How a Dire Prognosis and Recovery Inspired My Novel

Life is messy. It can even be scary at times. But when you are faced with almost certain death? No one can prepare for that. In April 2009, I was diagnosed with a lung disease called idiopathic pulmonary fibrosis, or IPF. This disease slowly turns healthy lungs into scar tissue that is too inflexible and dense to breathe through, such that the patient slowly suffocates. There is no cure and the approximate life expectancy is five years. I was 49 years old and not ready to die. In addition, I had a husband and three children, the youngest of whom was only five. The furthest thing from my mind was: Maybe I’ll get a novel out of this. I wanted only to squeeze out a little more time.

(4 Things I Learned About Trauma While Writing My Latest Novel.)

By year-end 2014, having exhausted all drug and related therapies, my only remaining possibility was to find a hospital that did lung transplants. My rare blood type and unusual antibody profile meant that the already difficult process of finding an organ match would be harder than usual. The next few years were taken up with working towards and recovering from my transplant. That period was intense, terrifying, and painful but also filled with love, hope, and self-discovery which eventually became the backbone of my novel, The Fragile Breath. 

The story by itself was just begging to be written—there was drama inherent in the situation. Patients can die while waiting for a transplant or be removed from the transplant list if their health worsens to the point that they are no longer viable candidates. Transplant hospitals often require everyone hoping for lungs to do physical training before admission to their program. While rigorous aerobic exercise improves post-surgery outcomes, it’s very difficult for patients with poor lung capacity.

Over time, the lung patients slogging through this exercise “boot camp” bonded. Many of us lived in a rental complex near the rehab center and would socialize between exercise sessions. Like a small village, we knew when anyone disappeared because they had received a transplant. We also knew when someone was gravely ill, and when someone had died. We celebrated when patients returned for post-surgery rehab, hoping that this would soon be us. Rehab village had an assortment of interesting characters, such as the macho surgeon who encouraged us to “embrace the suck” as if we were Navy Seals, or the gruff therapist who barked at us during group class to conceal their innate kindness.

Despite the unknown timing of our surgeries which were dictated by transplant rules and luck, we became a cohort like any high school class awaiting graduation. My transplant cohort was able to treasure moments of humanity, friendship, and laughter wherever possible. Many of these unexpected moments of joy found their way into the book.

I had been at the center for almost five months, and had started to lose hope when I received the call from my original hospital in New York that they had found me some matching lungs. We threw some things in a bag, raced to the hospital, and, by a miracle, received a successful transplant of a left lung.

My recovery process is described accurately in the book, and it was, to say the least, challenging. Everything that I had been told to prepare for felt like an understatement: There was no preparing for this. I could only hang in, day by day, and hope for things to get better. It was months before I was strong enough to re-enter my life, and longer until I was able to write.

The book itself began as a series of anecdotes told to my friends about my transplant experiences; some were weird, some funny, some tragic. Knowing I was a writer, they urged me to write about these stories. Beyond my desire to tell a good story, I felt the survivor’s obligation to help provide hope for others seeking a transplant. My book might also help the friends and families of these potential patients better understand what they were going through. Finally, and most importantly, my hope was that someone might read the book and decide to register as an organ donor.

Spurred by my friends’ encouragement, I began to write what I thought would be my lung transplant memoir. The problems began almost immediately. I’ve never written nonfiction (to be honest, I barely even read nonfiction). Every time I tried to find the words, it didn’t sound like me. What kind of memoirist sounds less like themselves the more they write?

I worried about specificity, and remembering exact facts about procedures, or precisely what was said to whom. I thought of times I’d heard about readers complaining that the author had mentioned the Amtrak at noon, when it was in truth the Metro-North at 12:15. But the biggest obstacle to writing a memoir was that I had drastically underestimated the trauma that was still present in my body. Once I sat down at the keyboard, my body reacted violently, rejecting what I was trying to say. For days, I cried as I wrote, feeling again the fear of those bleak months. For some people, talking about their trauma can be healing. But writing about my experience wasn’t catharsis, it was a reliving, and my body didn’t want any part of it. 

