vulnerability – Page 6 – PowerchairDiaries

The Kind of World we Live In

By Mark E. Smith

Every night at 10:00 pm, I flip through the cable news channels. With redundant sound bites and flashing scenes – not to mention partisan political rhetoric – I’m told what a terrible world I live in. If I am to believe them, my life in every fathomable way is on the brink of disaster – and so is yours. If texting drivers and terrorists don’t kill us, our jobs will be downsized and exported, and our children will end up on heroin. But, then they go on to note that if we make one wrong vote, we will lose civil liberties and nuclear proliferation will usher in World War III. However, none of this matters because whatever the latest virus is, it’s likely to kill us before all else.

This is how the news media portrays our world night after night. Yet, day after day, my life – the world we share – couldn’t be more different. As one with a severe physical disability, the world of intolerance portrayed by the media that we live in should place me drowning in the bottom of a cruel socio-economic barrel. Yet, I’m not – and, in fact, my world, your world, our world couldn’t be more different than the distorted, sensationalism hyperbole spewed by make-up-strewn talking heads on cable news.

What 45 years of disability experience has proved to me is the truth of humanity. People are kind, accepting, embracing and tolerant. We know that we’re all in this together, and while my adversity is an obvious physical one, we all have known adversity, and it’s among the bonds that unites us. We all want to love and be loved, and as my career has taken me to countless cities and towns across this country, every where I’ve been has demonstrated one universal trait: kindness.

As one with a severe disability, who speaks and looks differently than others, who must turn to strangers for assistance in situations, who flies on planes and lands in cities, I see none of the harsh, cruel world portrayed by the media. I see the flight attendant offer to walk with me through the airport to ensure I find my shuttle van. I see the shuttle van driver insist on tying my shoe. I see hotel clerks ensure all I need is taken care of. I see waitresses intuitively move everything where I can reach it. I see individuals homeless say words of blessing to me. I see strangers in stores, restaurants, everywhere, share the kindest words and hug me.

I don’t know where the media gets its soundbites and images of the bleak world it portrays. But, if they followed me for an hour, in any city in this great country, they’d see the truth: the kindness of the world around us is awe-inspiring. Turn off the TV and get out into it.

To Be Unheard

By Mark E. Smith

It wasn’t her sharing being diagnosed at just 19 with multiple sclerosis that surprised me, nor was I surprised that now 20 years later, she’s effectively paralyzed from the neck, down. After all, I work in the wheelchair industry, and these are the stories I hear every day. No, I never get used to them, but such stories are the reality of those I serve.

However, what she said at the end of our conversation made my world stop: “Thank you for hearing me,” she said. “It’s been so long since I’ve felt heard.”

My heart paused to comprehend the profoundness of her words. With her disease progressed to the point of full body paralysis, having undergone so many life changes along the way, her biggest concern wasn’t any of that – it was simply wanting to be heard.

How many of us have felt that way – unheard? I have, and what I learned is that to be heard is to be acknowledged as a person, and when we’re not, it hurts. To not be heard is to not get our fundamental needs met. To not be heard is to not have our feelings validated. To not be heard is to not be valued. To not be heard is to not be seen. The pain behind being unheard haunts us to our core. When we don’t feel heard by our partners, by our families, by our communities, it’s really easy to feel as if we don’t exist.

Yet, we do exist – fully, completely, rightfully. And, it’s not that we’re unheard; rather it’s that others – wrongfully – aren’t listening. See, no one truly goes unheard. A heart beating makes the ultimate sound. Yet, many of us don’t listen, where insensitivity or ignorance or prejudice can make us deaf to those around us. The hearts of others are beating; we simply don’t listen to their breathtaking cadence.

When that woman expressed to me her gratitude toward my hearing her, it reminded me of an ultimate truth: To know what it’s like to be unheard teaches us what it’s like to truly listen.

Voice of Courage

By Mark E. Smith

What’s the origin of courage? Is it a conscious decision or an innate response? And, how does it make us rise at just the right moment when needed most?

