power of the human spirit – PowerchairDiaries

At the Heart of Special Needs

By Mark E. Smith

Annabelle was five when she came into my life. It was among my truest blessings, not just because of my own yearning to continue being a round-the-clock parent since my oldest daughter was finishing high school and going off to college, but because of the beautiful child Annabelle was. She exuded a joy and carefree zest for life that simply isn’t found in most people, even children.

Any time that we marry someone with children, it’s often said to be a “package deal,” but this union was far beyond such simple words. This was the universe bestowing me among the most precious gifts in my life – a wife and a second daughter.
We often hear of “special needs children.” In raising my oldest daughter, Emily, I always took issue with that term because every child has “special needs,” where our role as parents is to identify and meet each of our children’s needs, unique to that child. In raising Emily from birth through now graduate school, I’ve been aware of the many “special needs” she’s had along the way.

Annabelle, likewise has special needs. But, again, like all children, hers are unique. Annabelle has spina bifida and autism. She’s wicked smart and has a sense of humor that has those of us around her laughing most of the time, but she doesn’t have “typical” interpersonal interactions. There’s no I-love-you, which makes her hugging her mother or occasionally holding my hand so powerful within our hearts.

As a parent, my primary role is in working with my wife to ensure that Annabelle has everything she needs, from skilled nursing care, to a special bed, to her own play room that’s everything. Annabelle, her haven.

I didn’t realize how much Annabelle recognized me and my dedication to meeting her needs until one night in our van. Among her favorite items of engagement is her tablet, on which she watches children’s YouTube videos. She was on her tablet in our van while my wife was putting groceries in our house before we were going out again. Suddenly, Annabelle dropped her tablet in such a spot on the van floor that neither of us could seemingly get it. She was buckled in her car seat and my power chair was situated in such a way that when I backed up to get the tablet, it was under my power chair.

Annabelle became more and more upset, to a panicked degree. I realized that if I reclined my seat back, I may be able to grab the tablet. As I did so, it put me in proximity to Annabelle, and she begin patting my shoulder, repeating, “Mark! Mark! Mark!”

This moment was profound because she doesn’t address anyone by name, so her addressing me directly in her moment of desperation was both heartbreaking, as she was so upset, and breathtaking because she was reaching out to me for help.

Fortunately, I scooped up the tablet and handed it to her, crisis ended.

Annabelle’s father will rightfully always be such. However, being acknowledged as her “Mark” in her time of need was among the most heartfelt moments of my life. Indeed, there’s nothing more poignant as a parent than being there to meet our child’s “special need.”

Windless and Still

By Mark E. Smith

Life can be brutal – dehumanizing at its worst, where some of us lose so much at points, we feel that all we are is flesh and bones.

Yet, we push through it – most of us, anyway. Not all. We scrape the depths of our souls for whatever is left, and that marrow revitalizes us enough to start a comeback, following some path, yet to be totally revealed, that we hope will lead us out. It’s never linear, though, is it? We still find glimpses of hope veiled by dark patches. But, we reach and claw, and keep finding our way out.

How long does it take, we ask. Each of our journeys is different, in scale and in time. Months for some. Years for others. A lifetime for a few of us.

I think about this in bed on an August morning at the shore. My wife and youngest daughter are still asleep. I guess it’s around 7:30 am based on the last time I rolled over to check the alarm clock. No shower today. I have no desire for one.

Our daughter stirs, chirping, as we call it when she sings herself awake. I both revel in her adorable character and envy her. I often awake happy, with a tune in my head, but we adults are conditioned not to let it out. Kids are the fortunate ones – free of so many smothering social norms that would bring so much joy if we, too, could just let it out.

We all eventually get up and my wife asks me what shirt I want to wear? We banter about my insistence of a white, spread collar button down. She notes that it’s too wrinkled. I explain that it’s fine for my plans. I’m just going to park myself on the beach. Other events may transpire before or after, but I’m not concerned. A wrinkled, white button down will do. I slip it on, buttoned, over my head. As it slides down my torso, it feels crisp, cool, flowing, perfect.

