Tag: Mark E. Smith

Teeing Off At Love

By Mark E. Smith

Yes, my swing is still off by a millimeter – but, of course, I’m working on it with more determination than ever, as we all should if we’re serious about getting it right. See, I learned that the only difference between the best golfers in the world and the worst golfers in the world is a one millimeter positioning of the head of the club at the point of impact on the ball. That one millimeter at the point of impact dictates whether the ball soars down the fairway, onto the green, or veers off by dozens of yards, into the rough. It all comes down to trajectory, where a slight nuance at the beginning dictates a vastly different outcome.

And, so, in my romantic life, there are days when I’m still one millimeter off, still trying to make right and do right. However, through all sorts of practice – from counseling, to reading, to just taking good ol’ accountability – I keep working on my swing, trying to get that last millimeter right, my love life soaring consistently down the fairway, being both a worthy partner and worthy of a partner. As is the case for a lot of people, loving is easy for me, but feeling fully worthy of love has been the hard part – the last millimeter.

Why is it that truly feeling worthy of love – like hitting a silly, white ball in a straight line – can be so challenging? I mean, for me, I’ve learned at least some of the answers. I know that I started the whole romance thing at four millimeters off, having my parents as the worst coaches – read that, examples – in the world. I actually started in my late teens hitting the ball in the entirely wrong direction, dating emotional vacuums. But, after a few relationships and just wanting to do right by others and just be happy myself, I got better at it all, healthier at it all. But, never perfect. You might say I could keep the ball straighter, but the trajectory always landed me in the rough at the end. Was it my dysfunctions creeping in at the last minute, or just bad luck, a gust of wind that I couldn’t recover from?

And, that’s the baffling part of romantic relationships, isn’t it? When we think we’ve finally hit our best shot – where we strive to love with sincerity and vulnerability, and find love in return – we too often ultimately watch it inexplicably veer off course, saying to ourselves and those around us, Wait! I swear I’ve been working on myself, and gave it my best shot! This isn’t the direction it’s supposed to go! We sometimes want to throw our club in the air, and scream, OK, Lord, I give up – I’m moving into my studio condo in Vegas, getting a cat, and look forward to being the best single grandparent ever!

Yet, we can’t do that. See, the only time we lose in any aspect of life, including love, is when we give up. No, we shouldn’t throw our club in despair, and stomp off of the course. Rather, if we’re patient, someone, somewhere, at the right time, who’s truly compatible, will fall in love with us, accepting us for who we are – with our fully reciprocating – and together with her or him we’ll celebrate the victory of finding the literal sweet spot of life.

But, indeed, it’s the waiting for love that so many of us have struggled with at times in our lives, the right one to enter our lives, wholly, completely. I was recently discussing the topic of love with a spiritual force in my life, a woman wiser and more angelic than anyone I’ve ever known, and she spoke profound words: When the time is right, the right person will come into your life. Life is a waiting game. If we try to rush things, we often short change ourselves.

Similarly, musician and sage soul, Bob Marley, delivered among the most profound takes on love, one that resonates with the emotional availability and valuation that we should all have when we meet the one for us:

Only once in your life, I truly believe, you find someone who can completely turn your world around. You tell them things that you’ve never shared with another soul and they absorb everything you say and actually want to hear more. You share hopes for the future, dreams that will never come true, goals that were never achieved and the many disappointments life has thrown at you. When something wonderful happens, you can’t wait to tell them about it, knowing they will share in your excitement. They are not embarrassed to cry with you when you are hurting or laugh with you when you make a fool of yourself. Never do they hurt your feelings or make you feel like you are not good enough, but rather they build you up and show you the things about yourself that make you special and even beautiful. There is never any pressure, jealousy or competition but only a quiet calmness when they are around. You can be yourself and not worry about what they will think of you because they love you for who you are. The things that seem insignificant to most people such as a note, song or walk become invaluable treasures kept safe in your heart to cherish forever. Memories of your childhood come back and are so clear and vivid it’s like being young again. Colours seem brighter and more brilliant. Laughter seems part of daily life where before it was infrequent or didn’t exist at all. A phone call or two during the day helps to get you through a long day’s work and always brings a smile to your face. In their presence, there’s no need for continuous conversation, but you find you’re quite content in just having them nearby. Things that never interested you before become fascinating because you know they are important to this person who is so special to you. You think of this person on every occasion and in everything you do. Simple things bring them to mind like a pale blue sky, gentle wind or even a storm cloud on the horizon. You open your heart knowing that there’s a chance it may be broken one day and in opening your heart, you experience a love and joy that you never dreamed possible. You find that being vulnerable is the only way to allow your heart to feel true pleasure that’s so real it scares you. You find strength in knowing you have a true friend and possibly a soul mate who will remain loyal to the end. Life seems completely different, exciting and worthwhile. Your only hope and security is in knowing that they are a part of your life.”
― Bob Marley

