helping others – Page 3 – PowerchairDiaries

Answering the Phone – Again

By Mark E. Smith

For 17 years, I’ve worked in various roles within a power wheelchair and scooter manufacturer, most recently in the capacity as a general manager. That seems like a straight-forward career, doesn’t it? After all, how complex can wheelchairs and scooters and accompanying products be?

The answer is, quite. See, ultimately, I don’t just work with mobility technology, but the people who use it – and that is phenomenally complex. Living with disability ranges from complicated at best, to harrowing at worst, and the people I serve experience some of life’s most difficult emotions. To further this complexity, no two people I serve are in the same circumstance. Day to day, I deal with all socio-economic positions, the widest range of medical needs, and, alas, an infinite number of perspectives on living with disability. As I bluntly put it, individuals I serve can range from frustrating to heart-wrenching. It is a role, however, I cherish because as one with a disability myself, I often feel that I’m in the trenches right next to those I serve.

Interestingly, my career has paralleled the growth of the Internet and e-commerce, where virtually all of those I serve reach out to me electronically, from email to Facebook to texting – the ways of 21-century communication. If someone is in need of my assistance, it lands as a font in front of me on a screen. While digital correspondence is effective – and has allowed me to serve countless individuals over the years – I recently realized that it wasn’t fully meeting the needs of many I serve. Yes, it’s convenient, gets a point across, and works 24 hours per day. However, I’ve long found myself reading between the lines of digital correspondence. Sure, wheelchair problems are easily written. But, often there are hints of issues beyond a rattling wheel or growling motor. Topics from I don’t have anyone to help me to I lost my health insurance creep into the correspondences. So, I wondered, how could I better serve individuals beyond what’s volleyed in text on a screen? How could I get more of individuals’ stories in order to both better meet their mobility needs and connect with them, person-to-person?

I did something radical – I literally went backward with technology in order to improve my relations with those I serve. One Monday morning, I put a stake in the ground and vowed that my response to any electronic correspondence I received was going to be, “Please call me at your earliest convenience, and I’ll be glad to help.” …And it worked. My office and cell phone began ringing, and not only was I able to more quickly, accurately diagnose individuals’ mobility needs, but I was able to get to know them on a very real, personal level, and that, too, allowed me to better serve them.

The result has been astounding. I still hear heart-wrenching stories, but not so much anger or frustrations, and more importantly, I hear the entirety of individuals’ experiences. Each call serves someone’s mobility needs, but also connects us on a far more interpersonal level than digital correspondence. What I’ve learned is that the greatest technologies of all are the ones that best allow us to truly connect in our shared humanity.

Dropping the F-Bomb: Fear

By Mark E. Smith

Have you ever thought about the power that fear has in your life? No, I don’t mean a fear such as that of public speaking or bugs or heights – those are all trivial. I’m speaking of fears that truly impact us: the fear to express ourselves to our partners; the fear of expressing vulnerabilities; the fear to truly just be who we are; and other such fears that emotionally stifle us.

And, it’s painful and debilitating, isn’t it? How many of us have been in a marriage or relationship, and have an inexplicable – or, sometimes, rightful – fear of expressing our needs or desires to our partners? We lay in bed at night, feeling alone, and our hearts just ache, don’t they?

Or, how many of us are living with trauma in our past of some kind, and we fear sharing it with anyone? The result is we feel isolated, needing to keep people at arm’s length, don’t we?

Or, how many of us are dissatisfied with our life paths overall, but we fear telling anyone because we don’t want to rock the boat or upset those around us? It leaves us trapped, doesn’t it?

I’ve faced many challenges in my life, but the absolute most difficult has been conquering such deep emotional fears of expression. And, it remains an ongoing process, where bursts of courage have been allowing me to slowly become more and more open over the years – read that, more honest with myself and those around me. I’ve been on a deliberate and liberating path from emotionally fearful to fearless.

In knowing my struggles and progress in this very personal emotional battle, I recently had the privilege of having a friend confide his fear to me. He was diagnosed two years ago with ALS, which has progressed very rapidly, his now using a power wheelchair and losing physical abilities day-by-day till he passes away. However, he’s been the picture of strength, not only for his wife and children, but for his whole community.

Despite his outward portrayal, he shared with me that he’s been keeping a secret, one he fears telling anyone. As I listened, he paused and said just two words: I’m scared.

