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.

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.

The No-Excuses Generation

By Mark E. Smith

At some point – maybe 15 or 20 years ago – the meaning of disabled became blurred to me as I began recognizing the seemingly unlimited potentials in my life. And, in more recent years, the meaning has become all but moot to me, merely definitions in medical books, as I’ve widely witnessed the truly unlimited potential in others’ lives, those who have achieved enormous success in every facet, regardless of disability.

Sure, if I put myself in the shoes of someone who doesn’t know anyone with a “severe disability,” I understand that his or her perception of disability – or, lack thereof – is pretty grim, with stereotypes of our living limited lives in countless ways, full of dependencies on others, from our families to the government.

And, while these stereotypes may hold true for some with disabilities based on any number of circumstances, there’s a fascinating segment of individuals with “severe disabilities” where limitations and dependencies aren’t the case at all – that is, where disability isn’t disability, where beyond a medical diagnosis, the scorecard of one’s life simply transcends what one might define as disabled, entering the realm of even exceeding the mainstream’s definitions of success.

While many credit the ADA in 1990 as a social door-opener for those with disabilities, it was truly 1970s legislation and that era’s independent living movement in the U.S. that created a generation – born between 1965 and 1975 with “severe disabilities” – who came into a society of every-increasing opportunities, and were encouraged by the spirit of the 1980s and 1990s to fully use every resource they could access. Therefore, we’re now seeing many between the ages of 35 and 45 – born with “severe disabilities” – living such successful lives that it truly questions the common wisdom of what it means to be “disabled.” When we look at the demographics of this generation (a notably small group compared to the overall disability population), it’s statistically distinguished from younger and older generations of those with disabilities based on education level, employment success, wealth-building, physical independence, social status, community involvement, and committed relationships. Indeed, you might say there’s a new generation of young, upwardly-mobile professionals (yuppies) – and they have disabilities.

An example is a family I know who’s truly living the American dream – custom home, pool, luxury cars, children attending a private school, vacation home, easily pulling in a 6-figure income. Oh, and the husband has very severe cerebral palsy. Because of the sensitivity of his position, I can’t tell you his job, but he’s high-up in a certain branch of the government. I recently jokingly asked his wife what she saw in a schmuck like him, and to my surprise, she gave me a candid answer: “I wanted a perfect 10. All my friends were willing to settle; but, I knew I wanted it all,” she told me. “He had to be smart, worldly, a great listener, respected by all, a hard-worker, a great father, and someone who was secure enough to support my dreams, too. And, I found it all in him, my perfect 10.”

Her ability to look at the complete picture of her husband, not his medical diagnosis, is such a profound insight – and it’s the same insight that’s defining this generation that’s arguably transcending “disability.” Put simply, this generation of those with disabilities isn’t dwelling on “disability,” but looking at the whole of life, where limitations are replaced by abilities, where dependency is replaced by independence. And, the results are astounding, where many with severe disabilities haven’t just beat all of the grim statistics of those with disabilities living in America – as in lower rates of education and higher rates of unemployment and poverty – but actually exceed the mainstream when it comes to education, income, and social mobility.

Interestingly, beyond a visibility to friends on social networks like Facebook, this generation generally avoids the limelight, not partaking in inspirational stories on television or boasting of their accomplishments in public venues. Instead, there’s a quiet humility to their successes, where they are the families next door. They demonstrate that they’re not out to prove anything to anyone, but that they’re simply living their best because it’s the right way to live, regardless of disability.

The question, however, remains: How has this generation reached the higher rungs of status and economics with inherently severe disabilities?

Again, the answer includes a combination of timing and mindset. The 1970s cracked the door of opportunity for those with disabilities, and this generation burst it wide open, seizing every opportunity in sight. Disability wasn’t seen as an obstacle, but just a trait, where all other abilities, talents, and opportunities superseded it. As one of my buddies put it, ”I wasn’t worried in the least about my spina bifida in college – I was focused on building a career.”

And, it’s a mindset that we all can learn from: Disability doesn’t have to be a defining state or ultimately limiting condition, but, in many ways, just a label – a label we can choose not to represent who we are. That is, we can have a disability, but not be “disabled” by it. As another friend of mine put it, “Why would I choose to be disabled when, with some effort, I can be educated, employed, wealthy, and in love – and then just have disability as a sidebar to it all?”

