raising a child with a disability

Intersection of Purpose and Hope

By Mark E. Smith

I was recently in Boston, working a consumer trade show for disability-related products, including my company’s power chairs. If you’ve never been to Boston, it’s a stunning city – from the architecture to the cobblestone streets to the harbor – and I found myself in Boston at an amazing spot: the intersection of Purpose and Hope.

No, the intersection of Purpose and Hope isn’t a literal street corner in Boston, but it can be found in any city, and in any of our lives. For me, in Boston, it was found in my meeting a seven-year-old boy with cerebral palsy.

He reminded me a lot of… well… me at that age. He was a little guy, squirming all over the place in a manual wheelchair due to spasms and tone, symptoms of cerebral palsy. And, the reason why his family was at the show was because he needs a power chair to keep up with his siblings and peers – read that, to just be a kid.

We had our top-of-the-line power chair there in a pediatric seat size, and as I soon realized, uncannily as if made to fit him exactly. To address his involuntary body movements, I had our reps unbolt lap belts from other units, and we got him seated, strapped in and stable. And, like he’d been in a power chair his whole life – or, more aptly, a NASCAR driver – off he went!

I looked at his parents’ faces, their eyes, knowing how bittersweet these moments can be. On the one hand, a parent wants his or her child to have all of the independence in the world. Yet, no parent wants his or her child to have a lifelong disability. A child going into an advanced mobility device can be a parent’s emotional tug-of-war.

However, his parents understood the liberation he was gaining, and their expressed emotion was joy as he roared around an empty part of the convention hall.

“He’s going to be a little terror,” his mother said with a huge grin. “…From the playground to chasing his brothers on their dirt bikes.”

For me, I was blessed in that moment in living my purpose as one who’s found so much emotional reward in my career of serving others who are on the path I, too, have traveled. And, the family expressed so much hope toward the quality of life a power chair will bring to their son. All of this is the breathtaking beauty of the intersection of Purpose and Hope.

Where’s that intersection in your life right now? Sometimes we bring our purpose to the corner, and sometimes we come needing hope. I’ve been on both sides of the corner. Regardless, when we simply have the initiative and courage to place ourselves at the intersection of Purpose and Hope, all lives involved are elevated.

What Nancy Didn’t Know

By Mark E. Smith

My daughter, almost 17, ran into Nancy at the grocery store. Nancy is head of my daughter’s performing arts program each summer, a calm, cultured, collected woman in her 50s. However, as my daughter told me, Nancy was a bit odd that day at the grocery store, a bit disoriented, my daughter feeling as though Nancy didn’t recognize her, although they knew each other very well.

It was the day before Thanksgiving, so my daughter – although disconcerted by Nancy’s sudden distance – chalked it up as Nancy distracted by the holidays and outside of the usual setting where they knew each other, outside of auditions and auditoriums, the music of both their lives. And, I agreed.

Yet, Nancy knew something my daughter and I did not. Or, maybe, my daughter and I knew something Nancy did not. See, later that night, Nancy emailed my daughter, both apologizing and explaining. Nancy saw my daughter pushing a 5-year-old little girl who uses a wheelchair. She was singing and dangling a ribbon as my daughter pushed her down the aisles. But, in the email, Nancy went on, saying that she didn’t know my daughter’s connection to the little girl, but she knew what type of life the little girl must live in a wheelchair, and how difficult life will be when she grows up. Nancy had preconceived notions of what disability meant, ignorance and stereotypes locked into her mind somewhere astray from her wisdom and education, an out-of-place note in an otherwise harmonious symphonic composition.

However, my daughter and I knew something Nancy did not. What Nancy didn’t know was that there are no distinctions among children. Every child is perfect and beautiful and unique in his or her own way. As with no fall leaf being any less awe-inspiring than the next – regardless of its color, shape, or size – every child in a grocery store should bring a warm smile to your face as you pass by him or her in the aisle. Children are simply children, after all – perfect and beautiful and unique just like the leaves of fall.

It Gets Better

Morgan Duffy & Crew, Stanford Class of 2013

By Mark E. Smith

Author’s Note: There’s a disturbing undercurrent that, in this modern day, some teens with physical disabilities still feel isolated, depressed, even suicidal. So, let us talk about being a teen with a disability, and how life gets better….

As a teenager struggling with having a disability, you need to know only one truth: Life gets better – remarkably better.

I remember being a teenager with cerebral palsy and, like you, I remember struggling with it all – feeling different, but wanting to fit in; being treated different, but wanting to fit in, or, at times, feeling completely “normal,” but not being accepted as such. No, high school for me wasn’t all terrible – there were some good friends and good times, as I hope there are for you. We should all see good where there’s good. But, it wasn’t easy for me being different. But, it did get better. And, I know it may not be easy for you right now, but it will get better – remarkably better.