My soon-to-be 8-year-old daughter has spina bifida and autism. While I didn’t have the privilege of being in her early life – she’s legally my step-daughter – I’ve had the blessing of having her in my life in recent years, where she’s my daughter. And, while our relationship isn’t typical – autism never is – the love and understanding is, just as with my 19-year-old.

My little one has a lot going on medically between her two disabilities, but that all just makes her unique like any child. Due to spina bifida, she’s paralyzed from the tummy, down, and uses a wheelchair. Due to her autism, she has an astonishing vocabulary, but finds it difficult to use it in context and isn’t conversational. In simple terms, she makes us smile nonstop with her constant chatter – Please to meet ya, prairie dogs!, she recently exclaimed in the middle of dinner at a restaurant – but she profoundly struggles expressing what she wants or needs.

She’s also a fearless daredevil, where she doesn’t demonstrate self-protection mechanisms. However, this makes her love motion, including amusement rides. And, so when we recently had the opportunity to take her adaptive horseback riding, we knew she’d love it.

Inexplicably, my wife and I were wrong. As a team surrounded the therapy horse, and my wife tried to place our little one on the saddle, our little one was terrified. In fact, I’d never seen our daughter express fear, but as she clung to my wife, the fear was palpable. Yet, we knew if she could get past that fear, sit in the saddle and ride, she would love it. However, as I watched from the fence feet away, I knew that this had to be our little one’s decision. Yes, she was scared. No, you can’t force courage. But, could our little one find the inner-strength to ride the horse?

After many failed attempts, to the point of all of us adults about to give up, in one last try, our little one saddled up, clutching her mother. As the horse rounded the ring, the unimaginable happened. Our little one exclaimed, I am not afraid!

Was it self-reassurance? Was it a declaration to our group? Was it an affirmation of her life that we never thought she could express?

It was all of those. No, I don’t have the answers for the questions for which I began this story. However, I can tell you most profoundly, though, that all of us there that afternoon heard what few ever hear: the true, literal voice of courage.

Camp Gratitude

By Mark E. Smith

At this writing, I’ve just spent a week at a summer camp full of kids between the ages of eight and seventeen. It had all you’d expect at summer camp – swimming, fishing, boating, arts-and-crafts, horseback riding, and on and on.

However, what was different than any camp I’ve experienced was what occurred at one o’clock every afternoon. The campers – who happen to have a myriad of physical disabilities – gathered in the lodge after lunch for “Pat-on-the-Back Time.” It really should be called “Gratitude Time” because for one-half hour, kids raise their hands and express their gratitude for their peers and counselors at camp, as well as their experiences.

As you might imagine, for us adults, it was a profoundly moving experience each afternoon. To witness children with severe disabilities – many of whom having undergone countless surgeries, many using wheelchairs, all facing exceptional daily adversities – express gratitude from the heart was breathtaking. After all, such children have been through a lot, and face exceptional challenges every day; yet, their expressions of gratitude are unyielding.

Now, you may find those sentiments extraordinary, that children facing such adversities can express such unyielding gratitude toward even the smallest of deed done by another or the most typical of activity – an eight-year-old thanking her counselor for holding her hand in the swimming pool. However, as I sat and listened to their outpouring of gratitude each day, I found the children teaching me more than I ever expected.

See, their gratitude, while clearly an exception in our society, should be the rule. How many times in our careers do we hear colleagues diminishing each other instead of praising? How many times do our children have an accomplishment, and we don’t acknowledge it? How often do we go for days, months, years without complimenting our spouse? How often do we walk away from a cashier or waiter or bus driver without saying thank you? How often do we spend our time wanting instead of appreciating? How often do we dwell on negatives instead of embracing positives? The answer for most is, more often than not. It’s the society we live in – just look around – and it pulls us all down.

The fact is, there’s something really wrong when we, as adults, have to go to summer camp and learn from children how to be more heartfelt individuals of gratitude. And, yet, there’s hope in it all. If children of such adversities can express such appreciation, gratitude and love… we all can.

Forgiving – Ourselves

By Mark E. Smith

Among the hardest endeavors of the heart we ever make is to forgive – ourselves.