Everyone handles adversity in his or her own way. However, any reasonable person who’s slowly dying, leaving behind a spouse and children has every reason to be scared. Yet, out of fear of not being “the strong one” that all labeled him as, he was terrified to express his real emotion, not wanting to let others down, as he put it. Meanwhile, he was struggling on this frightening journey internally alone – fear had him trapped within himself.

I asked, if he was to put his fear aside and share those two words – I’m scared – with his wife, how would she react? His answer was breathtaking: I know she’d reply, “I’m scared, too….”

I haven’t learned if he was able to ever have that conversation with his wife, but I hope he did because I trust it would bring them closer together and allow them to be more open in supporting each other in this process. You can’t have genuinely heartfelt conversations as long as you have fear.

See, that’s what overcoming such fear does – it opens us up. Sometimes we receive a positive response to releasing our deepest fears into the world, while other times a disappointing response. However, the reward of expressing ourselves, despite our fears, is in our actions, not the result. The power, for example, in coming out as gay isn’t in seeking approval; rather, it’s about not living in fear of being oneself. This equally applies to no matter what we’re keeping inside. Expression over fear liberates.

What I’ve learned in my own process – from my relationships to my career – is that life is more authentic when I choose to live openly as myself rather than stifled by fear.

Expressing Truth in Struggles

By Mark E. Smith

I had the privilege of Ms. Wheelchair International, Yvette Pegues, visiting recently. She’s one, like many of us, who’s not only faced challenges, but continues facing them on a daily basis. As I always value, our conversations became deep and heartfelt very quickly, and she asked me a profound question: How do we express the truth of our struggles?

It’s a question many of us who struggle – whether physically, emotionally or mentally – face every day. After all, how candid should we be about our struggles, and with whom?

For me, I see it as a vital balance. We all have those in our lives who pour out every little problem to everyone they meet. There’s nothing authentic about ”woe-is-me” individuals. However, what is authentic is sharing valid, appropriate truth about our struggles. See, when we genuinely have struggles in our lives, it can feel natural to keep them to ourselves because… well… we don’t want to feel like we’re playing the woe-is-me card. Yet, not only do we benefit from being honest about our struggles, but it can also serve others. The only way others can truly know and help us is by our letting them know of our struggles, and in that process it can be remarkably comforting to others because they, too, have their struggles. For all of us, there’s power in not feeling alone – and that’s what the process of sharing the truth of our struggles does.

My wife and I were at church one Sunday, and a parishioner came up to us and said, “I know it took you more than most to get here this morning, and I want you to know I appreciate that.” His words were kind and empathetic – and remarkably true. He had to have known of disability experience, as it does take many of us hours to get ready in the morning. Nevertheless, what touched me was his emotional extension, having the heart to subtly say to me, a stranger, I know the truth of your struggles.

For those of us who know struggles in our own lives, we can be remarkably intuitive in recognizing it in others. Expressing the truth of struggles that we see in another can be an ultimate act of compassion and connection. No, we don’t need to give a drawn-out soliloquy. Rather a simple acknowledgement that simply says, I truly see you, and you’re not alone in this… can take weight off of the spirit.

Let us not just have the courage to express the truth of our own struggles, but to also have the courage to express the truth of others’ struggles, with compassion and connection. Ultimately, let expressing the truth of our struggles not be about us, but togetherness.

Life Vows

By Mark E. Smith

We’ve all heard at least some version of among the most traditional wedding vows in modern western culture:

I offer you my solemn vow to be your faithful partner in sickness and in health, in good times and in bad, and in joy as well as in sorrow. I promise to love you unconditionally, to support you in your goals, to honor and respect you, to laugh with you and cry with you, and to cherish you for as long as we both shall live.

And, for those among us who are married, ideally we live up to those vows, at minimum.

However, here’s an intriguing question – why don’t we practice such vows toward ourselves, as individuals? Put simply, why are we so reluctant to apply such unconditional love to ourselves? Why don’t we consistently honor ourselves in sickness and in health, in good times and in bad, and in joy as well as in sorrow, loving ourselves, supporting ourselves in our goals, to honor and respect ourselves, to cherish ourselves?

I see the struggles of this every day, on a multitude of levels, from family to friends to within the community. Countless life experiences can throw us into emotional tail spins, where our identity – namely, self-worth – degrades. Why is that? After all, when someone we love faces challenges, we embrace, love and respect them. We’re remarkably unconditional when it comes to applying the practice of vows not just toward our spouses, but toward everyone around us. Yet, we’re not so generous toward ourselves, are we? We can see the beauty in others, but not ourselves. We can note the strength in others, but not ourselves. We can compliment others, but not ourselves. And, alas, we can love others unconditionally, but not ourselves.

