Bullies, Critics, and Haters

By Mark E. Smith

I’m very fortunate to publish both this written blog and a YouTube video Vlog every week. The content has never overlapped until now, so I saw it fitting this week to post a video as both my blog and Vlog – on a poignant topic that, unfortunately, many of us can relate to….

Turning the Flame Back Up

By Mark E. Smith

I’m often asked what inspired me to enter the mobility industry, manufacturing power chairs? The answer, of course, is complex, with hallmarks in my life as early as age five that led to my now lifetime career.

However, there’s one pivotal point in my coming of age that especially relates, not just to my career in power chairs, but to where many of us find ourselves at midlife.

When I was 14, in the early 1980s, it was the midst of the percolating independent living movement and civil rights for those with disabilities, and I lived at the epicenter of it in the San Francisco Bay Area. As those of us with disabilities gained greater social inclusion, we needed greater power chair technology, but it didn’t exist. As a result, a homegrown, almost underground, industry evolved of “conversion kits,” where you could piece together retrofit parts to dramatically increase your power chair’s performance – and your independence.

I saved up my money and bought conversion parts for my power chair, piece by piece. I first bought faster motors, then added larger batteries, then finished by converting it from belt drive to chain drive, all strewn together with U-bolts and hose clamps. It was something your crazy uncle would fabricate in a barn. But, it worked fantastically.

That concoction of a power chair was my sanctuary. My home wasn’t safe or healthy, so when not in school, I hit the roads in my power chair, far and free. I often looked down at my black boots, watching the street’s asphalt feed beneath my power chair like a high-speed conveyor belt, propelling me to the ends of the Earth, all problems left behind. I rode for endless miles around our surrounding towns, frequently tackling San Francisco or Berkeley. The result was always the same: the incredible feeling of liberation.

I carried that feeling long into adulthood, entering the power chair industry and not just perpetually living those feelings, but hopefully helping others do the same. And, it’s been a blessing.

However, as we can find in midlife, my focus still changed. My professional, family, and community roles all wonderfully evolved more rewarding than I ever imagined. Yet, these amazing aspects also required more and more of my attention, with my times of riding a power chair purely for the passion of it becoming fewer and farther between. It wasn’t that I forgot what it was all about; rather, I simply was distracted from what originally fueled this amazing life I live.

Many of us find ourselves here, don’t we? We love our spouses, but the daily routines of the relationship become… well… routine. Or, maybe our careers that were once so inspired now seem more mired in drudgery. Why does this happen, even to the most well-meaning, responsible people?

The answer so often simply is, we forget the original spark, the original passion that got us there. When my friends confide in me with their relationship problems, I always ask what the original attraction to the partner was, and their demeanor goes from negative to positive. I do the same with friends struggling with career satisfaction, and their demeanor, too, shifts toward the positive. Life has its way of distracting us from our core passion, and the key is to gaze at our spouse or arrive at work and simply remember the feeling that sparked it all. The pilot remains lit. We just need to adjust the flame sometimes.

My wife recently sent me a text around lunchtime at work, asking what I was doing?

“Just racing around town a bit in my chair,” I replied.

And, it was awesome.

Hello, I’m Johnny Cash

By Mark E. Smith

Among the most difficult clinical mental conditions to diagnose is delusional disorder. The reason why it’s so difficult to clinically diagnosis is because it doesn’t manifest itself as other conditions do. There are no hallucinations, you don’t hear voices, and you remain content, sensible, and logical. The question, then is, where is the disorder?

This is the tricky part. Clinically speaking, extreme forms of jealousy or grandiose thoughts are emblematic of delusional disorder. However, it still becomes tough to diagnose, doesn’t it? Most of us have felt unfounded jealousy in our lives at some point if we’re honest, and grandiose thoughts often fuel success. In this way, it’s only to the very extremes that this state of mind becomes diagnosable.

I might be among the few who are diagnosable. See, I believe that I control my own joy, which goes against the way we culturally define what creates joy. We typically base joy on external forces bringing “good” into our lives. We logically don’t feel joy during adversity. Yet, in my possible delusional disorder, I often find joy even during the toughest times of my life.
Among the gravest moments I’ve experienced was awaking with a tracheotomy, on a ventilator, unable to speak, due to respiratory failure following a surgery. To make all worse, my cerebral palsy doesn’t allow me to physically write. I was suddenly locked inside my body with virtually no ability to communicate.