Although we live with the best of intentions, with tremendous purpose, we’re bound to make mistakes. When we’re on top of our game, the mistakes are small – maybe no one notices but us. However, when we’re not so mindful of how our actions effect ourselves and others, the mistakes can be life-altering, not just for us, but for those we love. In both cases, making mistakes can weigh on us like an anchor, keeping us submerged in shame, guilt, and self-doubt. In a way, we lose trust in ourselves, just as we imagine others lose trust in us.

However, the fact is, while those who care about us and love us are typically very forgiving, the person who most often takes the longest to forgive our mistakes is oneself. Shame and guilt are powerful emotions, not easily shaken. Yet, if we are to move beyond our mistakes, we must truly forgive ourselves. It’s not just the ultimate in humility, but also accountability.

See, when we refrain from self-forgiveness, we’re holding on to our mistake, like carrying a boulder everywhere we go. But, there’s no corrective action involved, just self-punishment. In contrast, in order to forgive ourselves, we have to deeply acknowledge our mistake and grow to trust in ourselves that we won’t make that mistake again. We must allow ourselves to give into ultimate humility. We must allow ourselves to accept ultimate accountability. Those acts of honesty and courage are the cornerstones of self-forgiveness.

Author Stephan Richards writes about self-forgiveness, “When you initially forgive, it is like letting go of a hot iron. There is initial pain and the scars will show, but you can start living again.”

In this way, the ultimate mistake we can make in life is not to offer forgiveness – to ourselves.

I’ll Take Love Over Art

By Mark E. Smith

My wife and I have slowly become a poster couple – literally. And, we’ve been blessed that so many have found inspiration not just in the one iconic image, but the life we lead, commonly shared on social media, as is the way of the world nowadays.

However, we’re truly not a poster couple. No couple is. Who we are, are two unique individuals who love each other deeply, but face the challenges that every married couple faces. I note this because being the poster image of anything can be a trap all the way around.

I look at our life in ads or online, and realize that we’re doing well. And, it’s all true. However, what’s not reflected is the rest of the story – life is messy sometimes. We have a 19-year-old in college, a 7-year-old with special needs, a dog, and a house. The tuition bills for the 19-year-old never end, the 7-year-old struggles to sleep through the night, and the dog likes to eat grass and vomit on the new carpet. To top it off, our house doesn’t clean itself. Your life may not look a lot like ours publicly, but if you step in our house, chances are that our life is a lot like yours – from balancing finances, to caring for kids, to stressing over laundry, to trying not to lose your cool because the dog ate food off of the table again. And, it’s really hard to be romantic when the day has worn you down.

No, life isn’t a poster image. Rather, life is a mirror image – and there’s beauty in that. Some mornings, as my wife and I are scrambling to get ready, usually running late with all of the chaos, we’ll look in the big dresser mirror together – half dressed, hair uncombed, morning wrinkles emphasized by the sunlight – and we just laugh at what a mess we are.

See, what I’ve learned is that perfection – or the illusion thereof – doesn’t make a true marriage. What makes a true marriage is when you acknowledge how messy it all really is – and still smile at it.

Unspoken Alone

By Mark E. Smith

Alone. We’ve all felt it. And that, in itself, is why we’re truly not.

Based on my career in working among a population where trauma is common, I often hear how alone others feel in their challenges and struggles. However, as an ordinary person, I also hear how alone many feel in challenges of all types in everyday life. Yet, I’ve never encountered a situation where someone’s struggles transcended common humanity, where others hadn’t experienced a similar situation, of similar emotions.

In this way, the uniqueness of feeling alone in our struggles isn’t unique at all. In fact, it’s among the most common emotions we all share. It is intriguing, though, that such a commonly shared emotion can be… well… generally unshared.

See, unlike other cultures in the world, we in North America are prone to keeping our struggles to ourselves. The result is, we feel alone. And, so we live in a culture that exacerbates feeling alone in times of struggle, when we’re actually not alone at all in our experiences.