A lot of this is conditioned into us, whether by a society that suggests it in so many ways – from airbrushed models in magazines to the notion of thinking highly of oneself is “arrogant” – or by being emotionally abused and convinced we’re not worthy. In fact, a startling statistic in the U.S. is that 60% of us have been emotionally abused to a degree that diminishes our self-esteem. When we add all this up, it’s clear that we live in a society where little priority is put on valuing “oneself” in sickness and in health, in good times and in bad, and in joy as well as in sorrow. The fact is, many of us are conditioned to not feel good enough, no matter the circumstance.

And, it has to stop. We owe it not just to our spouses and others to practice vows of unconditional love and acceptance, but to ourselves. None of us are perfect, but why not commend ourselves for trying our best at what we do? We don’t invite adversity in our lives, so why not allow ourselves to recognize all is not our fault? We all have weaknesses, but why not be proud of our strengths? No one is better than another, but why not embrace our uniqueness? We love others, so why not love ourselves?

As one who’s struggled with all of the above, I can tell you that making that shift – that is, making the vow to love and honor yourself in sickness and in health, in good times and in bad, and in joy as well as in sorrow – doesn’t just improve your life, but also everyone’s life around you. When we humbly understand all that we are worthy of, it makes it so much easier to smile and offer all of us to others in ways that enrich the lives of both.

I know it’s extremely difficult to heal all of the wounds that blur our vision to how amazing we each are, how the words of affirmation we hear from those who know our beauty somehow don’t appear to us in a mirror. And, yet, the true “us” is there, to love in sickness and in health, in good times and in bad, and in joy as well as in sorrow. Yes, it’s in honoring such vows toward ourselves that not only elevates our lives, but it’s also the key to elevating our vows toward all others. Let us vow to love and cherish – including ourselves.

A $20 Christmas

By Mark E. Smith

Through my six-year-old eyes, it seemed like a Christmas miracle. One day it was a drugstore parking lot, and the next eve it was a forest of Christmas trees, with strung lights and sawdust covering the pavement like snow. Christmas tree lots have long been common; but. based on my age and where my family was in the course of our lives that year, made that one tree lot appear as a beacon of hope to me when I first saw it through the window of my mother’s old station wagon.

It was a tough year for my mother, brother and me. No, it wasn’t tougher than any other; it was just tougher in a different way. We were used to being broke. We were used to volatility with my parents. And, we were used to not having much of anything, including at Christmas. However, that year, my father was long gone, my mother was drinking more than ever, and the only good fortune I recall was that a church left several boxes of food on our porch at our little rental on Robinson Street.

But, my mother somehow saved $20, which wasn’t just a lot of money in 1977, but a fortune to us. She loaded my brother and me in the station wagon and drove us to that magical Christmas tree lot. It would be a great Christmas after all – food and a tree. We didn’t want for anything else because just those two aspects, we were warned by our mother weeks earlier, may not happen that year.

We picked out a wonderful tree, and as my mother reached in her jeans’ pocket to get the $20, it wasn’t there. She searched her other pockets, then her purse, then the car, then the lot. But, the $20 dollars was gone. She’d downed a half-pint of vodka before leaving the house, and as the frantic search for the $20 transpired, she became increasingly drunk – stumbling, crying. The gentleman at the Christmas tree lot remained silent as she begged him to let her take the tree. My brother and I likewise remained silent as Mom drove us home without a tree.

Christmas was never normal in our family before or after that. My mother was never sober, and while my friends’ trees were piled with presents, ours was often scarce. Still, we were lucky to get a new winter coat and school clothes most years, sometimes something we wanted, as well. Mom at least always tried in her own ways.

Still, I can never defend my mother’s life choices. Her never being sober on a single Christmas will always be inexcusable to me as a son and a father. Yet, all of those Christmases growing up with my mother taught me invaluable lessons about what Christmas should be. Christmas should be about joy, not struggle. Christmas should be about people, not presents. And, Christmas should be about peace, not volatility. I didn’t have those growing up, but I’ve been blessed in my fatherhood that I’ve been able to bring those attributes to my own family’s Christmases – and along with the love of those around me, a warm meal and decorated tree remain all I could ever wish for. Like my mother, I, too, try in my own ways.