See, high school is tough for everyone, typically a confusing time, and everyone just wants to fit in. I have a 16-year-old daughter who “fits the mold,” and it’s even tough for her and her friends at times. Like you and my daughter and her friends, I just wanted to fit in, too – to have the right friends, have the right persona, and get invited to the right parties. And, for me, maybe like you, sometimes it worked, and sometimes it didn’t. Well, a lot of times it didn’t work. And, when it didn’t work – the occasional bully calling me “retard,” or not getting invited to different events and such – it really, really hurt. At points, I, too, just wanted to give up and die. And, before it gets better, sometimes it gets worse.

I remember at among the lowest points in my teen years, I had a girlfriend who I thought truly accepted me, but when it came time to dance at the prom, she wouldn’t dance with me because I used a wheelchair. I remember thinking that my disability was the blame, that if I wasn’t plagued by cerebral palsy, I’d have all of the friends, girlfriends, and coolness in the world. However, I would never be accepted or successful because of my disability.

But, I was wrong. High school and my peers had no impact on my ultimately living a happy, successful life. The day that I graduated, virtually everything got better for me. I went from bullies calling me “retard,” to being a writer, speaker, and academic. I was soon invited to real parties, with amazing people, even getting to meet the President of the United States. And, while no relationship is perfect, I had my ultimate dances with amazing women since – loving, accepting, sincere. It all got better – remarkably better.

My daughter and I were planting Marigolds this spring in a flower bed in front of our home. It was a 70-degree sunny day, where our English bulldog lay on the ultra-green grass. And, although my life, again, isn’t perfect, I was reminded of all I’ve been blessed with – my daughter, a career that helps others, a nice home, the respect of those in my community – and I thought back to my days in high school, wondering where those who treated me poorly are today? Oddly, when I was on Capitol Hill recently, none were there. I don’t see any of them in magazines that I write for, or any with Internet followings. And, I have to wonder with a smile, is their grass as green as mine?

The fact is, while those who hurt you today in school may seem so powerful, they’ll soon enough get lost in the world. But, you. You were born into the extraordinary, with capacities toward life success that they’ll likely never realize. Let’s wish them well, but they don’t have what you have – that is, potential waiting to explode. And, it will, where your life is going to get better – remarkably better. You’re a survivor and a thriver, and that which seems to work against you now, will work for you soon. You’ve been given the gifts of tenacity, perseverance, and empathy – traits that are rocket fuel for life, just waiting to ignite your life in the most rewarding of ways.

My young friend, Morgan Duffy, graduates from Stanford University in a few weeks at this writing. She’s a Dalai Lama Fellow; she’s done an internship on Capitol Hill; and, she’s studied abroad. And, get this, she’s accepted a job with Genentech – without even applying (the recruiters found her based on her accomplishments). But, I’ll let Morgan’s own words explain the rest of her story:

So I’d like to tell you that I am your average 21 year old, living life and learning through mistakes and experiences. Most of my experiences, however, are less than average. Three years ago, I packed up my life and moved from the small city of Scranton, PA to begin my college education at Stanford University. I am a Cross Cultural Health and Intervention major with interests in disability, health policy, social justice, women’s health and choice. Like most, my interests are based in experience. I am a woman with a physical disability, who navigates the world in a wheelchair. And I like to feel the world beneath me in that way, taking each bump and knock consistently and steadily. My mother is a nurse, and through my years listening to her complain of the inefficiencies and inequities of modern US health, I have been motivated to learn how to change this. Social justice was the foundation of my high school career at Scranton Prep, and I have vowed to never forget.

Morgan isn’t an exception, she’s the rule – just as you are. You, too, will leave your town and “feel the world beneath you,” as Morgan puts it, going on to successes that won’t just change you, but will change the world.

It may all seem tough today, but the strength to hold on was born into you – there’s a purpose for who we each are, and yours is extraordinary. Tough out the tough times, as it all gets better, remarkably better. And, yes, the grass will be greener on the other side. I’ll see you there.

Dream On

I never doubted that equal rights was the right direction. Most reforms, most problems are complicated. But to me there is nothing complicated about ordinary equality. -Alice Paul

By Mark E. Smith

When I was born, there was no humility in disability, just the medical authority calling people like me the vegetative minority. No, I couldn’t walk, speak or crawl; but, with my toddler eyes and ears, I saw and heard it all. Dream on.

And, as I grew, no one knew what my fate would be, a prognosis based on speculative hyperbole. But, still, with ignorance, everyone all labeled me – crippled. …Yep, that was me. Yet, inside hid the person I knew I could be. And, at night, when I cried — trapped by an ignorant society — even my mother couldn’t comfort me. Dream on.

When I was seven and sent to the back of the church, I was taught children like me didn’t go to Heaven. How could a God, who I came from, not let me with a disability into his kingdom? It wasn’t some Father’s place to say we aren’t anointed by the Lord based on physicality, when inside me, I knew I was appointed, worthy of spirituality. Dream on.

Mainstream education brought taunts and stares – kids who didn’t know better, teachers who didn’t care. I could read but I couldn’t write, so I bought a thrift-store typewriter and clicked the keys, teaching myself to type one night. And the words that flowed were bold and grew, and I knew I had something to say to the world – even at eight years old. That’s right. Dream on.

