how to find hope – PowerchairDiaries

Windless and Still

By Mark E. Smith

Life can be brutal – dehumanizing at its worst, where some of us lose so much at points, we feel that all we are is flesh and bones.

Yet, we push through it – most of us, anyway. Not all. We scrape the depths of our souls for whatever is left, and that marrow revitalizes us enough to start a comeback, following some path, yet to be totally revealed, that we hope will lead us out. It’s never linear, though, is it? We still find glimpses of hope veiled by dark patches. But, we reach and claw, and keep finding our way out.

How long does it take, we ask. Each of our journeys is different, in scale and in time. Months for some. Years for others. A lifetime for a few of us.

I think about this in bed on an August morning at the shore. My wife and youngest daughter are still asleep. I guess it’s around 7:30 am based on the last time I rolled over to check the alarm clock. No shower today. I have no desire for one.

Our daughter stirs, chirping, as we call it when she sings herself awake. I both revel in her adorable character and envy her. I often awake happy, with a tune in my head, but we adults are conditioned not to let it out. Kids are the fortunate ones – free of so many smothering social norms that would bring so much joy if we, too, could just let it out.

We all eventually get up and my wife asks me what shirt I want to wear? We banter about my insistence of a white, spread collar button down. She notes that it’s too wrinkled. I explain that it’s fine for my plans. I’m just going to park myself on the beach. Other events may transpire before or after, but I’m not concerned. A wrinkled, white button down will do. I slip it on, buttoned, over my head. As it slides down my torso, it feels crisp, cool, flowing, perfect.

I roll into the bathroom and turn on the sink’s faucet. I wet my hair with my hands, noting the grey. I run a brush through it several times and I’m good to go for the day.

A white shirt and combed hair were my only concerns, and they’re behind me. I roll over and look out our window to the beach, windless and still. And, I, too, am at total peace starting this day.

“Who’s ready for the beach?” I ask my wife and daughter.

The room is silent. We all know it’s a rhetorical question.

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.

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.

Stopping the Spiral

By Mark E. Smith

It’s that murky area, the one where a bad day turns into a bad week, maybe a bad month, and we can’t find our way out. These are the scary, dangerous times for many.

I recently had one of those weeks, all emotionally spiraling out of control. A series of deaths around me triggered my own anxiety around mortality – fears of leaving my wife and daughters behind upon my passing – created by a not-so-long-ago health crisis. The anxiety and fear piled on and I felt a confusion, a disassociation, a fear that my life, too, was destined to end sooner than later.

As the week went on, I found myself feeling more and more isolated, even though my everyday life didn’t change. I was surrounded by people – my work, my family, my community – but still felt alone. My wife recognized my behavior, wondering if I was “back there” again? It’s something she’s seen come and go, especially since my health crisis.

I remember sitting alone at our kitchen table one eve, irrationally thinking that all around me was temporary, that this might be the last time that I looked out the windows at the early-summer, green-carpeted hills that surround our home. Just as this lush season will fade, might life, itself?

I grabbed my cell phone and sent a text to my lifelong best friend, asking if he could talk? I knew he could, as whenever either of us reach out, the other understands the importance of answering. And, so for an hour, we talked about what I was feeling, and when I hung up the phone, the spiral was neutralized.

If we are thinking, feeling, introspective individuals, we’re going to experience difficult times in life. At those moments, it’s crucial that we’re self-aware enough to reach out to someone for support, clarity, validation of feelings. We need to be self-aware enough to say, I need help stopping this emotional merry-go-round I’m stuck on.

For some of us, a partner, family member, or friend can offer the grounding perspective we need. For others, where the issues are more clinically based, professional help is needed. In either case, our reaching out is key to our survival.

Now, I know that reaching out is hard and scary. It’s difficult to share that we’re struggling, if not impossible for some. At the very least, by reaching out, we’re exposing our deepest vulnerabilities and extending trust. It can seem harrowing.

However, no one can help us if they’re unaware that we’re struggling. So often we wait for others to come to us out of concern. But, if we’re not showing signs, they can’t be expected to. This can be compounded by the fact that many who are struggling master the art of hiding it — again, showing vulnerabilities is extremely difficult for many. Therefore, it’s vital that we, ourselves, reach out, that we push past our apprehension and fear in our own best interests.

I’ve learned that in my toughest times, reaching out has never failed me. When I’ve reached out, I’ve found the most profound human experience: an embrace.