I roll into the bathroom and turn on the sink’s faucet. I wet my hair with my hands, noting the grey. I run a brush through it several times and I’m good to go for the day.

A white shirt and combed hair were my only concerns, and they’re behind me. I roll over and look out our window to the beach, windless and still. And, I, too, am at total peace starting this day.

“Who’s ready for the beach?” I ask my wife and daughter.

The room is silent. We all know it’s a rhetorical question.

Stopping the Spiral

By Mark E. Smith

It’s that murky area, the one where a bad day turns into a bad week, maybe a bad month, and we can’t find our way out. These are the scary, dangerous times for many.

I recently had one of those weeks, all emotionally spiraling out of control. A series of deaths around me triggered my own anxiety around mortality – fears of leaving my wife and daughters behind upon my passing – created by a not-so-long-ago health crisis. The anxiety and fear piled on and I felt a confusion, a disassociation, a fear that my life, too, was destined to end sooner than later.

As the week went on, I found myself feeling more and more isolated, even though my everyday life didn’t change. I was surrounded by people – my work, my family, my community – but still felt alone. My wife recognized my behavior, wondering if I was “back there” again? It’s something she’s seen come and go, especially since my health crisis.

I remember sitting alone at our kitchen table one eve, irrationally thinking that all around me was temporary, that this might be the last time that I looked out the windows at the early-summer, green-carpeted hills that surround our home. Just as this lush season will fade, might life, itself?

I grabbed my cell phone and sent a text to my lifelong best friend, asking if he could talk? I knew he could, as whenever either of us reach out, the other understands the importance of answering. And, so for an hour, we talked about what I was feeling, and when I hung up the phone, the spiral was neutralized.

If we are thinking, feeling, introspective individuals, we’re going to experience difficult times in life. At those moments, it’s crucial that we’re self-aware enough to reach out to someone for support, clarity, validation of feelings. We need to be self-aware enough to say, I need help stopping this emotional merry-go-round I’m stuck on.

For some of us, a partner, family member, or friend can offer the grounding perspective we need. For others, where the issues are more clinically based, professional help is needed. In either case, our reaching out is key to our survival.

Now, I know that reaching out is hard and scary. It’s difficult to share that we’re struggling, if not impossible for some. At the very least, by reaching out, we’re exposing our deepest vulnerabilities and extending trust. It can seem harrowing.

However, no one can help us if they’re unaware that we’re struggling. So often we wait for others to come to us out of concern. But, if we’re not showing signs, they can’t be expected to. This can be compounded by the fact that many who are struggling master the art of hiding it — again, showing vulnerabilities is extremely difficult for many. Therefore, it’s vital that we, ourselves, reach out, that we push past our apprehension and fear in our own best interests.

I’ve learned that in my toughest times, reaching out has never failed me. When I’ve reached out, I’ve found the most profound human experience: an embrace.

We all struggle at some point in life, the causes of which are unique to each of us. When we find ourselves there, let us not be ashamed or question ourselves or, worst of all, isolate and hide our struggles. Rather, let us serve ourselves by reaching out to those around us – and experience the power of common human experience. We never need to be alone, nor are we.

Sailing in all Seas

By Mark E. Smith

I heard a doctor say, “Wellness is the temporary state when we’re in-between illnesses.”

On the surface, it sounds cynical. However, there’s a truth to it, both in medicine and in life.

No matter who you are, life is a constant ebb and flow of circumstances. We can be just as assured of good times as we can be of bad times. Most often, life is a confusing mixture of both. Just as we get ahead, we experience a setback. Just as we’re facing defeat, we’re uplifted. And, much of it seems inexplicable in reason and timing.

What can frustrate us even more is the never-ending chain of down times, when it appears that no matter how hard we try to ensure all is well, something always goes wrong. The fact is, we can never totally isolate ourselves from life’s tougher times. Money can help us better absorb difficulties, but not so much prevent them. In this way, peaks and valleys aren’t unique to any one of us, but intrinsic to life itself.

I’ve had a lot of extreme highs and extreme lows in my life. As one who’s tried to avoid the lows by taking every possible precaution in cases – with little success – I’ve found myself frustrated with the fact that, no matter what, life drags us through tough stuff from time to time. Yet, I’ve found a way to soften the blows a bit.

