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This time, on November 25th, at 5:00am, I was sitting on our handmade leather couch when I heard the thumps of 2 men carrying a gurney down our rickety wooden stairs. “Don’t look, just stay there” our dear family friend Heather says to us. I sit there, with a tear rolling down my face, rubbing my mothers back as she weeps.

I don’t think I have ever felt as numb as I did in that moment.

I can close my eyes and vividly recall the moment Holly woke me up to tell me he’s gone– I can vividly recall the lifeless body in the memory foam bed, the open yet sunk eyes, the blue skin, how cold he was. This memory often sends me into panic attacks.

The days that followed have blurred together at this point, filled with food, condolences, and stress of planning a memorial service and cremation.

But perhaps what has really blurred together has been this past year. It oddly feels like his passing was yesterday, and also 7 years ago, all at the same time.

What I can recall most are all the moments where I learned what grief and living after really means.

You see, about a month after my father passed away, I was pulling into my apartment complex late at night, hoping there was an open spot in the lot in front of my apartment, so I didn’t have to walk across the complex in the cold. Snagging a spot past 9PM is impossible, so I held my breath as I pulled into the lot. As I near the end, I see a open spot in between two small cars, hiding away, and waiting for me. Without hesitation, I yell “thanks Mark!” into the universe and pull on in. From that moment forward, I allowed myself to live his truth.

Living a deceased loved ones truth is embodying all they are, while allowing yourself to grieve. It’s in this time I started to allow myself to learn from my grief.

Thus, here are 5 lessons Mark Smith has taught me in my journey with living and grieving long after he was gone.

1.) Most forget. I don’t mean to put that so harshly, but it’s true. After the noise settles down and the first month or two passes, everyone who came out of the woods to send their condolences disappears, and you’re left with your family to grieve.

2.) Grief is forever. They often say it gets easier with time, but the truth is— it doesn’t. You will always long for their voice, their hugs, whatever it may be. You will always see things that remind you of them. You will always have days where it creeps up on you. Grief is not something you move past– it becomes apart of you. Grief is just apart of your story now, and you move forward with it.

3.) Honestly, you become a little more quirky. You develop things that are only relative to your deceased loved one and your grief. For example, we always have to point out a red cardinal, or every time I find a parking spot by my apartment late at night, I have to shout “thanks Mark!”. I now only get blue slushies (sorry cherry flavor), and I check my social media memories everyday like clockwork hoping memories of him pop up.

4.) You often battle with yourself. You feel silly or insane for getting overwhelmed at the grocery store, for crying on holidays, for needing to breathe more than you did before the passing. But the truth is, by putting all our energy into pretending we are unaffected by the worst, we block ourselves from the best. As traumatic and heart wrenching as grief is, if we don’t allow ourselves to feel it, we will never grow from it.

5.) You learn to surround yourself with those who fulfill you, as your tolerance grows smaller. More than anything, this past year has taught me what it really means to not sweat the small stuff, and to be in relationships are filled with love and nothing more. My inner circle is filled with people who will sit for hours and let me tell stories about my father, who go to a 7-11 to get blue slushies, and who do a toast to my father at our friends-giving. Of course, this took some weeding out, as I learned that I needed those who could support me, and unfortunately, not everyone can.

I could write a whole novel on what only a year has taught me about grief, but what I have learned most is that grief is lovely, dark, and deep. It’s unique, personal, traumatizing, scary, painful, beautiful, and a whole array of other words.

How we carry on after death is just as unique and confusing. Yet, somehow, they are just as alive as they were before. We carry their life with us, telling stories, listening to their favorite music, posting photos, and thanking them for parking spots. Love does not fade when someone dies, rather it blossoms and fills up more space in the memories we carry, allowing them to live on through us.

In the wise words of Mark himself, “There’s little finality to death for the living. Those passed remain with us, alive in so many ways.”

Thank you Dad, for always saving me a parking spot.

May 25, marked 6 months since we lost Mark.

As much of the Psychology nerd that I am (it is my bachelor’s degree afterall), I can’t help but disagree with the infamous Kubler-Ross 5 stages of grief.

I firmly believe that grief takes it own form and is different for everyone– you can’t group it.

We all experience loss differently, even if we share a common loss. I experienced the long month of watching my father wither away and pass differently then my step mother/his wife did. We both found this to be comforting that we shared it, but also extremely isolating. She has felt incredible loneliness in her altered everyday life, while I have felt loneliness in watching all my peers have their parents to guide them in the scary journey of adulthood.

In a way, we both find it hard to feel that anyone could ever relate to the loss we are still going through. I think that is what I have learned most thus far– that no one will understand. Loss & grief is something profoundly deep and personal, yet universal. This makes it extremely lonely. You have so many emotions, moments, and even regrets that are unique to you.

I also have learned that in our society, grief is a very taboo subject. Sure, we are there in the immediate passing, but what about 4 weeks, 4 months, 4 years down the road? We move forward with our lives, while those dealing with the loss are often stuck. We stop checking in, which can come accross as stopped caring. We have learned that grief and loss goes far, far after the immediate loss.

We as a society need to re-imagine how we deal with grief. We need to realize that grief is lonely, heartbreaking, and a forever road. How can we give adequate support down the road?

We all experience loss in some shape or form, so let us learn how to care for eachother down the road.

My father always turned things into a life lesson. Somehow, he managed to turn his own passing into a life lesson that we are still learning 6 months later. That is just the force he was, and will always be.

-Emily

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

 

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.

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!