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Draft #2 … 1 step closer to publication. Tomorrow I have my weekly call with my editors and then exactly 1 hour afterwards I’m having dinner with Lisa Genova, author of “Still Alice.”

Someone pinch me!

OVERVIEW – “Lessons From the Edge of Life”

The erratic, twitching line turned to a flat, fluorescent green band across the monitor. The six nurses and three doctors stood in stillness around the bed – their heads bowed and their hands down by their sides. One of the nurses stretched up and over the pale,lifeless body to shut off the monitor before the group silently ushered themselves outof the room.

I was alone.

Alone with my dead brother.

I hesitated, but slowly made my way towards the bed. My trembling fingertips grasped his hand – it was still warm – and then quickly; urgently locked down into a grip that turned my knuckles white. He was gone. I bowed my head and felt the cool,hard plastic of the bedrail on my brow. Hot tears streamed down my cheeks, dripping off my chin, and forming small puddles on the floor. Wracking sobs erupted from my chest.

“I love you so damn much,” I wailed out loud.“But I hate you…. I hate you for dying.”

I wanted to run away from those institutional, sterile walls and drafty hallways of the medical ICU. I was no stranger to death; nor to the hospital. Duke University Medical Center in Durham, NC was where I worked as a lung transplant coordinator for 3 years. Before that I had been a critical care nurse for 10 years. Death and dying were the realities of my work. But it now seemed as foreign to me as the idea of life as an only child.

It’s not like I didn’t expect this day. Three years prior, on Mother’s Day, my brother lay sedated on the ventilator after being rushed by a medical helicopter to the Level 1 trauma center in Boston that I ironically used to work at. His spinal cord had been crushed, and his brain bled inside his skull after he lost control of his motorcycle and was thrown 30 feet through the air. The injuriesleft him paralyzed from the chest down.

I never expected to be on the “other side.” Yet there I was. In that place where the grieving loved one seems beyond consolation. I had always had empathy for my patients and their families. Each shift, as I cared for the critically ill, adjusting their IV drips and suctioning out their breathing tubes, I would wonder, “What if this were my family member?” Now I knew. The devastation was like a hot, searing knife being plunged deep into my chest.

Will, my brother, my only sibling, was 30 years old when he died. That day introduced me to the indescribable pain of losing someone you love. When his body violently slammed against the pavement and broke, I grieved the loss of his ability to walk, but at least there was hope fora second chance at life. The day he died, I had watched the nurses take turns compressing his chest for 2 hours as they furiously tried to save his life. Now, sitting next to his lifeless body, behind the muted pink hospital curtains, hope was gone. There would be no second chance.

Or would there? At 7 am, only two hours after his death, I received a surprising phone call. Standing there, in my empty office, next to my husband, both of us bleary eyed and numb, I looked up at him and said, “Who would be calling me now?” The only people I had notified by this point were my parents and my best friend. I hesitated, but something deep inside me urged me to answer the call.

“Hello?”

“Hi. I’m looking for Emily Johnson.”

“This is she.”

“Emily, my name is John Anderson and I’m calling on behalf of Carolina Donor Services. I’m calling about your brother, William Archibald. I’m so sorry to hear that he has died. I want to express my condolences and talk with you for a few minutes about how William can help some people through the gift of tissue donation.”

I remember standing there, dumbfounded, thinking, “Oh my god – YES!” I had always known that Will was a registered organ and tissue donor, but in that instance, I had completely forgotten. I was initially shocked by the call but then relief quickly washed over me knowing something good was going to come out of this unbelievably horrible nightmare. While it did not take away the pain of losing Will, I knew that someone else’s pain would be lessened by his gift. This was Will’s legacy. A year after his death, I would learn that a man and a woman from North Carolina, both in their 50’s, had their sight restored thanks to Will’s corneas, and that a young woman in Philadelphia had a healthy heart thanks to the gift of his heart valve. And then there was the day when a routine walk to the mailbox brought an unexpected comfort: a letter of gratitude from an anonymous person who was the recipient of one of Will’s tendons. She had been wheelchair bound with tremendous pain but thanks to his gift she was now able to get up out of her chair and walk. Hope was in fact, not lost.