And, so we should each just keep practicing at it all – learning and growing and loving, in a relationship or single or somewhere in-between – knowing that one day, at the right tee time, we’ll finally shave off that one millimeter blocking our well-formed swings, and all will soar in the direction we and our partners desire – a hole-in-one in life, love, and fulfillment.

Hill Holders for Life

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By Mark E. Smith

In the realm of manual wheelchair technology, there’s a mechanism commonly called a “hill holder.” As you push up a hill, the hill holder works as an automatic, one-direction brake – the wheelchair can’t roll backward, only forward, allowing ultimate progress pushing up the hill. In fact, even on the steepest of hills, you can push forward, let your hands off of the wheels, and the wheelchair stays right where you want it, guaranteeing constant progress.

I often think that we need hill holders in life – emotionally, mentally, financially, physically, spiritually. We need a mechanism that prevents backward slides on our momentum. You’ve heard the saying, Two steps forward, one step back… well… that’s our hill holders not working.

No, if we’re to learn, grow, and succeed, we need hill holders firmly in place, where we only go forward in life, not backward. Have you ever paid off your credit cards, only to use them again? Have you ever struggled with an addiction, only to start again? Have you ever vowed to stay out of unhealthy relationships, only to get in yet another one? Have you ever vowed to diet and workout, only to overindulge and go back to being a couch potato? In whole, have you ever tried to make positive changes, forward momentum in life, only to end up going backward, to old patterns? Most of us have, for any number of reasons – returning to negative comfort zones, being scared of progress, low self-esteem… self-sabotaging roots. I know, I’ve been there, and still find myself there at times!

But, that’s where real life hill holders come into play – when things get tough, they keep us from going backward, from losing momentum, from throwing away great progress in our life.

I met an acquaintance who had completely turned around his whole life. He went from divorced, broke, alcoholic, and spiritually bankrupt to having a soul mate, a great career, not drinking, and becoming a pastor – all in about six years. Now, six years is a long time, but to make such complete, radical changes over any period is impressive. When I asked him his secret to success, he said that it started with personal accountability – the ultimate hill holder – but then he went the extra step and only surrounded himself with people who brought out excellent in him (even if we’re not savvy enough to catch ourselves off of track, let’s at least surround ourselves with those who care enough to catch us).

My acquaintance is a great example of installing hill holders in our lives. We may be compelled to go backward toward that which is bad for us – it’s easier to roll back down the hill than to push up it! However, if we do that, our lives never improve, and we never succeed. Instead, hill holders keep our forward momentum, where despite being scared or self-sabotaging or lazy, accountability and our support network kicks in to bolster our progress.

Be brave enough to use hill holders in your life, and you”ll achieve greater vistas than you ever imagined.

Flipping Coins

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By Mark E. Smith

They say that there are two sides to every coin – and that’s so true in life. The fact is that adversity happens to all of us, but so can success, often all in the same circumstance. Often turning a vying into a victory, you might say, comes down to simply flipping the coin to the other side. On a deeper level, it’s a principle that I call, Making that which seems against you, actually work for you. It’s about taking the bad tosses of life, and flipping the coin over so that they become blessings, successes, better than where you started.

A friend of mine loved her job, having worked it for 10 years, making close to $100,000 per year. She admired her co-workers, was immensely talented, and was loyal to her employer. She told me that she hoped to run the whole division she was in some day. She was inspired, accomplished, and on the fast track. So, imagine how devastated she was when she was abruptly let go, her job gone.

