gratitude – PowerchairDiaries

Sometime Around 2 A.M.

By Mark E. Smith

I don’t know what time it is? I guess it’s sometime around 2 a.m. It was mere weeks ago that I could simply roll over or sit up and look at the clock. Not anymore.

I awake several times per night like this now, in pain from not being able to roll or shift positions myself. I lay awake until the pain is unbearable, then I wake my wife. Sweetie, can you please roll me over?

Age, disability, illness and surgery has all taken its toll – and much of my physical abilities and health with it.
I suppose I should be devastated, even bitter toward it all. I’ve had to live with cerebral palsy my whole life, now this – how can life be so cruel?

Yet, I don’t feel that way at all. In fact, I feel the opposite – blessed. No, I don’t want any of this, not the debilitating illness or chronic pain or loss of abilities. But, it’s not my call. It’s aging and illness and life at play. Resenting it all wouldn’t change anything other than adding a self-defeating tail spin to my life. Acceptance is liberating.

My wife is right next to me, touching me, side-by-side. We have a king-size bed, and she insists that I somehow end up on her side no matter what. Yet, in reality, I don’t think she’d want it any other way – close, touching, reassuring, especially now, for the both of us.

Life is about change, and questioning it or resenting it over the long run only defeats us. I’m not saying taking time to acknowledge loss or express our feelings toward adverse changes isn’t normal or healthy – absolutely it is. However, there has to be an expiration date for it, or it will consume our lives more adversely than the actual changes.

I’m to the point where my pain is unbearable and I need my wife’s help rolling over. I gently awaken her, and she softly rolls me over, asking in the darkness if I need anything else?

I answer, no. My answer applies to both the immediate and my life in whole. In the silence of the night, I think about my wife and our daughters and the blessed life I have – and I recognize that I’ve never had more.

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.

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.

Welcome to the Here and Now

By Mark E. Smith

As part of the disability community, I’ve long known those with progressive and terminal conditions. While not everyone handles such life paths the same, I’ve been struck by those who express and experience absolute joy while living with their conditions. I’ve thought a lot – and talked with some – about how any of us can experience true joy in the face of exceptional adversity? What I’ve learned, and subsequently practice, is an approach to life that I’ve seen bring the greatest fulfillment, one that we all can live by.

Progressive and terminal conditions can be tough for many because one can get caught up in dwelling on the past while fearing the future. There’s not much room in there for joy in the present when the past and future weigh on us so heavily. What’s more, this very human emotional dynamic isn’t exclusive to a progressive or terminal condition. Many of us can find ourselves dwelling on the past while worrying about the future based on countless life circumstances. So, how do we find joy amidst such daunting circumstances?

The key is found in living emotionally present during any given moment. It sounds like psychological or philosophical babble. But, truly, the past and future aren’t real in the present. What’s happened is past, and what may happen is the future. Yet, neither is occurring now. The only state that we’re truly in and can work with is the present. Therefore, if we want to experience joy regardless of the circumstances that have or may affect us, we simply need to be emotionally present, in the here and now.

For me, this approach to life has allowed me to not only release the past and worry far less about the future, but most importantly, it’s allowed me to savor more moments in my life, being totally emotionally present. This isn’t to say I never think about the past or consider the future. However, there’s a difference between dwelling on the past versus remembering it, just as there’s a difference between worrying about the future versus setting goals or recognizing objectives. The profound advantage to being emotionally present in any circumstance is that we can fully experience the power of a moment without interference. We can purely revel in what is – for that’s truly all there is.

I recall being in a hospital ICU after a major surgery. A lot went wrong, was going wrong, and my future was uncertain. I was with my wife and oldest daughter, and in that moment, I genuinely didn’t have a care in the world. I was the luckiest guy alive because I was with the two loves of my life. What happened or may happen didn’t matter. I was with my wife and daughter, and that was reality, that was the beauty of life surrounding me in the moment.

I apply this same principle to my everyday life. No matter what I’m doing, I strive to be emotionally present, where multi-tasking of emotions rarely exist. Whether I’m talking to my daughter or a stranger, and everyone in-between, I immerse myself in that connection. If I’m at work, I entirely focus on the task at hand. And, as far as going to bed or waking up upset… well… it doesn’t happen, as I’m just thrilled to be with my soul mate, in the present. No, I’m not perfect at any of this – we all have emotions that catch us off guard – but I’m pretty good at being present because I know how it’s amplified the quality of my life and my connections with those around me.

