Soul is about authenticity. Soul is about finding the things in your life that are real and pure. -John Legend
By Mark E. Smith
With the holidays approaching, and special friends visiting my home for an extended stay, my daughter and I started making a list of what we needed to do in order to make our house as perfect as possible.
See, for my daughter and me, our home is about love, laughter, understanding, and tranquility, so we haven’t cared that we have a sheet hung across the family room window because Rosie the English bulldog attacked the custom blinds, nor have we cared that the dishwasher has been broken for years (it’s just the two of us, so we don’t need a dishwasher!). We’re blessed with a very nice home, that’s neat and clean, and we don’t sweat the small stuff. We’re happy as-is.
However, with company coming, the list got longer and longer of ways to spruce up our 12-year-old home, all to impress our house guests. And, then I realized how unauthentic I was being, how I was putting priority on a shell of a house instead of the depth of my character and heart. My daughter and I want to spend time with those close to us, and replacing blinds and a dishwasher has nothing to do with it. The quality of one’s character is far more important than the quality of one’s house.
How many of us live such a facade in many aspects of our lives, where we present an image instead of just being ourselves – namely, because we don’t think others will embrace us if they see who we truly are?
The answer is, most of us. However, here’s the issue: if we hide or disguise ourselves, others don’t truly know us, and it creates a barrier for letting other people in. We live with secrets, isolation and in the worst cases, shame. Any aspect that we falsely polish or hide from others is like placing a wall between us and others. If we want the truest connections, we must be open and authentic to an extraordinary degree. Here’s the real me – take it or leave it, but at least I’m authentic. Life isn’t Facebook, where everyone’s life is a happy two-dimensional facade on a screen. To be authentic is to be real in every sense.
And, I think all of us have been unauthentic at times, both with ourselves and others. The solution, though, to both resolving it and avoiding it is to be totally authentic. Yes, some will reject us in the process, but most will embrace us.
In my own life, I strive to only be authentic. However, it’s not always easy, and I haven’t always succeeded. I’ve struggled this year with a very weighty subject in my life: my daughter will be heading off to college in the blink of an eye. Those around me have asked whether I’m prepared for that emotionally, especially since it’s just been the two of us for years, our lives so intertwined?
I give a very enthusiastic answer, that my daughter’s worked extremely hard toward college, that I can’t wait for her to flourish on her own. After all, it will be another amazing stage to witness as a parent. Yet, if I’m to be authentic, it’s truly only telling others half of my feelings – I’m not being honest.
The fact is, my daughter has been my foremost focus since the day she was born. Then, in being a full-time single father, she’s the better half of our dynamic duo, always a life force in our home. Girlfriends have come and gone, but it’s always been Shorty and me. No, I don’t know how I’m going to handle having my little girl, housemate and, really, best friend no longer around on a daily basis. I can picture Rosie the English bulldog and me just staring at each other on a Wednesday night, saying, What do we do now? Even if I’m living with a woman, I don’t see the transition being any less heartfelt. Yes, the thought of my daughter going off to college is unquestionably what I want and will be among my proudest moments. But, it’s also painful, scary and sad.
However, as I’ve opened up with friends about my complete feelings about my daughter eventually heading off to college, they’ve been extremely supportive and full of wisdom. Again, if we are going to live with authenticity, we must share our whole self, as-is, honestly, and people do reciprocate on such a genuine basis. In this way, opening myself up to others is like having guests in my home: I’d rather choose the imperfection of openness and joy over the tidiness of isolation and despair.
Of course, authenticity is ultimately about accountability, and that can be a struggle in itself. A great tool in that area is to surround yourself with people who will out of love call you on your behavior when you’re not being authentic. Both my sister and my best friend have called me on my behavior over the years – and rightfully so, as I’ve done some freakin’ stupid stuff. I remember being on the West Coast, feeling a lot of sadness over the ending of a serious relationship, and rather than being authentic and telling my friends that I was in a lot of pain, I went the rock star route, numbing myself with everything I could find as the life of the party. And, to his credit, without his being judgmental, my best friend soon pulled me aside and said, “I suspect there’s a lot going on in your life and it’s getting to you in unhealthy ways. It’s not the Mark I know.”