If you’re like most of us, you’ve unquestionably known unfortunate experiences like relationship issues, career issues, financial issues, health issues, and on and on. And, if you’re like most of us, you’ve felt alone during these struggles, as if you’re the only one who’s ever experienced them – especially in the moment. However, most of us have experienced them, too, so why are we all feeling so alone in the process?

The answer is simple: we don’t reach out when we should. As those struggling, we don’t reach out, and when we have a hint that someone else is struggling, we don’t reach out. Why do we behave this way? Well, self-doubt and fear on both sides, that’s why.

When we’re feeling alone in our struggles, we default to these internal scripts, don’t we?

No one understands what I’m going through.

They’ll judge or ridicule me.

I don’t want to be seen as weak.

I’m just ashamed of this mess I’m in.

I don’t want to rock the boat.

Or, for that which prevents us from reaching out to those we see struggling:

It’s none of my business.

I don’t want to embarrass them.

I won’t know what to say.

Based on our culture, these are totally valid feelings. But, there’s one problem with following them – they leave us feeling alone in our struggles, isolated. And, it simply makes any struggle worse and last longer. The antidote, however, is brilliantly simple: share.

Now, sharing can be scary and tough, requiring a lot of courage and vulnerability. But, the rewards of not being alone in our struggles outweigh all of those seeming risks. If you’re struggling alone – and we all do at times in our lives – share it with someone you trust. Interestingly, trust, in itself, can be a far more liberal definition than most might think in times of struggle. Some of the most healing, profound conversations I’ve ever had have been with virtual strangers, those recently met. What’s important is that we reach out, and it’s astounding how the sharing or inquiring of just a hint of ourselves exposes the common humanity of us all, realizing we’re not alone.

I don’t know what you’re struggling with our will be struggling with. But, I know that none of us are exempt from struggles, and none of us need to be alone in our struggles. In your tough times, I encourage you to reach out, where the hand that you grasp will feel comfortingly a lot like your own.

Let it Rain

By Mark E. Smith

Some had a limited life expectancy. Others had experienced life-changing injuries. While still others we’re born into it. All faced exceptional adversity, which made sense, as it was an expo for those with disability.

However, as I was surrounded by over 5,000 individuals that weekend facing adversity, I realized that the confidence, comfort and joy that many – not all, but many – exuded aligned with what I learned long ago: adversity dramatically improves our lives when we embrace it.

For those who haven’t experienced adversity or embraced it, they find fear in it and have sympathy toward those who live with it. For those of us who have experienced and embrace adversity know the remarkable role it serves in our lives. Our experiences have taught us that adversity shouldn’t be avoided, but actually welcomed.

See, adversity forces us to face problems and situations that are too big to resolve. In my situation, no one can change, fix or cure my cerebral palsy. And, because of that, it’s forced me to learn and grow in order to succeed in living with it. Think about what an extraordinarily fortunate situation that is to be in. Yes, we can grow without adversity, but like adding weights to a workout, adversity is a rare force that can fuel wisdom, inner-strength, understanding and perseverance, to name a few life-enhancing traits. Adversity, then, isn’t meant to restrict, but empower.

I realize that for some, adversity as empowerment is a ludicrous thought. After all, how is being seemingly down on one’s luck a positive in any way? Worse yet, when you’re down and you see someone in your situation who’s happy, that can be the perfect recipe for bitterness. But, again, if we view adversity with acceptance, we will intrinsically grow. If we embrace adversity, the challenges within will cause us to rise.

As the late singer, Prince, prepared to perform the Super Bowl half-time show, the producer called to tell him it was raining, convinced that Prince couldn’t or wouldn’t perform. Prince replied, “Can you make it rain harder?”

Prince ultimately performed among the most iconic concerts of all time, later noting that that caliber of performance could only be achieved when facing such adversity. That which he couldn’t resolve – the weather – elevated his performance.

There’s the notion in our culture that adversity is to be avoided, feared, that it’s tragic, life-detracting, that it’s asinine to even suggest welcoming it into our lives. However, that’s all gross misconception. The fact is, adversity allows us the remarkable opportunity to extract dignity from difficulty, strength from struggle, power from pain. That is, adversity allows us to not just rise in the rain, but it empowers us with the understanding that the harder it rains, the more we can rise.