I worried about her tremendously, wondering where she would go, what she would do? To make matters more concerning, she was the bread-winner in her household, supporting two children and a mortgage. What good could possibly come out of that situation, one that countless Americans currently face? Indeed, it was a terrible toss of the coin, the losing side of life flipped up.

However, my friend did something amazing: She did what it took to turn the coin right-side-up. Within two weeks, she had a new job several states away, bold enough to make that move. And, after a year at that job, doing very well, she was hired at one of her old employer’s competitors for more money, in a more prestigious position. That which originally seemed to work against her, ultimately worked for her. She didn’t just come out of adversity, she came out on top.

Think about how many aspects of our lives that seem against us, actually work for us. An ended bad relationship leads to a healthy new one; a job loss leads to a better one; addiction-recovery leads to healthier living. The list goes on and on. However, the truth comes down to this: Just when you think life’s dealt you a blow with the bad side of a coin, remember that there’s always another side. Flip it over, and make that which seems against you, actually work for you.

I recently saw the movie, The Sessions, based on the true story of writer, Mark O’Brien. Struck with polio as a young boy, he spent his life completely paralyzed, most of the time living in an iron lung. Yet, he used among his only capabilities – the ability to move his head – to control a mouth stick, meticulously typing one letter at a time, ultimately publishing countless articles and poetry on subjects ranging from disability commentary to baseball to interviewing Dr. Stephen Hawking. O’Brien took among the toughest plights – imagine all that was against him – and made it work for him.

Life is going to give us all bad tosses of the coin. Heck, I sometimes think I’ve had so many bad tosses of coins that my adversities keep the Federal Reserve’s mint in business! Yet, I always know exactly what to do when bad tosses of the coin come my way: flip it over, making that which seems against me, actually work for me. I was raised by alcoholic-addicts, so I’ve lived a very sober life. Being a full-time single dad has made me a better dad, bring more joy to my life as a father than I could have ever imagined. Having cerebral palsy has allowed me among the most rewarding careers. I could have easily gone down terrible paths with each adversity in my life. However, before the coin even hits the ground, I’m usually snatching it mid-air, ensuring I’m righting it as quick as I can toward favor and blessing.

Bad tosses of the coin are going to come your way – that’s a fact. However, it’s up to you to leave it as-is, working against you, or strive to flip that coin over, making it work for you. I say, always strive to find the shiny side to any coin – read that, situation – as that’s the only one that will add value to your life, taking you to levels of success that others may not have foreseen. 

Palm Tree in the Wind

By Mark E. Smith

Indeed, my friend, I continue working on this thing called life – physically, emotionally, mentally. I’ve concluded that it’s all a bit like exercise. From the physical to the emotional, if we do nothing, life is effortless. However, such a no-effort approach is also the worst thing for us – we don’t grow, nothing changes, nothing gets easier, things just stay the same or degrade. Yet, like physical exercise, when we put in the effort to change ourselves for the better, we grow and become healthier – and life gets better. It’s the nature of personal growth: It takes effort, but the more we do it, the easier it gets – more intuitive, more natural – and the healthier we get.

I just spoke at the University of Scranton, and a student asked where I got my resiliency as a child? I couldn’t give an absolute answer other than there was something intrinsic in me toward facing adversity. I know that in changing our lives for the better as adults, we need a conscious desire to improve ourselves, as well as an innate inner capacity to accomplish it. There’s often a catalyst for conscious change – and I’ll get to that more in a moment – but the innate part is more complex.

I recently learned about the resilience of palm trees. While all other trees topple in hurricane force winds, the palm bows for hours in horrendous storms, then simply uprights to normal. Oaks, pines, maples, you name it, all topple – but not the palm. I think all of us are born as palms – that is, having utmost resilience – but for some, the roots are eroded by others, where hellish upbringings can kill our capacities to grow beyond the scars that were left. But, fortunately, I wasn’t one of those people whose spirit was ever lost or destroyed. I’ve weathered my storms, but my roots – my capacities to learn, grow, and change – stayed intact.

