complex rehab technology – PowerchairDiaries

Our Truest Voice

By Mark E. Smith

I recently watched a Ted Talk by a public speaking coach who gave the secrets to being a great speaker. She spoke of relaxed posture. She spoke of soft breathing. She spoke of using your diaphragm. She spoke of controlled speech patterns. And, she spoke of overall body composure. Really, based on all she covered, I should never roll on a stage or speak in front of a group ever again because my cerebral palsy prevents every technique she noted. According to her, I’m the antithesis of a speaker, her worst nightmare.

Yet, over the past 25 years, I’ve spoken to more groups than I can count; I’ve made a remarkable number of TV appearances; and, I speak formally within my company in many capacities every day – all with tremendous efficacy. So, how do I – as one with severe cerebral palsy – defy the rules of the experts and achieve success in my career with so much speaking?

The answer is, I am just me and I always speak from the heart. I don’t need to be a polished robot, nor do I need to try to be someone I can never be. When you hear me speak – sometimes labored, sometimes slurred, sometimes spastic – you’re getting the real me. What greater gift can we give others than the real us, perfectly imperfect, speaking from the heart?

Among the reason why I address groups within our company is because I’m so passionate about what we do and I’m so inspired by the profound difference each employee makes in the lives of our customers. And, so one of my greatest privileges is speaking to groups of our employees, both weekly with new hires, and monthly at our birthday lunch, where we celebrate employees’ birthdays.

It’s my pleasure to share with you one of my talks with our employees. What I want you to note is that I’m clearly not what that speech coach envisioned. Rather, I’m real and imperfect – the two traits that we should all embrace to make a true impact in the lives of others. There’s no one more captivating than who we truly are.

Crank up the volume and enjoy this 12-minute talk:

Rounding Third Base

By Mark E Smith

There’s a counter-intuitive nature to adversity that you can’t understand or appreciate unless you’ve experienced or witnessed it. It’s a realm where, as a complete contradiction, weakness becomes strength, heartbreak becomes joy, tragedy becomes fortune. It’s where life sends you a devastating blow, only to usher in unexpected triumphs of the soul.

Two weeks ago, at this writing, I was involved in the still-unfolding story of a 10-year-old boy. On March 9, 2015, his family was involved in a devastating car accident, the jaws of life employed to remove the 10-year-old. While the parents, fortunately, quickly healed, the 10-year-old was left a C-4 quadriplegic.

Many people casually describe such a spinal cord injury as chest, down paralysis, it’s not. It’s truly chin, down paralysis. See, The fourth cervical vertebra is the level where nerves run to the diaphragm, the main muscle that allows us to breathe. It separates the chest from the abdomen, and when it contracts, air is sucked into the lungs like a bellows. No contraction, no sucking, no breathing. People who survive spinal cord injuries at or above this level need ventilators or machines to breathe.

And, so in a scene unfathomable to most, this 10-year-old boy lay in a hospital bed on a ventilator, his body motionless since March. As the boys of summer ramped up for little league, he wasn’t among them. Then, in the most tangible moment to date of how permanent his disability is, two weeks ago, his new power wheelchair was delivered to his bedside.

No, this wasn’t a typical power wheelchair. It was small, built for his childhood stature. It had a ventilator on the back. And, rather than a hand control, a small joystick was mounted aligned to match his chin and mouth.

It took a lot to get him in the power wheelchair – everything takes a lot at that injury level. Tubes had to be routed, his body positioned and strapped in. And, all the while his parents watched with fear and sorrow in their eyes, not knowing what the outcome would be – what it will ever be. It was a scene no parent can even process.

But, then, amidst all of the logistical and emotional chaos, all became still, quiet. And, with a touch of his lower lip on the joystick, the power chair moved – he moved for the first time in months. A world of tragedy and confinement was transforming before everyone’s eyes into hope and liberation. Soon, he was independently driving up and down the hospital halls, a special version of seeing your son rounding third base.

And, as the clinicians and his parents transferred him back into bed, it finally happened. For the first time since his accident, he screamed and cried. No, not because of the extent of his injury or the realization of all that has been seemingly lost. No, he cried because he wanted his power wheelchair back – it was his freedom – and he wanted to be racing up and down the halls, not back in bed.

Indeed, there is a counter-intuitive nature to adversity, where that 10-year-old boy teaches us that weakness can become strength, heartbreak can become joy, tragedy can become fortune. It’s where life sends you a devastating blow, and you ultimately can experience triumphs of the soul.

