Sometime Around 2 A.M.

By Mark E. Smith

I don’t know what time it is? I guess it’s sometime around 2 a.m. It was mere weeks ago that I could simply roll over or sit up and look at the clock. Not anymore.

I awake several times per night like this now, in pain from not being able to roll or shift positions myself. I lay awake until the pain is unbearable, then I wake my wife. Sweetie, can you please roll me over?

Age, disability, illness and surgery has all taken its toll – and much of my physical abilities and health with it.
I suppose I should be devastated, even bitter toward it all. I’ve had to live with cerebral palsy my whole life, now this – how can life be so cruel?

Yet, I don’t feel that way at all. In fact, I feel the opposite – blessed. No, I don’t want any of this, not the debilitating illness or chronic pain or loss of abilities. But, it’s not my call. It’s aging and illness and life at play. Resenting it all wouldn’t change anything other than adding a self-defeating tail spin to my life. Acceptance is liberating.

My wife is right next to me, touching me, side-by-side. We have a king-size bed, and she insists that I somehow end up on her side no matter what. Yet, in reality, I don’t think she’d want it any other way – close, touching, reassuring, especially now, for the both of us.

Life is about change, and questioning it or resenting it over the long run only defeats us. I’m not saying taking time to acknowledge loss or express our feelings toward adverse changes isn’t normal or healthy – absolutely it is. However, there has to be an expiration date for it, or it will consume our lives more adversely than the actual changes.

I’m to the point where my pain is unbearable and I need my wife’s help rolling over. I gently awaken her, and she softly rolls me over, asking in the darkness if I need anything else?

I answer, no. My answer applies to both the immediate and my life in whole. In the silence of the night, I think about my wife and our daughters and the blessed life I have – and I recognize that I’ve never had more.

Before the Bars Turn Pink

By Mark E. Smith

I’ve had the privilege of visiting Children’s Hospital of Philadelphia, which goes by CHOP, several times recently. What I’ve learned has both strengthed and questioned my faith in mankind.

During my first visit at CHOP, I was struck by the level of graciousness among all employees, from the parking attendants to the doctors. I wondered, how does an organization with thousands of employees maintain such an inspired staff across all positions? What does CHOP’s human resources department know that others don’t?

I thought about this long and hard, as among my roles at my company is to ensure that our employees understand the importance of their work, the importance of serving our customers who rely on our mobility products. Yet, the more I thought about CHOP’s workforce, I couldn’t break the code.

Then I went back. And, informally, I studied every interaction I witnessed while I was there, from my interactions with others to witnessing others interacting. What I realized was that the secret to CHOP’s amazing culture quickly became not just apparent, but I felt it in every fiber of my being: shared humanity.

See, while CHOP is a great resource as among the best pediatric hospitals in the world, no one wants to be there. Children and their families are only there because they’re going through a medical crisis or disability, often a grave condition. As a result, everyone there is going through something, and that fact is known. As an employee, patient, parent, or visitor, you know that reality – it’s unmistakable when you’re there, people are in the midst of life’s most difficult circumstances. Therefore, the culture brings out nothing but kindness, compassion, and empathy toward everyone you encounter and everyone who encounters you.

When you visit CHOP, you’re issued a daily name badge, which includes your photo. Using an inexplicable security technology to me, when you exit the complex, pink bars void your name badge, noting that you’ve left the buildings.
Every time I exit CHOP, to the parking garage, and the pink bars appear across my day name tag, a big part of me wishes that name tag remained valid in the everyday world, where we, too, intrinsically treated each other with nothing but kindness, compassion, and empathy no matter where or who we are.

When Nectarines Appear

By Mark E. Smith

The way John drove his power chair still amazes me. It was as if he was merely an occupant as the power chair raced around by itself. Maybe it was the way his body jostled as a result of a lack of muscle strength due to quadriplegia? Or, maybe it was the way his curled hand didn’t appear to fully grasp the joystick. Whatever the case, John, in his power chair, flew down Portland’s sidewalks at 6 MPH with a careless whimsy I’ve never seen elsewhere, where one would think, Man, that power chair is going to kill that guy! And, it did toss him out a time or two – no harm done.

I’ve stopped believing in the finality of death, not in the sense of the departed, but for the living. This has come up for me most recently due to being reminded of John’s life and death, as a bio-pic of his life has made headlines. Another part of it is my own age and disability, having to face my own mortality. It’s all causing me to deeply ponder what death really means for the surviving loved ones? What remains of us when we pass?

The answer I’ve realized is, most of us remains, especially in the lives of those we impacted the most. My mother, father, and stepfather remain in my thoughts and dreams years after their deaths – some fond, some difficult. I’ve been inclined lately toward the fond. My wife and I were grocery shopping and she showed me the most perfect nectarine. I don’t recall seeing one since I was a child, my mother often feeding them to me. For a moment, my mother was there. My father and I didn’t speak much over my life, but we did for a span in my 20s, and he’d say the same words whenever I answered his calls: “Hey, what are ya doing?” I inexplicably find myself saying that to my oldest daughter when I call, and catch myself, for a moment flashing back to my father calling me. Every once in a while, I enter our empty kitchen in the morning and imagine my stepfather happily making coffee as among the reasons that I was onboard with buying our farmhouse is that he would have loved it. And, as for my disability contemporaries who’ve passed, I occasionally pull up YouTube or Facebook, and there they are, the same. John is alive, eight years after his passing, singing, playing the harmonica.

When we were children, we were most likely taught the finality of death. When someone died, we were told that they were gone forever, never coming back. Sometimes we were told that bluntly; other times, more softly, that they went to Heaven, watching over us. Yet, as one who’s experienced loss, I now know that what we were taught was wrong. There’s little finality to death for the living. Those passed remain with us, alive in so many ways. This realization, based on my experience, has brought me tremendous comfort, both toward those I’ve had pass and toward those who will one day experience my passing.