Emily’s TED Talk: Video

Pursuing the Ultimate in Failure

By Mark E. Smith

I don’t know if having my physical disability created my thirst for that which is difficult, or if it’s uncanny luck that as one who thrives off of that which is difficult, I was bestowed disability? Regardless, the two have formed an incredible synergy that’s fueled my life since I was a young child.

A big part of it is that, as a result, failure is innate to me. By physical nature of my disability, I fail a lot – sometimes as simple as tying my shoes or transferring from my wheelchair to the commode. Yet, what it’s taught me is that when we fail a lot, we counter-intuitively gain a confidence toward trying. If I do this, what’s the worst that can happen? I’ll fail. So what – I fail every day. But, I also have the chance to succeed. In this way, if we’re not afraid to fail, we’ll try anything, and when we’re that bold, it’s bound to lead to successes.

I witnessed this in action with my 19-year-old daughter recently. She took the bold step of doing a TED talk. Once you are selected, it takes months of work to prepare for the talk on stage. Then, when you’re up there in front of a live audience, with a huge production crew filming you, really it’s a chance for failure on the grandest scale. Some people try to cheat the risk of failure, wanting the glory without the guts. For example, at my daughter’s TED event, some other speakers used notes. However, you can’t fake risking failure, and when we do, we cheat ourselves in the end by not giving our all.

To the contrary, my daughter got up on stage with nothing but a microphone and the willingness to fail. She knew the obligation she had to herself and the audience to be authentic in every word that came not from shaky notes but the depth of her sincere heart. She was willing to risk failure in a shot at positively impacting the lives of countless others. And, that she did, arguably delivering the best performance at the event.

See, what I’ve learned is that the risk of failure shouldn’t deter, but inspire. As the adage goes, we shouldn’t dare to be great; rather, we’re great because we dare. As long as we try with absolute authenticity, we will risk failure while simultaneously setting ourselves up for success. It’s in that process of having the courage to put it all on the line – no matter transferring from a wheelchair to a commode or giving a TED talk – that our character is shown. Let us fail big and succeed even bigger because there’s nothing to gain from the safety of mediocrity….

From Rocks to Balloons

By Mark E. Smith

Why do you eat at your favorite restaurant? Is it the food?

And, what’s been your favorite job? Was it because of the salary?

As different as these two questions seem, the answers are one in the same: the people.

The theme to the television classic, Cheers, where everybody knows your name and they’re always glad you came, tells a life truth – that is, the quality of the people in our lives directly correlates with the ultimate quality of our lives.

From family to friends to colleagues to acquaintances, people in our lives aren’t hard to come by. However, how well do we really vet them? I don’t mean that in a snobbish way, but in a healthy, heartfelt way. Are the people we surround ourselves with bringing positive aspects into our lives or negativity? In fact, even neutrality leans toward negativity because such individuals aren’t enhancing our lives, just existing in it.

My wife and I are working on an ambitious personal project, and it’s required us to assemble a team of varied professionals. Competency is a given, but we’ve also understood that in order for the project to succeed, we needed to assemble the kindest, most empathetic souls. And, it’s worked. Slowly, we’ve seen this diverse cast of characters come together who are truly loving, supportive people. Every get together just elevates everyone’s spirits. The project is the project, but it’s the quality of the people that are elevating not just its success, but all of our lives in the process.

Yet, there’s a process to having quality people in our lives, an awareness that has to occur, especially with those we spend a lot of time with. Not everyone is a right fit. How do we know? We feel it. There are those in our lives who bring an incredible spirit that leaves us feeling great, and others who emotionally pull us down. For me, I go by my “hug factor” – that is, if I feel the natural draw to hug someone after spending time together, that’s someone who’s a great force to have in my life. However, if someone makes me feel some sort of negativity, I know it’s someone to keep at arms length or eliminate altogether from my life. I want to hold on to helium balloons that uplift, not rocks that sink. I likewise, though, strive to equally be a helium balloon to others – and, man, if you get two helium balloons together, a sky of unlimited possibilities is literally yours.

Sometimes this process is innate when we’re lucky; sometimes it takes awareness, which is most common; and, sometimes it requires difficult decisions, setting boundaries. My wife and I have had someone on our project team who by profession had to be involved, but has become a very negative force. No matter the kindness all have extended, this individual has ticked everyone off with rude comments and an overall negative disposition. Needless to say, this individual won’t be invited to the wrap-up party. Yes, we should always extend empathy, but we likewise shouldn’t allow negative individuals to pull us down. And, in leadership roles of groups, it’s vital for morale not to allow one individual to diminish the camaraderie of the group.

