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….

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.

Avoiding Boulders

By Mark E. Smith

Many, many years ago, I taught a semester-long course called “The College Success Workshop.” Its purpose was to teach freshman the skills needed to better succeed in college. I covered subjects ranging from test-taking skills to study habits to healthy living. My favorite section, though, was on the importance of positive focus.

I told my students of a research study done in the 1980s on a highway in the Nevada desert. There was nothing but flatlands along the 30-mile stretch of highway – except for a single mound with a boulder approximately at the halfway point. At least once per week, a car crashed into the boulder. The boulder was legendary to the state police, many referring to it as “The Magnet.”

Researchers stumbled upon this as a case study and also wondered how it was that so many people hit such an avoidable object in the middle of the desert?

They interviewed many who’d collided with the boulder and found a striking similarity among them. When asked what was the last thought they remembered before leaving the road and hitting the boulder, they all answered to the effect of, “Don’t hit that boulder!”

Maybe you can relate with those drivers, having thought, “Don’t spill this coffee,” only to spill your coffee! The fact is, what we focus on is most often what we experience, both in the positive and the negative. The science behind it is called experience-dependent neuroplasticity. In simple terms, we have the power to create our state of mind based on what we focus on, and that creates actual experiences.

For this reason, the importance of focusing on the positives in our lives can’t be overstated. Our mindsets dictate both outcomes and our quality of life.

I remember going through a rough period as a teen where I was focused on all that was wrong with me. This isn’t unheard of with teens, as it’s a difficult time for many. However, I do think that disability can compound such feelings, and it did for me. I focused on how my cerebral palsy made me feel so removed from my peers, how unattractive I was, what little I brought to the world. It was a bleak time, where I couldn’t even envision a future for myself. What’s a 14-year-old with severe cerebral palsy ever going to become?

Although I had made tremendous strides in life, it wasn’t until I was 16 that I realized that I was focusing on the wrong areas. I didn’t need to focus on how weak my body was, but how strong my mind was. I didn’t need to focus on my spasticity, but my charm. I didn’t need to focus on who I wasn’t, but who I was. I was a remarkable person in my own right, as we all are, and when I focused on that, not only did my life change, but the world around me did, as well.

This principle applies to all of our lives. That is, our lives evolve based on what we focus on. If we see the world as a negative place, it is, just as if we see the world as a positive place, it is. Our experience is ultimately built by our own mindset.

This isn’t to say we shouldn’t address the tough stuff in life, as of course we should in responsible ways. I can’t just ignore the difficult realities of my disability, as there’s no skirting them. Nevertheless, only focusing on the negative literally makes us and all around us negative. That’s a difficult way to live.

All of us have blessings and curses in our lives. Yet, we also have the ability to choose how to frame our lives. Are we focused on the blessings or the curses? The choice is ours, but the outcome is unquestionable. If we focus on the blessings, we live a blessed life. If we focus on the curses, we live a cursed life.

I say, let’s focus on the positives in our lives – and avoid those boulders!

When Being Our Best Truly Counts

By Mark E. Smith

I live in an inspired cultural niche, one of disability. Every day, I have peers vying against the odds to overcome seemingly insurmountable struggles. What’s long intrigued me isn’t that they do it, but the specific life tool that they use, one that we all have.

Tiffani Ntanos, is a well-known YouTube personality, who became a high-level quadriplegic at age 20 as a result of a diving accident. She’s spent the past six years learning how to live as a quadriplegic. Being in one’s 20s can be confusing enough, and adding a life-changing accident makes it even more difficult. Now, at age 26, she’s living with cancer. Talk about blow after blow. Make no mistake, it’s a daily struggle, but she’s doing it, she’s addressing each vying in life as it comes. She’s had not one, but two of life’s toughest paths, but keeps pushing forward. How?

Tiffani and many of us know the rule of the road when it comes to navigating harrowing challenges: When we’re at our lowest, let us be at our best – for that’s when it counts the most.

Most assume that we’re at our best when… well… we’re at our best. Yet, that’s a misnomer. See, being at our best when life goes smoothly isn’t difficult. It’s actually quite easy. We’re soaring at those fortunate points and it doesn’t require a lot from us.

However, when being at our best truly counts is when we’re in the depths of struggle. We must find the insight to cope, the fortitude to adapt, and the strength to rise. We must not settle for where we are, but strive toward where we can be. We must not accept a defeat, but fight for a win. This all requires our best.

I’ve been at the lowest of the lows in life, and the highest of the highs. I still oscillate between the two from time to time – most of us do, as that’s how adversity in life works. And, it’s at the lows when I learned to be at my best, as we all must do if we’re going to succeed. Dancing around a ring as a boxer is easy. Real strength comes in when you’ve been knocked down and must get up.