We all struggle at some point in life, the causes of which are unique to each of us. When we find ourselves there, let us not be ashamed or question ourselves or, worst of all, isolate and hide our struggles. Rather, let us serve ourselves by reaching out to those around us – and experience the power of common human experience. We never need to be alone, nor are we.

Shifting Our Lives From (R) To (D)

By Mark E. Smith

My oldest daughter recently returned from Israel, where she waded into the Dead Sea. The Dead Sea is amazing for many reasons, from the biblical to the scientific. Among them is the fact that it’s the lowest geographical point on Earth. As such, many travel to the Dead Sea to “leave their lowest points in life at the lowest point on Earth.” The Dead Sea, then, is a place of healing our emotional wounds, those that, unlike the physical, may linger for years or a lifetime.

All of this raised a question for me: Must we travel all the way to Israel, immersing ourselves in the water of the Dead Sea, to heal from the past? Or do we simply each possess the capacity to let go of our emotional wounds and move forward, regardless of geography or lore?

Now, I want to make it very clear that I’m not speaking of PTSD or such clinical conditions, as they must be professionally addressed. But, how many of us are simply holding so tightly to emotional wounds from the past that the air can’t reach them for healing? How many of us are allowing emotional wounds to dictate who we are – or, aren’t – today?

I’m not a smart man, nor wise. However, what I’ve learned is that we can’t steer our lives in two directions at once. Our lives, you might say, have two gears – forward and reverse. If we concentrate too heavily on what’s happened to us, it’s impossible to move forward. It’s like trying to drive a car forward while the shifter is in reverse – it doesn’t work, period. Again, this isn’t an astounding revelation; it’s simply the way the physics of life work. If we want to move forward, we can’t be living in reverse. If we want to reach our highest points, we can’t let our lowest points keep holding us back.

The key to all of this is identifying when we need to shift gears. I’ve had a lot of trauma in my life, much that could have held me back, and I’m sure there’s more to come. However, what I’ve found are a few simple practices that I deliberately draw upon that help me shift my life from (R) to (D) in real time.

Firstly, we must realize that experiencing pain is a normal part of life, but so is letting it go. Therefore, while I process pain, I know it won’t last forever – because I know there’s an intrinsic time to release it.

Secondly, I strive to be real with myself about who I want to be. Holding on to pain stifles us. I don’t want to be angry or bitter or jaded or emotionally shut off, so I identify what’s holding me back and let go of it.

Thirdly, I work toward learning from my mistakes rather than forever shaming myself. Along the way in life, I’ve been a jerk of a husband, father, friend, and person at times. Getting stuck in my shame from those times wouldn’t improve my behavior or create restitution for others; learning from my behavior does. In this way, moving from shame to accountability allows me to release destructive shame by applying the experience toward growth.

Lastly, I’m adamant in my life that I’m not a victim. Bad things may happen to me beyond my control, but I’m ultimately the one in control. I refuse to let bad circumstances define me. We may be victimized, but we need not be a victim.

When putting all of this together, a clear pattern emerges: Mark is responsible for Mark. That empowerment means that I control the effect that circumstances have on me. I’ve done well with being decisive toward moving beyond the past, but I’m still cognizant of my falling into unconstructive patterns from time to time – practice makes perfect, I hope. What I know is that letting go of negativity surrounding our past is among the best gifts that we can give ourselves, so I continue evolving that gift.

The fact is, holding on to emotional wounds ultimately only hurts us, preventing us from being who we can be. Fortunately, we need not travel to the ends of the Earth to release it. Indeed, we need not look any farther than ourselves, where we have extraordinary control over our lives and emotions. I say, let us take a firm grip of the shift knob and ensure that our lives are in Drive, emotional wounds behind us, healed.

Arguing Against Arguing

By Mark E. Smith

Have you ever argued with your spouse or partner, maybe someone not so close, maybe even a stranger in public? Did you ever stop to truly consider what the arguments became about?

I have done all of the above, and while there’s no argument I’m proud of – they all left me feeling ashamed of my own behavior – I deeply value what I’ve learned from such taxing experiences.

See, while arguments always start out with a causation, even if it’s unwarranted or irrational, they quickly spiral to the singular intention of both people trying to simply prove that they are right and the other is wrong. You’re likely thinking, Mark, that’s the very definition of an argument – duh!

Actually, no. The definition of an argument is persuading others that an action or idea is right or wrong. What we tend to do, however, is devolve that intention away from the original topic and it becomes I’m right, you’re wrong, period, by both people and the original topic is lost. Put simply, arguments typically shift from that to you.