And, he was right. I wasn’t being authentic. Rather, I was being an emotional coward and dishonest. Fortunately, I was able to get myself back on track – arguably with greater clarity – all thanks to a true friend who believed in me and wasn’t afraid to call me on my falling off of the authenticity wagon.
None of us are perfect or immune to real emotions that tempt us toward going astray. I’ve been there and I still go there. However, recognizing the power of living to a higher standard – authenticity – and working at it in even the most challenging situations makes living as who you are a lot more rewarding.
My house isn’t perfect and neither am I. I need new blinds and a dishwasher, and Lord knows I’ve got my emotional issues. But, my home and heart are open, as-is, so come on in.
By Mark E. Smith
When I was seven, my mom moved my brother and me into a friend’s garage. It was no mirage. For those few days, I felt homeless and helpless, useless and restless. It’s what happens when the rent’s not paid.
It was scary. Scars that I buried. And, now the chicks wonder why I focus on career and my daughter? Priorities straight, bills never late, and as for a date, they come and go like an occasional snow – storms in the night. It works, but is it right?
In business, I’m bustling. As a writer, I’m hustling. And, as a father I just try to do what’s right. I get done what needs to get done by day, but forever toss and turn at night. See, when we think all heals, again spin the wheels, reminding us of our original plight. Have you known such inner fight?
Work may seem an addiction, but paranoia is the affliction, getting as far from that garage as I can.
But, now I own my own, attached to a house. Dinner on the table, life turned into a fable, and my daughter sleeps soundly at night. I’ve penned books that tell stories, take stages in the glory, and look forward more than back. That’s right.
With a garage as home in your past, it’s always going to linger and always last. But, at some point I realize my past is so far. And, a garage is a garage, just some place for my daughter to park – her car.
By Mark E. Smith
At 42, I sit here with my office door shut. I’m staring at a shiny prototype power chair drive wheel that’s balanced upright on my eloquent black desk. The light reflects off of the angles machined into the polished rim like a diamond. No one knows I have it. Sure, eventually I’ll return it to my company’s R&D design group. But, for now, like stealing a great painting from the Musee du Louvre simply to possess greatness, I stare at it, awestruck by its form.
When I was eight, I loved the liberation of my power chair, but hated its wheels. They were hospital-gray mags, the first power chair drive wheel incarnation that wasn’t just a beefed-up spoke wheel. But, they were ugly, bulky, and gray – on a hospital-chrome frame, no less. I lay in bed at night, staring at that power chair, emotionally struggling between loving and loathing it. Yes, it empowered my life, propelling me through public school at a motor-growling three miles per hour. Yet, there was nothing cool about it – not the gray and chrome power chair, not the other kids staring at me as I growled by. It was ugly. All of it was ugly.
So, I scrounged up a few bucks, went and bought two cans of black spray paint, and wasn’t going to live with the ugliness anymore. Sometimes beauty does come from the outside, in.
With no one home, I slid out of my power chair onto the back yard grass – no way of getting back into my chair – and I opened a can of paint the best I could. I shook the can, just wanting to paint the rims, just wanting to get rid of the ugliness, from the outside, in. And, as I tried to spray, paint went every where until, with tenacity and patience, all was black – the wheels, the tires, the frame, my face, the dog – it was an explosion of black. And, it was the coolest thing I’d accomplished to date. The greats weren’t great because they could paint, but because they dared to paint.
My mom came home, finding me sprawled on the grass, surrounded by blackness, and simply said, “You know, you have to live with that chair that way.”
And, I thought, “That’s right. Just the way I want it, beautiful from the outside, in.”
By Mark E. Smith
There’s so much to be said for self-acceptance and just presenting ourselves to the world as who we are. No masks. No Facades. Just be thankful for who we are, and whether others accept us as… well …just us, doesn’t really matter. And, in that spirit, here’s my spoken word piece, Rings we Wear.
