Monday, September 30, 2013

The Power of Two

Update 9/22/2013: 
"With profound sadness as well as tremendous gratitude for her two organ donors and donor families, the love of so many family, friends and fans, and the brightness she brought to all of our lives, we regret to share that Ana Stenzel passed away... following a hard fought battle with intestinal cancer. With her transplanted lungs, she was breathing easy until the end. We are so pleased that Ana's legacy will live on in "The Power Of Two" and in all of our hearts." --The Power of Two

March 2012:
The Power of Two
Isabel Stenzel Byrnes & Anabel Stenzel
This book is now a film featuring the lives of Ana and Isabel, two half-Japanese identical twins that battle the genetic lung disease cystic fibrosis. Despite transplants and other medical difficulties these women emerge not only as authors but go on to help the world as global advocates for organ donations. 

The inspiring  film The Power of Two will be shown from 6:00 to 8:00 p.m. at The Truman Forum in the Kansas City Public Library, Plaza Branch. 

4801 Main Street Kansas City, MO 64112

Doors open at 5:30 and RSVP request can be made online
Its a free public event so bring the family along!

My name is Anabel Stenzel and I’m a co-author of a University of Missouri Press (UMP) book, The Power of Two: A Twin Triumph Over Cystic Fibrosis. I wrote this memoir together with my sister, Isabel (or Isa). We are half-Japanese, half- German identical twins from California. In this two-part blog, Isa and I would like to share our experiences as authors, and all the adventures we’ve had since the publication of our book in 2007.

Back in 1972, Isa and I were born with cystic fibrosis (CF), a genetic lung disease that affects about 30,000 Americans. CF promises a very difficult lifestyle, but Isa and I were blessed to share the challenge. Together, we endured daily respiratory treatments and frequent hospital stays to treat chronic lung infections. By the time we were 18 years old, each of us had been in the hospital about 36 weeks of our lives, cumulatively. During these long hospital stays, Isa and I started a joint endeavor of writing a journal about our hospital experiences. That simple time exploring with writing helped fuel our desire to eventually publish a real memoir.

Unfortunately, with each lung infection, our lungs became progressively damaged. My lung disease worsened more rapidly than Isa’s. Despite tremendous fears, when I was 24, I decided to go on a waiting list for a double lung transplant. On June 14, 2000, a compassionate family who faced a tragedy said yes to organ donation, and a donor saved my life. Within 12 months, I was swimming, hiking, jogging, volunteering and working almost full-time. It was truly human resurrection--- thanks to an organ donor and many blood donors.

Two years after my surgery, Isa’s health declined precipitously. When she turned 30, she was forced to “retire” from social work and go on disability. Since we always thrived with some therapeutic distraction from illness, Isa decided to embark on writing our twin memoir.  She signed up for local writing workshops and read memoirs voraciously. Isa and I assigned each other various topics and stages of our lives that we wanted to write about. We’d proofread what we each had written, and of course, as sisters do, we bickered about divergent memories or perspectives, but ultimately respected our own voices.

The act of writing awakened something deep inside of me. A lifetime of physical limitations had made me feel self-conscious, insecure and inferior to my healthy peers. By writing down stories of my past, I found value in my unique perspective living as a twin and as someone with illness. I witnessed how my drafts started full of anger and gradually involved into a place of deeper introspection, maturity and even humor. The honest reflection and review of my life culminated in a sense of acceptance and understanding. I wrote about friends who had died, and through describing their laughs, mannerisms, and shared adventures; I could bring them back to life, and come to a place of closure in my grief.

While writing has always been my passion, professionally, I am a genetic counselor, while Isa is a social worker and health educator. We wanted our memoir to be a teaching tool for families struggling with illness as well as health care providers. We hoped that members of the general public could also value the spiritual lessons and existential messages in our story.

Finding a large corporate publisher who viewed the story as “marketable” proved to be a difficult task, and we soon turned to academic presses. University of Missouri Press had a history of publishing memoirs, so we submitted a query letter. Within weeks, Beverly Jarrett, the Editor-In-Chief at the time, requested that we mail the complete manuscript. Not long after, in October 2006, Isa and I met with Gary Kass, Acquisitions Editor, who happened to be traveling to our area in Northern California for a book meeting. We let out huge sighs of relief when UMP offered to publish our book. As Stanford graduates, Isa and I value academic institutions, and appreciate academic presses for their respect of the educational value of a book’s content. We were thrilled. The anticipation of a final product overcame the next months of meticulous editing and manuscript preparation. Sara Davis offered extraordinary support with the details leading to our final product.

Within months, for unknown reasons, however, my body started to reject my lungs, and soon I was in a wheelchair with lung failure. I felt terrified at the idea of Isa going on book tours without me. I was determined to see my book come out, exemplified once by my comment, “I’m too busy to die!” The book focused my energy on surviving. Thankfully, I was blessed with another second double lung transplant in July 2007. Being saved again, “the power of two” was once more robust.
When the The Power of Two was released in late 2007, Isa and I exploded into manic activity. Isa started a website, blog and got a business license and sales permit. Thanks to Marketing Manager, Beth Chandler, our book was featured in People magazine (which apparently led to exhilarant screaming by Beth Chandler in the office) and several other media outlets. We set up our own book signings at bookstores across the United States. In March 2008, we drove to the Pacific Northwest, and in April 2008, we started a 40-day tour across the United States that included book signings and lectures with cystic fibrosis and organ donation groups. On our drive from Albuquerque to Chicago, we made sure to drive through Columbia to stop by and greet our friends at the Press. I felt so blessed to have University of Missouri’s Press recognize the story of two Californian women!

Soon, the solicitations for speaking engagements from hospitals, universities and conferences started, and still continue today, five years later. Thanks to generous pharmaceutical grants, and UMP’s cooperation (especially Debbie Guilford and Lyn Smith), we have been able to provide free books at specific events to families living with cystic fibrosis. Countless families have praised and admired our book in ways that we never imagined. Our illness community was starved for hopeful stories and positive role models. Parents, siblings and patients could relate to our family’s struggles, thus feeling less alone. Best of all, Isa and I were healthy, traveling the world together and enjoying emotional highs we thought a life with CF could never offer.
Thank you for reading my long blog post. Isa will continue this blog with her version of what happened after the publication of The Power of Two.

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