As the days passed, I found the circumstance both horrifying and hilarious. On the one hand, I couldn’t communicate beyond gestures, which is a disturbing reality. You feel as though you’ve lost everything. On the other hand, seeing my family try to read my lips with little avail was a funny sight to witness. As a result, I mouthed the most obnoxious phrases, and amused myself to no end as they tried to figure out what I said. My sister was the most fun to toy with. She shares my sense of humor and joy, and she laughed hysterically at not being able to understand me and I laughed at her for not knowing the ridiculous words I was secretly uttering. It was the two of us in my hospital room, laughing hysterically during a very serious health crisis. But, there we were, finding joy.

After a week or so, it was time to learn to speak with my trach. There’s a small cap that goes on and it allows vocalization. As the speech therapist explained to my family and me, it takes days or weeks to master speaking with a trach, that I couldn’t expect to speak right away.

With the cap in place, surrounded by family, nurses, and the speech therapist, I had an audience. I took a deep breath and uttered the first words that came to heart: Hello, I’m Johnny Cash. The words came out deep and clear.

It was the way Johnny Cash began every concert and nothing seemed more fitting or joyful for me to say in the moment, per my possibly delusional mind.

Everyone expressed a combination of tears and laughter. I didn’t plan on speaking those words as my first, but the silliness and joy just came out.

I’ve found myself in such situations throughout my life, and as those around me will tell you, joy remains. I’ve had my frustrated times and dark days, of course. But, in general I live with a sense of joy, one that nothing can take from me. You can take my voice, but not my joy!

I suppose we could debate whether I have diagnosable delusional disorder. What I know I have is a specific perspective toward our emotions. We have two choices in the face of any adversity: we can allow it to pull us down or we can choose not to allow it to steal our joy. I strive to default to joy.

I say that if being joyful even during the tough stuff is delusional disorder, we should all be fortunate to have such a condition.

Investing in Memories

By Mark E. Smith

Everyone in our town knew John Sparacino. Even though Martinez was part of the sprawling San Francisco Bay Area, it was a world away from big-city life when I was growing up there. It was small-town America at its best, with John as mayor of Main Street – literally.

I first met John when I was eight, strolling Main Street in my power chair. I made my rounds among the Valco Drugstore, Al’s Paint & Hobby, and DiMaggio’s Restaurant, run by the family of the hometown hero baseball player. I often parked myself at the fountain in the middle of it all, and watched Main Street abuzz with pedestrians.

John wasn’t just Mayor, but Vice President of Eureka Federal Savings Bank on Main Street. He was a short Italian, with a thick mustache, hair that looked like a toupee but wasn’t, with glasses too big for his face. And, he was always in a suit – that’s how bankers of his era dressed regardless of the day or occasion. The San Francisco Chronicle once described him as a “small dapper man,” and that he was, less than five feet tall.

John often stopped and sat with me at the fountain. I’m sure he had more important business to tend. But, it was my luck because he introduced me to everyone in town and I went from the kid in the wheelchair to Mark E. Smith. John was adamant that there were lots of Mark Smiths in the world, but only one Mark E. Smith, and so that’s how he introduced me.

As I grew up, John remained a fixture, both in Martinez and in my life. My parents knew him and he always kept tabs on me, even once I was a teenager, too cool to hang with old men by the fountain.

Upon my 18th birthday, I went to see John at his bank, to get my first checking account. He sat with me at his desk in the lobby – that’s how they did it then – and he helped me fill out the paperwork.

“You know, Mr. Smith, I’m a banker,” he said. “I know a lot about money and investing. I’m going to tell you the best investment you can make during your lifetime with your money: memories. Materialistic things come and go, never lasting forever. But, nothing can take your memories away. If you want the most joyful life, use your money wisely to create memories.”
His words were so genuine and heartfelt, they sank into me, not lost on a know-it-all young man. And, off I went into life, checkbook and John’s advice in hand.

I lost touch with John in my early 20s, trading small-town Martinez for the draw of big-city San Francisco. However, John’s wisdom followed me wherever I went. In fact, in my formal training as a writer at San Francisco State University, the importance of creating and sharing memories was even deeper instilled within me. “Memories are the bones of our craft,” a writing professor once told me.

Of course, the birth of my first daughter cemented the power of creating memories as a centerpiece of life. With her now 21, I fondly base much of my life’s joys on experiences long ago shared with her: holding her at birth, her first steps to me, our first shared airplane ride, her dance recitals, vacations together, and on and on. The same with my wife and younger daughter – it’s the memories of amazing experiences that matter most to me, life’s moments shared. Often my wife and I talk about shared memories on long drives as we head toward creating new ones, and delight fills our hearts. Indeed, John was so very right – memories are the best investment we can make in life.

