Our American Dream: A Double Gift of BreathPosted May 22nd, 2013 by Isabel Yuriko Stenzel Byrnes
MomsRising offers a special opportunity to write about what prosperity and good fortune means for my family. My sister, Anabel Mariko (“Ana”) and I, Isabel Yuriko (“Isa”), were born in California to a German father and Japanese mother back in 1972. My mother always said, “Don’t forget where you come from,” so we grew up speaking Japanese in the home, eating Japanese food, and traveling to Japan regularly. With our Asian identity deeply engrained in who we are, we can appreciate how our fate has been blessed with good fortune and prosperity.
Our stories are not typical of many other Asian American women. We are only mothers of four-legged children, and our American Dream has been fulfilled simply by being able to say that we are still alive. You see, my twin and I were born with cystic fibrosis (CF), a genetic lung disease that is extremely rare in Asians. Doctors told my parents that we’d be lucky to reach ten years of age. As you can imagine, my mother was devastated about the possibility of losing her daughters young. This illness forced her to grow up; she emerged from a passive, disenfranchised Japanese woman to an assertive, educated respiratory therapist and medical social worker. She is the heroine of our story.
With Asian-style discipline, we persevered through time-consuming, daily medical treatments and lengthy hospital stays in order to defy these odds. Our illness shaped our characters in profound ways. First, like most Japanese, I was raised to feel ashamed and embarrassed by my illness. My mother put double-paned windows just in our bedroom so the neighbors wouldn’t hear us cough. We hated to feel different from our healthy peers and hated being misunderstood. We coughed often, but it wasn’t our fault. The illness made us feel inferior, until we met other kids with cystic fibrosis and learned that we were not alone. Over time, our bodies slowly weakened, but we focused on our strengths. We could study. Our focus on academics led us to Stanford University, and then to the University of California, Berkeley, where Ana studied genetic counseling and I studied social work.
Our two-some eventually became a quad. I married my college sweetheart, Andrew Byrnes, in 1998, and Ana married Trent Wallace in 2010. These men have proved that love defies all else; the desire to have children, to grow older together, to earn double incomes didn’t matter to these remarkable men. Our partners held us up during declining health, lung failure and watched our rebirth through double-lung transplants. Since Ana’s lung transplant in 2000, and mine on February 6, 2004, we can now breathe deeply for the first time in our lives. We became competitive athletes and have returned to work- Ana is a genetic counselor and I am a hospice social worker. With such an extraordinary resurrection, we had to tell people about our miracle. The Japanese shyness about our illness took a 180 degree turn, and we published a memoir (The Power of Two: A Twin Triumph over Cystic Fibrosis, University of Missouri Press, 2007), volunteer for CF and organ donation awareness, and lecture publicly around the country and in Japan.
Several year after our transplants, after writing thank you letters and sending them to the California Transplant Donor Network, Ana and I both receive responses from our donor families. My sister’s lungs came from a 29 year old man in Oregon who died from a brain aneurysm. I learned that my lungs came from an 18-year-old Mexican-American man who became brain-dead after a car accident. He told his mother once that he wanted to donate his organs to help people. These two families continue to grieve for their loved ones. Death is final and tragic. Yet, organ donation is the only positive aspect of their deaths. We breathe in gratitude each day because of their gifts of life. Organ donors represent the highest form of humanity.
As half-Asian women, we feel it’s especially important to show the Asian community that organ donation is a good thing. Our book was translated into Japanese (Mirakuru Tzuinzu (ミラクルツインズ, Iwanami, 2009). We visited Japan in October 2009, and brought a documentary film crew with us. During our book tour, the film crew captured compelling stories about Japan’s struggle with organ donation. Like many other Asian cultures, Japanese culture has many superstitions around death, such as the deceased body should not be touched after death, that the soul remains in the body, or that the body belongs to the ancestors. In Asian culture, talking about death is bad luck, and believed to make it happen. There has been limited education about brain death and the organ donation process to get rid of myths that permeate society. Many Japanese transplant recipients are too embarrassed to share their stories, and yet, personal stories are the engines behind social change. The Japanese seem to focus on the donor – is he really dead? Will his spirit be troubled? Yet, there are thousands of people dying who could otherwise be saved with an organ transplant. To me, when a person dies, it is a shame to simply cremate the corpse, or put it into the ground, while there’s a chance to help someone else. So a focus on the potential recipients is critical— and on the mothers, like mine, whose child will die without an organ donor.
Ana and I target our advocacy efforts on Asian-American and minority communities, where organ donation consent rates are low. Here in the U.S., there are more minorities waiting for transplants than there are minority organ donors. There are so many stereotypes about Asian Americans: that they care more about S.T.& E: shopping, travel and entertainment. Well, I believe we have deeper values. We are also smart enough to get the facts. Health matters to everyone, regardless of culture, and it is just a matter of proper access to education across all levels of acculturation. I also believe that Asian Americans are the most generous people around. So there is tremendous potential to properly educate Asian Americans about this life-saving health issue called organ donation. Thankfully, our documentary film, “The Power Of Two,” will premier on KCET and LinkTV starting this May, in time for Asian Pacific American Heritage Month. Please check out http://thepoweroftwo.tv and be inspired to give the gift of life.
While many Asian Americans in the United States have illness stories, it’s an honor to share our unique story: how our fate cursed us with genetic illness and blessed us with twinship; how double trouble became double fortune, thanks to our organ donors.
Thanks for reading our blog. I wish you many deep, healthy breaths in your life.
With love and gratitude,
Isa Yuriko (and Ana Mariko too!)
For information on organ donation, see: www.donatelifeamerica.net
For Information about cystic fibrosis, see: www.cfri.org