The benefits of being emotionally present toward joy are easy to see. However, it also proves beneficial during very difficult situations. So often during difficult times or decisions our thinking is skewed by past emotions coming up or fear of the future. Yet, when we can be emotionally present and focus solely on the here and now, we can make far more rational decisions. Again, we should focus less on what was and what may be, and more on what is.

None of our lives are perfect. Some of our lives can, in fact, read as nightmares. Yet, if we live with emotional presence, where we keep our pasts and futures in check, choosing to be emotionally present, moment by moment, it’s astounding how many of the moments in our lives reveal themselves as breathtakingly beautiful.

Camp Gratitude

By Mark E. Smith

At this writing, I’ve just spent a week at a summer camp full of kids between the ages of eight and seventeen. It had all you’d expect at summer camp – swimming, fishing, boating, arts-and-crafts, horseback riding, and on and on.

However, what was different than any camp I’ve experienced was what occurred at one o’clock every afternoon. The campers – who happen to have a myriad of physical disabilities – gathered in the lodge after lunch for “Pat-on-the-Back Time.” It really should be called “Gratitude Time” because for one-half hour, kids raise their hands and express their gratitude for their peers and counselors at camp, as well as their experiences.

As you might imagine, for us adults, it was a profoundly moving experience each afternoon. To witness children with severe disabilities – many of whom having undergone countless surgeries, many using wheelchairs, all facing exceptional daily adversities – express gratitude from the heart was breathtaking. After all, such children have been through a lot, and face exceptional challenges every day; yet, their expressions of gratitude are unyielding.

Now, you may find those sentiments extraordinary, that children facing such adversities can express such unyielding gratitude toward even the smallest of deed done by another or the most typical of activity – an eight-year-old thanking her counselor for holding her hand in the swimming pool. However, as I sat and listened to their outpouring of gratitude each day, I found the children teaching me more than I ever expected.

See, their gratitude, while clearly an exception in our society, should be the rule. How many times in our careers do we hear colleagues diminishing each other instead of praising? How many times do our children have an accomplishment, and we don’t acknowledge it? How often do we go for days, months, years without complimenting our spouse? How often do we walk away from a cashier or waiter or bus driver without saying thank you? How often do we spend our time wanting instead of appreciating? How often do we dwell on negatives instead of embracing positives? The answer for most is, more often than not. It’s the society we live in – just look around – and it pulls us all down.

The fact is, there’s something really wrong when we, as adults, have to go to summer camp and learn from children how to be more heartfelt individuals of gratitude. And, yet, there’s hope in it all. If children of such adversities can express such appreciation, gratitude and love… we all can.

Meals or Feasts?

By Mark E. Smith

My life has been somewhat extraordinary in that I’ve known both sides of human experience – that is, what it’s like to live with exceptional adversity versus what it’s like to experience great fortune.

However, while my own life has made me acutely aware of extremes, it’s the individuals I encounter that have raised a profound question for me. In parts of my life, I interact with those facing tremendous adversity, while in others, I interact with those of great fortune. Overall, I’ve witnessed that people are people, and no matter how different two individuals’ life paths are, there’s a uniting humanity – people are people.

Yet, I’ve also witnessed a juxtaposition that’s intrigued me. If I shared that I knew a 40-year-old mother with progressing ALS who was bitter at the world because she would not live to see her children graduate high school, we all could empathize with her. On the other hand, if I shared that I knew a 40-year-old mother of great health and wealth who was dedicated to serving her community, we could empathize with her, as well. In both these scenarios, we could say that both women are doing the best that they can. And, indeed, in some form, I’ve known these women – and likewise men in the same situations – many times over.

But, here’s where the intriguing juxtaposition comes in. I similarly meet those facing tremendous adversity – literally that 40-year-old mother dying of ALS – who approaches every day with grace and joy, appreciative regardless of the devastating blow life has dealt. Meanwhile, I encounter those who are extremely fortunate – with health and wealth and thriving lives – who are bitter, jaded, living with a miserable sense of entitlement, as if the world owes them. How is it, then, that someone facing unimaginable adversity in life can live with such grace, while by contrast, I’ve more than once witnessed someone of great health and wealth throw a tantrum over the smallest, most trivial circumstance? How can this juxtaposition logically occur?

