Archive for the ‘Uncategorized’ Category

By Mark E. Smith

Henry David Thoreau wrote, “Could a greater miracle take place than for us to look through each other’s eyes for an instant?”

Of course, it’s impossible to look through someone else’s eyes. However, when we’re exceptionally fortunate, others allow us the privilege of knowing their struggles. It’s a gift of trust, one that we should honor with utmost empathy and connection.

Indeed, it’s that connection that’s so unique. For 25 years, as I’ve moved through many paths of adulthood, across a vast geography, I’ve had the humbling privilege of so many sharing their struggles with me. Part of it is that we tend to share our struggles with those who also struggle, and the physicality of my cerebral palsy inherently defines me as having faced struggles, so others intrinsically know I’m in the club, so to speak. Likewise, I hope the other contributing factor as to why so many have shared their struggles with me is due to my expressions of real connections between us.

Now, I wish I could share some examples of the breathtaking, heart-wrenching stories some have shared with me over the years. However, that’s not the way it works. When someone shares his or her most personal stories, you help bear the load, but you certainly don’t violate that confidence. There’s a sacredness to such trust. What I can share with you is the truth I’ve learned in this process….

We never know what someone has been through or is going through. I’ve met individuals from all aspects of life – some of whom you’d never imagine have a care in the world – and the stories shared range from heartbreaking to unfathomable. The cliché is that you can’t judge a book by its cover. As I say, a smile can hide a lot of pain, and a trickle of pain can stem from an ocean.

While we move through our days, we encounter many people. Some are strangers; others are as close to us as colleagues we spend our entire days with. Clothes, bravado, makeup, materialism, humor, status, and so on can create facades that make all of our lives seem like the glossy pages of a magazine – two-dimensional perfection. But there’s a third dimension to many of us, one that includes depth and pain and scars. There’s connection in realizing that. It reminds us that we’re not alone in our struggles and also enables us to treat others with the truest sense of humanity. I can’t judge someone because I don’t know what he or she has been through or is going through. But, I can extend my heart equally to all.

As you move through your days, I hope there are those who you can trust with any struggles you may have. Similarly, I hope that you’re one who others feel safe confiding in. After all, none of us need to be alone in our struggles. Share. Listen. Love.

We Need Your Help!

Posted: April 27, 2017 in Uncategorized

We need your help! Bryan Anderson, Kiel Eigen and I gathered an awesome team and made a short film, Head Over Wheels, entered in the 2017 Easterseals Disability Film Challenge. It’s an annual film contest where filmmakers have just 48 hours to write, film, and produce a 5-minute short film addressing disability in a unique light. This year’s theme was a “family comedy.”

Now, we’re not filmmakers, but we’re a scrappy bunch and, as The Beatles put it, with a little help from our friends, we pulled off the seemingly impossible – and actually made and entered a short film!

The result is hilarious, and we’d love for you to watch it and share it via your own awesome social media. While we think you’ll love the film – it’s so us! – we’re judged on the number of online views, shares and media exposure it gets, so that’s where we need your help. If you’d be kind enough to spread the word and link for Head Over Wheels via your Twitter, blog, E-bulletin, that would be fab-u-lous!

The views, shares, and exposure are only counted through May 8th, so we need all the support we can get in the coming days. Thank you so much for helping us spread the word on this insanely cool project (and we really just want to win)!

Please watch and share Head Over Wheels!

By Mark E. Smith

Profound life change can be hard and scary. However, do you know what’s even harder and scarier? Acknowledging it to ourselves and others. Yet, when we do, that’s when the most rewarding change occurs.

My wife and I were very fortunate to buy our “forever house.” We’d financially striven toward it, and finding it was a two-year process unto itself. It had to be the right house, at the right location, at the right price – and we nailed it. Then, due to my wheelchair use, we did some remodeling, and my wife made our beautiful home even more beautiful with her design skills. People were kind, and the compliments on our home flowed. By all accounts, we were blessed, and as one who didn’t come from much, I never took a moment of it for granted – I was privileged to own the big yellow house on the hill.

Based on renovations and moving, it was a long process getting into our new home. I was satisfied with the accessibility renovations – although slightly different from my previous home of 15 years – and was eager to move in. As moving day approached, I was as excited as anyone.
Once moved in, however, little felt right to me. Although I’d made accessibility renovations, aspects like using the bathroom was physically different and difficult. I had to learn new ways of doing necessities like using the commode and showering. I found myself working hard to learn and adapt to new ways of doing everyday tasks, and it was physically and emotionally taxing.