Ultimately, we can’t always control who’s in our lives. Yet, we can control how we recognize and interact with them. Observe how those around you effect you and others, and realize that the quality of those in your life directly correlates with the quality of your life. So, let the rocks go, and grab on to those helium balloons. They will elevate your life, as you do theirs.

The Power of Voice

By Mark E. Smith

What is the difference between speech and voice? Speech is the articulation of sound, and when those sounds are put together in a normative way, the ability to communicate audibly with others occurs.

However, speech in our lives is very different than voice. Speech is descriptive, whereas voice is emotive. Speech says what’s obvious, voice expresses what’s not. Speech says, My parents passed away when I was in my 30s. Voice says, Although my relationship with both my parents was never healthy, and I long ago came to terms with that, it remains a surreal thought over a decade later that they’re not on this Earth any more – the phone will never ring with a long-overdue call from either of them. Indeed, it’s voice that gives us the ability to express ourselves far beyond the basics of speech.

Interestingly, in knowing peers with progressive conditions – ALS, MS, and such – who “lose their speech,” they’ve often shared after moving to a communication device that it wasn’t the literal loss of speech that was so devastating, but the loss of voice – that is, the loss of communicating emotion to others. It’s one level to lose the ability to ask for a glass of water; however, it’s a profoundly deeper level to lose the ability to spontaneously say I love you to a spouse, or tell a daughter how proud of her you are. That’s voice.

Regardless of our situations, using our voice can likewise be a struggle. The foremost reason we squelch our voice – albeit in the intimacy of a relationship or the public venue of a stage – is out of fear of rejection. Why don’t we tell our partners how we’re really feeling? Why don’t we speak up in that class, meeting or crowd? Why do we prevent ourselves from expressing our voice – what we really want to say – in any circumstance?

The answer is, we fear the rejection that may come with using our voice. However, here’s what’s amazing: we’re never rejected in the end when it comes to using our voice. It may take initial courage to use our voice – sometimes stomach-wrenching courage – but the result is empowerment.

Now, using our voice can seem dangerous. Do I really want to tell my spouse I’m unhappy in our relationship? However, nothing can change unless we change it, and our voice is the ultimate tool for that. Situations may be difficult, but squelching our voice hurts us more. There’s nothing more empowering and liberating in the end than expressing our voice.

The other miraculous effect of voice is that it unites. Shame, guilt, embarrassment, sadness can all squelch our voice. Yet, using our voice to openly share the origins of such emotions can not only, again, liberate us, but can help others. We all have a common humanity, and we’re not alone in our experiences – but we can feel alone. Voice can be the bridge that not only connects us through shared adversity, but leads us through it. Voice allows us to hear someone else’s story and realize that it’s our story, too – we’re not alone.

Voice is among the most powerful tools that we have. Like all powerful tools, voice can seem scary to use. Yet, when we have the courage to use our voice in sincere, constructive ways, it’s life-changing – both for us and others. After all, when we share our voice, we share our common humanity.

Faith, Not Sight

By Mark E. Smith

I don’t know how it will all workout out. But, I know that it will.

See, what I’ve learned from living through adversity is that it shouldn’t be feared, but trusted. We may not see or understand it in the beginning, but there’s purpose and reason to it. Adversity enters our lives not to defeat, but to empower.

Now, adversity doesn’t work on its own. We must contribute perseverance, tenacity, optimism, introspection, and good ol’ sweat to reap its benefits. However, adversity particularly requires one attribute that we must contribute in order to allow it to elevate us: faith.

Adversity demands that in order to rise with it, we must place faith in it. We must know without a doubt that all happens for a reason. We must believe in a larger purpose. We must trust in ultimate outcomes, even when unknown or unseen. We must have faith in the awe-inspiring power of adversity to serve us, to uplift us, to empower us, to take our lives to heights we never dreamed.

I don’t know where you are in your life. But, from my experience in living through adversity, when you face adversity – and you will, as we all do – it has the power to enrich your life beyond your ultimate wishes. You just have to deliver what it requires – perseverance, tenacity, optimism, introspection, and good ol’ sweat – and a healthy dose of faith that ties it all together. To have faith in adversity is the power to not just survive, but to thrive.