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.
Transitional Thoughts 
This is beautiful and as eloquent as your father. He had an incredible spirit and gift that one can only try to emulate and carry forward in the work we do. He was a friend to myself, to all. Thank you for sharing your thoughts so beautifully.
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you are the light at the end of the tunnel.!!! knowing you have what it takes to navigate this world is what heals everyone that has been cancer sick.love you girl ~ Aunt Snuffy
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Hi, Emily.
I am so sorry for your loss. I know how much your dad loves you, and how proud he is of you. Your words here, written in your tremendous grief but with tremendous love, have the power to help others who are living with loss. Thank you for sharing.
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Emily,
You don’t know me, and I only know you through your dad’s writings. I enjoyed his writings for years on many levels. I have been entertained and motivated, but mostly I have been moved. His writings have inspired me. I am a PT, and do my best to help children and their families obtain equipment for mobility. His writings on equipment have been a tremendous resource for me, and I have recommended his website to many families over the years. I teach pediatrics in a local PT program, and have recommended his website and books to students. I was fortunate to meet him at one of the equipment expos. We corresponded a few times over e-mail about several of his essays, and one of my favorites was one he wrote about a fathers influence on daughters. There was also one where he included some of your writing (for a psychology class, I think?) where it was clear you had many of the same insights and ability to share with others that I saw in your father.
I read through your entire essay on his website just now, and thought it was him writing until the very end. Wow, I am shook by his passing. I was not aware of his illness. You have so much potential and greatness inside you. I pray for comfort, peace beyond understanding, and tremendous success for you in the days to come.
Thank you very, very much for writing this essay.
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Emily, I’m yet another colleague of Mark’s who you don’t know, but as his editor at New Mobility magazine for many many years, I was deeply moved by your sharing of such deep loss. And I’m truly sorry for you and your family. From my limited perspective, the Mark I knew was a true professional who never missed a deadline, never complained, and always came up with yet another “Innovations” column that had much to teach us. The name of his column could also be applied to his life. And I’m just beginning to realize how innovative he was in the way he dealt with his painful journey through cancer and beyond. What he leaves for all of us is a smiling face and upbeat personality that is unforgettable, and much more. He said it best: “Those passed remain with us, alive in so many ways.”
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