My family fell apart, ignorance toward my condition stung at my heart, and back in those days, a step into a store meant I could get in, and they had the right to refuse me service, a hypocrisy to no win. America the beautiful, the bold and the brave; but, my wheels of steel made everyone my master, gave me little more than the rights of slave. A country founded from oppression, surviving wars and the Depression, and I still I faced daily oppression? Stigmas did follow me, and I felt this: Where was truth in equality? Dream on.

But, for me segregation didn’t stop my education, and I wouldn’t give up my mind’s elevation. Heart strings tatter, but a spirit that wouldn’t shatter, I’d just move on; different day, same song. Things went wrong, but I’d move on. Dream on.

I remember at the prom when she wouldn’t dance with me, then going home that night, questioning my sexuality – for months it went on, the depression, a repeated song. I awoke in the hospital despite the pills taken, and it registered with me that I wasn’t a soul forsaken. I was who I was and just had to be me, why drown in self-loathing when I could swim in a sea – of acceptance. That had to be me. Dream on.

It all got easier as I went, worth the sweat and the tears that were spent – but who knows. I was always told that life goes as it goes till we grow old, and the forces that once held us down soon push us up from the ground. Our weaknesses become our strength, and those who’ve wronged us, we should thank – adversity from diversity is a character that we build, and successes that are earned create lives that are willed. Dream on.

Still, think what you will, but when I travel from the Pacific Northwest to Capitol Hill, there’s ground to be gained, equality sustained, where one nation for all is exactly where we fall – short. And, until everyone – regardless of disability, gender, sexual orientation, race, or religion, of unity, not division –is seen as humanly proficient, not different or deficient, I will continue to question America, the bold, the beautiful, and the brave as it holds up discrimination and prejudice to save – yes, even in this so-called progressive age. Until there’s equality for all, as a nation we fall. But, as for me, I’m optimistic. I dream on.

Consider the Source

By Mark E. Smith

Have you ever noticed how quick others are to make negative, diminishing comments as to your value as a person, from little snipes to direct put-downs? Often those closest to us are the worst offenders, using words to painfully try to degrade us. I remember as a very young child, my father constantly implying that I would never amount to anything due to my disability, and as much as the sting of that stays with me till this day, from as young as I can recall, I somehow had the insight to know that he was among the least qualified men on Earth to assess my “value.” The reality was, he was an unemployed alcoholic, who went on to be the poster boy for deadbeat dads – not exactly someone who should have been throwing stones in his glass house. If I could have expressed it at that young age, I would have gladly said, Remind me again how that beer can in your hand qualifies you as ultimate judge of my potential? You might say that I learned to “consider the source” at a very young age as to others’ assessments of me.

Of course, my father was no exception. It’s downright alarming how quick many are to strive to diminish others’ “value,” and it’s even more alarming how readily many take it to heart, feeling lesser because of what others have said. …Don’t be silly, you’ll never accomplish that. …Why would anyone ever love someone like you? …You’ll never amount to anything… I mean, I’m keeping my examples here tame compared to how vicious some can be – words from others that sting, scar, and damage. Think about how many children have had their dreams crushed, or how many spouses have had their self-worth shattered, by so-called loved ones diminishing their value with spiteful, hurtful, abusive words. Maybe you, too, have been there?

However, here’s what’s ironic about those who strive to diminish your value: They are not just morally wrong, they’re factually wrong. Assuming you’re living an integrity-based life, no one ever has a right to assess your value as a person – not your parents, not your significant other, not your friends, no one. While none of us are perfect – we all can always grow and improve – you are intrinsically “enough,” where you deserve to be embraced, wholly, as-is. No one gets a vote as to your intrinsic value – ever. You – and your higher power, if you practice such – are the sole deciding factor toward who you are, and what you can achieve, point blank.

What’s even more telling is when we consider the source of such verbal attacks. It’s never anyone of real merit. The Dali Lama or President never call to tell us how worthless we are. Rather, it’s always a bitter, deeply-troubled person – an alcoholic parent, spiteful spouse, or teen bully – who has no right to judge anyone. We know that anyone who’s compelled to belittle others to make oneself feel better is really projecting one’s own horrendous self image onto others.

I live my life very simply. I set my value high, where I know that I bring a vast offering to the table of life. Cerebral palsy is part of who I am, but not all of who I am. Yet, if someone is to be in my life at a sincere level, he or she must truly love and accept me wholly, as-is – no exceptions. In return, I love and accept others wholly, as-is. It’s these reciprocated, unconditional relationships that elevate our lives to levels of love, trust, and safety that are greater than many have ever known.

The next time someone takes a verbal swing at your value – not accepting you wholly, as-is – consider the source and don’t give such ignorant words credit. Little people say belittling things. Know that you are a giant in comparison, where you have unlimited potential to not just rise above all, but to truly soar.