My wife was phenomenally supportive toward my physical struggles, but I wasn’t being open about my emotional ones. Even I wasn’t clear on what I was feeling because, on the one hand, I wasn’t longing for my previous house, but I was wondering if this struggle was necessary just to have our dream home? I wasn’t to the point of resentment, but close to it. Every time someone complimented our home, I’d smile and think to myself, This house may look beautiful to you, but it’s wearing on me…. It’s an isolating experience pretending all is perfect when it’s not.

Yet, my wife knew all was not perfect. One night as we got ready for bed, she asked if I thought the house was a mistake based on my struggles? I was open with her and explained that I didn’t think about going backward – that is, I didn’t miss the old house – but I was struggling to move forward. Physically and emotionally, I was struggling with all of the changes in my daily routines. The house and all was great, but I was battling through the process of a profound life change, as with the process of battling to relearn my physical independence in this new environment.

That realization – where I wasn’t struggling with the house, but the process of a profound life change, itself – was a wake-up call. I didn’t need to give the house time; rather, I needed to give myself time. See, that’s a key to a profound life change: we need to allow ourselves to admit that we’re struggling with it, and give ourselves leeway to move through the process. It’s too easy to blame something, or run away, giving up on a situation. Real fortitude comes when we admit we’re struggling with change, and give ourselves time to move through it, succeeding on the other side.

I’m not there yet – the commode transfers are still difficult and intimidating, to name one aspect – but adjusting to profound life changes take time. However, I’ve been through this process before and I’m ultimately comfortable with the intrinsic discomfort. I’m tackling the changes and related emotions as they come, and I’m so looking forward to the last part of this period of change in my life: Summer evenings on the porch, enjoying the breeze passing through the century-old evergreens….

In memory of Dr. Brett Weber, who lived every day like it was Saint Patrick's Day (except for the beer!)

In memory of Dr. Brett Weber, who lived every day like it was Saint Patrick’s Day (except for the beer!)

By Mark E. Smith

Mahatma Gandhi said, “Live as if you were to die tomorrow. Learn as though you will live forever.”

If today were your last day on Earth, what would you do? The more profound question is, are you doing it?

In my forever learning, I’ve taken to heart both the fragility and power of life. In being a member of and serving those with disabilities, I’ve known many passings. I’ve watched friends die of MS after the span of a decade or more. I’ve had friends with ALS who’ve only lived three years from diagnosis. And, I’ve had friends with quadriplegia who simply didn’t wake up one morning. Even when there seems to be a predictability to death – as with a terminal condition – there’s not. Anyone of us can die at any time, disability, illness or otherwise. And, we do.

Having known so many who have passed away, it’s made me oddly at ease with death. It literally has long been part of my life, just as it’s a part of life, itself. This isn’t to say I’m not heartbroken with each passing, but I’ve learned not to struggle with the reality of death. Grief for me has become less about sadness and more about fond remembrance. My life has been changed by knowing all who have passed, and their wonderful impact on me has never stopped at their passings – it’s carried on with me.

And, there within resides among my greatest life lessons: honor the fragility and power of life, as Gandhi put it, as if we may die tomorrow. What does that really mean, though?

Living as if you were to die tomorrow means deeply recognizing the power in life we all have. For each of us, priorities are a little different, but there are universal truths. Deeply value and express gratitude to those around us by constantly reaching out to our loved ones, friends and strangers alike. Live our dreams now, rather than putting them off. Find beauty and meaning in as many moments as we can, even in the difficult or mundane. Accept what we can’t change, and move on. Have fun! And, as my wise wife puts it, “Every day, do important things.” Life is what we make it, so why not live to a degree that doesn’t just bring joy and meaning into our lives, but to everyone around us?

As for me, I’m not worried about living or dying tomorrow – I’m fine with either fate. I’m just relishing every moment of today. No matter if it’s rain or shine, I’m using my power wheelchair to dance in it all!

maslowshierarchyofneeds-svg

By Mark E. Smith

Abraham Maslow was a well-respected psychologist in the mid 20th century. In 1943, he published a paper in Psychological Review, titled, “A Theory of Human Motivation.” Put simply, Maslow explored what made great people… well… great. However, his research didn’t stop there. Over the next decade, he further studied such “exemplary” individuals, as he coined, as Frederick Douglass, Eleanor Roosevelt, and Albert Einstein. He also studied the top 1% of college students. With this data, he then defined an exact hierarchy of five traits that formed a pyramid, where if you had all of the ideal traits – physiological, safety, love, esteem, and self-actualization – you reached the ultimate state of “what a person can be.”