When we’re defeated, of course it’s natural to feel defeated. Yet, those who know how to succeed during extreme adversity make the choice to move from feeling defeated to feeling motivated, they know it’s time to be at their best. The key to all of this is living with hope. If we feel motivated, we feel hope, and they fuel each other. Therefore, rarely is it the situation that dictates the ultimate outcome, but our perspective – that is, rising to our best, especially when at our lowest.

Life throws adversity our way from time to time, which can knock us down. That’s not the time to curl up and succumb. Rather, when adversity comes our way, that’s the precise time to double down and say, Man, I’m at my best – I can handle this!

Robbing Banks

By Mark E. Smith

In the San Francisco Bay Area during the mid-1980s, it wasn’t hard to get harassed by the cops if you were a punk teen. Smoking in public, hanging out in front of a convenience store, being on the streets too late, having a house party, and so on would all but guarantee the appearance of cops. I witnessed many such scenes. Among my peers, there was teenage social credibility to it all. If you wanted to be the cool 11th-grader on Monday morning in homeroom, a run in with the cops on the previous Saturday night did the job.

For me, it was hard to be that cool kid Monday mornings. The cops simply didn’t hassle a kid using a wheelchair like me. I was once hanging out with a bunch of smoking, punk friends outside of an ice cream shop, and a cop threatened to haul everyone away, then turned to me and said, “Don’t worry, I don’t take people in wheelchairs to jail.”

I was instantly stung by his remarks. I wanted to be one of the guys, as teens do, but the cop clearly pointed out that I wasn’t, that I was different. In my mind, I was just as much a punk as my punk friends, right down to my black leather jacket. How dare the cop discount my punkness due to my disability. Worse yet, how dare he give me a pass in front of the punk peers I was part of – but suddenly differentiated from because of the cop’s attitude toward my disability.

My immediate emotions aside, I wondered if the cop spoke a universal truth, that people who use wheelchairs aren’t taken to jail? If it was a fact, should I skip college and take up robbing banks?

All of this – the cop’s condescending attitude and the potential of never going to jail – made me more mischievous than ever. One night, as my buddy and I prepared to cruise the avenue in his car, I got the brilliant idea to put a pillowcase over my head in the passenger seat and pretend like I was dead.

The avenue was heavily lit, so everyone saw in everyone’s car. When my buddy stopped at traffic lights, I relaxed my body, pillowcase over my head, and flopped against the dash like a dead body. It seemed like harmless fun and got lots of attention – until the cops pulled us over.

It turned out that I played such a convincing dead body with a pillowcase over my head that multiple people took our license plate number and description, and called the cops.

“What do you think you’re doing?” the cop asked, holding my passenger side door open, the scene illuminated by the cop car’s colored lights.

“Nothing,” I said, the pillowcase still on my head.

He yanked the pillowcase off of me, my grin appearing.

“This isn’t funny,” he said. “You’ve scared a lot of people.”

“It’s a joke,” I replied with no remorse.

He looked in the back seat and saw my manual wheelchair, then looked back at me.

“Let’s get your wheelchair out and get you to Juvenile Hall,” he said. “I bet your parents won’t find that funny.”

Obviously, not arresting people who used wheelchairs wasn’t a universal code among cops. I was in deep trouble, fast, and my disability wasn’t getting me out of it. So, I did what any punk teen would do: I apologized profusely and explained that I never intended to scare anyone, that it was a dumb prank gone wrong, that I’d never do it again.

Fortunately, the cop let me off of the hook – but kept my mom’s pillowcase.

At 16, I learned a lot that night. I learned that what I thought was funny scared a lot of people and that wasn’t right. I learned that there’s nothing cool about getting in trouble with the cops. And, I learned not to rob banks because they do put guys like me, who use wheelchairs, in jail.

Lou Gehrig’s Disease

By Mark E. Smith

While writing a medical article about amyotrophic lateral sclerosis (ALS), I was intrigued by the story of Lou Gehrig. Although “Lou Gehrig’s disease” is a synonym for ALS, little is discussed in literature in a linear form about how the most famous person with ALS actually dealt with the condition. In extracting parts of Gehrig’s experience from many sources, bit by bit, I saw an amazing story unfold, one with a profound lesson for many of us.

In 1923, Lou Gehrig joined the New York Yankees, soon taking his spot as first baseman. By the 1930s, he set an all-time record, playing in 2,130 consecutive games, a record unbroken by another player until 1995. In the 1930s, Gehrig, alongside longtime teammate, Babe Ruth, became a homerun champion, as well. However, in 1938 everything changed for the baseball legend.

In the 1938 season, Gehrig had his first seasonal slump. Based on the 1937 season, he was still going strong, even in his mid-30s, but his performance was suddenly amiss. What’s more, Gehrig felt it was more than just an unlucky season. He struggled not only on the field, but with tasks as simple as tying his shoes.