By Mark E. Smith
When Mary and I talked in the Biltmore hotel’s bar in Los Angeles three years ago, there was an unusual familiarity. We both have always been around wheelchairs — and the close-knit community that innovated them since the 1970s — but somehow never knew each other, personally. We both knew of each other, and certainly knew everyone else, but oddly just never crossed each other’s path. Yet, both knowing everyone else in the bar, as well as traveling in the same circles for 30-something years, we had an instant known-you-forever connection.
However, as I’ve learned in the subsequent three years, Mary’s graciousness had nothing to do with our common experience and friends. Rather, the instant comfort and connection I found with icon, Mary Wilson Boegel, one of the original Quadra wheelchair crew members, was simply who she is — open, embracing, encouraging, love-filled — regardless of who you are. I’ve since seen her light up every room we’ve entered when we’ve been on the road at various expos and events. And, whenever anyone needs anything, Mary and her husband, Bruce, are always there to help. She even is so gracious toward my daughter, always acknowledging her accomplishments via Facebook. There’s just something about Mary, a true soul mother to many.
And, so it was no surprise to me that on the recent 40th anniversary of the injury that caused her spinal cord injury, she shared with us who know, adore, and love her one of the most amazing pieces of writing I’ve seen on the subject, a piece that doesn’t just address her disability experience, but so beautifully captures many of our experiences who’ve used wheelchairs for decades now. And, the lesson that she ultimately shares is… well… breathtaking.
It’s with great privilege that I share with you this amazing piece of writing by such an amazing woman, where may you be blessed by having a bit of Mary’s spirit in you.
There’s Something About 40
By Mary Wilson Boegel
Today is the 40th anniversary of the day I broke my back and began living with a spinal cord injury. I have certainly acknowledged this day in my heart each year, but there’s something about 40 that steps up one’s self-awareness – reflection, which then turns to gratitude. And, of course, love… the greatest gift of all.
So much has happened in these 40 years. Huge challenges, which continue to help me nurture strength, creativity, perseverance, compassion, vulnerability, humility and, then, solutions wrapped in gratitude. And, all the amazing people I am blessed to know and have in my life… love is the best anyone can hope for… giving and receiving… I am truly blessed.
In the spirit of “you’ve come a long way, baby,” here’re just a few:
The doctors gave me a lifespan of 15 years maximum in 1973. There was no ADA. Nobody wanted to hire me. Nobody wanted to rent me an apartment because they were afraid it would offend the other tenants. Nobody wanted their kids to hang out with me, God forbid, date me. Many would cross the street when they saw me coming, so they wouldn’t get too close to me. Many store clerks would not speak to me, but rather address a companion I was with. No curb cuts, so I pushed in the street or found a driveway if lucky. Limited restaurant and “social activity” access… sat in the slanted aisle of the movie theater if fortunate enough to go (cite the little things we take for granted). No public restroom access or water fountains or payphones (yes, kids, before cell phones!). No ramps, no easy-swing doors, no public access in general. Most private homes had stairs to just get to the front door. And flying… hahaha… Crawling 101 was the rule unless someone was willing to carry you – that is, assuming the airline let you fly to begin with. Discrimination was alive and unwell. Myths and misconceptions running rampant. Cripple was a common reference. And no lightweight – never mind, ultralight – wheelchairs.
But, love made it all ok. Starting with the love of life, waking up each morning and being grateful for that day. Loving (ok, sometimes fueled by anger) the challenge of trying to improve perceptions, access, mobility. Loving the opportunity to try to make a difference. And, by far, most importantly, loving and being loved by the incredible people in my life. Breaking my back was a slap upside the head to be a better, caring, loving person, and apparently its true: when you put something out to the universe, the universe in turn brings it back to you. I am surrounded by so much love… my dear husband, family and friends… your love! So grateful am I for my wonderful life!
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.
By Mark E. Smith
I’m not a formal vacation kind of guy. My career in complex rehab technology and serving my peers is a ’round-the-clock lifestyle that I’m more passionate than ever about after 15 years – and true vacations get in the way of that. In fact, I sold my boat because it was taking up too much time on the weekends during the summer. I just don’t have the desire to be off the grid long enough to truly disconnect in the way that others do, footloose and fancy free. When you come from nothing, work your way up the hard way, and know that you can go back to where you came from at any time, there’s an instinctive drive and work ethic that keeps you focused and dedicated, possibly to an obsessive degree.
