Tuesday, July 25, 2017

Repost of my review of The Power of Two: A Twin Triumph over Cystic Fibrosis

Here's another reposted book review.  This time it's about twin sisters who grew up with cystic fibrosis at a time when most kids with it didn't make it to adulthood.  I actually really liked this book and would love to read it again.  Unfortunately, it's in storage.

Pros: Beautifully written story of twins who conquered cystic fibrosis.
Cons: Swearing and sexual situations may offend some readers (but not me).
Like a lot of Americans, I've been keeping up with America's Got Talent this summer. I had previously gotten hooked on NBC's talent contest three years ago, but had missed it over the two years my husband Bill and I spent in Germany. I was eager to see what kinds of people would be showing off their talents, or lack thereof. This year, Christina and Ali, two singing sisters from Idaho Falls, Idaho, peformed for America and shared that they were two of four siblings who suffer from the genetic disease, cystic fibrosis (CF). Cystic fibrosis is a devastating illness that affects all facets of life, from breathing to digesting food to eliminating waste. Christina and Ali had been told they would never be able to sing, since CF damages the lungs of those who suffer from it. But sing they did, and while I have heard better singers, the fact that they were able to perform as well as they did was astonishing to me.

I mentioned Christina and Ali on a messageboard I frequent, also mentioning that I had also read Frank Deford's incredibly touching book Alex: The Life of a Child. Deford's daughter, Alexandra, had died of CF in 1980 at age 8. She was almost a year older than me and I found her story very moving. One of the posters on the messageboard then recommended that I read The Power of Two: A Twin Triumph over Cystic Fibrosis (2007). Written by twins Isabel Stenzel Byrnes and Anabel Stenzel, the book offered a more recent account of living with CF. Now that I have finished the book, I can say that I was richly rewarded by the experience.

Isa and Ana

Like Alexandra Deford and me, Isabel (Isa) and Anabel (Ana) Stenzel were children of the 1970s. The twins were born in January 1972 in Hollywood, California to a Japanese mother and a German father and an older brother named Ryuta. It's hard to imagine it, but those were the days before ultrasounds and genetic tests. Hatsuko and Reiner Stenzel didn't even know they were having twins. Reiner Stenzel was a world-reknowned physicist and was out of town when his wife went into labor. She gave birth alone.

Days later, Ana had not yet passed her first meconium and required surgery to unblock her intestines. A doctor realized that meconium ileus was a sign of cystic fibrosis. Although cystic fibrosis is extremely rare in Asians, the doctor ordered a "sweat test" for both girls. The sweat test measured the amount of sodium chloride (salt) in the girls' sweat. Both tests came back with abnormally high levels of salt, which confirmed that the twins had cystic fibrosis. The doctor informed Reiner and Hatsuko Stenzel that their daughters had CF, ultimately a fatal disease that would probably claim their lives during early childhood.

Thirty-eight years later, both twins are still living and working in Palo Alto, California.  They are both graduates of Stanford University and the University of California, Berkeley.  One twin is married. Both have satisfying careers, one as a genetic counselor and the other as a social worker. Both have traveled extensively and both have had lung transplants that later allowed them to compete in the Transplant Games. Together, they beat the long odds that were stacked against them at birth.

My thoughts

I think this is an amazing book on many different levels. First off, The Power of Two appeals to me because I'm about six months younger than the twins are. Isa and Ana take turns writing chapters and they start at the very beginning of their lives. Although I don't have CF, I am a child of the 70s and 80s, so I understood a lot of the cultural references they made and felt like I could relate to them as peers.

I was fascinated by the story of how their parents, two immigrants who came from very different places, met in America and became a couple. Both Hatsuko and Reiner Stenzel were very much affected by the horrors of World War II. They left their homelands for something better in the United States and ended up getting married. The odds that they would both carry the defective gene for cystic fibrosis were very slim. CF is almost unheard of in Asians. When the twins' mother, Hatsuko, called her own mother in Tokyo to enquire about her heritage, she was assured that the defective gene must have come from her father, who had died in Siberia as a prisoner. Somewhere along the line, Hatsuko's father must have had a Caucasian relative.

Twins are fascinating to read about anyway, since they often have their own languages and ability to relate to each other. Isa and Ana were very close to each other for another reason; they relied on each other for the vital percussive therapy that allowed them to keep their lungs clear of the deadly mucous that collects in the lungs of CF patients.

And, as it turns out, Isabel Stenzel and I have something in common. We both earned dual master's degrees in social work and public health. And while I am not primarily of German descent, I did just spend two years living in the twins' father's homeland.

Isabel and Anabel are excellent writers. They don't hold back as they describe what it's like to have cystic fibrosis. They very honestly convey the frustration they felt at always being sick, yet they also strived to not allow their illness to hold them back from chasing their dreams. I found myself marveling at all they were able to do as youngsters. I also admired how much they value their lives, even as they admitted to how much suffering they endured due to their disease.

I will warn that those with delicate sensibilities regarding language may not like that the twins liberally use profanity. Personally, I thought the profanity was certainly justified, given their situation. It also gave their voices a touch of realism and made them seem very human. But if swearing offends you, be advised that they don't hold back at all. They also include some frank discussion about sex. Again, I liked this aspect of the book, but realize that some readers might not appreciate it.

The Power of Two includes a photo section. One of the most riveting photos in this book is that of Isabel post lung transplant, saying goodbye to the scarred, diseased, terribly damaged lungs that had miraculously sustained her for over thirty years. These women had spent their lives watching their friends die of cystic fibrosis. They knew that having a transplant was also no guarantee that things would get better. People who have transplants must suppress their immune systems to prevent rejection of the new organ. They knew that they were trading one health problem for another and, in fact, had seen several friends with CF die after their lung transplants. And yet, their healthy new lungs did give them new lives, and allowed them the opportunity to educate others about this disease and give them hope.

Overall

I definitely recommend The Power of Two because it's a fascinating story on so many levels. Certainly, it's good reading for anyone whose life has been touched by cystic fibrosis. It's also a good book for those who are interested in a story of how World War II impacted lives. And people who are twins may also like this book because of the insight these women give into their experiences as twins with CF.

This is a powerful, inspirational book. It gets five big stars from me.

5 comments:

  1. Asians are actually more likely to be carriers or to have the phenotype of CF than was previously thought. CF often manifests differently in Asians, leading to missed diagnoses. In general, the lung function of Asians is inferior to that of non-Asians with or without CF. On the other hand, Asians typically have superior pancreatic function (pancreatic insufficiency leads to many of the digetive issues of CF) as compared to non-Asians. Asians also have less salt in their sweat, making the diagnosis more difficult. The genetic mutations leading to CF are different in white non-hispanic Caucasians than in the rest of the CF population.

    I'm not put off by profanity. I really want to read the book.

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    1. I was about to edit. This review was written in 2010 and Anabel Stenzel died in the fall of 2013 of small bowel cancer. She had survived two lung transplants and had married.

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    2. It's sad that for all intents and purposes she beat CF, only to die of something else.

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    3. Evidently, small bowel cancer is somewhat common in CF patients. Her sister is still living.

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    4. In general CF patients' digestive systems are thoroughly screwed up, and almost any chronic condition of either bowel gives a person a greater predisposition to concers of the afflicted area. Still, it would have been nice if being half-Asian had worked in her favor in that regard, as because Asians don't deal with as much pancreatic insufficiency, the rest of their digestive system often functions with fewer majot malfunctions than do their non-Asian cF counterparts. Because she got the CF from both Asian and non-asian sources, she may have inherited the worst from each side.

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