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
PowerchairDiaries 
This was a gut punch. I am so sorry for your loss. I didn’t know Mark well, but admired his courage from afar, ever since high school. The world can’t afford to lose any more good people like Mark.
Oh my heart …..
Your Dad was one of the great ones! With everything he went through, he still had that great big smile and a love for life and people! I met him just a little over 2 years ago, and am honored to have been able to call him my friend! He will never be forgotten!
I’ll be praying for you and your family these difficult days ahead.
Your Dad’s powerful writing and creativity and many other GREAT things live on in you.
Dear Emily, I am crying so many tears for your loss, Holly’s loss, Annie’s loss, the world’s loss. It is unfathomable. I’m so impressed that at such a young age, you see the fallacy of moving through grief quietly, peacefully, what some would call heroically. But suffering alone and in silence is not heroic; may you shout when you need to shout and sob when you need to sob and laugh when you need to laugh, even if laughing feels wrong somehow in a time like this.
Emily, as you know your Dad was a tremendously strong person. His ability to share his thoughts and feelings was a real talent and gift. He made a real positive difference in the world through his writings, speaking, and thousands of personal interactions. We will all miss him and our thoughts and prayers go to you, Holly, Annabelle, and the rest of the family.
So sorry to hear. I tried to get to know Mark for some time, since we were both wheelchair super stars, his star was much brighter then mine. I always envied Mark E. Smith and all the work did. I will miss him and his comments on his blog–Thanks for all your insights…
Emily, you have your father’s wonderful heart beating in your chest. He is smiling down on you today, so proud of the little girl he raised who grew into a magnificient woman of depth and compassion. As you navigate your life without his physical presence, know that you are absolutely correct in allowing every single emotion to surface and be expressed. The most important legacy Mark left is you.
Your dad’s writing and advocacy touched many lives. I was so sad and sorry to hear of his passing. Even though we never met in person, our online connections left me with an appreciation for his talents. Take the time you need to grieve in whatever manner you need. My thoughts and condolences are with you and your family.
I always looked forward to receiving Mark’s blogs in my e-mailbox, as well as to saying “Hello” to him as he tooled down the halls at Pride Mobility. Learning of his passing this morning brought me and my co-workers to tears. Mark positively touched the lives of innumerable people, and my deepest sympathy goes out to you and your family at the loss of this remarkable man.
Emily and Smith family,
This news is overwhelming and devastating. Mark was a true gift to this world and the lives he touched. His smile, his laugh, his spirit and grit, his great empathy, his… everything… will be missed. He was my friend and mentor. I am honored to have known him. I am a better person for it. You, Emily, were his greatest joy. His love for you, Holly and Annie was immense. You are all in my thoughts and prayers, but know he will never truly leave you. We will all keep a piece of him with us.
Mark, thank you for the adventures and for your beautiful friendship. You helped me find my wings and meant more to me than words can ever convey. I will carry you in my heart, Toots.
I was a classmate of your Dads in HS. It was great to know such a person. He brought thought and humor into the classes we took. A memory I have of him is when he had to do a book report and he picked “Zen and the Art of Motorcycle Maintenance”. Mrs. Bell wasn’t pleased and didn’t get why he picked it but boy did he give a report on it. It made me think out side of the box. I too have a disability yet mine I can hide and not show. Yet your Dad , he didn’t care. It was like when someone would ask a dumb question about his wheelchair and he would turn it back on them saying “What wheelchair”? Then on graduation day he got a standing ovation as he wheeled across the stage of our graduation (Not the Valedictorian) He did. Some strong boys hoisted him up the stairs (Before the ADA Act) so he could partake in the ceremony. I believe everyone stood for we knew that he didn’t let anything get in his way. Now reading his blog and other items. Wow they were right. What a life. This piece also touched me for my first husband died from cancer 5 years ago and I could see it all over again through these words.
Sorry for your families loss. May he and you all find peace.
It was a pleasure knowing you Mark. Rest In Peace my friend, you will be missed.
I stumbled upon Wheelchairjunkies many years ago. It changed my perspective on how I viewed my own disability. I am proud to say that Mark had a lot to do with that.
May you now be racing among the stars.
Miss Emily Smith, I just found and read your essay. Please accept Mama and my condolences to you and all members of Mr. Smith’s family.
I found Wheelchairjunkie many years ago and Mr. Smith was always very kind and generous to us as well as anyone that ask for information and/or assistance.
It was always a joy to see how full of joy he was especially when he posted pictures of you growing up.
I am so happy he found his new family to share this joy of life with along with you.
Mr. Smith will be long remembered and deeply missed.
Sincerely,
Mama and MikeP
Thoughts and prayers to the entire Smith family during this difficult time. It was a privilege to have known and worked with Mark. He was everything we should all aspire to be and will be greatly missed.
I just learned of Mark’s passing, my heart goes out to all who knew and loved him. I have followed his career since his book Growing Up With Cerebral Palsy was first published, and I have read it, given it away, and rebought it more times than I can remember. I have two sons with special needs and disabilities, Mark’s book has been one of the greatest encouragements of my life. I had always hoped to meet him some day, I feel like I have “known” him for so long, and I will miss his blogs and writing so very much. Anyone who crossed paths with Mark has been privileged to experience greatness in one human being. May all those he loved and touched with his life, his humor, his tenacity be always blessed with memories of Mark.