If you’ve had others pass in your life, I’m sure that you can relate to this paradox: They’re physically not present, but remain in our lives in so many ways, appearing often, as simply as via a nectarine.

This isn’t to say that grief, loss, and sadness – all debilitating at times – don’t exist. Of course they do. The loss of anyone close in our lives is devastating. Yet, again, so much still exists, not just via memories and remembrances, but in the seemingly tangible – a nectarine. In this way, the physicality of body is gone, but the person always remains with us.

My wife and I saw the trailer for the John Callahan bio-pic. There’s a clip of Joaquin Phoenix, who plays John, driving down the sidewalk in a power chair. My wife noted that every movement appeared exactly as john. And, I thought, It is John.

When Nectarines Appear

By Mark E. Smith

The way John drove his power chair still amazes me. It was as if he was merely an occupant as the power chair raced around by itself. Maybe it was the way his body jostled as a result of a lack of muscle strength due to quadriplegia? Or, maybe it was the way his curled hand didn’t appear to fully grasp the joystick. Whatever the case, John, in his power chair, flew down Portland’s sidewalks at 6 MPH with a careless whimsy I’ve never seen elsewhere, where one would think, Man, that power chair is going to kill that guy! And, it did toss him out a time or two – no harm done.

I’ve stopped believing in the finality of death, not in the sense of the departed, but for the living. This has come up for me most recently due to being reminded of John’s life and death, as a bio-pic of his life has made headlines. Another part of it is my own age and disability, having to face my own mortality. It’s all causing me to deeply ponder what death really means for the surviving loved ones? What remains of us when we pass?

The answer I’ve realized is, most of us remains, especially in the lives of those we impacted the most. My mother, father, and stepfather remain in my thoughts and dreams years after their deaths – some fond, some difficult. I’ve been inclined lately toward the fond. My wife and I were grocery shopping and she showed me the most perfect nectarine. I don’t recall seeing one since I was a child, my mother often feeding them to me. For a moment, my mother was there. My father and I didn’t speak much over my life, but we did for a span in my 20s, and he’d say the same words whenever I answered his calls: “Hey, what are ya doing?” I inexplicably find myself saying that to my oldest daughter when I call, and catch myself, for a moment flashing back to my father calling me. Every once in a while, I enter our empty kitchen in the morning and imagine my stepfather happily making coffee as among the reasons that I was onboard with buying our farmhouse is that he would have loved it. And, as for my disability contemporaries who’ve passed, I occasionally pull up YouTube or Facebook, and there they are, the same. John is alive, eight years after his passing, singing, playing the harmonica.

When we were children, we were most likely taught the finality of death. When someone died, we were told that they were gone forever, never coming back. Sometimes we were told that bluntly; other times, more softly, that they went to Heaven, watching over us. Yet, as one who’s experienced loss, I now know that what we were taught was wrong. There’s little finality to death for the living. Those passed remain with us, alive in so many ways. This realization, based on my experience, has brought me tremendous comfort, both toward those I’ve had pass and toward those who will one day experience my passing.

If you’ve had others pass in your life, I’m sure that you can relate to this paradox: They’re physically not present, but remain in our lives in so many ways, appearing often, as simply as via a nectarine.

This isn’t to say that grief, loss, and sadness – all debilitating at times – don’t exist. Of course they do. The loss of anyone close in our lives is devastating. Yet, again, so much still exists, not just via memories and remembrances, but in the seemingly tangible – a nectarine. In this way, the physicality of body is gone, but the person always remains with us.

My wife and I saw the trailer for the John Callahan bio-pic. There’s a clip of Joaquin Phoenix, who plays John, driving down the sidewalk in a power chair. My wife noted that every movement appeared exactly as john. And, I thought, It is John.

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.

Recognizing Who’s Perfect

By Mark E. Smith

I truly believe that those I love are absolutely perfect. And, I tell them so, from the depth of my heart.

See, when I say that those I love are absolutely perfect to me, it doesn’t mean “perfection;” rather, it means their being true to oneself and others. Those I love aren’t without flaws or character idiosyncrasies. However, in my eyes, there’s nothing that they need to change or that I want to change about them. They’re perfect.

So often – and I’ve fallen into this trap in my past– we see all of the traits we want to change in our loved ones. At our worst, we may overlook 97% of the amazing qualities in our loved ones and fixate on the 3% that we disagree with. Even worse is when we vocalize our dislikes, especially to our loved ones, themselves. There’s few worse blows than criticism from a loved one.

I’ve also heard friends complain about their amazing spouses and children, all because they’re overlooking the greater good in them. Why bring this negativity into our lives and those we love?

The alternative is to see how perfect our loved ones truly are. Again, my wife and daughters don’t embody literal perfection – none of us do. However, there’s nothing about them that I want to change. They are… well… perfect.

This isn’t to say that we should view all by such a way. It truly must be earned. I loved my mother, but I rightfully disagreed with the life she lived as an alcoholic. I never saw her as “perfect” and I would have been insane not to have wished much of her to change. But, if we have those in our life who are remarkable individuals, what’s to change? And, why look for aspects to change?

The answer is, there’s no good reason. It’s petty and self-defeating. Our loved ones deserve better, just as we don’t need to create problems where there are no problems. Seeing those we love as rightfully “perfect” is the ultimate form of acceptance and love, and extending it to those who matter most to us elevates our relationships.

Therefore, the next time your spouse or children irk you a bit, maybe take a moment and ask yourself if it’s truly a problem or are they just earning their way into your heart as perfect?