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.

The Glory of Vulnerability

By Mark E. Smith

I wasn’t the least bit uncomfortable about it, nor was she. See, there I was, all dressed up to give a talk in front of a corporate group, but I was presented with a pre-talk lunch served by our gracious host, consisting of sushi rolls. I knew from the very sight of the rice-covered sushi rolls that, due to my poor coordination, there was no way that I could get them from the table to my mouth without rice and who knows what else ending up on my neatly-pressed pants….

So, I had two choices: One, I could simply not eat; or, two, I could have the courage to ask for help.

With little hesitation, I asked for help because it’s just as important to me to acknowledge my vulnerabilities as it is my strengths – that is, I want those around me to know my entirety, not just selected parts. I wouldn’t be true to myself or those around me if I only showed my strengths, and didn’t admit any limitations of my disability, my vulnerabilities.

Fortunately, my asking for help was easy in that instance based on the fact that a dear colleague of mine was with me, who’s traveled with me quite a bit, so asking her for a helping hand was natural. What’s interesting, though, is that getting to that comfort level – where I could turn to my colleague and say, “Would you mind feeding me my sushi, so I don’t get it on my clothes?” – took time and candor to evolve. On her part, my colleague’s sincere, genuine nature has been touching, and she’s proved truly intuitive in getting to know me as a person, disability and beyond – all of which speaks to the exceptional qualities of her character. However, I’ve likewise have had the openness not to hide any of my vulnerabilities – the realities of my disability – from her. She knows that I drink through a straw, I squirm in airplane seats to shift weight off of my rear, and can be a bit messy when I eat, and on and on. I am who I am, and I trust that my comfort in living with my vulnerabilities – where I don’t display only the so-called best of me, but the true me, flaws, spasms, and all! – has likewise made her more comfortable. None of us are perfect; we all need help at some point in our lives. And, allowing others to see our vulnerabilities is a positive trait, one that unifies, where asking for help and helping others is an inspiring exchange. We don’t get through life alone, and sharing our vulnerabilities is a key that we all need in living a life that allows us to truly connect with others in the most genuine ways.

Interestingly, researchers scoured the globe for the one aspect that most connects us with others – that is, what forms the deepest, most meaningful relationships on all levels? – and allowing ourselves to express our vulnerabilities topped the list. Vulnerabilities, it proves, are only weaknesses when we won’t admit them. However, when we admit our vulnerabilities, they become strengths because we’re showing ourselves to others in the most genuine ways – and that forms the most open connections with others, the sincerest relationships.

Of course, it’s easy to know why many people hide their vulnerabilities: They’re scared that others won’t accept them in their entirety, that others will judge them. But, this rarely proves the case. The basis of sharing vulnerabilities is formed within honesty and results in our fully opening ourselves up to others – and those are the foundations of healthy relationships. When we live freely with our vulnerabilities, we allow others to accept us wholly, and we accept others wholly, as well (if I expect you to accept my vulnerabilities, I likewise must accept yours, and we’re two perfectly imperfect people connecting on the sincerest level). But, here’s what’s really important: When we express vulnerabilities with others, we’re acknowledging our vulnerabilities within ourselves, and it’s the self-acknowledgment of our vulnerabilities – not denial! – that allows us to live healthier lives.

Addiction and recovery proves an enlightening study in how vulnerability can kill us or liberate us – sometimes literally – all based on whether we admit vulnerabilities. For example, an addict in the clinches of use, will never admit vulnerabilities. An addict won’t admit to causation, won’t express genuine feelings, will try to justify even the worst decisions, and will lie about everything under the sun, including lying to his or herself. That is, addicts run and hide from vulnerabilities via substance abuse – and, at best, it disconnects them from meaningful relationships, and, at worst, it literally kills them.

However, recovering addicts do just the opposite – they admit and address vulnerabilities. Think about the first words spoken by everyone at an Alcoholics Anonymous meeting: I’m Joe, and I’m an alcoholic. Admitting the vulnerability of addiction – that is, being honest and candid – liberates and connects. There’s remarkable empowerment in it. And, when getting into deep models of recovery, acknowledging the vulnerabilities that lead to the addiction – past traumas and such – is yet another way of profound recovery. That is, the only way addicts stop using is by acknowledging and addressing the underlying vulnerabilities that cause the addictive behavior in the first place.

In our personal lives, hiding behind our vulnerabilities – or, denying them through self-justification – is extremely dangerous, defeating so many potentials in our life: I’ve been hurt in a past relationship, so I’m not going to trust anyone again…. I don’t want to be seen as weak, so I’m not going to apologize…. I’m not going to show all of me because others will judge me…. Really, what such a closed emotional state says is, Overall, I’m going to self-sabotage meaningful relationships because I’m so scared to reveal my vulnerabilities – my complete self – to others.