Turning Off Autopilot

By Mark E. Smith

I’ve spent a lot of my life around two areas – boats and dysfunction – and what I’ve learned is that in either case, if we’re not careful, “autopilot” will fail us.

See, living in dysfunction is a lot like being aboard a boat running on autopilot – we’re not questioning or changing, but continuing on a haphazardly set course. And, as waters worsen or dangers approach, if we don’t take control, our boats – read that, our lives – will collide with them in the most harrowing ways.

For me, taking life off of autopilot has been a very personal process. As one raised in a dysfunctional family, I only knew what I knew, and my emotions were on autopilot for a long time. Turning off that autopilot proved harder in some ways than others.

Alcoholism, addiction, poverty, and a lack of education were all fairly easy for me to avoid because my awareness was so blatant. When I had welfare Christmases, parents with ninth-grade educations, and an unbroken family lineage of alcoholism and addiction, it was fairly obvious that our family’s autopilot was a disaster in full swing, cruising in the Oblivion Sea.

For me, turning off autopilot started as young as 10, but really by my teens I saw my life set on a course for collision and I took control of the helm. I saw everyone around me literally dying from living on autopilot, and I knew I had to turn that monster off for myself. Once aware and assuming conscious control of my life, I steered around the many dangers my family collided with. However, I was fortunate in that aspect – that I somehow had the understanding to do so – where I empathize with how difficult it becomes for many to turn off autopilot the longer we’ve unwittingly been on it, often from birth. It’s simply not as easy as my words read to break cycles of dysfunction, to turn off autopilot.

And, emotionally, I absolutely remained on autopilot for quite some years. Again, for me, getting off of autopilot has proved harder in some ways than others. I grew up knowing that those who loved me also hurt me, so love and hurt were intertwined. My head was off of autopilot – sober and successful – but my heart was still running its course. And, so I found myself in relationships of all sorts – from marital to sibling to friendship – that hurt, that as the psychobabble calls it, were toxic. It’s what I knew, what I grew up in, and continued living. That’s the sinister beauty of autopilot – once you’re on it, it continues on a course without any effort by you.

Awareness, though, once again proved my switch to turning off autopilot. Once I was aware that my heart was on autopilot, steering me into collision after collision, all my relationships changed. Some I just cut off; some I set healthy boundaries; and some I started anew with healthy individuals.

I’m still not perfect at any of this, and never will be, but every once in a while, when the autopilot that I grew up in intrinsically kicks in, my awareness takes the helm in a reflex type action, where I’m able to quickly correct and stay on a healthy course.

Through what I’ve lived and learned, I see among the greatest gifts that we can give others is the truth that they can break cycles of dysfunction, turning off autopilot. There’s a big difference between preaching from the mouth and speaking from the heart. I believe in speaking from the heart, and when a young person at risk in my circle was recently running on autopilot – it’s what they grew up in, escaped, then were thrust back into it based on a traumatic chain of events – I took the time to remind them of how far they’d come, to be aware that although understandably they’d temporarily returned to autopilot, awareness was what would keep them emotionally safe – that is, regrasping the helm and steering a healthy course.

Now, it’s not possible for everyone to just turn off autopilot and get their lives moving in healthy directions. We know of the medical effects that alcoholism, addiction, and mental illness have on those immersed in those conditions. These aren’t autopilots that just turn off. But, for the rest of us – and especially youth in our families and communities at risk – the ultimate intervention isn’t once there’s no turning off autopilot, but acknowledging our vulnerabilities to it early on, and elevating our awareness to the point that we turn it off and truly take control of our lives in healthy ways before life is spiraling beyond our control.

The fact is, we have no choice in how the dysfunction of autopilot gets turned on in our lives – typically, we’re born into it or trauma ushers it in. However, when we’re aware that it’s been turned on and we are running on it or at risk of running on it, that’s the time to turn it off. See, turning off autopilot removes continuing living the pain of our pasts, and allows taking the healthy helms of our futures. May you and I chart the healthy course our lives are meant for.