By April of 1939, during spring training, even the press became concerned. Sports journalist, James Kahn, wrote:

I think there is something wrong with [Gehrig]. Physically wrong, I mean. I don’t know what it is, but I am satisfied that it goes far beyond his ball-playing. I have seen ballplayers ‘go’ overnight, as Gehrig seems to have done. But they were simply washed up as ballplayers. It’s something deeper than that in this case, though. I have watched him very closely and this is what I have seen: I have seen him time a ball perfectly, swing on it as hard as he can, meet it squarely—and drive a soft, looping fly over the infield. In other words, for some reason that I do not know, his old power isn’t there… He is meeting the ball, time after time, and it isn’t going anywhere.

On May 2, 1939, Gehrig ended his consecutive-games record by pulling himself from the lineup. Six weeks later, on June 13, he checked into the Mayo Clinic, where he was diagnosed in the following days with ALS, a degenerative muscle disease, fatal within two to five years. He was 36.

Although contrary to the actual diagnosis given, Gehrig’s initial reaction was expressed in a letter to his wife: “There is a 50–50 chance of keeping me as I am. I may need a cane in 10 or 15 years. Playing is out of the question.”

On July 4, 1939, with the news of Gehrig’s illness filling newspapers, he returned to Yankee Stadium to retire, giving his “luckiest man alive” speech. There’s little record of the speech, but the following pieced-together excerpt shows Gehrig’s disposition:

For the past two weeks you’ve been reading about a bad break. Today I consider myself the luckiest man on the face of the earth…. When you look around, wouldn’t you consider it a privilege to associate yourself with such fine-looking men as are standing in uniform in this ballpark today? …I might have been given a bad break, but I’ve got an awful lot to live for. Thank you.

One might think that upon retirement from baseball, with such a grim health prognosis, Gehrig would have settled into a quiet life. However, in keeping with his show-up-and-play nature, he took a civics job as a New York Parole Commissioner in January, 1940, maintaining a very low profile as he worked with prison inmates, where he believed in rehabilitation.

By 1941, while Gehrig worked as a Parole Commissioner, his condition dramatically declined. His wife, Eleanor, was his constant companion, helping him perform his duties. In May of 1941, Gehrig resigned his position due to ever-deteriorating health.

On June 2, 1941, Lou Gehrig died of ALS at 10:10 p.m., at his home in the Bronx.

While many remember Gehrig for his Hall of Fame baseball accomplishments, his ultimate legacy may be a single quote that he left us with that applies so well to all facing such harrowing adversity: “Don’t think I am depressed or pessimistic about my condition at present. …I intend to hold on as long as possible and then if the inevitable comes, I will accept it philosophically and hope for the best. That’s all we can do.”

Going All In

By Mark E. Smith

It was the sickest I’d ever been. In a matter of days, I went from the masculinity of a mid-forties man to the physical dependence of an infant. A corner was turned, and I was in unknown, uncontrolled territory.

Living with a disability may seem unique, as with my cerebral palsy, but there’s an equilibrium to it. Yes, there are limitations inherent to my disability that require assistance from my wife in personal ways that we’re both comfortable with. But, we all have discreetness and self-consciousness boundaries. In fact, such boundaries seemingly help us define our own sense of masculinity or femininity. Put simply, we say, I’m comfortable with having my spouse see me this way, but can’t imagine ever being comfortable seen in XYZ circumstance. These boundaries vary from person to person, couple to couple, including among my wife and me.

In my time of need and illness, I had no choice but to give up such preconceived boundaries. My wife was there, willing and able to help. I had to accept it based on my illness. I had no choice but to remove my constructed boundaries.

Often, we look at those jumping in to help as the strong ones, and they are. However, as I continue learning, it takes tremendous strength to let others in to help. However, when we do, it takes us to far deeper levels of connection and love. Boundaries can be great, but self-constructed ones of self-consciousness – which all of us have in some forms – can serve as walls that prevent us from getting closer to others and letting others fully know us. For me, sick in bed, totally dependent upon my wife, I realized not just her unyielding love and devotion, but how letting down my own guard allowed me to more fully immerse in our love.

All of this got me thinking, why does it take such extreme circumstances for us to allow ourselves to remove our boundaries, to further trust in love? Why do we cling so tightly to self-consciousness that it prevents us from fully opening ourselves to others?

Of course, the answer is, vulnerability. By nature our biggest fear, admit it or not, is rejection by those we love. Sure, we open ourselves up to love, but most often we have a last-ditch protection mechanism that prevents us from going all in – that is, we hold back in a few areas. However, if we’re being prudent and healthy in our relationship, there’s zero risk, so holding back simply holds us back. It shouldn’t take a situation like a serious illness to forego self-consciousness and fully trust in the deepest forms of love. Here’s all of me for you to love, and I cherish having all of you to love….

Trusting fully in deep love is tricky. It can expose our vulnerabilities, require us to face them, and then let them go, all of which is scary. However, when we do so, we create a pathway to loving and being loved that’s deeper and safer than we’ve ever known. Love is always uncharted territory, and allowing ourselves to follow it to greater and greater depths is life’s most miraculous journey.