Uncategorized – PowerchairDiaries

The Morning After

As I stare into the roaring fire, I realize at some point it turned dark outside. Yet, when I started my day at 3am, it was dark then too. My other senses then kick in, and I realize how quiet our 100 year old farm house that my father was so proud of was. There is no sound of wheels on the hardwood floors, no murmurs of faint wheelchair motors, and no high-pitched laughing squeals coming from the man in the chair. There are no more “Emmas”, no more I love yous, and no more dumb dad jokes that I secretly loved even though I would roll my eyes.

The hundreds of likes, comments, messages, food gifts, and condolences pour in. It all weighs so heavy, and I return to the empty sound around me.

No one tells you what the dying process is like. No one talks about the agonizing weeks of watching the one you love most become skin and bones, stop eating, stop drinking, and eventually being unresponsive and barely breathing. No one discusses the grief you process while they are still alive, yet barely hanging on. No one discusses the switch from “Please don’t go” to “Please, let go, it is okay to let go. We will be okay”. No one discusses the “I want you back” pain that surges through your entire body when they finally pass. No one discusses the quiet sound of your own mind and your own grief hours after it has happened.

Death is such a touchy, almost sacred subject. We as humans are conditioned to just respond to news with “I’m so sorry for your loss, they are not suffering anymore” followed by check ups with “Are you ok? How are you doing?” and we are so conditioned to respond with a simple “I’m doing fine” or a “Hanging in there”. Why?

Why are we as complex, emotional human beings, so afraid of showing empathy and real emotion to each other in times of deep need? So much tragedy happens in the world around us, as well as in our lives every single day, and yet we are conditioned to move through it quietly and peacefully.

What we experience in life will never be easy, and we all share so much more in common than we realize with this. Losing parents, losing loved ones, failing, succeeding, wishing-all complex emotions that we all experience. By allowing ourselves to feel them, express them, and share them with one another- we can create a profound movement of empathy and compassion surrounding life’s woes.

I encourage you to take a step back this evening, and allow yourself to feel what you need to feel. Embrace it, almost as much as you need to embrace those around you. Love is a complex, difficult, yet beautiful thing. Let us love as we grieve.

// To my fathers readers, I thank you. The community of Wheelchairjunkie and powerchair diaries was something so unbelievably special to my father. Immercing me in a community of empowerment, empathy, and connection was something my father wanted everyone to experience through his community on wheelchairjunkie and through his writings. Many feel his work was a safe haven for the disability community, but in reality, was a haven for himself. Words will never be able to describe the light and love you all have given my father throughout these last 18 years. From the bottom of my heart, thank you wheelchairjunkies.

If you wish to continue reading the work of the smiths, I invite you to follow my own blog. http://www.transitionalwritings.wordpress.com

-Emily

Taking Control of Control

By Mark E. Smith

We all need a sense of control in our lives to feel… well… in control. In fact, a sense of control is vital to our contentment.

However, there’s a paradox to control in our lives, a bell curve. While feeling a sense of control is fundamental to contentment in our lives, if we take it too far, we crest a bell curve and it begins to harm us. Specifically, when we try to control that which we inherently can’t control – from worrying about the weather to what a health issue may bring – we devolve from contentment into stress, anxiety, and fear. Interestingly, trying to control that which we can’t control makes us even more powerless because it escalates our emotions to a state that can become irrational – that is, out of control.

I’m very much a control-oriented person, and I’ve seen both sides of the paradoxical bell curve. On the one hand, assuming control in my life – including aspects surrounding my disability – has allowed me to accomplish much that others said was impossible, and that’s tremendously empowering. On the other hand, I’ve tried to control the outcome of events and circumstances that I couldn’t possibly control – from health issues to whether my wheelchair would be damaged on a cross-country flight – and it tied me up with stress, anxiety, and fear.

Personal responsibility and understanding go a long way toward managing the paradoxical bell curve of control. Again, to feel a sense of contentment, we must assume as much control over our lives as possible. We shouldn’t leave all to chance; rather, we should empower ourselves to take control of our lives and its directions where we can. If we don’t take the wheel of our lives, we’ll never get on course.

However, we must also know where to draw the line when it comes to irrationally trying to control that which we can’t. For example, most of us would fear a surgery. Yet, we have no control over what happens when we’re on the operating table, so rather than trying to predict and control the circumstance – which is impossible to do and causes stress, anxiety, and fear – we could go into it with a sense of peace, understanding that the best position we can take is, I’ll see where I am when I wake up, and go from there.

Having intrinsic trust in our lives, in fact, is how we master the paradoxical bell curve of control. We must recognize that we are able to take needed control in many aspects of our lives. Likewise, we must be at peace with that which we can’t control, but trust that no matter the outcome, we can handle it.

Although I’ve long traveled alone, I used to experience tremendous stress and anxiety leading up to trips, thinking of all that could go wrong. It was a way of trying to control that which I couldn’t control. I had no way of preventing a damaged wheelchair on a flight or ending up with a less-than-accessible hotel room – I could merely wait to see what transpired – but I worried about it profusely. I eventually realized two fundamental aspects that all but eliminated my stress and anxiety, making travel far more pleasant: Firstly, I accepted that I had no control over certain aspects, so there was no point in worrying about them. Secondly, I learned to trust that if something did go wrong, I could handle it. This perspective, which I’ve applied to many other aspects of life, has allowed me to approach possibly-disconcerting circumstances with far less stress and anxiety. I don’t know what’s going to happen, so I’ll cross those bridges if they arise. Until then, I’m not worried about it.

When we draw a line in our lives down the center of the paradoxical bell curve of control, it puts us in more control than ever. We know what to control and what we can’t control, empowering ourselves while reducing stress. And, that’s the formula to have ultimate control in our lives.

Our Third Dimension

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!

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!

House on the Hill

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….

This Day

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!

Penciling-In Purpose

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.