For a lot of years, I relied on my innate capacities to change and grow, but it wasn’t until the passing of both my parents due to their troubled lives that I truly understood the power of combining innate strength with the conscious desire to change, to move beyond their negative examples and live a better life for myself. It’s one thing to survive and get by; but, it’s another to thrive and do well. I guess with my parents’ deaths, I was able to shake away a lot of shadows, and truly work on moving beyond the pain of my past. It may be a shame that their passing liberated me in ways – that’s not how parent-child relationships should work – but it did put so much of the dysfunction to rest. I guess those who aren’t there anymore can’t hurt us – but the memories still can – and moving beyond both has been my goal for several years now.

And, the newly-made memories are better these days, all of them. I added a fireplace to my master bedroom. No, it’s not a real one, but what they call “vent-free.” But it’s a beautiful mantel, with a realistic flame and logs, and heats the room with a toasty warmth and glow. I also picked out a thick, shag area rug that nicely frames my bed. It all cozies up my space, a tranquil one, where my daughter and I have nightly conversations about her life, my life, our life – life overall. She’s in driver’s education now, with her first formal gallery showing of her photography coming up, and a boyfriend who’s an Eagle Scout. So, there’s a lot to talk about around the fake fireplace and shag rug – warmth abound.

We recently went and saw The Perks of Being a Wallflower. It’s the movie adaptation from the 1990s novel by the same name. A central theme of the movie is, We accept the love we think we deserve, meaning that if we think we deserve little, then that’s what we’ll get, that we should all raise our expectations – in life and love. And, the movie was not lost on who we’re each striving to become, the wounds we’re each healing, the ever-rewarding effort that we’re each putting into loving, learning, and growing.

It’s said that if we don’t address the trauma of our pasts and heal, we statistically will relive it, making ourselves forever either a victim or a perpetrator – or both. If you were raised by an alcoholic, chances are that unless you make a conscious change, along with possessing the innate capacity to do so, you will marry an alcoholic, be an alcoholic, or, forbid, do both. This holds true for any trauma in our lives, where, again, if we don’t address it, we relive it – the only creature on Earth known by science that revictimizes itself. And, I’ve done it, now taking absolute accountability for choosing relationships where I simply found those who fit the mold of those I knew in my insanely dysfunctional upbringing – emotionally unavailable for any number of dysfunctional reasons. However, with my own value at stake – raising the bar on the health and love that I deserve, and breaking the cycle of dysfunction for the sake of my daughter – I continue working on myself, changing my own flawed programming, moving out of the shadows of my past and into the glow of my potential. And, like exercise, it’s been painful getting into shape, and it’s all just scary and confusing at times. But, I just keep working at it – the strength of a lone man just trying to do right.

And, so it’s around the fake fireplace and shag rug that I continue building an ever-inspired life of laughter, love, learning, and growth. Sure, it was once just my daughter and me in a house left both literally and figuratively empty by my ended marriage, repeated dysfunctional patterns from my childhood on. But, now there are new pictures on the walls, a fake fireplace, and shag rug that are just quirky enough to feel so right. Palm trees, my friend, do always find ways to right themselves – it just takes time.

It Happens for Us

By Mark E. Smith

I’m always intrigued when I hear people say, “Life isn’t fair.” It intrigues me because it’s simply never proves true in the long run. See, I’ve learned that while in the short term, bad occurrences – disability, divorce, job loss, addiction, you name it – can seem like they happen to us, they really ultimately happen for us – unexpected blessings that only come from adversity.

I remember in the mid 1990s, just such an example, where a terrible situation that initially happened to me, ultimately proved to happen for me, bettering my quality of life. I was in college and working, not making a lot of money, but enough to own my little 1,100-square-foot home in a borderline part of town. I felt blessed to own the home, but it was in no way ideal – it wasn’t fully accessible, and it needed a lot of expensive repairs. I couldn’t afford to replace the leaking roof, let alone renovate my bathroom to make it fully accessible.

To make matters worse, a big storm hit us, and although I lived on a hill, my side patio flooded, water pouring through the patio doors, filling my entire house with 6” of water. I remember the feeling of helplessness as I watched the water flow throughout my entire house within moments, destroying what little I had.

