The Power of Two: A Twin Triumph Over Cystic Fibrosis

by Isabel Stenzel Byrnes, Anabel Stenzel

For most people, a diagnosis of cystic fibrosis means the certainty of a life ended too soon. But for twin girls with the disease, what began as a family’s stubborn determination grew into a miracle.             The tragedy of CF has been touchingly recounted in such books as Frank Deford’s The Life of a Child , but The Power of Two is the first book to portray the symbiotic relationship between twins who share this life-threatening disease through adulthood. Isabel Stenzel Byrnes and Anabel Stenzel tell of their lifelong struggle to pursue normal lives with cystic fibrosis while grappling with the realization that they will die young. Their story reflects the physical and emotional challenges of a particularly aggressive form of CF and tells how the twins’ bicultural heritage—Japanese and German—influenced the way they coped with these challenges.             Born in 1972, seventeen years before scientists discovered the genetic mutation that causes CF, Isabel and Anabel endured the daily regimen of chest percussion, frequent doctor visits, and lengthy hospitalizations. But they tell how, in the face of innumerable setbacks, their deep-seated dependence on each other allowed them to survive long enough to reap the benefits of the miraculous lung transplants that marked a crossroads in their “We have an old life—one of growing up with chronic illness—and a new life—one of opportunities and gifts we have never imagined before.” In this memoir, they pay tribute to the people who shaped their experience.             The Power of Two is an honest and gripping portrayal of day-to-day health care, the impact of chronic illness on marriage and family, and the importance of a support network to continuing survival. It conveys an important message to both popular and professional readers as it addresses key psychosocial issues in chronic illness throughout the sufferer’s lifespan and illuminates the human side of advances in biotechnology.             Even as gene therapy and stem cell research increase the chances for eradicating CF, this stirring account portrays its effects on one family that refused to give up. These two remarkable sisters have much to teach about the power of perseverance—and about the ultimate power of hope.

Genres: Memoir, Nonfiction, Disability

312 pages, Hardcover

First published October 1, 2007

Reviews

[Nancy · Rating 3 out of 5]

It's a good book overall but I was highly disappointed that the twins say that having a lung transplant "cured" their CF. This is NOT the case. As a person with CF with minimal lung problems (and LOTS of other problems) it shocked me to hear them say this (several times, even). Your body still hold the gene for CF even if your lungs genetically don't have CF anymore. Having CF is not just about having lung problems.

[Katrina Kuhn · Rating 4 out of 5]

Following Isabel’s passing earlier this year, it felt like it was finally time to read this powerful memoir.

As an employee of the Foundation, this was such an insightful read. Isabel and Anabel have such a unique experience to share, as twins and as Asian women living with the disease.

Life with CF in the 1970s was not optimistic — there were few treatments, and little hope. Reading about how Isa and Ana survived during these early years: pounding each other backs, and taking care of each other when they had hemoptysis, was inspiring.

I also really enjoyed reading about their experiences at CF camp, and the relationships they formed with other individuals with CF. Now knowing this perspective, it helps me better understand the emotions community members felt when the IPC regulations rolled out a decade or so ago.

I’ve heard it — and seen it — so often before, but The Power of Two truly illustrates just how quickly CF can take a turn for the worse. It’s not fair.

As with many things CF related, this is not for the squeamish.

[Stephanie · Rating 5 out of 5]

Disclaimer: I went to college with Isa and Ana, although I don't know them very well. I feel that I can provide an unbiased review, though -- if I hadn't absolutely loved the book, I probably would not have reviewed it at all.

I purchased the book at a screening of a new documentary film about Ana and Isa (The Power of Two: Twin sisters, two cultures, two new chances at life). As soon as I started reading the book I couldn't put it down. I am absolutely amazed at the incredible journey Isa and Ana have been on. They are living testimony that what doesn't kill you makes you stronger as they have developed so much courage, tenacity, wisdom, compassion and many other character qualities through their life struggles.

However, Isa and Ana never present themselves as saintly. There's one passage in the book in which a nurse tries to get the girls (when they were children) to help another patient in the bathroom, and they unequivocally refuse. There are many other points at which Isa and Ana resist the temptation to make themselves sound like they are beyond human as a result of their CF. Instead, they portray the full spectrum of their humanity in the book. They allow us a surprisingly uncensored view of their lives, and in so doing help us see that people with serious diseases or disabilities are just like everyone else (except for their disease/disability).

Overall I found this book incredibly inspirational. Isa and Ana have to work so hard just to get out of bed in the morning, and yet they have accomplished so much. They helped me realized what an incredible gift life and good health are, and how we should all make the most out of each day we have, whatever our struggles.

[Chrysi · Rating 5 out of 5]

This book is about more than Cystic Fibrosis, (CF), it's about overcoming impossible odds. About working tremendously hard to change what you can when you can't change your circumstances. It's about a love for life that is deeper than many of us will ever grasp, finding joy in every moment and the strength of family and siblings.

This is a must read for any parent of a CF child. (but I would wait until at lesat a year or two after diagnosis so it won't overwhelm) Grandparents who want to be involved and learn more about life with CF should read this too.
My child with CF will be offered it once she's mature enough to read long books about hard topics.

This book does speak openly about the topics of death, sex and sickness. Some fowl language is used.

[Laura · Rating 4 out of 5]

I enjoyed reading about these girls' experience with CF and how it affected their lives. Every CF experience I read/hear about is so unique, but yet there are so many things similar to me. It's amazing to read about the incredible strength of all CF patients and their families.

[Gary · Rating 4 out of 5]

So different from other books that have a 'public' face to their illness - the Stenzel sisters were very candid about their fears and embarassments. The contrasts were fascinating - as similar as they were.

[Amy Baugh · Rating 4 out of 5]

An amazing story of two beautiful people dealing with an extremely high maintenance disease! Inspiring!

[Ginny · Rating 5 out of 5]

I found this very helpful and inspiring. Hard to get through at times, but two very couragous people, just like another one I love.

[Ruth · Rating 2 out of 5]

I'm glad I read this as it provided me amazing insight on how my friend with CF lives. I don't think it is particularly well written, but I forced myself to overlook that.

[Andrea · Rating 3 out of 5]

This book shed some light on the struggles of living with a chronic illness. I got to meet Ana and Isa and discuss their book with them.

[Theresa]

Competing with Isa and Ana in the 2008 US Transplant Games is probably one of my proudest moments.

[Mary · Rating 5 out of 5]

Kindra, this is a must read for you, I think. About how CF affects two young women, twins, about your age. Gave me great insight into some of Zachary's problems. Plus it's a great read.

[Quien Soy]

The Power of Two

[Colleen Rue · Rating 5 out of 5]

A BEAUTIFUL BOOK.

[Jonah · Rating 4 out of 5]

This book is about twins in their forties who were born with cystic fibrosis. They co-wrote this book. I like the story, and I like the way they told it. And I liked that it had Bob Flanagan in it.

[Carla · Rating 3 out of 5]

Shocking, painful, hopeful, humbling.