill social media with garbage doesn’t mean we should add trash to the pile. In this age of such prolific communication, let us use our words as a crane that uplifts, not a sledgehammer that crushes.

After all, Sticks and stones may break my bones, and words can also break me.

By Mark E. Smith

I recently spoke on a senate panel on aging. The panelists were heavy-hitters, including a U.S. senator and heads of government agencies. As speakers go, they were the best-of-the-best, both in presentation and knowledge. Then, there was me.

As a speaker, I prefer keynotes, not because I wish to be the star attraction, but because there’s a different dynamic on panels, especially when the other panelists are beyond great. It’s like sitting back stage as a musician and the band before you is phenomenal, and you’re thinking, Man, I can’t live up to what Iggy Pop just did!

What made the recent panel even more challenging was that I went last, so there I sat trembling in my boots – not emotionally, but literally, as I have uncontrollable body movements due to cerebral palsy – as I watched eloquent, brilliant speakers along our table command the room. So, how’d I move through it?

The same way that I always do. Public speaking can be tricky. Yet, if you know your subject, know your audience, and you’re skilled with rhetorical devices, public speaking is a bit of an illusion – it looks tougher than it is. For me, however, there’s a wild card added to the mix: cerebral palsy. My brain sends involuntary signals to my muscles and they do whatever they want, whenever they want. My central nervous system doesn’t care if I’m in bed watching TV or speaking in front of 250 statesmen. If it tells my legs to kick, they simply kick – formally known as a “spasm.” Speaking as a craft is easy for me; doing it with the physical unpredictability of cerebral palsy can be the harrowing part.

Given my situation, I view speaking in front of audiences like driving a race car. Driving a car at 150 mph around a race track takes skill, but even more so when the unexpected occurs. Race car drivers win races not based on simply going around a track, but in addressing peril when encountered. Did you see him keep his car from spinning off of the track!

When I’m publicly speaking, it’s the same phenomenon. I have my emotional and mental composure, but I never know what my body will throw my way. The ability to address spasms and uncontrolled body movements without missing a beat while speaking is my real craft. The way I do it is I let go of the mental and emotional constraints others often feel in such situations. When I sat on the senate panel, there was no way I could be as physically composed as the other speakers, so I threw that standard out the window and focused on being the only person I could be: me. I have cerebral palsy and a microphone – hold on to your seats, folks! In these ways, cerebral palsy becomes an asset of originality.

It doesn’t matter if we’re public speaking or living our everyday lives, the minute we let go of social pressures or preconceived notions of who we should be and just be ourselves, as-is, there’s no freer realm to be in. I understand that this is difficult for many. We live in a culture that presents ideals on how we should be. Yet, for many of us, it’s impossible for us to meet those ideals – there’s no product to resolve cerebral palsy – and in the larger scope, nor should anyone feel he or she has to live to such scripted ideals.

See, I view the world as the most spectacular art gallery. Each of our beauty isn’t blended on a single cultural canvas, in a single form, but seen within the borders of our unique frames. Photoshopped images are great; an original Picasso is amazing.

Canada’s Andre Viger (front) and Mel Fitzgerald (left) compete in a wheelchair event at the 1984 Olympic games in Los Angeles. (CP PHOTO/ COA/J Merrithew)

By Mark E. Smith

I have a home gym. Two or three nights per week, I go into that room in my house, put on old, sweat-crusted weight-lifting gloves, and start wailing away at the contraption. As it bangs and crashes, sounding like some sort of machine from the Industrial Revolution, I push, pull, and grunt. It’s a competition of me versus it. So, what drives me to keep working out, especially as a 46-year-old dad with cerebral palsy who could get away with taking the easy road at this point in life?

When I was an adolescent, I watched the greatest wheelchair racers of all time fly across my TV screen during events like the Boston Marathon and the 1984 Summer Olympics. They looked like gladiators. They had massive upper bodies, and all was squeezed into an ultralight racing wheelchair that they hurled down the road or around the track at insane speeds. Their triceps pumped the wheels like pistons.

Yet, I wasn’t in awe of them. Rather, I was inspired.

See, there’s a vast difference between being awed versus being inspired. When we’re awed, we never imagine that we can do what another person does. It’s like, That’s awesome, but I could never do that. However, when we’re inspired, we’re compelled to get out there and do it, no matter how rational or irrational the thought may seem. That band rocks – give me a guitar. This poetry is astounding – I need a pen. Her words are so eloquent – I’m learning to speak like her. That person has an amazing career – I’m going back to college. Inspiration moves us into action. In awe, we watch. With inspiration, we do.

I realized the profound difference between awe and inspiration in my adolescence, and in being inspired by the wheelchair racers I saw on TV, I said, I’m doing that! Of course, like a 12-year-old picking up a guitar at the Salvation Army with the intent of starting a band and becoming a rock star, I had no ability at that moment to truly become a wheelchair racer, especially given the severity of my disability. But, that’s the beauty of inspiration – it launches us toward something great. We may not know where we’re going to land in our attempt – did Jackson Pollock when he began dripping paint on canvas in 1947? – but we’re bound to go somewhere.

I pushed around in manual wheelchairs for years, struggling merely to become self-sufficient, literal miles from ever being a “racer.” It did, though, help lead me to weight lifting, which I excelled at. I couldn’t push a racing chair faster than a snail, but through tenacity in the gym, I could have an upper body that looked like I did! That spirit continues with me today every time I hit the gym: Why watch when I can do, and why not see how far I can get with my efforts?

All of us see people accomplishing seemingly amazing feats. Some take talent and some take years of hard work. Yet, the people doing them are merely people like each of us and, most often, if they’re doing it, we can take a shot at it, too. Don’t be awed by others; be inspired. After all, the only reason why others are where we’d like to be is because we simply haven’t tried – yet.