Soon, the water receded, and I was left with a horrendous muddy, soggy mess. The wall-to-wall carpeting was destroyed; the wall furnaces were destroyed; the sheet rock wicked moisture, needing dramatic repair; and, everything that was on the floor was soaked, from my wheelchair’s battery charger to my couch. I wasn’t sure how I could ever afford to repair my home, not having flood insurance.

However, while neighbors tore out my water-logged carpet and piled all of my destroyed goods on the lawn – my having no way to replace any of it – a FEMA claims inspector came along within a day or two. He assessed my property, and wrote me a several-thousand-dollar check on the spot. Within a week, I received another FEMA check, and with the help of my city’s building department, I was able to get a reputable contractor to start repairing my home.

But, here’s what’s amazing. As the city’s building inspector checked on my home’s progress one day, he noted my accessibility needs. And, within days, he had grant money for me to not only make my bathroom accessible, but to replace the roof and make other improvements. My home was ultimately in far better shape after the flood than before.

My point is, while the flood initially happened to me, it ultimately happened for me. A terrible occurrence was the catalyst for ultimate blessing.

If you truly look at the floods in your life – that is, the adversities that happen to you – you’ll clearly see that they are really happening for you in the end – winter always ushers in spring. I know, you may be thinking, Mark, bad thing after bad thing just keeps happening to me, there is nothing happening for me.

You need to look a little closer, that’s all – and you’ll see how turmoil always leads to triumph. Closed doors always become open doors. My dysfunctional upbringing didn’t happen to me, it happened for me, making me constantly strive to be a better father to my daughter. My ended marriage didn’t happen to me, it happened for me, placing me on a much healthier emotional path that’s brought greater levels of love, laughter, and contentment into my life. My cerebral palsy didn’t happen to me, it happened for me, instilling countless lessons within me as to the extraordinary potentials within all of us.

Really, we should each possess a bring-it-on! attitude, where we know that life plays its roles in magnificently mysterious ways, where vying always leads to victory, where turbulent times are merely life’s good graces getting ready to come our way. The next adversity that you face, remind yourself that nothing happens to you, but for you, where closed doors open, and a flood of prosperity and success are coming your way. Have faith and patience, and you’ll be amazed at how the tides in your life turn.

Flying High

By Mark E. Smith

I smiled – as always – when I rolled up to the airline ticket counter, and offered a friendly good morning to the ticket agent, placing my companion’s identification card and mine on the counter. The agent took our I.D.s, pulled up our tickets, and said, “You’re going to have to check your bag – that’ll be $25.”

“It’s a carry-on,” I replied, glancing at my bag.

“No, it’s too big to be a carry-on,” she replied. “You have to check it.”

“It’s a certified carry-on, and I’ve flown with it countless times as a carry-on, never checking it,” I explained.

“Do you want to fly today or not?” she asked. “”If so, I need that bag and $25.”

I suppose I could have asked to set the bag on the measuring board, or asked to speak to a manager, but I didn’t want to make the agent any angrier than she was, I didn’t want to add any fuel to whatever was burning her up inside that morning. So, I simply checked the bag as she insisted.

As my travel companion and I headed toward security screening, my companion was outraged, not understanding why the agent was so rude? “I don’t know why she was so rude,” I answered. “People are rude all the time. I just hope her day gets better.”

I was heading home from a successful business trip; I was blessed that $25 wasn’t an issue for me to afford; and, I was excited to be going home to my daughter. Really, I was happy to just be on my way – no worries at all.

The fact is, not everyone is going to like you or be kind to you – often for no reason at all. From your own family members to complete strangers, people are going to be rude, unkind, possibly downright mean. However, we have the choice of buying into their misery, or just letting it roll off us like water on glass – not letting it stick. If we know we are living kind, loving lives that give to others, it’s doing ourselves an injustice to let others bring us down. Be yourself – celebrated, not degraded or just tolerated.

I had a nice flight home, ultimately reaching the arms of my welcoming daughter. And, I truly hope that ticket agent’s day turned out just as well.

Play In Pain

By Mark E. Smith

At this writing, hurricane Sandy is bearing down on us, and it looks like I have to ride home in my power wheelchair in rain and 40mph winds. And, I’m totally fine with that – no big deal. Now, I have other options, but they seem illogical to me. I have over 400 hours of accumulated time off, so I could have stayed home, or even worked from home. Or, I could call someone to bring my van and pick me up. But, why would I do either of those? Schools are closed, and people are hunkering down with storm supplies, but a little discomfort – or, a lot – never persuaded me to stop from doing what’s best for me and those who count on me, like my going to work like any other day, regardless of a supposed looming hurricane.

