Documentary illustrates the lives of Redwood City twins who fought through deadly disease, then worked to inspire others.
But Redwood City twin sisters did not let their battle with cystic fibrosis overwhelm their will to survive, nor did they allow the disease to stop them from trying to save others.
A new movie by acclaimed documentarian Marc Smolowitz called "The Power of Two" details the way Ana Stenzel and Isa Byrnes fought through the fog of stigma surrounding their battle with a life threatening illness, then continued the work in an effort to ensure others would not face the same struggles they did.
"We all have our chance to share our story, and by speaking out, you can be your own best advocate," Byrnes said. "By speaking out, even within our small communities, we are able to impact change."
The twins both received the healthy sets of lungs they need to survive through an organ donation program. And as their health improved, they took it upon themselves to encourage other people in other countries to reconsider the preconceived notions they may have had regarding life threatening illness and organ donation.
Stenzel and Byrnes are half Japanese. And though they were born and raised in California, the twins still have strong ties to the culture of their ancestors. So when they decided they wanted to promote awareness regarding the importance of organ donation, their dedication knew no bounds.
According to the twins, the culture in Japan has not traditionally leant itself to open dialogue regarding the difficulties of those struggling with life threatening illness. And as Stenzel and Byrnes learned though their experience, it was the ability to talk freely about their disease that helped them survive.
So in an effort to help those who may have felt isolated by the predominant culture norms surrounding them, Stenzel and Byrnes toured Japan to host seminars talking about their experience living with cystic fibrosis.
"In Japan people are so ashamed of being sick and different. We are saying it is alright," said Byrnes.
Smolowitz said the movie chronicles the sisters' transition from being victims to advocates. The pinnacle of the journey may have been when the two sisters spoke on a tour across Japan in 2009, openly addressing their lives before and after being diagnosed.
"It's really a movement that celebrates the potential for powerful story telling to change people's perspective on life and death," said Smolowitz.
And as the speaking tour progressed, the twins said they stressed the value for people to be open with the difficulties they experienced due to their sickness. And they said they were received with open arms by those appreciating the sisters' bold effort.
"Our film conveys, not just the advocacy component, but the importance of connectivity," said Byrnes. "Dealing with the highs and lows is so much more manageable when you connect to a community of people who are experiencing it."
Those inflicted with cystic fibrosis are plagued with difficulty breathing, digesting and a variety of other issues that can eventually result in death. The disease impairs many basic bodily functions that most people take for granted. And since there is no known cure, the only way to survive is to receive a new set of lungs through an organ donation.
And it is the unfortunate nature of organ donation that one person must lose their life in order to offer a new chance at life for recipients.
This is not a detail lost on the twins.
"The truth is that we have a serious illness, and that we have received transplants to live," said Byrnes. "Someone gave a life for us to live."
"And our message is that it is alright to be authentically who you are, because someone has died to save our life," she said. "It is important to share my donor's story, so through my words, he can be alive."
The twins both emphasize the importance of a patient being their own advocate on a personal level, despite the nature of their struggle.
"I'm proud to show the world there is a cohort of patients who are proactive for their health," said Stenzel.
"Anyone who is facing health issues, whether it is people who eat junk food or smoke, if they get a glimpse of self empowerment, that people can have a role in their health, can work with their communities and families to embrace health-- that would be my ultimate happiness," said Stenzel.
It was Stenzel publishing her memoirs regarding the twins' struggle with cystic fibrosis that inspired Smolowitz to get involved in making the film.
"Illness is a very isolating experience, and seeing the twins fight it together reminds us we all need a partner," said Smolowitz.
The director said viewers are sure to be impacted by the power of the twins' journey.
"It will be an eye opener for audiences," said Smolowitz.
The Power Of Two will be screened Saturday Sept. 10 at the Castro Theater in San Francisco. There will be a matinee showing, and an evening showing that the sisters will attend and host a discussion following the film.
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