A Power Chair, a Warehouse, and Me

By Mark E. Smith

How fortunate are we when life hands us an unyielding passion? And, sometimes life-sustaining passions stem from the most unlikely of sources. In fact, they almost always do.

At the age of five or so, with severe cerebral palsy, I was blessed to have an occupational therapist place me in a power chair, and I went from a world of confinement to one of liberation at the touch of a button. And, I haven’t let off of the joystick since.

Thirty nine years later, I remain not just passionate about power chairs, but obsessed. I know the empowerment they bring, and I live it. My career revolves around power chairs; my personal life revolves around power chairs; and my friends revolve around power chairs.

But, my power chairs aside, here’s what’s amazing about having such a passion: no one can take it away from you because it’s your intrinsic life force. Lot’s of people like what they do. However, a passion is what you love to do, what you’re compelled to do – it’s who you are – and nothing can change that.

So, at 44, after 39 years of using a power chair – despite all of my life’s accomplishments – there’s still that one, ultimate thrill for me: when I have an awesome new power chair, as was the case this past week, where I immediately become that five-year-old again (a secret warehouse as my personal race track), where I feel an awe-inspiring sense of liberation and empowerment that wipes away all of the complexities of life – and I’m just living my passion to the core.

Video

When We’re De-Elevated

Ny Mark E. Smith

It happened in an instant. In fact, as one who doesn’t experience anxiety and is pretty calm in virtually any situation, I began to panic. There’s a horrifyingly surreal quality to suddenly becoming invisible.

My family and I went to see the famed Rockefeller Christmas tree, and it was more crowded than anywhere I’ve ever been. However, because my power wheelchair has an elevating seat that places me at 5’7” tall, I worked my way through the crowd slowly but surely, eye-to-eye with those moving about, where people smiled at me, gingerly moving aside as needed for my 24”-wide power wheelchair to pass.

As we got closer to the tree, the crowd became so dense that I couldn’t see the ground, merely following the heads in front of me. Then, suddenly, my power wheelchair dropped down a medium-height curb leading to the tree. Although the unexpected curb startled me, all was fine and we continued to the tree, shoulder-to-shoulder in the crowd, finishing with a classic family photo of the tree behind us.

We worked our way back through the crowd, and I watched carefully for the curb, knowing that while I couldn’t climb it while elevated, I could lower my seat to standard wheelchair height and safely drive up it. As I reached the curb, the crowd continued flowing around me – that is, until I lowered my seat. Suddenly, at typical wheelchair height, my world changed. It was literally darker, more confined and, most shocking to me, I became invisible. While the crowd was moments earlier around me at standing height, now people were slamming into me, falling on me, oblivious to the fact that I was “down there.” I’d gone from a person in the crowd to suddenly invisible and of no stature simply by lowering my seat.

I yelled to my fiancee for some sort of help and in a panic, I charged the curb, clipping people along the way. For me, in among the rarest moments I’ve experienced, it felt like it was life or death – I was both fighting and fleeing.

Once up the curb, I quickly elevated my seat, and as people immediately began safely flowing back around me, I took a deep breath, composed myself, and realized a universal truth: Being invisible to society is terrifying.

For me, that was an experience I’ve culturally known in other ways as a man with a disability. Beyond the change in physical stature I described with my elevating seat, I’ve more readily been de-elevated in social stature at times. However, the de-elevation of who we are – where we become invisible in an instant based on ignorance, stereotyping and discrimination – is a disturbingly universal one.

Imagine how it feels as an African-American trying to hail a cab in a big city, and empty cabs pass you by. Imagine being gay at a dinner party where rhetoric arises, condemning homosexuality. Imagine being a woman shopping for a car, and the salesman only speaks to your husband. Imagine walking into a clothing store as one of a plus size, and the sales people ignore you. Imagine being in bed with your spouse, and he or she turns his or her back to you as you’re trying to communicate. Or, imagine being homeless on a Los Angeles sidewalk, and no one even looks at you as they pass. So many of us can relate with being de-elevated to invisible.

Yes, I was fortunate amidst the crowd at Rockefeller Center that eve because, at the touch of a button, I elevated back to being seen. However, life for many – including me as one with a disability – often isn’t so easily resolved. When we’re dismissed by others and made to feel invisible, there is no button to push. Rather, the experience of being made invisible based not on our character, but based on the ignorance, stereotyping and discrimination of others… well… just hurts.