Sometimes Wheelchairs Should Just Be

By Mark E. Smith

It’s a beautiful fall, Saturday morning in Midtown Manhattan, among the few times of the year when the city slows down on tourism, after the summer and before the holidays. Theatre tickets and restaurant reservations are easy to come by, and the winter weather has yet to set in. And, my daughter and I are glad to be here, our weekend getaway.

In fact, I’m hustling to write this because wheelchairs aren’t of much concern to me this morning. I’m thankful that my power wheelchair liberates my life and will escort me around the city with ease today, as it has liberated my life every day for the past 34 years, starting when I began using one around the age of six. But, there are a million other interests on my mind this morning – namely enjoying a day in the Theatre District with my daughter. Indeed, wheelchairs are blessings – and the liberation they bring is astounding – but my use of a wheelchair certainly can’t steal the spotlight from being in Manhattan with my daughter this day – nor can my wheelchair distract me from the countless other joys in my life on a day-to-day basis.

Working in the mobility industry and delving deep in disability culture as a writer and advocate – and merely as a guy who uses a wheelchair – it always disheartens me when I see people so hyper-focused on their wheelchairs as an object that it takes a destructive toll on their lives, removing them from the many potentials around them – a mindset not based in disability, but more so based in traumatic emotions.

Interestingly, a few weeks ago at Medtrade – the mobility industry’s trade show – a salesperson asked me a fascinating question that ultimately ties into where wheelchairs, when over-emphasized, destructively fit in the lives of some: “We’re in this convention center full of fantastic technology and truly caring people, and yet some consumers who we serve seem to despise every product and all of us,” she noted. “Why is that?”

“They don’t truly hate the products or us,” I replied. “Rather, they dread what we and everything in this convention hall represents – their frustration toward disability overall.”

Unlike my realization that my wheelchair is but a liberating tool to pursue the entirety of life, for some, the fact is, disability-related products like wheelchairs aren’t about technology, but psychology, where they transcend mechanical parts and become manifestations of negative emotions. After all, there’s little tangible about disability – you can’t literally see or touch genes, cells, or nerves in everyday life – but a wheelchair is unmistakably touchable, there’s gravity to it. And, many resent the reality that a material object like a wheelchair seemingly represents: Disability.

We sometimes see a denial of disability directly linked to the literal denial of using a wheelchair. Parents of children with disabilities will sometimes put off getting their children wheelchairs past the age of when they’re ready, opting to keep them in “mainstream” strollers till the age of four or five, and sometimes even longer. For these parents, a wheelchair is so representative of disability that they can’t bring themselves to physically place their children in wheelchairs because they’re not ready to fully accept that their children have disabilities. We rationally know that a child is no more or less physically disabled whether seated in a stroller or a wheelchair (and most children could, arguably, gain greater independence by using a wheelchair instead of a stroller); yet, in the minds of some parents, the tangible nature of seeing their child in a wheelchair declares disability once-and-for-all – a declaration that they don’t wish to face.

Similarly, some adults with progressive disabilities will avoid mobility products as a way to psychologically avoid fully acknowledging disability. Despite a lower quality of life due to a lack of mobility or a risk of falls, some adults simply refuse to use a wheelchair, thinking that it defines disability, rather than realizing that their actual medical conditions define disability (and, again, the fact that they overlook is that a wheelchair would make them more mobile, not more disabled).

Then, seemingly to the contrary, but of the same troubling emotions, there are those who hyper focus on their wheelchairs, dwelling on every little nuance, day in, day out, where it consumes their thoughts. Using a wheelchair is so emotionally wrenching that their feelings are transposed onto the wheelchair – and they’re not letting any of it go. Their wheelchairs become the central focal points of their existence, where a sense of loss of control over their bodies becomes a compulsion to control their wheelchairs. Their whole lives revolve around thinking about their wheelchairs, where room for other interests and interactions diminish.

Of course, some take an unhealthy over-personalization of using a wheelchair and project it onto others. If a therapist recommends a wheelchair for a child, parents can sometimes see the therapist as an enemy. How dare you try to make my child more disabled! And, there are adults who will tell you that everyone in the mobility industry is evil. Again, it’s reflective of some taking all of their emotions surrounding disability, and projecting them upon anyone or anything associated with a wheelchair. In their eyes – subconsciously or otherwise – a wheelchair is disability, and anyone associated with it is the enemy. And, some individuals simply can’t get past such self-destructive thinking surrounding disability – that is, they need a scapegoat, and the wheelchair is there.

Unfortunately, none of these outlooks are healthy, and all are trauma-based behaviors – that is, from denial to obsessive compulsions, these are unhealthy reactions toward disability. A wheelchair should physically liberate us, but not emotionally restrict us. A wheelchair may relate to disability, but it shouldn’t represent disability. And, a wheelchair may enhance our lives, but it shouldn’t consume our lives. It’s such negative projections upon a wheelchair – which is merely an inanimate object – that can dramatically debilitate the lives of some, whether avoiding a wheelchair or obsessing over its every nuance.