With his “Hierarchy of Needs” pyramid published in 1954, Maslow garnered a lot of attention. It was sort of among the first self-help paths: follow these steps and you, too, can be a fully-evolved, ultra-successful person. Yet, in the 60 years since, Maslow’s Hierarchy of Needs has been questioned. The psychology community agrees there is a hierarchy of needs – breathing obviously comes before love – but many doubt Maslow’s sub-category rankings. For example, does sex come before intimacy, or intimacy before sex, and many argue that Maslow’s hierarchy can vary geographically, from culture to culture. Therefore, there are easily-seen holes in Maslow’s Hierarchy of Needs.

As one who’s studied Maslow since college over 25 years ago, I’ve increasingly noted a gap in his pyramid, myself. No, I’m not a psychologist, but one doesn’t need to be in order to understand what we need to be healthy, successful and fulfilled: a sense of purpose.

When we look at Maslow’s Hierarchy of Needs, nowhere does he note purpose. Yet, we all know what it’s like to question our purpose, why we’re here, why we do what we do? And, when we have the answer – that is, when we feel a sense of purpose in our lives – it’s the ultimate fulfillment. I’d assert that purpose is as vital as breathing, itself. In fact, in the hospice community, we often hear of those seemingly refusing to pass until their purpose is resolved. A sense of purpose most often defines our lives in the end.

Of course, a sense of purpose is found in endless ways. As parents, striving to do best by our children, it’s impossible not to feel a sense of purpose. In our careers, if we feel that we’re truly making an impact, it gives us a sense of purpose. In our communities, if we serve others, it gives us a sense of purpose. The list goes on and on; however, there is a unifying key to all senses of purpose: we must sincerely feel we’re serving others in some way. This doesn’t mean that we need to win the Nobel Prize for medicine to feel a sense of purpose. Rather, it simply means we must feel that our actions, big or small, serve others. If you walk into a field and shovel snow, at best you’ll just get a workout. However, if you shovel your elderly neighbor’s walkway, you’re guaranteed to feel a sense of purpose.

Purpose is also wonderfully contagious, and we should never be cautious about spreading it – let purpose loose! I recently got wonderfully pulled into a flurry of purpose. A gentleman in our community saw his purpose in collecting clothing for our local men’s shelter. He emailed a single person, and she emailed another, and by the time I was added to the email chain, I was awestruck by so many finding their purpose in the project. There were collection bins being set up, locations secured, and I was like, “Heck yeah, I’ll write the PR for you!” When a purpose bus comes by, get on!

I don’t know where you’re at in your life, but for all of us, a sense of purpose is vital. Sometimes we struggle to find it, and that’s OK – having patience often leads to finding ultimate fulfillment. Sometimes, we have a sense of purpose, then lose it – it happens, and let us take time to rediscover it. And, other times we feel our purpose every day. Purpose isn’t a scorecard, but a journey.

As for Maslow’s Hierarchy of Needs, I’m writing purpose into the bottom tier because I believe it’s absolutely a foundation of our needs in life.

speak-up-quote

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.

wind-in-sails

By Mark E. Smith

If you’ve ever sailed a boat, you know it’s a combination of skill, faith and patience. Life, I’ve learned, is a lot like that, too. Many times, I’ve set a course in my life, where my abilities were only part of the equation, and having faith that it would all work out in the end – like counting on an unpredictable wind, far from landfall – was all I had to trust.

What might surprise you is that trusting in the wind of life has never failed me. As long as I’ve applied myself – like a sailor heading to sea at the helm – the winds of life have always come to carry me on my course. In the process, I’ve learned to be vigilant and have faith and patience – sometimes maintaining seemingly irrational faith and indomitable patience. But, the wind – that wind! – has always ultimately filled my sails.

Sure, I’ve found myself adrift at points in my life. As Coleridge put it in the Rime of the Ancient Mariner,”Water, water, every where / And all the boards did shrink / Water, water, every where / Nor any drop to drink.” We’ve all found ourselves adrift at points in our lives, waiting, wanting, needing a metaphorical wind to fill our sails and set our lives back on course. Maybe it was after a break-up or when we were broke or while looking for a job or, or, or…. When is my life going to get back on track?!

I’ve been there. And, what I’ve learned is that as long as we stay the helm – holding the course with faith and patience – we are never let down. The wind always comes, always fills our sails, and we always reach our destination, our purpose. We may encounter lulls and rough seas, adrift for weeks, months or years; but, eventually – hands blistered from grasping the helm – the wind comes.

For some in life, they never leave port, not wanting any risk. But, they never reach their intended destination, their potential. For others, they lose hope, giving up the ship, likewise never reaching their destination, their life’s purpose. However, for those among us who have vigilance, faith and patience to stay the course, the winds of life will take us to destinations beyond our dreams. All life asks of each of us is to take the helm and trust that the wind – although often unpredictable – will lead us through whatever journey we are meant for….