It is astounding how painful and self-defeating it can be in not allowing ourselves to be vulnerable. At the very least, most of us can relate with the inner-conflict that occurs when we want to reach out to someone, but don’t out of the fear of feeling vulnerable – maybe it’s asking someone on a date, maybe it’s calling an estranged family member or loved-one to try to patch things up, or maybe it’s sharing one’s true feelings with a good friend. I’ve struggled with all of these – and continue to at times! – but what I’ve learned is that while there’s always the risk of the other person not being receptive, there’s also the more likely possibility that the other person will be receptive. And, the real reward in this process of overcoming our fears of vulnerability is that we’ve at least had the integrity to act on our true feelings, with sincere intent, living openly in every way – and that’s liberating, regardless of the final outcome.

The fact is, there’s a universal bond in the truth that none of us are perfect, that we all have vulnerabilities – and some are scary to admit to ourselves and others. Yet, when we live freely with our vulnerabilities, acknowledged by ourselves and shared with those close to us, we not only allow others to know us completely, but we’re far more open and accepting of others – and that builds connections of lasting trust and meaning. I have vulnerabilities, you have vulnerabilities, and it’s all OK. Let us live fully as perfectly imperfect people – with our glorious vulnerabilities exposed! – and our self-acceptance and relationships will flourish.

Just the Two of Us

Mark E. Smith

In an uncanny foreshadow, over 20 years ago, Jim Martinson – amputee, paralympic wheelchair racer, and owner of wheelchair manufacturer, Magic In Motion (purchased by Sunrise Medical) – noted about his being a single father at the time, “I want my kids to just be kids. Let me worry about the rest.”

Jim’s statement oddly stayed with me all of these years, my never fathoming that his words of wisdom would become so poignant in my own life, that I’d be in his situation decades later.

So, what is it like to be a full-time, single father, who happens to have a disability? As the full-time, single father of a 14-year-old, I can tell you it’s the ultimate joy most of the time, and scary as hell some of the time – with a lot of complexity in-between. But, all is worth it by far, with my daughter the center of my life, where I wouldn’t change any of the difficulties I’ve endured in getting to this point. Indeed, even the most challenging of times can bring miracles into our lives, and my daughter has proved one of them.

Our journey together began at 7:39pm on March 3, 1997, just a day after my own birthday. In the delivery room, I was the first to hold my daughter, and in the most profound moment of my life, she made immediate eye contact with me – and I knew in that instance that we would be forever inseparable. Yet, I wouldn’t know to what phenomenal extent for years to come.

The first three years of my daughter’s life were remarkable. I worked hard to build a life for our family, my marriage was great, and my daughter was the best toddler ever – it was all of my dreams coming true. On my daughter’s part, she seemed to intuitively understand my disability, where as a baby, she lay perfectly still for me to change her diapers, and even at the age of two, she would stick with me – either on my lap, or waddling beside my wheelchair – in even the most distracting of circumstances without a fuss. She just always seemed to understand and respect me, including my limitations, in a way that was dramatically different than I’ve seen in other parent-child relationships.

As a result, from her birth through her toddler years, my daughter and I developed a dynamic-duo effect, where we became quite the team. From that foundation, and with my marriage disintegrating over the course of many years, I assumed more and more parental responsibilities as my daughter grew, to where although all of us where still living under one roof, I was increasingly the primary parent, a role that my friends and family picked up on before I did. Even when in an unhealthy relationship, one is still in a relationship, and I suppose that because there was still a “mom” in the physical home, I didn’t realize that I was taking on more and more of a single-parenting role. I look back now and think, Wow, there were years of evolution in that process that I was oblivious to! But, even in a bad relationship, we’re not really “alone,” and I think my trying to balance my career with raising my daughter and dealing with an unhealthy relationship didn’t allow me to see the larger dynamic that was occurring: I was on track to being a truly single parent.

And, that day eventually came, in its own time as life changes go. I’d like to tell you such change has been the best thing ever, but no ended marriage is good, nor is being a single parent what’s wished. It all may be for the best given the alternatives, but it’s never an ideal. Yet, my daughter’s and my approach has been just that – let us together take a less-than-ideal situation and make it for the best. After all, that’s the only way one can succeed in trying times and move forward in healthy directions.

Toward the emotional, those of us close to my daughter haven’t seen her more content and at peace. With just her and me living together, there’s no stress in the home, just positivity, love, and support, where she has an emotionally safe place to breathe. And, it’s proved wonderful. She has amazing friends, and her relationships with strong, healthy women like my sister have been evolving into fantastic role models. Of course, the ideal would be for my daughter to have a strong, healthy mother, but that can’t be at this juncture – life isn’t fair or just – so let me, as her father, at least be aware of the importance of having only healthy female role models in her life.