The fact is, a wheelchair is ultimately a small part in the grand scheme of a healthy life. Yes, it’s a vital tool that we can’t live without, and let us feel blessed by its liberating roles. But, when a wheelchair is at its best, it’s not in the forefront of our lives, but in the background – the vehicle that gets us to the far more meaningful aspects of life like education, employment, family, friends, and community service.

Let your wheelchair quietly be in the shadows while the entirety of your life shines in the spotlight. Sometimes we all have to remind ourselves that a wheelchair is just a wheelchair, and living our lives unencumbered by it – physically, emotionally, and mentally – is where true liberation is found.

When Life Isn’t Fair

By Mark E. Smith

I had the absolute privilege of visiting a summer camp for children and teens with various forms of muscular dystrophy. It was among the most fun I’ve had, as the campers were so awesome, such spirited personalities, as children are. However, as much fun as MDA camp is for everyone involved, there’s still a looming reality: Most of the campers will pass away by their mid twenties.

There’s truly an injustice to it all, one that, for me, is impossible to explain – that is, the universal “unfairness” that within 10 years or so, many of the campers whom I met will no longer be with us, that not only will their lives have been lost, but with them, we all will have been robbed of their amazing life-long potentials. I mean, their time on this Earth is impacting – I know, they profoundly impacted me – but to think of what these amazing individuals could accomplish over sixty or seventy years – not just twenty – is limitless. Yet, we’ll never have the chance to know because of the inexplicable injustice of a life-robbing disease.

I remember leaving the camp thinking, Cash my chips in now, God, and give my lifespan to anyone of those kids – I’ve had my shot at life, and I’d gladly pass my years left on to any one of those children….

Although visiting the MDA camp was a reminder to me of the seeming inexplicable injustice in the world, the question of universal unfairness is one that I encounter almost every day – that is, why do such terrible circumstances happen to such good people? In the wheelchair world, consumers often share with me that they’ll never understand why they received their injury, illness, or disease, that they wrestle with the injustice of it all. And, I never have a direct answer. But, I do have at least one perspective that touches upon the subject of life’s “unfairness” – and the MDA campers hit home the point for me.

Of course, we know that there are direct attempts to answer why bad occurrences happen to good people. Religion has its answers that run the gamut, from it’s God’s master plan, to it’s bad karma from a previous life. And, science, too, has its direct answers, from cancer being gene mutations, to paralysis being an injury to the spinal cord. These answers, however, still leave intellectual loopholes, where we can look at examples like Dr. Wayman R. Spence, an original anti-smoking crusader, who himself ultimately died of cancer after 50 years of treating others, and it’s truly impossible to see any justice in such an uncanny circumstance – it’s haunting, really.

Still while maybe we will never be able to intellectually answer life’s injustices beyond, Life isn’t fair, we can use coping mechanisms to address them. See, we universally approach life from three perspectives: What is; what can be; and, what should be. And, by understanding the roles that each of the three perspectives play in our own lives, we can better cope with seeming injustices.

What is, is truly the givens, the realities of any situation as known in the present. It’s the, my father has cancer, my husband is an adulterer, my daughter is an alcoholic, I have multiple sclerosis.

What can be, is what we logically can do to address a situation moving forward. It’s the, my father has cancer, but treatment will extend his life; my husband is an adulterer, but I need to get a divorce and find a loyal guy; my daughter is an alcoholic, but getting her into a rehabilitation program is a wise step; I have multiple sclerosis, but medication and therapy may slow its progression.

What should be, is truly wishful thinking, not based in reality, but dwelling in questions of fairness. It’s the, my father shouldn’t have cancer; my husband shouldn’t be a cheater, my daughter shouldn’t be an alcoholic; I shouldn’t have multiple sclerosis.

What’s fascinating is that when we look at the three perspectives – what is, what can be, and what should be – only two are relevant, having any impact or meaning in our lives. The third simply leaves us empty, without the ability to do anything, trapped in despair. Can you guess which two are empowering, and which one is debilitating?

Of course, what is and what can be are very empowering – that is, we can act upon them. However, dwelling on what should be is truly debilitating because there’s nothing we can do but wish upon a seeming impossible, asking ourselves, Why?, silently screaming, It’s not fair! Nothing good comes out of stewing over what should be.

And, that’s what I ultimately took away from my visit to the MDA summer camp. As adults, we’re so caught up in the what should be’s of life – how life is unfair – that we overlook the intrinsic value of what is and what can be. For example, rather than celebrating the current life of our loved ones who have cancer, we dwell upon the unfairness of their pending passing. Rather than moving forward from bad relationships, we stew over how we were wronged. Rather than appreciating our jobs, we focus on any negatives. And, rather than accepting those around us for who they are, we want to change them. That is, we go through life lamenting – often to the point of depression – about how things should be, not recognizing what is or realistically what can be.