The Real Investment of Complex Rehab Technology

By Mark E. Smith

I strive not to overlap my print writing with my online writing because, really, there’s too much of my work floating around the literary world as it is. How much of me can any one reader take? However, I’m crossing my own boundaries and linking you to a very poignant piece in this month’s print edition of Mobility Management Magazine. You’ll learn a bit more about my life journey — and hopefully a bit more about others’ and your own. http://mobilitymgmt.com/Articles/2014/06/01/Complex-Rehab-Technology-Investment.aspx

Complex Rehab and Punk Rock

To me, punk rock is the freedom to create, freedom to be successful, freedom to not be successful, freedom to be who you are. It’s freedom. -Patti Smith

By Mark E. Smith

In finishing up my book on the evolution of complex rehab technology, I’ve read virtually every book and watched every documentary on the evolution of the music genre, punk rock. Now, if you’re wondering what complex rehab technology and punk rock have in common, the answer is, everything.

During the 1970s and 1980s in the U.S., both complex rehab and punk rock fascinatingly evolved in the same time frame, with the same inspired ideology. Neither was about money or recognition, but about just wanting to make a difference in one’s community. You were in a band because you wanted to express what was around you, and you innovated complex rehab because you wanted to address what was needed around you. It was simply about one’s core values, and living them out through a craft shared with one’s peers.

I mean, take two really obvious examples from the late 1970s, the Ramones and LaBac. The members of the Ramones knew nothing about music except that they wanted to play it, so four guys from Queens, New York, taught themselves how to keep a beat, play just three chords, and sing about stuff they knew, where songs were played at a pulse-pounding pace of under two minutes. When the Ramones made their debut at the now-legendary club, CBGB, a magazine reviewer wrote, “They were all wearing these black leather jackets. And they counted off this song… and it was just this wall of noise….” Others who saw the Ramones in the early days saw them as so musically inept, they were literally offended. Yet, the band members were so true to their vision that they just kept playing, where their authenticity ultimately changed music forever. Sure, there were experimental bands before the Ramones, but none as uniquely passionate about evolving – or, deconstructing – music as them. Interestingly, the Ramones were never a commercial success, but countless bands and the genre of punk, arguably, wouldn’t have evolved as it ultimately did without them.

And, the same goes for LaBac, a true innovator in complex rehab technology. Long story short (and the fascinating full story is in my book), Greg Peek was a race car builder in the 1970s in Colorado, when a local wheelchair dealer asked him if he could fabricate some sort of power seating to help relieve seated pressure points of quadriplegics at Craig Hospital. Peek immediately found a calling and followed it with unyielding intensity, evolving the power positioning industry as, arguably, no other. Again, there were some before Peek, and many after him, but from the day he displayed his seating at an industry trade show, Peek changed everything by sticking with it, successes and failures. “I remember trying to convince the industry to use solid seat pans instead of sling upholstery because they better supported pressure management cushions, and no one wanted to listen,” Peek shared with me. Of course, today, all rehab seating uses a solid seat pan.

And, so, there’s always been a common passion of those in the two crafts, one that those dedicated to it live to no end. Like punk musicians, those who are true complex rehab individuals live it to the extreme. You’re never rich nor poor, employed or unemployed, famous or unknown. You simply do complex rehab because it’s who you are and it’s the passion that you put before everything else – and no one can take that away from you or truly dictate the terms. If things don’t work out with a company, you go somewhere else where they value complex rehab. And, if you have to live in your van during the transition (and I know people who have) you gladly do it. If you’re truly in complex rehab as a life path, nothing stops you from doing it.

The evolutions of complex rehab and punk rock “counter culture” have paralleled each other, as well, where if you’re the real deal you always have a brotherhood to support you. There’s a bond that says once you’re in, you’re in. And, like-minds seek each other out, respect the elders, and support each other. Hymie Pogir is the Iggy Pop (a punk originator still as intense as ever at age 66) of complex rehab, where he reached out to me around 15 years ago, and said, “I’m an older rehab guy, you’re a younger rehab guy – let’s have lunch,” and he flew from Ohio to California to make good on his word. I felt like I was already in the fold, but when Hymie, as among the true elder statesman of complex rehab, pulled me in, I learned really quickly to shut up, listen, and learn. What Hymie and I realized from that first lunch onward is that we both have the core belief that the heart of complex rehab is the removal of any delineation of people. In complex rehab, it doesn’t matter if you have a disability or not, whether you’re a consumer or industry person, rich or poor, black or white, straight or gay. As long as you truly understand the heart of complex rehab – ordinary people doing the extraordinary simply to contribute to our community – you’re among us and we all take care of each other, period.

