By MIKEY HIRANO CULROSS
RAFU STAFF WRITER
On Dec. 31, the Rosemont Pavilion, adjacent to the Rose Bowl in Pasadena, was abuzz with excitement and activity. Crews and volunteers were racing to meet the judging deadline for the floats they had been laboring over around the clock, on the eve of the 2010 Tournament of Roses Parade.
As anyone who has ever been involved with float construction can attest, this is an electric time. The parade is a few hours away, and the promise of the coming new year only serves to fuel the excitement.
For Anabel and Isabel Stenzel, that sense of promise is a gift every day of their lives. The 37-year-old identical twins, who were raised in Pacific Palisades and now call Redwood City home, were helping to put the finishing touches on the Donate Life float. They were doing so to honor those who gave of themselves-literally and physically-so that others may live.
“I’m here because I was privileged to have a lung transplant six years ago,” said Isabel. “I had lung disease all of my life, and predictably, so did my twin.”
Only a few days after birth, the Stenzel girls were diagnosed with cystic fibrosis, a genetic disorder that ultimately leads to catastrophic failure of the lungs. Many with CF die in their 20s or 30s unless a lung transplant is performed. It is also exceedingly rare in Asians.
“I was coughing and sick all my life and reached the end of my lung capability, really the end of my life when I was only 32,” Isabel explained. “And then magically, I received this gift. It’s been almost six years and I am alive and well and so grateful.”
The float the twins were decorating was titled “New Life Rises,” Donate Life’s seventh Rose Parade entry. It depicted the mythical phoenix, rising from the ashes above a replica section of the National Donor Memorial, located in Richmond, Va. Several transplant recipients, including Glenn Matsuki, rode on the float during this year’s parade, to pay tribute to donor families across America for their gift of life. Isabel had the honor of being aboard the Donate Life float in 2008.
Isabel said she and her sister are acutely concerned for Japanese and Japanese Americans who need transplants, because of the shortage of available organs in those communities. A social worker by training, Isabel is passionate about helping people live in any way and organ donation happened to be something that affected her personally.
“We’re very eager to spread the message about the goodness, the benefit of transplant,” she said. “It’s not a scary thing, it’s not about death. It’s about life after death and about compassion and helping others across all cultures.”
Their desire to share their own story and to bring focus to the benefits of organ and tissue donation led the twins to write a book, “The Power of Two: A Twin Triumph Over Cystic Fibrosis,” which was published in 2007. As children of a mother from Japan, they soon became aware of the obstacles and taboos that faced families in need of transplants in that country.
“There are beliefs about not touching a body after a person dies, or not cutting the body,” Isabel explained. “We wanted to share stories about how our donor families felt about donation, how they see it as the only good thing that came out of their loved ones’ tragic deaths.”
Anabel, who is a genetic counselor at Stanford University Hospital in Palo Alto, said that state funding in Japan for organ donation is poor, if available at all, and that the outreach support is woefully lacking. It wasn’t until last July that a new law went into effect in Japan that allowed government involvement in donations and transplants for children under the age of 15. Before then, families were forced to raise funds on their own, often into the millions of dollars, to come to America and be placed on waiting lists here. Because of Japan’s official stance on organ donation, many other countries have closed their wait lists to Japan nationals.
Further confusing those in need of organs in Japan are the varying definitions of brain death. The law allows a diagnosis of brain death only for those who have previously registered themselves as organ donors, otherwise there is no brain death.
Last fall, following the translation and publication of their book in Japan, the Stenzels embarked on a speaking tour there, visiting nine cities, from Sendai to Okinawa. They gave some 20 speeches-in Japanese-to medical students, government representatives and members of transplant communities and the general public.
“Fortunately, we feel that we were received very well,” Anabel said. “There is a small transplant community there who welcomed us with open arms and helped arrange a speaking tour and many opportnities to speak. They were very curious to hear what we had to say. The audiences were very emotional because we talked about things like living with chronic illness, facing death, gratitude for our donor families, and about meeting our donor families, which is very rare in Japan.”
In fact, meeting donor families is essentially illegal in Japan.
“We talked a lot about what our donor families gained by meeting us or at least receiving our thank you letters and how they could feel a sense of pride for their loved ones who have helped others, and how they could achieve some small amount of comfort that despite the death of their loved ones, we are living on and their lives and their stories live on,” she explained.
Isabel added, “We’re really trying to encourage many people in Japan to reconsider their belief systems, to think about how they want to be remembered and what good can come of a tragic death. How can they reconcile some of their Buddhist or Shinto beliefs about the body and think about giving life after death. “It’s not about taking something from someone at the time of death, it’s about giving an opportunity for that person and that donor family to find something to help others.”
The twins were accompanied on their month-long tour by a film crew that documented the journey. “The Power Of Two,” a cross-cultural comparison between the Japanese and U.S. transplant systems and the beliefs that surround them, includes interviews with surgeons, families, advocates for transplant, and politicians. It is slated for release in January of 2011.
Anabel and Isabel carry their torch with a great deal of pride, with a sense that each day is a bonus for them and they have a mission to help pass on their own good fortune.
“Every day we grow old and every wrinkle is a blessing. The older alternative to getting older is to die young,” Anabel said.
Isabel received her donation as a direct result of the infrastructure that has been created in the United States, which has wisely involved departments of motor vehicles across the nation. Fresno teenager Xavier Cervantes had obtained his driver’s license a mere two months before being killed in an accident in 2002. He first learned of organ donation at the DMV and told his mother that he wanted to be an organ donor, should anything ever happen to him.
“We are speaking on behalf of five people, because there are three organ donors between us,” Isabel said. “We want to share that, because we have been given an extra six years, or ten years, because of the gift of these families.”
Anabel’s first transplant took place in 2000, when she received the lungs of James Dorn.
“I had the best six years I’ve ever lived in my life. I was healthy and active and able to play sports and travel and do things I was never able to do with cystic fibrosis,” she said. “Unfortunately, I went into rejection in 2006 and was very fortunate to get another transplant at Stanford Hospital in July 2007.
Anabel doesn’t know anything about her second donor, other than he was male. She wrote a thank you letter shortly after receiving the new lungs, but never received a response.
Isabel said it was by chance that their mother, Hatsuko, moved to America, had twins, and by chance, they were lucky enough to receive transplants.
“If we had lived in Japan, we probably would have died because the are few, if any donors. That’s not fair, that Japanese Americans can receive transplants and Japanese in Japan cannot,” Isabel chided. “We’re hoping that the Japanese and Japanese American community will think seriously about transplantation and organ donation, and talk to their family members. Nobody is immune from possibly someday needing a transplant or knowing someone who needs a transplant. Likewise, you never know who may find themselves in the midst of tragedy, with brain death.”
At the float decorating, Isabel and Anabel were wearing their thankfulness on their chests, along with lapel buttons bearing photos of their donors. Truly, they express their gratitude with each breath. As a way to celebrate her second chance at life, Isabel took up the bagpipes two years after her transplant. Last week, she piped “Auld Lang Syne” at a New Year’s Eve party.
“I want to celebrate the lung power that I now have. It’s wonderful,” she boasted. “The sound is so strong and powerful, and that’s my donor’s lungs making that sound. I just need to tell the world that it’s him, still here with me.”
Information about the Stenzel twins and the documentary of their Japan tour can be found at www.thepoweroftwomovie.com.