Yet, the kid’s attitude at the MDA summer camp was just the opposite – it was totally about what is and what can be, and it was contagious. I only saw life, love, and laughter. It was the most positive place on Earth, making Disney World seem glib. It was a true celebration of living in the moment, where no one questioned what should be, but reveled in what is and what could be. Even we adults ended up with our faces painted, coloring with the kids, and eating watermelon!

Yes, bad things happen to the best people, the weight of the worst can land on our shoulders – and none of it’s fair, justified, or explainable. Yet, we don’t live in a world of equitable should be’s; rather, we live in a world of what is and what can be. And, let us make the most of those, where our days aren’t filled with longing or self-pity, but are celebrated with appreciation and joy for what’s within our immediate presence: The beauty of what life is and can be.

Moments In Time

(Mom and me)

By Mark E. Smith

I’m having lunch in Club 33 in Disneyland – and I’m with Amy, who my friends have only known from reading about her in my first book, published in 1995, 6 years after I graduated high school.

But, now it’s 16 years later after the publishing of that book – and 22 years since I last saw Amy – and in an uncanny twist not lost on me, we’re in “The Most Magical Place on Earth,” eating lunch at the hidden, exclusive Club 33, where a friend of mine has been kind enough to get me all-but-impossible reservations, jumping a 14-year waiting list, per Disney hype.

I struggle more than ever with the validity of my first book, and I’m glad it’s long out of print. Its title, Growing Up With Cerebral Palsy, was way too literal and boring for me as my childhood autobiography, but the publisher insisted that it would sell well to libraries and schools – and he was right. And, I dislike its simplistic, diary-type writing style – yet, people still note it as candid and enduring.

However, what troubles me most about the book is the emotional place I was in while writing it, where I was still struggling to come to terms with my mother’s profound alcoholism.

What’s haunted me is that while all other “characters” in the book are treated as they truly were, from my alcoholic father, to Amy, my high school crush, not a word was mentioned of my mother’s alcoholism – I painted her as a one-dimensional saint. The progression of her alcoholism was so painful to me at the writing of the book in my early 20s that I went from writing of her as a heroic figure raising a child with cerebral palsy to not being able to write about her at all. If you read the book cover-to-cover, my mother simply disappears by the end, an unexplained absence. It’s a book that’s both strikingly candid and full of absolute denial – and I’ve fought with that truth since the day it was published.

And, here I am, 16 years later, having lunch with Amy, my high school crush from the book, at Club 33 – and my mom is dying of cancer, her apartment being cleaned out and her cremation arrangements made. And, all of this is weighing on me. Amy thinks I’m tired from our being up all night talking, and I am, but I’m also struggling to both live in this amazing moment with Amy who’s just here for me without conditions, while simultaneously struggling with the fact that my mom is 3,000 miles away dying. It’s all just emotionally whirling around me like the constant visuals of Disney, itself, never knowing where to look because it’s all larger than me – overwhelming.

I haven’t had a real relationship with my mom in about 15 years. The initial royalty check from my first book went toward my mom’s stint in rehab where she chugged a 5th of vodka between there and coming to see me upon her “successful completion.” I’m sure now that my naive – but well-wished – attempt at her sobriety (and the many others), was just me trying to make things right – my mom’s health, the sentiments of the book, the sober relationship with my mom that I so desperately wanted. But, I never did make it right, I never found a way to sober-up my mom, not for my graduations, wedding, or the birth of my daughter. In my rational mind, I know now that only my mom could make things right through pursuing sobriety – but the loyal son in me still feels that I let her down in some way, that if I could do so much for myself and others, why’d I forever fail at helping my own mom?

And, what cuts deepest is that my mom didn’t fail me – she saved me. She was a troubled 20-year-old, with a son born with cerebral palsy, and when the doctors told her that there was no hope, that she’d best leave me to die, she took me home and somehow pulled it together to keep me alive. Yes, by the time I was 7 or 8, her addiction had the best of her – and, as a father, myself, I can’t fathom how she put alcohol before her children. But, in the most vital days of my early life, she was there for me – the only one. That can’t be overlooked or underrated in any narrative.

I previously saw my mother just a few days earlier at my sister’s wedding. She was a frail skeleton of herself – all treatments done, just waiting to die. My sister went through great lengths to make sure Mom had a custom-tailored dress, her hair and makeup done, looking like a woman of eloquence, stunning. And, yes, she was drinking. And, for once it was OK – it was all OK. I can no longer judge her; I can only love her for who she is, unconditionally, as she did for me over 40 years ago.

“I’ve never seen you look more beautiful,” I told Mom at the wedding, just living in the moment, all of our past erased by her just being there, my seeing her just as her, unconditionally.

After our lunch at Club 33, Amy and I caught up with the kids, and rode the rides with them at Disney, all in a magical universe. Later that night, Amy and I simply stayed up talking, our kids tucked asleep, where for a moment in time – two imperfect people trying to make sense of such present changes in our lives – we were just there in completeness for each other, ourselves, unconditionally.