Of course, like punk rock culture, when you live with such intensity, you will get yourself in trouble from time to time, as guys like Hymie and I have both done. When you live with unwavering dedication to complex rehab, it’s a culture that others aren’t going to always understand – and you don’t have a lot of patience for that. It’s a lot like, OK, I get that you don’t get complex rehab, so how about you go away because you don’t have any influence over my commitment…. Among my best, worst stories was getting called into Human Resources because there was cursing in my office, and co-workers complained. Of course, you and I know that in complex rehab culture, everyone curses because there are constant frustrations, the system just gets worse, and people are rightfully pissed off. Just the other day, complex rehab user and advocate, Paul Parino, called me on my office speaker phone and explained how, in his exact words, “New York State is giving it to us up the ass again by trying to cut attendant care funding. We already have people stuck sleeping in their power chairs because of inadequate attendant care, and now the Governor wants to F’ us some more….” That’s justified language, based on real emotion and circumstances. Complex rehab isn’t the Wonderful World of Walt Disney; rather, it’s the real lives of real people living with dignity in real adversity – and if one can’t appreciate that and the visceral language used, they have no clue what complex rehab is about. I would never dream of censoring a peer like Paul, as he’s on the front lines and deserves utmost respect.

So, I got called into H.R. a while back by a well-meaning young man, doing his job and supporting his family, which I respected tremendously. But, other than my employee file, he had no idea what I did in my role, how I fit in the complex rehab community, or what complex rehab is. So, I answered his questions with brutal honesty: Of course there’s cursing in my office. My community lives in the real world, and it isn’t always pretty. Imagine going from an able-bodied, employed father of three, to being hit by a drunk driver on your way home from work, becoming a quadriplegic. Not only can’t you walk, you can’t dress or bathe yourself. You can’t pick up your two-year-old or reach out to hold your wife’s hand. Your days are spent not just trying to physically survive and emotionally cope, but you’re in dire financial straits, fighting with insurance companies, and struggling to get attendant care. And, then your power chair breaks…. What kind of language are you going to use when you call me? And, do you want me to be a cold, corporate stooge on the other end of the phone, or be who I am, who goes through some of what you go through, where shitty circumstances are rightfully acknowledged as shitty circumstances?

The truly well-meaning H.R. young man looked at me like, Now what do I do? because I’d just given him a soliloquize on complex rehab at its most real, gritty level, the world you and I live in. Fortunately, my big boss is complex rehab at heart, so I didn’t get fired over “inappropriate language.” Instead, they moved me to a nicer office in a different department, and asked me to control the language use.

Alas, if complex rehab is punk rock, Greg Peek is the Ramones, and Hymie Pogir is Iggy Pop, where’s that leave me?

Well, I see a lot of parallels with Henry Rollins, best known as the lead singer of Black Flag, the all-immersed Renaissance man of punk rock. We both come from very little, and entered our cultures mid-stream. Many came before us, and some after – and we respect all. Henry left a job at Haagen-Dazs in D.C. to move to California to pursue punk at all costs, and I left a job at a community college in California to move to Pennsylvania to pursue complex rehab at all costs. Both of us knew that we weren’t going to compromise or fail, as while there are a lot of people smarter and more talented than us, few are as dedicated. As long as no one gets in our way or questions why we do what we do, we work till the flesh falls from our bones, and strive to honor our peers even when it gets us in trouble with those who aren’t part of our cultures. We both work at practicing intensity toward our crafts, where, as Henry puts it, intensity will always pull us through any bouts of exhaustion, poverty, and bad circumstances. Henry’s run 2.13.61 Publishing, just as I’ve run WheelchairJunkie.com, both remaining authentic to our core cultures, where we’re not just about the end product, but the history, people, and future elevations of the crafts we serve, where no one can take that extraordinary independence from us. While Henry has his Black Flag tattoo embodying who he is, I have my wheelchair tattoo embodying who I am. We’ve both built our lives as public but relatively solitary men, where our sole focus is the cultures in which we live, work, and breathe.

And, so, the cultures between complex rehab and punk rock are the same: It’s not about where you work, where you come from, or how society labels you. As long as your heart and soul is in it – where it’s a true life calling that you’ll sacrifice all for – you’re with us. …Now, get on the bus and let’s go – we’ve got work to do.

The “Heart” of Complex Rehab Technology – Video

By Mark E. Smith

When most consumers think of complex rehab technology, they think of… well… technology. However, some today don’t realize that the true nature of complex rehab technology – stemming from the original and current innovators – isn’t just about mobility products, but it’s about the heart, ordinary individuals performing the extraordinary simply to better the lives of others. It’s with great privilege that I share one story from my lifetime journey and passion in complex rehab, where heroes in my life taught me so much about the “heart” in complex rehab. Enjoy the video.