One afternoon, I was driving my youngest son across the George Washington Bridge when I suddenly had trouble breathing. My body remembered that this was the same route I had taken six months earlier as I raced to the hospital. Then, I had 10 more minutes before the hospital gave away my new lungs to the next person on the waitlist. On the day of my transplant, everything was chaos. We landed in New Jersey at 6:30 pm on a Friday in the summer and the 10-mile path to the hospital was clogged with weekend traffic. A New Jersey police car escorted us through the oncoming lane to the entrance to the Bridge where New York police cars lead us across the span and into the hospital complex with moments to spare.

In transit, I deliberately calmed myself, knowing that I would need all my resources to survive the surgery. Five months later, my crossing the GW Bridge triggered a painful flashback to the raw trauma of the transplant and its subsequent medical issues. Now I was shaking, tears streaming, trying to retain control of the car so as not to frighten my son.

At this point, it became clear that I needed a different writing approach to keep the fear at bay if I were ever going to make any progress. Eventually I decided to try creating a different character to hold all that emotion, and that is how Fiona Copeland was born. Fiona became the one degree of separation that I needed to create enough distance from my own traumatic experience. Writing about a distinct person was so much easier, and I felt the words start to flow.

Fiona had different life experiences, different reactions, and different thoughts. Most importantly, she was decidedly not me. This strategy made it possible to hold whatever happened to her at enough of a distance that I was able to write. Fiona became a friend, a close friend, who had a remarkable number of things happen to her—some horrible and some wonderful. I’m an empathetic person and I felt sorry that she was going through all this, but I didn’t take it personally.

Other components began to take shape once the main genre problem was solved. Returning to fiction was an enormous relief. The reason I like fiction is that it’s about the feel of the story—it doesn’t have to be word-for-word accurate. This made sense to me. The story had always felt that it belonged in the first person so I put it in Fiona’s voice, and now the narrative felt aligned. As a work of fiction, it was possible to create other characters and scenarios for Fiona, which was always the most fun part for me.  

I gave her more points of joy and self-awareness; after all, the book was intended to be a celebration of life, and I wanted the reader to feel that emotion, despite the serious theme. Throughout the transplant period, the ability to “find the funny” had saved me from despair on several occasions. That was indispensable when I was sick, and I wanted it to be a part of the book. Since my transplant, I now find myself drawn to happier movies, books, music, and most of all, people.  

There were a few other important decisions that I made in the course of writing The Fragile Breath. In real life, my three children had suffered for several years through having a sick mother and a distracted father stretched too thin.  Our household was not a normal one, if there is such a thing. The existence of kids in the story would have intensified the drama and raised the stakes for Fiona’s survival. The problem was that I had no way to gauge the impact on my own children of the past couple of years, and I was hesitant to write a fictionalized account which might be an invasion of their privacy.

In the fictional story, Fiona is childless but forms an unexpected but extremely powerful bond with the young daughter of her caregiver. Her love for this found family helps Fiona to navigate the final and most difficult month of her transplant process. Transplants cannot happen without a lot of help. The incredible contributions of my family and friends made my successful transplant outcome possible. Fiona and her found family enabled me to incorporate this kind of love and support into her story without oversharing details about my own family situation.

Another major decision in crafting my fictional account of a lung transplant was that, at no point in the story, did I ever give a physical description of Fiona. I knew, of course, that a carefully written description is intended to help the reader form an image of her in their mind, but I had a more important issue to raise. Lung disease can happen to anyone. I wanted whoever was reading the book to imagine themselves in Fiona’s situation… complete with her triumphant rebirth on the other side of the process.

In the end, my book is an authentic story of one woman’s lung transplant journey. The majority of the plot situations derive directly from my own experiences. Very little fiction has been written about organ donation and my hope is that The Fragile Breath will help raise awareness of the transplant community.

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