We live in culture where too many people seem to resist “playing in pain,” sidelining themselves from the game of life, albeit due to emotional, physical, or mental challenges. It’s as if why try when you can just give up? There’s a storm brewing, so let’s cancel school. I’m sick, so I’m not going to work. My boyfriend broke up with me, so I’m going to sleep all weekend. I lost my job, so I’m just going to sit around the house….

No, just because bad things happen doesn’t mean that we throw in the towel, give up on ourselves, make excuses, or stop our lives. Rather, in times of adversity, we should pick up the pace. They make rain gear to weather storms, and when storms hit our own lives, you might say that rather than run and hide, we should don our rain gear – that is, our inner-strength – and head into the storm, head on. After all, weathering storms is how we grow and become stronger.

The next time you find yourself with the two options of adversity – to play in pain with pride, or seat yourself on the sidelines of life with pity – don your rain gear and head into the storm, with courage and tenacity. Choose to “play in pain,” and you will come out stronger.

The Disability-Technology Continuum

By Mark E. Smith

From my CEO to my life-long best friend, a conversation keeps popping up that’s quite fascinating. It’s what I’ve coined “The Disability-Technology Continuum.”

The disability-technology continuum, as I’ve defined it, is an extremely simple yet profound concept. It’s the fact that technology literally makes us less disabled – that is, it improves upon virtually every aspect of our lives, that when we have appropriate technology, our abilities and quality of life expand.

I can use the disability-technology continuum as a prime example in my own life toward how it works and its ultimate results. Imagine there’s a scale from 0 to 100. Zero is totally disabled, as in bed-ridden, and 100 is totally independent. Without a mobility device, I’m at 0 because, based on my disability, I’d be bed-ridden. However, if I have a manual wheelchair, my functionality increases to, say, 30 on the continuum. Yet, with a power chair, now I may be at, say, 60, and with an elevating seat added, I’m bumped up to 65. You get the idea: appropriate technology increases independence, lessening the impact of disability.

Of course, many aspects move one along the disability-technology continuum. Mobility equipment, computer technology, adaptive transportation, and accessible housing, to name a few, all play key roles in moving us from the bottom end of the continuum toward the upper end – and it’s near the upper end where aspects like education, employment, and community involvement skyrocket. And, as we move up the continuum, we don’t just win, everyone wins, as our independence benefits many, where we simply can contribute more toward society.

All of this, however, requires exactly that – societal support, where, culturally all understand the importance of supporting moving others up the disability-technology continuum. See, technology can only get those with disabilities so far. It’s societal support and acceptance that both allow and complete the disability-technology continuum. Technology can physically liberate those of us with severe disabilities, but, make no mistake, we need a society that fosters that process.

Wanna be a Rock Star?

By Mark E. Smith

At some point, one must get smarter about these things – I must get smarter about these things. At some point, unlike Peter Pan, we should all grow up.

I’m heading out on the road, with a jam-packed schedule – first Detroit, then Atlanta for Medtrade. They’re back-to-back trips, with one whole day home in-between, just enough to repack and catch-up with my daughter. It’s a nine-day stint in total.

After well over a decade of these types of trip, I’ve seen it all and done it all, and while it’s been a blast – and made for some great writing and tales to be told – at some point one has to put the work above all else, and dial down the after hours shenanigans for healthier pursuits like sleep. The goal isn’t to pride yourself on rock-starring it all night, then showing up for your gig on time the next day, but to prioritize your actual job at hand – and that means forgoing the whole rock-star part. It’s almost like there has to be humility to it all, where you just do your job, find something to eat, and go back to your hotel room for some reading and a full night’s sleep. No boozing, no parties, no chasing chicks – just a call home, shower, and eight hours of sleep. Is that the life of over-the-top stories and rock-star fantasies come true? No, but it’s a heck of a wise way to live if your career is a priority and you want to live by example for those around you – in my case, my teen daughter.