A lot of us can relate to this by thinking back to an argument where we genuinely forgot what started the argument – but we were furious at the other person, no less. We may chuckle about it later in realizing the absurdity, but it’s hard to stop the slippery slope when we’re on it – in an argument, that is.

The key is to recognize the nature of it all – and strive to avoid the pitfalls. The fact is, if we follow the course of a typical argument, both people are simply wrong in the end. No one wins; everyone loses. A solution becomes impossible, destruction assured.

This isn’t saying that there’s no place for disagreement or that relationships and interactions with others are always harmonious. Of course disagreements arise in our lives. However, let us address them in constructive ways rather than engaging in the destructive. Let us solve problems rather than escalating them. Let us not fall into the trap of arguing, but into the humility of discussing.

If we know this universal truth – that there’s an intrinsic nature of arguments devolving to a damaging degree, and avoiding it – we’re not just closer to actually solving the true issue at hand, but, more importantly, preserving the dignity of all. Maybe we all should argue against arguing.

Equipped and Prepared

By Mark E. Smith

When we face tragedy, trauma, or adversity, the question that many default to is, Why me?

While it’s an understandable initial response – after all, no one wants to experience life’s toughest times – there’s no way to answer that question.

Or, is there?

What I’ve witnessed time and time again in life is that the answer to Why me? is a straightforward one: Because you’re being equipped and prepared for the unforeseen to come.

At my birth, I wasn’t breathing, my body in life-threatening distress. I entered this life in a traumatic state and survived. That set into motion a life of cerebral palsy, which brought its own challenges. However, no one could have fathomed just what I was being equipped and prepared for.

See, some four decades later, I once again wasn’t breathing, once again fighting for my life. An intubation tube from which I was breathing during a surgery kinked in my airway, cutting off my air supply. An emergency tracheotomy was performed, allowing me to breathe – a harrowing eight-minute battle to save my life, I was later told.

I awoke in a different world – on a ventilator, unable to speak, my body far beyond my control, all in distress, just hanging on for life.

Over the following weeks, it took all I had to survive. Yet, there was an intrinsic familiarity to it all. There was a strength that I can now look back upon and contextualize. My body was in a place it had been before. I was long ago equipped and prepared to handle this.

Fortunately, most haven’t battled for life twice in such an uncanny way. But, we can all look back on any number of circumstances in our lives and connect the dots as to how they equipped and prepared us for future vying and victory. Maybe it was a job loss where it seemed like your world collapsed in an instant, but you went on to a better job, with a new understanding that you could come back from a seeming career setback even stronger. Perhaps it was an excruciatingly painful breakup from a relationship, from which you felt your heart would never recover, but you grew to understand what you truly wanted in a relationship and went on to find the love of your life. The list goes on. However, it all ties into the perspective that nothing happens to us, but for us. No, we usually don’t see the reasoning behind it in the midst of crisis, but it eventually reveals itself.

What have you struggled with or are struggling with? Could it be that you’re being equipped and prepared to be great when it matters most, that there is a reason behind it?

Indeed, there is. Let us shift from asking Why me? in times of adversity and take comfort in knowing that we are being equipped and prepared for whatever life has in store. Let us recognize that our seemingly weakest moments actually fortify us in ways that aren’t otherwise possible – we are stronger because of it. We are equipped and prepared!

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!

Trusting the Pathway

path

By Mark E. Smith

In college, I took a course, The Bible as Literature. While I understand that such a course’s secular treatment of a sacred text may not sit well with all, it did make the Bible accessible to many students unfamiliar with the writings. For me, as one who was raised Catholic, the class converted what I’d only known as a child as a daunting, abstract text and allowed me to see relevance in its words to my own life.

Recently, Romans 5 came up in conversation, and when I looked it up, eying it from both spiritual and secular perspectives, I was touched by a verse that I recognized of a profound truth:

…We also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. (Romans 5:2-4)

Think about that. Suffering leads to perseverance, which builds character, which leads to hope. In facing life’s trials and tribulations, I’ve realized this is the exact path that many of us have followed during extreme adversity. Suffering brings out our perseverance, which builds our character and results in hope.

What is most powerful about recognizing this intrinsic process is that it adds tremendous comfort in the face of adversity. I don’t know why this is happening, but I know where it’s leading me.

I spoke with my father-in-law, who’s a minister, and he made a relatable comment that boils down to, we may not like the process at times, but the reason behind it and the outcome are worth it.

At points in our lives, we’re going to question adversity and suffering. Having an answer as to its purpose can serve as a tremendous coping mechanism. Or, maybe when we reach that insight, it’s simply perseverance, character, and hope kicking in – right on queue.