The next morning, I awoke to my daughter singing as she packed. Amy was gone, having caught an early-morning flight. Her perfume was still in the air, a reminder of what had been for a moment in time. I had to put on a good face for my daughter, and while it took all my emotional might, I managed to get up and going. I had to go back to a reality where my mother was dying, where I was essentially a single father in a failed marriage, where I didn’t know if I’d see Amy again in a month, 22 years, or ever. But, I had to go back home, home to address it all.

I put on my Ray Ban sunglasses, heavy and dark, swung open the hotel room door, and headed out into the world – one that’s not perfect or fair or even understandable at times. But, at least I was re-entering a world where I was a more feeling man.

Upon returning home, my schedule for the work week was busy. I had a Medtrade planning committee project due and a conference call; I had a radio interview to do; I had a mid-week overnight trip to New York City involving a speaking engagement; I had all of my normal office duties and WheelchairJunkie.com responsibilities to tend to; my wife was supposed to be moving out of the house per our split-up; and, I had my daughter to care for. But, I could easily handle it all – just get it done, task by task, as always.

But, my mom was still dying. And, as much as I thought all was made amends just two weeks earlier at my sister’s wedding, I had to speak with her one more time – and on the deepest level. What was said and recognized at the wedding wasn’t enough. There was more to be said, to be healed. And, so in the middle of a crazy work day, I grabbed my cell phone and called my sister.

“I need to see Mom and talk to her tonight,” I said. “It has to be tonight.”

“She’s not doing well at all,” my sister said. “We can try to get you over there tonight, but she may not be totally with it. The hospice says she’s not doing good at all.”

“I don’t care,” I said. “I just need to see her, and tell her something.”

The day past, and by evening, my sister called, noting that Mom wasn’t doing well still, that in the next morning, she’d be moving into my sister’s for her final days, with home hospice care – the way my sister wanted it. But, inexplicably to all of us, my mother wanted to speak with me, too, and wanted to join us for a family meal, despite her inability to eat.

We made late reservations at my favorite restaurant, where I’m known, where I’ve frequented every week for quite some time, where I’m comfortable having the deepest conversations over dinner and drinks with friends, where birthdays have been celebrated, friendships strengthened, and good-byes to leaving colleagues have been said. If I was to speak with Mom, it was a comfortable place to do it.

But, as I drove to meet my sister and mom at the restaurant, I was more scared about what I was going to say than ever in my life. I’ve met with the President of the United States; I’ve done countless interviews; and, I’ve spoken in front of countless groups. But, this was different, rattling to my core. How do you look at your dying mother after so much tension and pain between you, and definitively express your ultimate gratitude and love? How can that ever be put into words?

Sitting at the table, bread and drinks served, I just followed my heart. “Mom, I wanted to talk to you not because you’re dying, but because you’re living,” I said, putting my arm around her. “Despite all that’s gone on, you were there for me at the toughest point in my life, when no one thought I would live, and you pulled me through – and I can’t express my love and gratitude enough for what you did for me.”

My mother saw my tears and stopped me there. And, in a moment I never expected, with a sobriety I hadn’t recalled in her since I was very young, she explained her side of it all – her regrets, her shortcomings, her absolute remorse toward the life she led and what she put us through. And, in the greatest act of kindness I’ve ever witnessed, she – too frail to walk by herself, eat, or talk above a slight whisper – made every effort with her words to apologize to me, my sister, and my daughter, one-by-one. A woman who long lived among the most selfish lives – which is what addicts do – used among the last moments of her life to offer among the most unselfish acts, all on her own accord, apologizing to her children, trying to make things right while she still could.

As tears flooded the table, our salads were served, and my mother asked, “Marko, do you need a spoon for that?”

And, for a split second I chuckled – after all, who eats salad with a spoon? But, then I realized that my mother literally went back to being my mother at that instant, where around the age of 5, when I was learning to feed myself, I could only manipulate a spoon, not a fork. And, although I’ve eaten with forks for decades now, my mother had taken us both back to a specific moment in time, before her world disappeared into a bottle of vodka, when she was just my mother, unconditionally.

“I’ve got this covered, Mom,” I said, picking up my fork.

At this writing, my mother is passing. For me, our life is like bookends: Yes, there was a lot of complexity in our lives in-between my birth and her death; but, on each end she gave my the greatest gifts of all – life at the beginning and healing at the end.

Telling Our Daughters

By Mark E. Smith

As the father of a 14-year-old, I often find myself in an odd predicament. Whenever I show someone her picture, or she’s with me at an event, people graciously note how beautiful she is. And, while I sincerely appreciate such comments, thanking them, I never really say what I’m thinking: You really have no idea how beautiful she is.

See, as with all 14-year-old girls, my daughter’s beauty isn’t based on her exterior facade that conforms to a symmetrical face, slim stature, and flowing hair that pop-culture idolizes, but a beauty that’s within – that which is inherent within all young ladies. My daughter exhibits remarkable loyalty to her friends, where her sense of popularity at school isn’t about who wears what, or who knows whom, but that everyone is her friend, where she reaches out to others based on the quality of their characters, not so-called “status.” And, she exhibits a remarkable sense of empathy, where if one of her friend’s family is going through personal struggles – divorce, job loss, abuse – she finds ways that she can help comfort that friend in times of need.

