Chronic respiratory disease is something I’ve lived with as a parent. My son’s severe asthma had him in and out of hospitals and doctor’s offices from infancy on, including several life-threatening emergencies. Thankfully, as he grew to adulthood, the bad episodes became fewer, though there is never any end to it.
So Marc Smolowitz’s documentary “The Power of Two,” about twin sisters who have survived nearly four decades with cystic fibrosis, an incurable lung disease that once killed most of its victims by their teens, hit me in a personal way. Seeing the half-Japanese sisters, Anabel Stenzel and Isabel Stenzel Byrnes, in scratchy 1980s videos with their hospital paraphernalia of IVs and inhalers and childish joy in each other’s company brought back memories — let’s leave it at that.
Based on a book of the same title the twins wrote about their lives with CF, the film is not designed, the way the so many Japanese medical documentaries and dramas are, to extract the audience’s collective hanky from its purse. Instead it is frankly intended as a call to action, delivered with a convincing message of hope.
The twins, who prefer their nicknames Isa and Ana, are campaigning not only for a cure for CF (which is still unfortunately distant), but also for increased public awareness of and government support for transplants, which are currently the only way for CF patients to survive past early adulthood. As Isa says about her own lung transplant, performed in 2000, “It’s about coming alive again.” And as Ana, who has undergone two such operations, states bluntly, “If I didn’t have my transplant I could only look forward to death.”
From the viewpoint of Japan, where only 193 transplant operations were performed in 2009, compared with nearly 28,000 in the twins’ native United States, they were the “miracles” of the film’s Japanese title indeed. In addition to having access to some of the world’s best medical care (their physician, Dr. Bruce Reitz, performed the first-ever heart-lung transplant in 1981), they live in a country where donor organs are relatively (if not readily) available and the donors themselves are considered heroes by many (Isa and Ana visit a Vietnam Wall-style memorial dedicated to them, as well as view a Rose Bowl Parade float decorated with their portraits).
So when the twins, who speak passable Japanese, came to Japan to do a book promotion tour and to meet members of the local transplant community, they were shocked at the dire situation for not only Japanese CF patients (who number only about 30 due to genetic factors specific to Asian populations), but the many Japanese in need of a transplant — and facing waiting lists as long as 20 years.
One of the film’s chief values for the Japanese audience, as well as outlanders, is its clearly presented explanation of negative traditional attitudes and weak public policy here toward transplants. Among the most passionate of the interviewees is Taro Kono, an LDP Diet member who donated part of his own liver to his father Yohei, a former LDP leader, in a well-publicized operation in 2002 and has since advocated for changes to Japan’s transplant law. But transplant patients and their families are still driven to desperate measures, such as raising money from passersby outside train stations for ruinously expensive foreign operations.
The film’s focus, however, remains firmly on the twins, who impress with their eloquence, character and sheer joie de vivre. After getting new leases on life (in Isa’s case, after a near brush with death in 2004), they unabashedly indulge themselves in travel, food and, in one memorable shot, a cartwheel on the beach.
After some scenes that are admittedly hard to watch (including one of a young CF patient coughing violently and crying in frustration), the sight of the twins living it up is both cathartic and energizing. Instead of a long-faced message film, “The Power of Two” is finally a high-spirited ode to life — and the simple joy of breathing.
As the same time, the twins pay heartfelt homage to the donors and their families who made their recovery possible. The sister of the first of Ana’s two donors makes the best argument for agreeing to donate a loved one’s organs at a moment of grief, if such an argument were needed: “It wasn’t that hard to do what we did, but it made a huge difference.”
IN FIVE EASY PIECES WITH TAKE 5