Crystal Glasses of Ginger Ale

By Mark E. Smith

By the time I was vomiting uncontrollably in the shower that eve, I felt it a mixed blessing. On the one hand, I made it through a day that encompassed a media feature of my company, and I suspect vomiting in front of the press and my CEO may have influenced the story a bit. The press is fickle that way.

On the other hand, I was perplexed how I became so sick, so fast? And, so, as my wife brought me a baker’s bowl, so I could make it from the shower to the bed, vomiting on the move, I sought her expertise. After all, she’s a skilled medical professional – or, at least a high-end optician. If you can’t trust an optician to advise you on stomach viruses, who can you trust? OK, you can’t trust an optician at all for medical advice. While my wife could fit me for awesome eye wear, she was likewise clueless as as to why I was suddenly so sick?

Once in bed, things got worse. In my 45 years of having cerebral palsy, I’ve learned an invaluable lesson: the one downside to not being able to walk is not being able to walk. And, so as I felt my condition worsening, unable to sprint to the bathroom, I broke out my secret weapon: Depends. But, here’s the thing – as much as Depends are marketed as “underwear,” they’re diapers, poofy, odd diapers, sans the tape closure tabs. So, there I sat in bed – 1 am, 2 am, 3 am, 4 am – wearing a diaper while vomiting uncontrollably all night into a baker’s bowl. Some might find that embarrassing, but I found it an ingenious evolutionary system of survival. Prehistoric man and his tools had nothing on me – I had Depends and a baker’s bowl.

By the next day, I was gut-wrenching sick, vomiting ad nauseam, to painful dry heaves beyond anything I’d ever experienced. On the upside, it gives you one heck of an ab workout. I see dry-heave gyms catching on. But, I was getting sicker and sicker.

Now, here’s the brilliance of medical science: when you’re vomiting uncontrollably, they tell you to drink lots of clear fluids – all so that you can promptly vomit them back up. Gatorade in, Gatorade out. Water in, water out. It’s like I was the opposite of a waste water treatment plant, putting perfectly good fluids in me only to vomit them back up as bio hazard.

Finally, I settled on ginger ale. No, it wasn’t anymore effective than the other liquids. However, there was an elegance to it. Darling, won’t you please bring me a glass of ginger ale, with ice, in our finest crystal? And, that my beautiful wife did. Was I a sick, pathetic mess? Absolutely. I was in bed, wearing a diaper, vomiting into a baker’s bowl! But, the crystal glasses of ginger ale added a certain class to it all – even as I vomited every last drop. I was a hint of a British gentleman – vomiting, wearing a diaper.

After a few days, my wife wisely wanted to call an ambulance. I was only getting worse, unable to eat in days, and arguably pushing the line toward dangerous dehydration. My wife knew best. However, I’ve long trusted a slightly off-kilter Italian – my doctor. He’s long lectured me on trying to stay out of the hospital. English is his second language, so I don’t always know what he’s saying, but his theory is something to the effect of: Hospitals are full of viruses. You eat bad fruit, go to the E.R., touch something, get a flesh-eating bacteria, and, boom, you die! Yes, he’s prone to slippery-slope exaggeration, but has his points.

Still I followed my doctor’s advice and opted to stay in bed, wearing diapers, and vomiting the finest ginger ale from crystal glasses that money can buy – $1.79 per 2-liter bottle, imported from Canada.

Out of boredom one eve, I lay watching CNN political coverage. I was already sick, so the dynamics of the 2016 political race technically couldn’t make me any sicker. Governor John Kasich told the story of confiding in former governor Arnold Schwarzenegger that he didn’t know how to handle personal attacks? Schwarzenegger replied with classic Arnold advice, “Enjoy the punishment.”

Schwarzenegger is no philosopher, but he was on to something. We have choices in our lives. We can be bitter and resentful, or find some sense of gratitude, no matter how bleak the circumstance. Yes, I was sick to a troubling level, but at least I was sipping – and vomiting – ginger ale from a fine crystal glass.