My job, of course, as her father is not just to support my daughter, but to have very direct conversations with her about how proud I am of her, that she’s inherently beautiful, that I want to support her growth into a strong, independent, emotionally healthy young woman. Researchers have proven that a woman’s most formative years toward her lifelong self-esteem and identity are in her teens – and it’s a make-or-break time for fathers who will shape, for better or for worse, their daughters’ identities.

Yet, our obligation toward building life-inspiring self-esteem in young ladies in their teens can’t stop with our own daughters, but must be extended to others we meet. The fact is, when women enter their 20s with low self-esteem, it’s often too late for any of us to have an impact. We know that low self-esteem established in the teen years often manifests itself in a woman’s adult life through destructive relationships with men – from as subtle as being controlled and having little voice in a relationship, to as blatant as abuse – and through alarming forms of “self-medication” ranging from drugs and alcohol to promiscuity. The fact is, when women need outside stimuli to feel validated, as opposed to simply knowing their intrinsic strength and beauty from within, so much of their potential is lost, where no matter how much we strive to help such an adult woman recognize her inherent beauty, the emotional scars are usually so thick that it’s among life’s toughest hurdles to overcome.

It’s for these reasons why we should all reach out to young ladies in their formative teen years, where they’re still open to seeing their intrinsic beauty, where as mothers and fathers, aunts and uncles, teachers and coaches, we should never pass on showing a teen her intrinsic beauty while we still have the opportunity to truly make a difference with strikingly simple but vital words of encouragement.

As a father himself, Rene Szalay of Ki Mobility, recently presented me with a remarkable opportunity to hopefully make a difference in a young lady’s life. I first met Rene 22 years ago at an adaptive sports camp in Chico, California. I graduated high school a few weeks before the camp, so it was my first real foray into the “wheelchair world.” Rene, however, was four years older than me, and a literal star in the wheelchair tennis world. At the camp, I witnessed how the teens looked up to Rene, and I realized the impact that we can each have on the young people around us – it was a powerful lesson in inspiration. For the following 22 years, I never crossed paths with Rene again; yet, his presence at that camp stuck with me.

Recently, while working an Abilities Expo, I joined fellow mobility industry colleagues after hours – everyone usually hangs out together regardless of our companies and roles – and Rene was among this particular group, gracious enough to note that he is a bit of a fan of my work. As I’m typically wound a bit over-the-top, I ended up horsing around with the group, and didn’t get a chance to see if Rene remembered Chico, 22 years earlier? However, the following day, true to Rene’s character that I recalled, he showed up at my booth with a 14-year-old young lady and her mother, noting that they really should speak with me. I had no idea what it was about, but I know that guys like Rene and I put people before products, and if he left his booth to bring the daughter and mother to my booth, it probably wasn’t product-related.

The young lady had cerebral palsy, and used a manual wheelchair. In typical 40-year-old-dad fashion, I asked her what her favorite subjects in school were and such – the cliché questions we use to build some rapport. However, eventually what came out was that she was struggling socially in school, that she didn’t feel like she fit in as the only one with a disability among her classmates. I told her a bit about my being the lone student with a disability when I was her age, and how my own daughter and her peers likewise struggle with questions of identity, that other young ladies feel just as insecure, but some just hide it better than others (adults are no exception at that, either!). Yet, what I mostly discussed with her was who she really was, loving Shakespeare and classical music – amazing for a 14-year-old. And, as I told her, I was in awe of her intellect and wisdom, that beyond her adorable appearance – complete with pink highlighted bangs on her blond hair – her inherent beauty shined, that there was no doubt that she would go on to do great things. “Concentrate on developing who you truly are, avoiding the no-win game of trying to fit a made-up social mold,” I shared. “Being exactly like everyone else in life gets us no where – we just blend into a crowd, or live to other people’s bland standards. But, being yourself, where your unique gifts and beauty shines, is where you thrive in the world. You are beautiful, just as everyone is in their unique ways, and your intellect and wisdom are going to propel you to an amazing, impacting life. …It only gets better from here.”

I’m known for pulling people aside and having extremely candid conversations, where I’m not bashful about laying the cards on the table if I see someone struggling in emotional pain or going down destructive paths, where I’ll share that there are healthy ways to get one’s life back on track. Again, though, with adults, such talks usually have little effect beyond the moment because one person’s caring can’t overcome the other person’s lifetime of pain – serious work must be done, and few adults have the capacity, tools, and will to shift their lives (and when it is done to a meaningful level – ridding dysfunctional behaviors – formal counseling is typically involved).

However, we know that the door is still wide open on teenagers, where adult mentors can show a 14-year-old young lady her inherent beauty and it truly registers. If you have a young lady in your life, don’t pass on those moments that emphasize her inherent beauty, where you help polish the strengths that she’ll use to live a healthy, happy, impacting life.