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Thursday, Feb. 21, 2008
LOU GEHRIG'S DISEASE
Loss of father to ALS inspires play about disease
The death of their father a decade ago gave Rumi and Takuya Iryo a new goal in their lives — raising public awareness of the disease he died from, amyotrophic lateral sclerosis, also known as Lou Gehrig's Disease.
The siblings are creating a musical recital based on "Tuesdays with Morrie," a 1997 American best-seller that depicts a former university professor dying of ALS, a degenerative neurological system disorder that causes muscle wasting and paralysis. The play will be performed next month in Tokyo.
"Making the play is my revenge on ALS, which took my father's life," said Takuya, who will direct the recital, in which three professional actors, including his older sister, Rumi, will read the script and sing 11 songs on stage. "It's also compensation as this is what I wanted to do for my father while he was alive."
Their father, Takashi, a certified social insurance labor consultant in Miyazaki Prefecture who loved Mozart and was an amateur violinist, died of ALS at age 67 in June 1998, only about one year after he was diagnosed with the fatal disease.
Shortly after his death, Rumi and Takuya read "Tuesdays with Morrie," the nonfiction book that depicts Morrie Schwartz, a professor dying of ALS, giving Mitch Albom, his college student from nearly 20 years earlier, bedside lessons about life during his last months at his home in Massachusetts. The Japanese translation became a hit in 1998.
While struggling with ALS, Morrie talks to Mitch, the book's author, about fear, aging, desires, marriage, family, forgiveness and death, and shows that people with fatal diseases can live meaningful lives.
At the time, with fresh memories of their suffering father, the Iryo siblings thought the book, which focuses on Morrie's wisdom rather than his struggle with the illness, was unrealistic.
"The ALS that I experienced (through my father) was very severe," said Rumi, who used to go back to Miyazaki Prefecture from Tokyo every weekend to take care of her father. "When I read the book, I thought every patient cannot face ALS decently (as Morrie did), and Morrie was an exceptionally brave patient."
Their father quickly developed ALS symptoms in the early stage of his illness, which left his upper body paralyzed, and he was unable to speak, eat and swallow, according to Rumi, an actress who has played leading roles in musicals, including Shiki Theatre Company's "The Phantom of the Opera."
The siblings, as well as their mother and oldest sister, had a hard time taking care of their father as he needed 24-hour care at a hospital, including vacuuming his sputum and bathing him.
Finding a hospital that accepted an ALS patient with mechanical ventilation equipment was not easy in Miyazaki Prefecture at the time, said Rumi, adding that the family needed support from others.
"His illness progressed quickly before we had enough knowledge about the disease," she said. "We didn't know what to do to cope with the monsterlike disease."
Their impressions of the book changed several years later. When Takuya, an employee at NHK, had a chance to direct a radio musical of "Tuesdays with Morrie," which was aired in January 2007, he read the book again.
"I realized that the book has the answers to the problems I face," he said.
Rumi said she cried when she read it again last year.
"The book delivers hopeful messages for a better life" from the ALS patient, she said. "Looking back, I wish I could have talked about death and life with my father as Morrie and Mitch did."
Following the success of the radio musical, the siblings decided to do a musical recital based on an adaptation of the book. About 20 people, including actors, script writers and producers, cooperated to make the idea reality.
In the play, three actors, including Rumi, who plays the role of Mitch's wife, Janine, recite the script and sing 11 songs, four of which were specially written for the latest production.
The recital is designed to be staged anywhere with just three actors and a pianist, Takuya said, so that as many people as possible will be able to view the play and learn about ALS.
"We'd like to make it a musical recital that can help to comfort patients who are suffering from ALS," he said.
There are some 7,000 ALS patients in Japan, according to the Health, Labor and Welfare Ministry.
The play will be performed March 25 at Tokyo Bunka Kaikan hall in Taito Ward. Admission is ¥7,000. Proceeds will be donated to the Japan ALS Association. For more information, call producer Tokyo Ro-on at (03) 3204-9933 from 10 a.m. to 6 p.m. on weekdays or visit its Web site at www.morrie.tv/