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Julia Hayes
No Worries Farm, Spokane, WA

mother and daughterWhen I was asked if I'd be interested in submitting something for this newsletter my first reaction was to laugh followed by a tongue-in-cheek off-color quip, "I suppose I could cough up a lung and give it a go." As I write, I can't escape thinking that I'm an outsider—a fraud trying to weave some thin thread connecting my writing, which is predominantly about the mystery that is life and death characterized by the cancer journey, to the intricacies that define the trials and triumphs of heart and lung transplants.

But life is transparent and simple despite complexity if one dares to look just below the surface. There, it is easy to find the threads, to see the connections and to know that not only does each person have a story but as Rachel Remen, MD says, "Each person is a story." It isn't too difficult, therefore, to know just how connected we really are and this awareness comes through with grandeur in our stories.


It was the dead of winter when I heard the unmistakable knock-knock-knock of Death at my front door. Strange how life does that—knocks when we least expect it, forcing us to navigate realities we'd rather just ignore or pretend never existed. But there's no mistaking this knock. It resonates cold and hollow in the core of one's knowing. Too terrified and worried that if I opened the door I would allow Death in, I simply stood on my side and listened, desperate for it to go away. Death hissed like water upon flames, "I am leukemia and I have come for your daughter, Aria." She was 4 years old and it was inconceivable that the light of her life danced upon a diminishing wick. I held my breath and listened some more. Death's haunting voice swept through the rafters of my mind threatening to collapse my thoughts. Its chill blew, "I am merciless and I will make her suffer. All you have are moments."

An innate almost reflexive response to news of a life threatening disease is to cling to life as it was and fight the current of life as it is. Aria's leukemia diagnosis and 2½ years of chemotherapy treatment shattered life as I knew it. There was no holding on. There was nothing there but a black and white outline of an old life ready for an entirely new palette. I knew better than to stay attached to how things were. But I was terrified and the darkness of constant uncertainty descended with blinding heaviness I still cannot describe. Moments of flickering hope hinted that we would see the light again, but something told me that I needed to see Death. I needed to face its possibility but I couldn't open my front door.

So instead I entered the blog of a young woman named Eva. She had cystic fibrosis and when I grabbed hold of her journey, she had just been told that she was in full rejection of a bilateral lung transplant that she'd received two years earlier. Eva was a vibrantly beautiful woman full of artistic glamour. She didn't shy away from showing her hundreds of followers the darker side of the lung transplant journey, one of the things that made her so endearing. She was brutally honest and real.

I spent hours going through her past blog posts—moments in time when she was wearing a pager 24/7, waiting to get the beep that her new lungs were ready. I witnessed a moment when she grieved the loss of the person who was giving her a second chance. I watched her recover and do extremely well. I cried when she ran her first marathon. I cheered with her when she no longer needed the tubing in her nose connecting her to oxygen, which was as familiar an adornment as a necklace. Long stretches of time went without a story or a poem because she was too busy living life—going to college, finding love, enjoying the scene of youth in a metropolitan city. Hints of future plans whispered throughout her poems and videos until one day when her oxygen reappeared.

Shadow had returned and she knew. Helplessly, I watched her decline. In her final video posted a few days before her death, she was surrounded by her family in a hospital room decorated with roses sent to her from thousands of people from around the globe. Her last message and wish was that we love one another and that we live every moment we have. The day she died was one of most sorrowful moments of my life and at the same time I was empowered to face Death and its incessant presence. Eva taught me what it was to hold sorrow and joy, as well as fear and courage in the palm of my hand. I will always be indebted to her for that.

It is entirely because of Eva that I learned to stand before Death fearless in spite of moments of real terror. As I watched her live and relish every moment she had, I'll never forget the day I opened my front door and saw the ghostly image of Death that had been a lingering and oppressive force for months. It was so cliché! Aria was in my arms because she had stopped walking and there, just on the other side of my door, a swirling misty soot, blackened and gray, was dissipating like an ember taking its last breath. The life so powerful and present within Aria despite her weakened body, told Death that it was time to leave.

It's been roughly 3½ years since that moment. Aria is so well that no one would have any idea how cancer had governed our lives for so long. We know what it means to savor the moment, to live in the moment, and sometimes to conquer the moment. We live every day steeped in gratitude knowing that there are no promises and no guarantees—only life as it is right now.

Our experience has led me in a direction of which I never would have conceived. That is, I walk beside and witness many families having to face Death, as well as many others learning to live life all over again having scraped out of the clutches of death with scars that don't ever really fade. It's odd and somewhat warped that I now talk about death as easily as tending my garden but I do. I don't have the fear I once had—not even close. Instead, I have a strange kind of courage, if that's what you can even call it. I don't feel brave or fearless, but rather, present and solid in a state of complete acceptance and surrender. I have come to trust this process of living and to bask in the glory of how it IS, precisely because it is. I am not without wavering moments, however; when I feel the sway of uncertainty come upon me, I remember these words:

"When you have come to the edge of all the light you know, and are about to step off into the darkness of the unknown, faith means knowing two things ... There will be something to stand on, or you will be taught how to fly. You will be led." ~ Anonymous

Disclosure Statement: The author has no conflicts of interest to disclose.