THE POWER OF TWO: Cystic Fibrosis is in SDAFF’S Backyard

I recently had an interview with our fearless leader Lee Ann Kim for a series of articles I’m writing for several websites about the 12th Annual SDAFF. I had read over the large fold-out program to get a sense of what films were going to be featured at the film festival. Of course I had no detailed clue as to what THE POWER OF TWO was about based on the logline in the program.

As Lee Ann and I were chatting about various films, she mentioned the Spotlight on Japan and shared that THE POWER OF TWO was about half-Japanese twin sisters with cystic fibrosis (CF).

She noticed my eyes popped up. I wasn’t asleep and suddenly woke up or my eyes didn’t accidentally roll out of my head onto the single page of questions I had hoped to ask Lee Ann. The words cystic fibrosis had stunned me onto a different “plane”…and I’m not talking about an F-14. So why was I shocked more than a taser attack?

The synopsis posted on the IMDB writes:

The Power of Two tells the remarkable story of twin sisters, two cultures, and two new chances at life. The film offers an intimate portrayal of the bond between half-Japanese twin sisters Anabel Stenzel and Isabel Stenzel Byrnes, their lifelong battle with the fatal genetic disease CF, survival through miraculous double lung transplants and global advocates for organ donation. Featuring expert interviews, archival footage and deeply personal testimony from the twins and others whose lives have been impacted by organ transplantation from the U.S. and Japan, the film provides unprecedented insight into the personal and societal aspects of this modern medical miracle affecting millions worldwide.

Here’s why I’m stunned.

When I was 16, my doctor told me that I would be dead in five years due to the deadly effects of cystic fibrosis, the number one genetic killer disease of children in the world that affects the lungs and/or pancreas. When one has the disease in both, the chances of survival are exponentially lower.

I have CF in both.

So at the time, I was taking 30 pills/day, undergoing up to two hours of painful therapy a day and in the hospital every three months.

In the late 1970s, and in my last ditch effort to avoid death, I moved to the Republic of China (now better known as Taiwan). By becoming a stuntman in Chinese kung fu films, I eventually met a man that taught me the then little known healing art of Qigong. Five months after learning Qigong and to this day, I’ve been off all medications and therapies. That’s 31 years off medication and not seeing a doctor for any CF related health issue.

To demonstrate my lungs were truly strong, and my digestive tract could take the stress and strain, in 1986, I walked 3000.2 miles (marathon/day for 115 days at a 4.3 mph pace) across America.

Of course there is no bias here (um, that’s probably a fib, which would explain the length of my usual short nose), but I would like to urge you to watch this film, Thursday, October 27, 2011 at 7:15 pm.

Always feel free to ask me questions about CF whether it’s submitted through SDAFF or in-person as I zip around the festival watching films. There’s always hope no matter what.

I would like to dedicate this article to a close soul pal of mine, Leslie Petrone, a fellow CFer who recently reached 50 and has been in the hospital for the last four months waiting for a lung transplant.

Power to her loving and loyal husband Morti who is at the hospital all and every day.

Stay strong my sister. You will never walk alone.