However, in my latter years, especially with my daughter now 16, and wanting to give her life experiences that we all should be blessed enough to provide our children, I’ve done a fair amount of recreational travel in recent years. Even that, though, often ties into my career. I love Vegas, and, fortunately, my company has a manufacturing facility there, so on my own dime and time, I can spend, say, three days in Vegas, but still get to see colleagues as wished. Or, I was recently in Washington D.C. for a day relating to my daughter, and was able to drop by a disability-related conference, and visit with close peers. And, with an iPhone and iPad, I’m connected virtually anywhere, any time, so accessibility to work is always there.
Again, though, I do try to balance life a bit, so my one “vacation” this summer was a three-day stay at a self-proclaimed “luxury resort” in the Poconos, an hour from my house, focused on “world-class products and service that exceed expectations of the most experienced traveler.” My plan was peace and quiet, the ability to sleep, eat, check my online communications, and do it all over again – and based on the resort’s marketing, it seemed like the perfect place to do that. But, alas, not so.
See, it turns out that very wealthy people do a great job at making money, and a terrible job at picking where to take their completely ill-behaved kids on vacation. I hate to sound like a crotchety, old man, but my 16-year-old handles herself with the poise and grace of a socialite – and we live in a ranch house and drive a seven-year-old van. How come when your family flies into a resort via helicopter, you have everything but appropriately-behaved children? Heck, I’ve seen the TV show, Super Nanny, and reckon that if you can afford a helicopter, you can afford to hire someone to teach your kids discipline. Mom brought her collection of Prada purses, but apparently there wasn’t room to pack the kids’ manners!
So, I ended up at the so-called prestigious resort, with a quaint room and, in the dining room, a beautifully-reserved table for my included five-star meals – all the while surrounded by screaming, running kids, who had no parental guidance and nothing to do but bother me and others looking for tranquil elegance in a vacation.
Jasper was my favorite, and when I say favorite, I mean the kid that I most wanted to see trip and get rug burns on his knees. I only knew his name because his mom – who was admittedly smoking hot in her tennis skirts – constantly badgered him in an annoyingly-passive voice. Jasper, honey, please come sit with mommy and daddy, and eat your dinner, she said as Jasper played freakin’ airplane around the formal dinning room.
“Whatcha eatin’?” Jasper asked me, his head barely taller than my table.
“It’s deep-fried kid,” I replied. “And if you don’t get away from my table, you’ll be my desert.”
But, Jasper didn’t care what I said, or what his mom said, or what anyone said. It was his world, and we were just living in it.
And, so, there I was, at among supposedly the most exclusive resorts in the country, just wanting peace and quiet, and I ended up in the middle of dozens of preschoolers in Ralph Lauren polos – lead by Mommy’s little Jasper – acting like perpetual-motion pogo sticks, bouncing around the lodge like it was a barrel of monkeys.
So, I went to the one place that the terrible tykes couldn’t go: the bar. However, within minutes, there’s five-year-old Jasper starring at me again.
“Whatcha drinkin’?” he asked, his hands gripping the edge of my table.
“Boar’s blood,” I said.
“What’s that?” he asked, bouncing up and down on his invisible pogo stick.
“Why are you wearing girl’s shoes?” I asked, and he stopped bouncing, looking down at his Docksiders. “See that lady over there – she has the same shoes on. Girl shoes, just like you.”
I’m very observant, and just happen to notice that Jasper and a woman from Italy I’d met earlier wore identical boat shoes.
“These aren’t girl shoes,” he says, crossing his arms. “They’re boy shoes.”
“Now you’re crossing your arms like a girl,” I say. “First you dress like a girl, and now you gesture like one. I see a pattern here.”
Jasper just stared at me, stumped.
“Cat got your tongue?” I asked.
“I’m going to tell my mom on you,” Jasper retorted, pouting.
“Dude, you’re the one wearing girl’s shoes and crossing your arms,” I shouted as Jasper ran away.
Ultimately, Jasper and I became really good friends. I even laughed when he fell running across the lodge one afternoon, burning the tip of his nose as his face slid across an area rug.
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.