After Will’s death, my husband and I relocated back to Cape Cod to raise our family. Leaving my work as a lung transplant coordinator was an extremely difficult decision. It had been a unique and rewarding job, one in which I had the privilege to witness not only the miracles of transplant medicine, but also the astounding transformations people made after receiving their second chance at life.

As we settled into our new home in East Sandwich, MA and welcomed our second son into the world, I was thrilled to discover an opportunity to work as an organ donation coordinator for New England Organ Bank (NEOB). The responsibilities were extensive. The commitment of 24-hour shifts was exhausting. But the work made me feel complete. As a former transplant coordinator, a donor sister, and now, a donor coordinator my work unveiled all sides of the complex, sad, and joyous world of transplant medicine.

The years witnessing people give and receive the gift of life through organ and tissue donation included some of the most beautiful experiences of my nursing career, and my life. I watched heroin addicts die before they had a chance to get clean; watched mothers lose the chance to see their babies graduate from high school; watched children die before their 10th birthday; watched engaged couples lose sightof their wedding day in the blink of an eye. I watched a retiree pass away before she could take that long-planned trip to Europe. I watched a college graduate fade away because of suicide – long before she had a chance to pursue her dreams and realizehow amazing she was.

I also got to witness a grandfather go on to see another birthday and pursue his passion of sailing. I watched a young mother thrive after not just one double lung transplant, but a second transplant after her first one failed. I watched a college student go on to graduate nursing school and I watched a former Navy Seal navigate post-transplant complications only to go on and summit Mt. McKinley.

Bearing witness to all these endings, all these beginnings, taught me things and became the catalyst for an awakening. I learned how the undulating waves of grief strip you to your core, washing away the surface debris of life and push you to a place where salaries and titles have no value. I came to understand that grief is not a linear process; sometimes it’s, more of a soft fading in, like morning light. Or at times, like a sharp, pelting hail that stings your soul. The deep throbbing pain that expands to the marrow of your bones is the price we pay for love. My experiences caring for transplant recipients taught me about the strength of the human spirit and that the will to survive knows no limit. Even in our darkest hour there is light.

My book, “Lessons from the Edge of Life: A Transplant Nurse’s Observations on Second Chances and What We Can Learn from Them” is a compilation of ten organ and tissue donor stories, as well as ten transplant recipient stories. These stories offer a glimpse into some of the most personal moments in human experiences, shedding light on what happens when we depart life or when we receive a second chance at it. The epilogue of my book will be prescriptive in nature; inviting the reader on a journey of self-inquiry.

Over the course of eleven chapters, the reader will have a privileged view into the fascinating world of transplant medicine – a place of mixed emotions – where one life lost becomes another life saved. The reader will learn about the intricate process of organ donation and transplantation in this relatively unmined field of literature. According to the United Network for Organ Sharing (UNOS) there are 114,523 people waiting for a life-saving transplant. Every ten minutes someone is added to the waitlist and everydayan average of 20 people die waiting for a life-saving gift. Twenty people – gone. That’s the average size of a kindergarten classroom.

Readers who enjoyed Dr. Paul Ruggieri’s book “Confessions of a Surgeon: The Good, the Bad, and the Complicated…Life Behind the O.R. Doors” or Dr. Katrina Firlik’s book, “Another Day in the Frontal Lobe: A Brain Surgeon Exposes Life on the Inside” will be drawn to both the personal stories of life and death, but also to the professional vantage point of a widely unknown process. My book will serve a wide population, both of medical professionals and lay people, and will help to dispel the many myths surrounding organ and tissue donation. Readers will understand what brain death truly means and they will see that it is possible to have an open casket funeral after donating their organs and tissues.

I invite you to come with me on a journey toward the edge of life. To experiencethe legacies of lives lost and to witness what second chances have to offer. Second chances open the door for new opportunities; new life. My hope is that after reading these stories you will see that second chances are there for all of us if we are brave enough to seize them.

 

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