When Disability Becomes Humility

By Mark E. Smith

In Buddhism, humility is associated with being liberated from any suffering or anguish in life. In Christianity, humility is defined as recognizing one’s own defects, and holding a humble opinion of oneself. And, in Islam, humility translates to surrender.

Indeed, virtually all of the world’s religions feature humility as an ultimate goal of mankind, and its essence is best defined by Chan (Zen) Master Li Yuansong: “Enlightenment can come only after humility – the wisdom of realizing one’s own ignorance, insignificance, and lowliness, without which one cannot see the truth.”

Not unlike world religion, disability also contains humility as an ultimate form of being, where we recognize our limitations not with resentment, but with gratitude. And, it’s that gratitude – our humility – that allows us to have grounded perspectives in life regarding what’s truly important, where life can prove to be more about our connections with others, and less about status or materialism or physicality.

At the core of humility is humbleness, and few plights in life are more humbling than living with a severe disability. While those with disabilities are not precluded from achieving the trappings of the ego – recognition, success, wealth, and so on – disability is remarkably grounding for many, far canceling out any pretentiousness in most cases. For example, one may be very blessed with a well-paying career and success, but that doesn’t alter the reality that having to rely on others for physical care is a universally humbling experience.

However, the humbling realities of disability don’t have to be troubling as some express, but can actually be liberating, increasing our capacity to connect with others, our humility. Again, rooted within humility is the wisdom that none of us are of ultimate strength or infallibility, but that we all have weaknesses and needs. Put simply, disability, by nature, allows us to inescapably see our weaknesses – which is actually a strength – giving us the humility to respect the plights of others beyond our own challenges.

I was recently working the Abilities Expo in downtown Los Angeles, and had a wonderful walk each morning – about a mile and a half – from my hotel to the convention center. The weather was beautiful, so it was a refreshing start to my long days by racing my power wheelchair past the skyscrapers of downtown, weaving my way through crowds of commuters on foot and darting across hectic, traffic-filled intersections.

One morning, I came upon a homeless man sleeping on the sidewalk. He especially stood out to me because he was exceptionally dirty, with no possessions, sleeping on the bare concrete – a contrast to the many other homeless that I saw who had sleeping bags and shopping carts full of clothing and such. With so much going on – racing to a trade show, city traffic buzzing around me – his presence literally brought my world to a halt.

With time to spare, I went in the coffee shop around the corner, bought two breakfast sandwiches, two cartons of orange juice, and grabbed a straw. I then returned to the homeless gentleman, waking him up, offering him breakfast. He didn’t say much, but he accepted the breakfast sandwich and juice.

In my shirt and tie, I sat there with him, carefully eating my breakfast sandwich, as not to spill on my clothes. I didn’t, however, open my juice because it was beyond my dexterity – I reckoned I’d save it until one of my colleagues at the convention center could open it for me.

We sat there silently eating – folks passing us on the sidewalk – when, suddenly, the homeless gentleman took my orange juice carton and straw off of my lap, opened my juice, put the straw in, and observantly gave me sips on queue, following my bites.

What struck me was the remarkable humility in the gentleman. Although he was more down on his luck than arguably anyone in Los Angeles – and who knows how or why? – he still had the humility to recognize my needs, graciously serving me my orange juice when I could not. No, I can’t entirely explain why I stopped in my tracks that morning to have breakfast with that gentleman, but I know that it fit somewhere in my disability-based understanding that my plight in life is no more worthy than anyone else’s, that if I was to have breakfast, so should the gentleman sleeping on the sidewalk. However, what truly inspired me was that despite the gentleman’s seeming needs, he recognized mine in accordance with his own via the very nurturing act of helping me with my juice, words unspoken.

It’s easy to think we’re above others based on status, and it’s even easier to think we’re beneath others based on our seeming weaknesses, including the humbling aspects of disability. And, yet, it seems so hard for many to simply realize that we all share a common humanity, where shared humility brings us together from all walks of life, right down to a guy with cerebral palsy having breakfast with a homeless gentleman on a sidewalk, where both find gratitude in the challenges of life where others may not.