I had a fantastic talk with a dear family friend over dinner in Boston a while back. We got into a theological discussion about why does God allow bad things happen to good people? (I know that sounds cliché, but stick with me.) My friend replied, “So, are we to only value God when he gives us what we want?”

Her question also struck me me in a secular way: Are we to only value our life when it goes how we wish?

For me, finding gratitude for life itself – regardless of the circumstances – has been the ultimate key to moving through some very tough times. I’m not perfect at it, but when I stop separating the so-called good and bad, and focus on gratitude for life in its entirety, it’s hard to stay in a funk or get too upset. Similarly, by not hyper-emphasizing good times, it lessens the chances of feeling wronged when the tide changes – as it always does.

What I’ve learned is that life is far more fulfilling when we don’t place too much weight on the good versus the bad, but on finding gratitude for all of life. On our journeys, we’re going to experience calm seas and wicked storms. Let us not get hung up on either, but relish the journey, itself.

Don’t be Fooled by a Cereal Box

By Mark E. Smith

Cereal sales have been on the decline. I’m okay with that – especially, Wheaties. I should clarify, I have nothing against the cereal, itself. In fact, I rather like it. However, the Wheaties box has been synonymous with having the spirit of a champion, regardless of the adversity one faces, and it propagates a flawed mindset.

More and more, we seem a just-get-over-it culture. No matter how extreme an adversity we face, many feel that we should just get over it. And, if we can, we’re celebrated for it, our picture on a metaphorical Wheaties box.

Yet, it completely contradicts how most of us move through adversity in healthy ways. Addressing adversity is progressive movement, but it’s not without personal peril. Ideally, we do make progress every day. But, it’s unrealistic to expect us not to have bad days and experience real emotions – negative and painful – in the process. Life can get brutal, and in those moments, it’s natural to feel beat up and defeated. In fact, it’s vital. We can’t begin getting up unless we’re willing to admit that we’ve been knocked down.

During these times, we need a specific type of person with us. It’s neither someone who lays beside us in defeat, nor someone who tells us to just get over it. Rather, we need someone who understands that the path through adversity is progressive, but not linear. We need someone who knows how brutal life can feel, that it should in those moments, but also knows the importance of moving through them.

Put simply, during the toughest times in our lives, we need those around us who understand that facing adversity isn’t summarized on a Wheaties box.

The Eye of the Beholder

By Mark E. Smith

The phrase, “Beauty is in the eye of the beholder,” dates back to the 3rd century, with the literal meaning of, “The perception of beauty is subjective.”

While what we may find beautiful is subjective – as in fashion or art, for example – there’s a truth that our beauty is not subjective, but intrinsic to each of us. The beauty of objects certainly is subjective. The beauty that each of us possesses is not.

Unfortunately, we live in a culture that all but encourages us not to see our intrinsic beauty, but to see our so-called flaws. Grab most magazines, turn on most television shows, watch most movies, and we’re bombarded with messages that we’re somehow not good enough. Every year the “sexiest man alive” is named and it’s always an insanely rich, handsome, suave celebrity who’s the farthest person from who I am as one with spastic cerebral palsy. I could look at that idealized image of a “man” and think, No woman should ever love a guy like me. Yet, my wife does, just as many other perfectly imperfect couples are madly in love with each other. How is that possible when we’re supposed to meet cultural ideals to be labeled as beautiful?

I learned of an amazing young lady through a friend. Kennedy, who’s pictured above, was born with lymphatic malformation, a condition that results in a mass in the neck or head due to abnormal formation of the lymphatic vessels. If you’ve ever struggled with issues surrounding your appearance, you can imagine how difficult this condition could be to live with in our culture of idealistic beauty.

However, it’s not difficult for Kennedy. At 20, a college student, she’s an advocate for all to “let their inner beauty shine,” beginning with her own. She’s spreading the rightful message that we’re all beautiful in our unique ways.