The answer is, gratitude. See, gratitude is the great equalizer – and you have it or you don’t. If you have it, it’s irrelevant what your situation is in life, as you’re grateful regardless of any circumstance. However, if you don’t have gratitude, you’ll conversely be bitter and jaded no matter how fortunate your plight. In this way, what life deals us has no bearing on our outlook – unimaginable adversity or great fortune are of no matter. What dictates our perspectives is whether we have… gratitude.

Author Melody Beattie writes, “Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend….”

Therefore, if we are to understand the true origins of fulfillment in our lives and whether we find true contentment, we don’t need to weigh the scales of adversity versus good fortune. Rather, to understand fulfillment and contentment in our lives, we merely need to consider the levels of sincere gratitude we possess.

Sinking Ships Save Lives

By Mark E. Smith

I was at my boat dealership readying my boat for its summer launch, when I heard a commotion. It was a guy yelling about some issue with his $90,000 boat, dry-docked next to his Range Rover, with his blond, breast-implanted wife and couple of kids standing beside him. As I tuned in to his yelling, he was furious that the cabin on his boat hadn’t been vacuumed, part of the dealership’s summer launch package. And, as I waxed my boat, I thought, Oh joy – another A-hole who has no clue as to how blessed he is. I should go punch him in the face, and teach him a bit about appreciating life via a broken nose.

Now, there’s a good bet that a tool like him is in debt up to his ears. Still, life has to be a piece of cake when you have luxuries like a sport cruiser, high-end SUV, and breast implants. But, most importantly, everyone in his family seemed strikingly healthy – the biggest blessing of all. Yet, Mr. Tool seemed oblivious to all of it, where apparently his life is so easy – read that, so lacking of appreciation – that his only concern is screaming at a 19-year-old, who makes $8 an hour working his ass off – about his boat not being vacuumed. Again, I say that we tattoo A-hole on Mr. Tool’s forehead just to forewarn everyone he encounters.

Yet, Mr. Tool isn’t unique. We run into people everyday who have zero appreciation for all that’s in their lives. I was in line at Wal-Mart, and heard the clerk ask each person in front of me how he or she was? Each person had something negative to say, whining about this or that. I thought to myself, You’re healthy enough to to be shopping, with enough money to pay for groceries – life is great, so quit your complaining.

So, when I got to the check-out, I asked the clerk if anyone ever gave her an enthusiastic, positive response? Her answer, “Never – you’d be amazed at how miserable people are.”

No I wouldn’t. I know countless people with everything to be thankful for; yet, they make themselves miserable based on a looming lack of appreciation. People with committed marriages are miserable. People with great jobs are miserable. People with supportive families are miserable. People in great health are miserable. In plain terms, people who are blessed beyond belief will tell you how terrible their lives are – and I find it a repugnant mindset.

All of this led me to the question of, Why are people who are so fortunate so miserable and ungrateful?

It turns out that there’s a scientific basis for misery and a lack of appreciation by those who are truly blessed with love, success, and financial security. An article in the August 2010 issue of Psychological Science demonstrates that while the various forms of success in our lives can elevate us by class, status, and wealth, it simultaneously can impair our ability to enjoy or appreciate life, itself. It turns out that when we experience the success that life has to offer, it can numb us toward savoring the seemingly smaller – but ultimately important – parts of life, like being grateful for life, itself. As the study describes, it’s not unlike that “new car feeling,” where most appreciate a new car for a few weeks, but then lose gratitude toward it. Mr. Tool being pissed about his boat is merely emblematic that he’s lost the ability to realize how blessed he is in the most important ways, as with having a loving wife and two healthy kids. He’s allowed himself to lose humility and perspective by being blinded by good fortune.

The key, then, for all of us is to maintain a sense of perspective on our lives. Using myself as an example, I enjoy the material things I’ve earned – and feel blessed to have them, genuinely appreciating aspects like my career, house, boat, and van. However, truly, if I lost everything I have, I’d still be fulfilled as long as those close to me were healthy and happy, with my daughter being number one. You can fire me; burn down my house down; sink my boat; and, crash my van. Heck, give me a horrible disease in addition to my cerebral palsy. But, as long as my daughter is healthy and happy, I have no right to complain about anything, ever.

And, that’s what we all need to do at this moment: Remind ourselves of how blessed we are at the core levels of our lives, and approach the rest of life with a genuine sense of gratitude, right down to just being thrilled to be in line at Wal-Mart with a bunch of miserable people.