Still, I’ve always wondered about one aspect of John’s words. Is it true that nothing can take our memories away? After all, I’ve had those around me with Alzheimer’s and dementia, where memory loss is prevalent. However, I’ve learned that even then some memories are retained. While the hippocampus – the part of the brain responsible for day-to-day memory – is compromised, long-term memories often remain. In this way, for some of us, memories truly are all we’re left with.

I recently learned that John Sparacino died at age 92. The impact that he made on that one small town went on for generations and will continue – in the memories that he helped create for many of us.

The Kids Already Have it Right

By Mark E. Smith

I recently presented a disability awareness program in front of 50 or so children. They were young, between the ages of five and 10. It was a Boys and Girls Club summer camp, and in between all of the fun activities that kids typically do at summer camp, the director sought to enlighten them with lessons in diversity. In my case, the diversity that is a disability.

As adults, we can presume the dynamic. Able-bodied children unsure what to make of someone like me: my power wheelchair, muscle spasms, slurred speech, all emblematic of a term they’ve never heard, cerebral palsy. We could also speculate that the children may be initially put off, unsure, maybe even fearful upon meeting me. After all, formal psychology teaches that we naturally fear the unknown, those who are different from us. In fact, I once read a fascinating study that asserted that the reason why strangers may speak to an able-bodied companion instead of directly to one with a disability – a situation my wife and I sometimes experience – is because most gravitate instinctively to the known, avoiding the unknown. So, it would be understandable for the children interacting with me for the first time to have all of these very real emotions.

Yet, this presentation went exactly as the many I’ve given over almost three decades. That is, the children were totally comfortable and accepting of me, of my differences, from the first moment. I mean, surely there must have been a few apprehensive kids, as within any group. However, in whole, I’ve seen children respond to the unknowns of my diversity in a way different from some adults: they immediately embrace it, unencumbered by preconceived notions, seeing people as… well… people.

During my presentations, I give the kids the opportunity to ask me anything. Virtually everyone raises a hand. As I call upon children, one-by-one, the questions are so genuine, it’s a life lesson for all of us. See, while I receive the occasional practical question – how do I sleep or shower? – the majority are ones of commonality seen by the children. What’s my favorite color? What’s my favorite flavor of cupcake? Do I like dinosaurs? They’re not dwelling on differences, but focusing on similarities.

It’s long made me think, where did we, as adults, turn the corner away from such genuine acceptance of others who are seemingly different? When and why did many of us lose such an innate trait as seeing only the commonalities in others, not differences? I’m guilty of it. I, too, note differences when I see them in others, and while I strive to be accepting and open-minded, I can fall into that trap of preconceived notions projected unjustly onto others. Yet, when I think back to my childhood, I didn’t have them then, and I remember being perplexed at times as to why some adults had them toward me as a child with a disability?

According to a Harvard study, while our brain is hardwired to recognize differences, seeing differences in others aren’t heavily engrained in us until around age 10. At that point, we become highly impressionable by societal views and this is how our “prejudices” form. The good news is that we are also capable of receiving positive impressions, as well as unlearn negative ones. It’s ultimately up to us whether we retain the open heart of a child.

For me, I’ve come to understand that my disability awareness talks to children aren’t about them at all – they already see people correctly, where diversity isn’t yet a word that they need to know. Rather, the real lesson is for some of us adults in the room: there’s truly no diversity among us, just our common humanity.

Nights Like the Minetta Tavern

By Mark E. Smith

When I was a child, my stepfather could do no wrong in my eyes. I idolized him, not just as a father figure, but as who a man should be.

Yet, as I overlooked then but realized as I grew older, he was deeply flawed. He was an alcoholic and his relationship with my mother was as mutually as unhealthy as it gets – constant drinking, domestic violence, suicide threats and attempts, drunk driving, and on and on.

However, much as when I was a child, I now, in mid-life, deeply value who he was in the best ways, what he gave me, and most of all, what he taught me.

I recently had dinner at the Minetta Tavern in Greenwich Village. It opened in the 1930s and has since been where men like Paul have gone for decades to celebrate life. The mahogany bar, white tablecloths, and red upholstered booths are timeless. It’s easy to imagine its famous past patrons hanging out there – Earnest Hemingway, Dylan Thomas, and e. e. cummings, to name a few – drinking, smoking, and eating, boisterous.

