Better Than Blurbs: Lost in Transplantation by Eldonna Edwards

Because I no longer write blurbs, but still very much want to help other authors, I've launched a blog series called Better Than Blurbs. The authors and I will have in-depth discussions about their books, which I hope will help readers identify whether they'd enjoy reading them. This is the eighth post of the series. The author is Eldonna Edwards, and the book is Lost in Transplantation: Memoir of an Unconventional Organ Donor.

Me: Eldonna, please Tell us about the book in your own words:

Eldonna: Lost in Transplantation isn't just a chronicle of a living donor, it's a book about life and the decisions we make when given difficult choices. The memoir is interwoven with stories about growing up as a Bible-thumping preacher's kid, my work as a massage therapist, raising children—mostly as a single mother—and the seesaw transitions of menopause. There’s a good deal of humor in the book to balance the serious topic. My goal is for others to relate to me as a real person rather than putting me on a pedestal for giving a kidney to a stranger, thereby dismissing me as an anomaly. I believe we are all capable of being someone's hero and you don't have to undergo surgery to achieve that end.

The memoir describes my journey as an organ donor but it also tells Kathy's (my intended recipient) story and hopefully the reader's as well. We all struggle, we all have dreams and hardships, but it's our attitude that alters one’s perception of those challenges.  Lost in Transplantation seeks to connect with that place in each of us that wants to make a difference. My hope is to inspire others to take steps—no matter how small—toward balancing the inequality and unconscionable inhumanity that persists in the world. You never know exactly how far the results of your actions reach— and the life it alters the most just might be your own.

Me: I want to ask a set of questions that will establish my focus on organ donation in the past. So I’ll ask you (and I suppose ask my readers at the same time): Have you read Second Hand Heart, which is about organ donation, but not living donation?

Did you know that one of the UK editions included a real-life living kidney donor story that I also wrote about on my blog? And for those who have no access to that UK edition, I also wrote it up for Positive Impact Magazine. (But I can't seem to establish a direct link, so readers can use the link to their home page and search for Betty Ann and erin or organ donation). 

I’m also wondering if you’ve heard about Garet Hill and the National Kidney Registry. They form donation chains that start with an altruistic donor like yourself, and just keep going. (He was kind enough to be in contact with me, because the Pay It Forward connection is easy to see). They even made it into the New York Times.

Yes, I realize this is a long question. I also realize that no two living donors are alike. So can you tell us how you feel when you read these stories? How much are they like you, and in what ways are they different? How much change do you think we might see in the world if this kind of giving gets a foothold?

Eldonna: I have read Second Hand Heart. What interests me most is the cellular memory aspect of the story. I’ve communicated with many transplant recipients who voice a strong desire to reach out to the families of cadaveric donors. I think that in addition to gratitude, recipients feel a connection beyond what can be explained or expressed. My recipient claims to have lost an appetite for a few things that I don’t care for, like lamb and ice cream. I’m still waiting for my former kidney to switch the recipient’s political parties. ;-)

In answer to the second part of your question, my surgery was the very first at CPMC (California Pacific Medical Center) to occur as a result of a National Kidney Registry match! I was the initial domino in a series of surgeries beginning December 16, 2010. Fortunately transplant chains have since become the norm. I recently had the pleasure of meeting Dr. Alvin Roth, who won the 2012 Nobel Prize in Economic Sciences. The algorithm he co-developed increased NKR matches by up to 167% over the previous method.

Me: Of course the best way readers can get this question answered is to read your book. But it’s on everyone’s mind. So please give us a sneak peek at the answer to the big question: Why?

I get this a lot. Here’s how I explain it in the book:

Wealth might make you comfortable but it can’t save you from eventual death. Education might keep you from poverty but it can’t prevent disease. Geography might help protect your civil rights but it can’t protect you from unpredictable tragedy. Where we’re born and most of the opportunities we’re born into all come down to chance. Some disease is generated by bad habits like smoking or diet, some is environmental like chemical exposure or lack of available prenatal care, and some is just wonky DNA.

Perhaps one day science will figure out how to prevent or cure a lot of the diseases that are inherent in our society. I recently heard NASA has invented a 3-D printer that can print “food” for astronauts so it doesn’t take up valuable space. Maybe printing a human kidney isn’t that far off. But for now, beyond one’s belief in a higher power, all we have to sustain our hope is the grace of our fellow human beings to help us through our struggles.

A logical or left-brained person might look at the data, decide the evidence is overwhelming against self-sacrifice to aid others, and leave it to politics or science to determine another's fate. And here is where I invite Captain Obvious into the conversation to state that I am not left-brained. In fact I am so right brained that I sometimes wonder why my head doesn’t rest on my right shoulder. I’m a touchy-feely, tree-hugging, artsy-fartsy human being who truly believes we are all brothers and sisters in this world, and that by helping one person you help the collective. I believe each of our deeds, good or bad, creates a ripple. Birth might be about circumstance but life is about choices within the events that occur year to year, day to day, and most importantly, moment to moment.