My daughter and I have had to set clear boundaries on whom does what around the house. Going back to Jim Martinson’s point, kids do need to be kids – and that’s been difficult for my daughter to practice at times. The fact is, she does see me working like a maniac, in every way, and she wants to jump in and help – a testimonial to her character. But, she needs to concentrate on school, drama, band, and friends – that is, on being a teenager. Indeed, she has her chores, but I really need to be Dad, doing as much around the house as possible, even if some tasks are easier for her than for me.

Of course, my daughter isn’t perfect – and I even find great joy in that, where she’s definitely a teenager. I loved all summer when I was busting my butt from 5:00am till 11:00pm, and I’d race home at lunch to check on my daughter, only to wake her up, finding her not yet out of bed! Or, I can’t count how many times per night I have to remind her to take the dogs out, where she’s distracted by texting, Facebook, and chatting with friends. Or, when she’s oblivious to scenes like our English bulldog prancing around with a full roll of toilet paper in her mouth, and I note, “It looks like it snowed in the living room – how did you walk by that dog ten times, and not see her shredding toilet paper?” And, it’s inexplicable to me how her room is such a mess! (They tell me it’s a teenage girl thing.)

And, I’m not perfect, by any stretch. My role as father is the one that’s the most joyous and rewarding to me, where I would go to the ends of the Earth for my daughter. And, while I think I’m doing a pretty good job, it’s still scary as hell at times. As forgiving as kids are, there truly aren’t any do-overs in raising them – parenting isn’t a trial run – so getting everything right is a weighty task, especially as a single parent. For me, there’s constant listening to my daughter – and I mean truly listening – and trying to determine how I can best meet her emotional and mental needs at vital moments. Sometimes I have answers, and sometimes I don’t – and a lot of times I just follow her lead, supporting her in her processes. What I’ve learned is that, as parents, delivering the right answer isn’t always required, but simply supporting our children so that they can find the right answers for themselves in the healthiest ways is often our role. Let me guide, but not stifle.

In my personal life, there’s an overall level of “sobriety,” where my sense of accountability and responsibility is greater than it’s ever been. We know that single parents are statistically more likely to have depression, absenteeism at work, and indulge in substance abuse – but I’ll have none of that. To the contrary, I wish to do right by everyone, especially my daughter and my career, so my tact has been to step-up my game, not let it slide. Sure, I feel overwhelmed and alone at times – there’s an insane amount to accomplish in each day, and I don’t have an intimate partner to turn to for support – but those aren’t excuses to have a drink or crawl into bed and hide; rather, they’re reasons to push myself even harder, staying up as late as it takes to try to get it all done, moving through it all with healthy emotional acknowledgment and tenacity. Twenty years from now, I want my daughter to look back upon these times and say, Not only did my dad work through it all, he actually picked up the ball and ran with it!

In all, we are a dynamic duo, moving through life very well, just the two of us. It’s not always easy or perfect, but we’re striving to make the most of it – and there’s a lot of joy and laughter in our hearts and home these days. Naturally, my daughter has asked me if I foresee “us” ever having a long-term relationship with a woman, possibly step siblings in the mix?

“I don’t see why not,” I told her. “It would have to be a remarkable woman to take on us; but, as we’ve proven, we have a lot of unconditional love to give in return. For now, though, it’s just you and me, kiddo – and that’s pretty special.”

Alioto’s By The Bay

By Mark E. Smith

I just made my way back from the City by the Bay, San Francisco, where my whole family was born, where I went to college, where my daughter was born. And, my daughter was with me, 14 years old now, and I wanted her to see where it all began, especially following my mother’s recent passing. One might conclude that it was like going home; but, it wasn’t. Everything’s different now – Pennsylvania’s home, I’m a single father, my only roots left in the city are the train tracks upon which I used to ride to college.

But, one night at Alioto’s, a well-known restaurant on the water front, I ran into a couple, the only one’s at the bar – and they were clearly in love, sneaking kisses, rubbing noses. My friend and I were bold enough to ask their story, what brought them together? We learned she was 50, and he, 60. She was slender, blonde, professional – a business woman, I presumed. He, well, reminded us of Shrek – big belly and ears, exaggerated features. And, man, they were in love.

The couple told us of how they met at a conference, and she blew him off; but, then they met again, by chance, at a bar, and they’ve been together ever since. In love.

I asked what advice he had for the rest of us – their being so lucky in love – and he laid it out. “Look, life isn’t a trial run,” he said. “When you find something amazing like this, don’t hesitate, don’t let a person pass without loving to the fullest. There’s no time for fear or regrets.”