As I sat with my family and friends at a table in the middle of the Tavern, I drifted off from our own decadent meal and storytelling to thinking of Paul. I gazed at the signed, black-and-white pictures of old-time prizefighters on the walls, and was reminded of growing up watching boxing with Paul. Then, there was the Hemingway connection, who, in many ways, Paul embodied – bearded, smoking pipes and unfiltered cigarettes, playing dice at bars, drinking straight whiskey by the glass full, while discussing larger-than-life adventures.

Paul raised me in that spirit, creating larger-than-life memories. He took me to a bullfight in Mexico, offshore fishing in California, game hunting in Nevada. Then there were our trips to Hawaii and Spain. It was all spectacular and, in looking back, always hinged on the cusp of disaster, often fueled by alcohol – that’s how men like Hemingway and Paul lived. And, I, as a boy with severe cerebral palsy, was along for the wild ride.

I was infatuated with it all – not just in the adventurous life, but in Paul embracing me fully as his son, profoundly affecting me after having been all but abandoned by my biological father.

But, there still was that dark side. When you grow up with a Hemingway or a Paul as a father, you witness that which no child should witness: the insanity of a drunk. As I grew into my 20s and 30s, this juxtaposition became increasingly evident. Is a great man who’s deeply flawed truly great? I struggled with this question into early adulthood.

Eventually, Paul lost virtually everything, and he moved into my house, sleeping on our couch. He came home drunk night after night, and I was torn between him, as the father I’d always loved, and the health of my young family being negatively impacted by his behavior. I saw the amazing man I’d grown up with also be that man with my toddler daughter – that is, an amazing grandfather. But, the drinking was then beyond unacceptable to me.

The dilemma was seemingly solved when I moved across the country and we agreed to let Paul remain in our old house for at least a year, till I sold it, my brother watching over him to a degree. That distance gave me time and space to understand Paul’s complexities and the complexities of my emotions.

Paul later visited us annually, and although he still drank and his potential was forever faded, he never stopped loving me or gushing with pride in who I’d become, right till his death. And, my love for him likewise never wavered. There’s no better gift a father can give his son than acceptance, and that remains life-inspiring for me.

I returned to the conversation at our table, looking at my wife and youngest daughter – both of whom radiated the energy of the room – and I realized that what Paul taught me was that we don’t need to be perfect to make a profound difference in the lives of those we love. We just need to love, and that can be enough.

I finished my single glass of wine, admitting that I can’t hold my liquor like Paul, but in other ways, I’m every bit the man he raised me to be: I, with my family, making memories at the Minetta Tavern.

Allowing Time for the Seasons of Life

Mark E. Smith

We all know the merits of time management in our daily lives. But, what about in our emotional lives? How skilled are we at managing that time?

If you’re like me, you’ve been impatient at points in your life, where you’ve wanted what you’ve wished, now! Yet, life rarely unfolds at the speed we wish. After all, most of us have an idealized version for our lives in our mind, but it never comes together fast enough, does it? At best, it can seem like all takes forever to come to fruition, and at worst, it seems like nothing will ever happen for us.

What I’ve learned is to give ourselves the time it takes for life to reveal its paths. I’ve been there at different points, wanting career, love, happiness, health, and on and on – to happen immediately. I never wanted to wait for it; I wanted it now!

However, I’ve realized that life has its way of delivering the right opportunity at the right time. It’s not to be forced. This isn’t to say that we should just sit and wait. We must pursue what we wish through action. Nothing worthwhile ever simply appears. However, it’s important not to put a time frame on many of our hopes and dreams, as it will merely frustrate us. Farmers don’t merely harvest. Rather, they plant seeds, tend their crops, and trust in Mother Nature’s delivery.

Life has its own timing, and if we strive toward what we want, with faith that life will deliver it when we’re truly ready, that’s a far easier road than dwelling in the doubt or frustration that’s fueled by impatience.

To every thing, there is a season, and a time to every purpose….

At other points in life, we may even feel lost, especially during or after a major life change, wondering, When will life feel normal again? It’s vital that we allow ourselves the time needed to find our way again. Feeling this way is normal and time does heal most. But, we must recognize that time is needed to learn, grow, or heal.

In these ways, when it comes to emotional time management, the only managing we should do is allow ourselves time – no matter how much time that takes.