In Detroit, one day, I have an 8:00am corporate talk, then an 8:00pm keynote, more of a ruckus, rousing one-man show, introduced by one of Detroit’s top news anchors. I have to be up by 5:00am, knock the ball out of the park during the morning talk, then shift gears for a totally different gig that evening, where my energy level is through the roof. And, Medtrade is far more demanding yet, in that it’s a grueling schedule day after day, all week. Work like that, to the levels that I wish to perform, just can’t be done without a good night’s rest and sobriety.

I’ve written and talked about the highs and lows on the road, where the self-imposed chaos could take me from among the most glamorous scenes to the darkest of depression, the type of emotional roller-coaster that contributed to Vic Chestnut’s suicide. And, what I’ve realized is that it’s not the travel, or the work, or the scenes that cause such extremes, but the way we handle them – a loss of perspective and humility.

Sure, most want to be a rock star on the road, living clips of the lifestyle. But, the fact is, I’m no musician with throngs of fans, fueled by booze and chicks. Rather, I’m just a full-time single dad, trying to make a living while making a difference, where good work and clean living is a boring truth. My goal is to do my jobs, move on to the next city, and get home to just being Dad and cleaning my bathroom.

Five-by-Seven

The smell doesn’t change – it hasn’t for over 100 years. It’s the smell of urine, feces, body odor, musty hair. And it fills the halls, where it permeates everything within its path – it’s the smell of despair, stripped humanity, the ever-slowly-wasting-away of souls. It’s where some of us visit, some of us live, and too many of us die.

I am, of course, describing residential care facilities for those with physical disabilities – or, more aptly, institutions. Over the 100 years, the common verbiage has changed from asylum, to home for incurables, to institution, to residential care facility. Yet, beyond a name, fundamentally, nothing has changed – not the facilities, not our cultural practices, not even the smells. Those with disabilities still line the halls, locked away from society in literal five-by-seven-foot rooms that have fewer amenities than a prison cell – not even a commode of their own. What you’ll see is a twin bed pressed against the wall, a dresser, a TV, and a common cardboard box with one’s worldly possessions. Nine years, a woman with multiple sclerosis told me she’d been in her room – and I looked at the windowless walls of degraded paint, and thought to myself, Nine years of starring at blank walls absorbing her dignity, humanity, sanity. Nine years dying an emotional death, where she’s treated with less dignity than a convicted murderer on death row.

Now, it’s easy to point fingers and blame the mainstream for still accepting institutionalized care, still locking those with physical disabilities behind stone facades while the rest of the community drives by in luxury cars, never giving a thought to who’s hidden away in that “historic” building. And, it’s easy for families to convince themselves that it’s what’s best for their Billy or Diane, those who have severe physical disabilities, whose families know not else what to do.

However, I hold myself to a much tougher standard, knowing that I, too, am to blame. See, with a flip of a coin, I could have spent my life in a five-by-seven-foot room, where my humanity was stripped, and I wasted away, never to be known. As I tour institutions today, I see not those who should be there, but those just like me if a simple call had been made or the right question asked, where my severe disability and ultimately neglectful parents should have landed me in an institution. But, like missing a flight by moments, later to learn that it crashed, I didn’t end up in an institution. Instead, I went on to college, career, and family – a normality I could have easily never known. And, for those of us with disabilities living independent, upper-middle-class lives, we’d like to think that it’s due to our hard work or perseverance. But, it’s not. It’s just happenstance and luck, where the only difference between us and them was a cosmic coin toss, a stroke of luck that flung us down one path instead of the other, saving our lives while those just as worthy as us – our exact image – weren’t so fortunate.

And, with that reality – that the only factor that prevented me from being institutionalized due to disability was a random, cosmic coin toss – I struggle to live with the guilt and shame that consumes me: What have I done to help any of my peers who remain locked away? Who am I to sleep soundly at night in my custom home, on Egyptian cotton sheets, while my peers lay in a degraded five-by-seven-foot room, on soiled bedding, starring at windowless walls, their lives absorbed by the stench of it all? Who the hell am I to have escaped the death sentence of an institution, and not have had the presence of mind to go back and carry even one of my peers out on my shoulders?