Life isn’t a trial run. It’s so simple but yet so many of us miss that part. In life, love, disability, whatever – grab on to what’s in front of you like there’s no tomorrow because there may not be a second chance. And, they – the couple at the bar – were holding on to each other, no trial run for them.

The Best Kinds of Crazy

By Mark E. Smith

One of my college buddies was the private pilot on comedian, Howie Mandel’s, national comedy tours in the early 1990s. My buddy’s observation was that Mandel was genuinely crazy, that he never saw Mandel waiver from his on-stage persona, that on the jet, Mandel would simply waffle between being hysterically funny and clinically irrational. In fact, Mandel billed himself as “a wild and crazy borderline psychotic.”

Of course, we now know that Mandel publicly discusses one of his diagnosed mental illnesses, mysophobia, an irrational fear of germs. Yet, based on my buddy’s stories and Mandel’s over-the-top persona, it’s reasonable to wonder if Mandel has other conditions, as well?

Interestingly, the psychology community has been studying a link between mental illness and very successful people for two decades, and their findings are fascinating. “Hypomania” is a persistent mood that causes an exaggeration of thoughts that’s most often linked to bipolar disorder, where one can be energized, euphoric, overflowing with ideas, extra social, and a risk-taker. These traits may not only be seen in those suffering profound mental illness, but are also seen in extraordinarily successful people. After all, from show business to entrepreneurial business, being energized, euphoric, overflowing with ideas, extra social, and a risk-taker are all traits that allow one to succeed where others would fail. Therefore, there is a debate in the psychology community that certain kinds of diagnosed mental illness may not be “crazy” at all, but actually an evolutionary advantage.

I’ve witnessed this similar phenomena in physical disability terms, where physical disability isn’t debilitating for some, but actually elevating, where their lives aren’t restricted by it, but empowered.

What’s extraordinary about physical disability is that if we’re to succeed, it requires us to more intently focus on abilities, where our lives aren’t about what we can’t do, but what we can do. The average person without disability goes through life with a fairly fixed outlook toward what’s possible, rarely questioning it, rarely recognizing the chances that present choices.

However, when it comes to physical disability, we’re forced to question at points in our lives, Can I do that? – and, what’s remarkable is that the question most often leads to, How do I do it? which leads to accomplishing what was once thought impossible. So, this progression of constantly questioning what’s possible leads to never-ending expansions of our lives, where the possibilities eventually become endless, where we forget about the initial question of, Can I do it?, and begin only asking, How do I do it? And, it’s at that point that we see nothing but potentials. Put simply, while other people stop at what’s practical or seemingly rational, we intrinsically push ours live much further, toward what’s truly achievable on a scale that others don’t fully grasp. In ways, we may seem crazy.

And, because we can live on such a larger scale, where …well …anything seems possible, it can perplex those without disabilities who live strikingly limited lives. When someone questions how you do something, or sees your goals as unrealistic, it’s not reflective of you as one with a disability – again, you think and live on a larger scale than most! – but it merely reflects the closed mindsets of those who haven’t had the opportunity to become so visionary.

Indeed, physical disability intrinsically opens us to possibilities, proving not a limiting factor in our lives, but truly an unlimited factor, where what some inaccurately define as debilitating is ultimately liberating. And, surely there’s enormous value, reward, and blessing to living in a counter-intuitive realm, where crazy can prove a higher level of sanity, and physical disability can prove a higher level of ability.

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.

I Refuse….

By Mark E. Smith

I refuse to be that guy, the one in the wheelchair, who strangers see rolling from here to there – crumpled-up and bound. No, I’m flying by, with bulging biceps and a tattoo that say, You can’t define me, so F- you and F- him, too.

I refused to be pigeonholed, stereotyped, or discriminated against – because, while I can’t kick-in doors with my legs, I can obliterate them with my intellect, where I will outwit, out-charm, and alarm with an I.Q. that will rock you like The Who trashing a stage.

I refuse to be dismissed – swinging palsied fists when I get pissed – and when I say I’m going to do it, you better step back, stand away, and make a path because I will not stop till it’s done, son. The ticktock of the clock tells me to do it better, faster, more accomplished, like I’m a man on fire trying to outrun the flames, where my disability is empowerment, not an object of shame.

I refuse to be undesired – my game is my attire – where I smile while chugging a double of Southern Comfort at a bar, with a swagger that women must admire – my distinctions aren’t distress but a cut above the rest. Man, I love her in that low-cut, red dress.

I refuse to sing the blues or follow the rules that say disability is tragic. In my mind, it’s a blessing of magic, where I’m different as you can see, and I refuse to be anyone but me – and I dare… you heard me… I dare to disagree.

Yeah, World, as you may or may not see… damn… it’s good to be me, no matter what you think of my dis-a-bility.