The Power of Two

Update 09/22/2013: 
"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:

Isabel Stenzel Byrnes & Anabel Stenzel

We've heard Anabel's story about the process of publishing and now Isabel elaborates on the journey that followed.

Click here for information about The Power of Two premiere movie showing in Kansas City

My name is Isabel Stenzel Byrnes, and my twin Ana and I published, The Power of Two: A Twin Triumph over Cystic Fibrosis in 2007. Ana already elaborated on our writing journey, but I’d like to share our adventures following the release of our book. Only nine months after the publication of the UMP memoir, my Japanese mother’s long-time friend submitted a query letter to several Japanese publishers. Iwanami Shoten, the second largest publisher in Japan, agreed to translate The Power of Two. After painstakingly editing down the manuscript to one-third of its’ length, Mirakuru Tzuinzu (Miracle Twins) was translated and published in September, 2009. Just a few months earlier, after much debate, Parliament passed Japan’s groundbreaking organ donation law, thus making organ transplantation a hot topic for public discussion. Organ donation remains highly controversial in Japan, a country that generally does not accept brain death and has numerous religious superstitions about death—and organ donation. Our book would be a welcome personal story to highlight the benefits of organ donation to recipients, while also portraying the healing from grief that organ donation can offer to donor families. A small group of Japanese organ donation and cystic fibrosis advocates embraced our book and organized a ten- city book tour. After speaking limited Japanese in the home growing up, Ana and I crammed and prepared professional, medically-oriented Japanese lectures about our lives, perspectives on illness and death and the ethics of organ donation. Our mission: to be outspoken Japanese-American advocates for this life-saving cause.

A few months before our anticipated Japan tour, my husband, Andrew Byrnes, met a filmmaker who focused on social causes. Marc Smolowitz, an Academy-Award nominated filmmaker, read our book immediately and felt compelled to create a film. Since Ana and I had retained the rights to film from UMP, our plunge into cinematic storytelling was rather straightforward. My husband-turned-producer initiated fundraising efforts, and before long, a film crew of five joined us for a 26-day tour of Japan in October, 2009. We traveled from tropical Okinawa to cool northern Sendai; we lectured all over Tokyo and managed to visit historic temples in Kyoto, in between lectures at medical schools and public consortiums. Our relatives joined several events and we appreciated the chance for such a special reunion. The book received positive reviews and sold well at our events, although we couldn’t read it ourselves! The Japanese were visibly fascinated by our stories: in Japan, illness carries a stigma and most patients are not public about their experiences.

After capturing nearly two hundred hours of interviews and scenes of the Japan Transplant Games and other cystic fibrosis and organ donation awareness activities, we returned home. Marc and Andrew decided to contrast Japan’s organ donation situation with film shoots at the U.S. Transplant Games and our advocacy work in Washington, D.C. After tremendous efforts, we raised enough money to complete the 94-minute film, also called “The Power Of Two.” While the film is inspired by our UMP memoir, it is so much more than our story. The film is a story about hope, survival and love. It also highlights the miracle of breath: something that we can all cherish. By featuring people who are waiting for- and who have received- the gift of lung transplantation, we are sharing the experience of a small segment of society who struggles to breathe, and who find that struggle alleviated by the generosity of organ donors. The complex cultural issues highlighted make this film globally relevant.

Since the film’s release, “The Power Of Two” film has been accepted into 20 film festivals and has received seven awards. In August, 2011, the film premiered at the Oscar-qualifying DocuWeeks theatrical showcase in Los Angeles and New York City, and in October, the film premiered in Asia at the Tokyo International Film Festival. We will secure a film distributor in the U.S. and Japan shortly. In this competitive cinematic landscape, we are very satisfied with the film’s success. We have also hosted numerous community screenings nationwide with non-profits and educational institutions to use the film to educate the public about cystic fibrosis and organ donation.

What a whirlwind! We never, ever imagined that our life experiences with CF would unfold into such extraordinary benefits like a UMP memoir, a Japanese memoir, and now a documentary film! And, these opportunities are just the icing on our cake of life... just to be alive and breathing well is a gift enough, and now we have one blessed opportunity unfolding after another. We are especially grateful to the entire UMP staff, which has supported us tremendously through our unconventional publishing adventure.

Thank you for reading our blogs. Right now, please stop and take a slow, deep breath and feel your life force enter all the way to the depths of your lungs. If you’d like to see if “The Power Of Two” film will be screening in your area, please visit our website at  www.thepoweroftwomovie.com. Thank you for your interest. May you be blessed with deep breaths always,

Isabel Stenzel Byrnes

To sign up to be an organ donor, visit www.donatelife.net.

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.

-ANA