The encounter with Lucy might or might not have been chance—I don’t know. Had I not moved to California with my son, had he not attended Cuesta College, had I not chosen one class over another, I never would have met her. What looks random in the immediate moment might seem like fate for those that believe in predestination. For me, it was merely an encounter with another human being who raised my consciousness about a particular form of suffering and I chose to act upon it.

No matter how hard I try to communicate the need for donors, people remain skeptical. No matter how deeply I underscore the extraordinary sense of purpose in helping another human being, I continually bump up against fear. What I’ve gradually come to understand is that it’s naïve to presume anyone’s motivations for donating or not, other than my own.

Me: I know you have a writing background that predates this book. Will you please tell my readers more about how you came to the written word and what else you have done?

Eldonna: I love language and have always taken great delight in the satisfaction of stringing together a tapestry of words that results in a good story or poem.  I used to facilitate journal-writing workshops and later turned the exercises into a couple of journaling workbooks. Loose Ends and Journaling from the Heart were published in 1999/2000 respectively.  I currently have other works-in-progress but I set the novels aside to work on this memoir. Living donation is a timely subject and I'm compelled to get it out there ahead of the fiction.

Me: I have no idea if anyone reading this is considering becoming a living donor. But I know it must be a big decision. And I know that, no matter how sure the donor may be, it’s often a hard subject to broach with family members. Any advice to someone considering this gigantic act of selfless giving?

The best thing a potential donor can do is to become informed. I regularly participate in several living donor and kidney patient forums where people like me offer support, encouragement and advice to potential donors. In terms of sharing plans with loved ones, you have to stay centered in your intention and not let well-meaning family members pull you off course. When challenged, I would usually say, “I hear your concerns and I appreciate you supporting me in my decision.

Me: Can you sum up for us how this act and this book changed your life? Yes, I do know it’s hard to compress it. But if you had to write a paragraph or two about it, what seems like the most important thing to say?

Eldonna: Having witnessed their pain and suffering up close, I am truly humbled by the strength and determination of all the people on dialysis who don’t know if they’ll get a kidney in time. The act itself didn’t change me so much as it reinforced my belief that when you help others it takes you out of yourself and your own struggles. But I definitely came away from the donation with a deeper sense of purpose and believing my life had more meaning. People talk about what an amazing gift I’ve given but I feel equally blessed by the experience.

As a donor, my goal was to inspire people. As a writer, I hoped to inspire readers in an entertaining way. Since writing the book I’ve been overwhelmed by enthusiastic support not only from the standpoint of living donation, but from readers who reported that they were moved to “be a better person” after reading Lost in Transplantation.  I can’t tell you how much it means knowing this story has had such a profound an effect on people. I’m unable to read the reviews without tearing up. It’s one thing to tell a story that touches people, but to be acknowledged for the art of the telling itself is icing on the proverbial cake.

Me: Please write your own question, and answer it.

Eldonna: You were the subject of a documentary titled “Perfect Strangers”. What was that experience like?  What’s next? (You meant two questions, right?)

While researching living donation I couldn’t find a single film on the topic so I contacted Jan Krawitz, the Director of the M.F.A. Documentary Filmmaking Program at Stanford. I told her someone needed to make a film about this so that the tragic need for donors would reach more people. We met in a coffee shop and talked for four hours. By the time the meeting ended she’d decided to make a film and I’d agreed to let her follow my journey. Her crew was amazing and I often forgot they were in the room. (Word of advice to anyone thinking of being in a film: Turn off your wireless mic before using the bathroom!)

Over the course of four years Jan and I became dear friends. I’ve attended several screenings of the film, which has played to enthusiastic audiences all across the country. I think she did a fantastic job of artfully capturing the experience of both donor and kidney patient. We’re hoping to show it locally again soon but I also host public and private screenings. The DVD will be available this summer. You can view the trailer at www.perfectstrangersmovie.com.

As a result of the film and the book, I’ve been invited to book clubs, film Q&A’s, and conferences to speak about my experience. I realize not everyone is a candidate for living donation (but hopefully some of you are!) so I tend to talk about altruism in the grander sense of how one can find happiness through kindness and compassion.

I love my work as an advocate for living donation, but I’m also making time to write. What’s next is a coming-of-age novel set in the sixties about a psychic little girl born into a fundamentalist Christian family who feels threatened by her paranormal gifts. The opening of This I Know recently won the Lillian Dean Award for fiction.  The novel is planned for publication in 2015.

Thank you so much, Catherine, for all that you do to promote kindness through your non-profit and to support other authors through this blog. In hopes of inspiring others to offer hope to desperate patients, I’m asking your readers to spread the word about Lost in Transplantation. You can find me on Facebook and on the web at my website, where I’ve just started a blog. I’m available to answer questions about how to donate as well as inquiries about speaking engagements.

The book is availableon Amazon as an eBook and in paperback, and at Barnes & Noble. It’s also available for Kobo and iTunes.