Of course, no one looks at Kennedy and sees anything less than beauty. She’s a young lady lighting up the world with her spirit and work. Still, so many of us don’t see the beauty in ourselves. We see so-called flaws and beat ourselves up over them, to the degree of not letting others in. No one should love me like this…. No one could find me attractive like this…. We have the wisdom to see the true beauty in all others, but don’t apply that truth to ourselves – and that must change.

Those around us love us for us – perfectly imperfect – and we, too, must take that to heart, loving ourselves for who we are, as we are. It’s most often the case that the aspects for which we beat ourselves up are, in fact, among the qualities that make us uniquely beautiful and endearing to others.

You are you because you are you, and that creates your unique beauty. Don’t resent any differences you may see in yourself – we’re each different! – but embrace them. I have none of the attributes of the “sexiest man alive, “ but my attributes make me… well… me, and they create a uniqueness that my wife happens to love. I don’t want to be the sexiest man alive; rather, I’m confident in just being me, spastic cerebral palsy and all.

All of us – even the so-called sexiest man and women alive! – can look in the mirror and see only our supposed flaws. However, our perception isn’t reality. The beauty that others see in us is the truth we must see in ourselves. If we are to fully open ourselves up to the love of others, we must also open ourselves up to the love of self, recognizing our own beauty.

We’re each beautiful, not because we meet the fallacy of an idealistic standard, but because we are unique. Let us celebrate each of our uniqueness by being the epitome of beauty – simply ourselves.

What We Might Be

By Mark E. Smith

The philosopher, Laozi, founder of Taoism, asserted, “When I let go of what I am, I become what I might be.”

How many of us have felt trapped in our existence at points in our lives, where circumstances dictate who we are? So much of our lives can be painfully defined by such aspects as our physicality, our family history, our socio-economics, and what’s projected upon us. I know, as I’ve spent my whole life as “one with cerebral palsy,” where from the moment of my birth, I was told what I am. If we go back in time, or even today, as some may still see me, seemingly incapable on realms ranging from the physical to the mental. And, in some ways, they are right. After all, as one with cerebral palsy, my wife does help me on and off of the commode, and, no, I can’t physically even write my own name.

I could have spent my whole life buying into what I am. We all could, no matter our circumstance or situation. However, there’s nothing to gain by buying into “what we are.” Rather, we have everything to gain by striving toward what we might be. I often recount the story of being thrust from an institutionalized school as a seven-year-old to being one of the first publicly mainstreamed students with a severe disability in the U.S. I had no support, but I did have two choices: I could be the child with severe cerebral palsy who many thought belonged in an institutionalized school – after all, that’s who I literally was. Or, I could push toward who I might be – that is, in my young mind, a “normal kid in a normal school.” Everyone knew what I was, but few believed in who I might be. At seven, I didn’t know who Laozi was, or even the gravity of what I was pursuing. The power of the human spirit drove me toward who I might be.

Here’s the key that I now realize: no matter where we find the courage, consciously or intuitively, we must believe in our power to rise above what we are in order to achieve what we might be. I know it’s hard. In ways, it’s easier as a child because the human spirit is naive to how brutal life can be. As adults, time can wear on us – broken and battered. Toxic relationships, dysfunctional upbringings, social pressures, and on and on can all weigh us down, teaching us what we are, in ways that defeat us instead of inspiring us. There was a period in my 30s where I looked in the mirror and saw what I was: a divorced, full-time single dad with severe cerebral palsy. That’s a grim prospect on the dating scene. What woman would ever take on that mess?

But, that wasn’t what I had to be. What I might be is a loving father, and a man who grew and learned from his past marriage, where life-long cerebral palsy instilled in me attributes of perseverance, self-confidence and empathy toward others who’ve faced adversity. Who I might be was once again what I looked toward, and while change didn’t occur overnight, it led to finding my wife and a second daughter, where my life has remained on an empowered, blessed trajectory encased by love for years now.

See, whenever we find ourselves trapped or discontent with what we are, it’s an opportunity to pursue what we might be. We don’t have to settle for where we’re at. We can strive toward what we might be. Is it easy? No. Is it scary? Yes. Might we fall short in the attempt? Absolutely. Yet, as one who’s found himself at such crossroads many times, indeed, it is only when I’ve let go of what I am that I’ve moved closer to what I might be.