By RYOKO NAKAMURA
RAFU JAPANESE STAFF WRITER
“Mom? My left arm has been shaking.” Hajime Miyasaka, 18, of South Pasadena began experiencing discomfort in his left arm last May. It had rapidly progressed to a point where he soon started having difficulty moving his left arm.
By the end of May, his left hand wouldn’t open; it was clenched like an eagle’s claw. His left arm lost muscle and became very thin compared to his healthy right arm. It instantly reminded Hozue, Hajime’s mother, of physicist Stephen Hawking.
Their doctor suspected amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease), a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. But because most people who develop ALS are between the ages of 40 and 70, it took a while for Hajime to be officially diagnosed.
In the mean time, Hajime’s left arm ceased functioning. The disease also seemed to progress to his tongue, and he started slurring his speech. Last October, the doctor officially diagnosed Hajime with ALS even though she had never before seen the disease in a teenager.
“It is very important for you to come to terms with the disease at your own pace. If you tell your friends about it, you may hear things that you don’t need to hear now. So it’s better not to tell them yet,” the doctor suggested to Hajime.
“I don’t have that much time left,” Hajime told his parents quietly after they left the doctor’s office. Hozue couldn’t hold back her tears. She and Hiromasa, her husband, knew what the eventual consequence of this pernicious disease would be. Nobody could find any words to ease Hajime’s pain.
It was Hajime himself who broke the silence. He is a member of a youth group at the First United Methodist Church of Pasadena. When he participated in the youth group camp in November, he took unexpected action.
“I have something I need to share with you all today. I’m fighting against progressive muscle atrophy, and this is the reason why my left arm is not functioning,” Hajime told the members of his youth group. He had been suffering from the guilt of lying to his friends.
Hiromasa was very surprised. “If I were him, I would never be able to open up like that,” he said. He was very proud of his son’s brave action.
At the same time, Hiromasa and Hozue were concerned about the reaction from the youth group. Until they moved to the U.S. in 2003, Hajime had suffered from bullying in Japan because of his learning disability.
Compared to Japanese culture, American society tends to be more accepting of individual differences in ability, which made it possible for Hajime to feel more comfortable about himself. He made a lot of friends, which he rarely had in Japan.
The members of his youth group were no exception. The circle of support for Hajime formed quickly. When he decided to talk about his disease in front of the entire church, the members of the youth group joined him to show their support.
In front of an audience of about 300 people, Hajime bravely explained his disease with big smile and asked the congregation’s support. Hiromasa and Hozue couldn’t be more thankful for the generous support that they received from the church members.
By February, Hajime started having difficulty swallowing. As the possibility of choking or getting liquid into his lungs rose dangerously, he had surgery to install a gastric catheter for a fluid diet in March.
When Hiromasa saw Hajime suffering from pain after the surgery, he thought, “This may be the real Hajime. Since his diagnosis, he has never shown us his pain or sadness. He was always smiling, but this may be how he really feels inside.” This broke Hiromasa’s heart.
Hajime is no longer able to eat solid foods, but he still asks, “Mom? What’s for dinner tonight?” When he was still eating a solid diet, he requested that his mom make meat-stuffed cabbage, but she missed the opportunity. Hozue still regrets that.
Even in a devastating situation that could easily destroy a weaker person, Hajime never complained about his disease or situation. Hozue has been wondering where his positive spirit is coming from.
“We don’t know how he deals with this ordeal. As his parents, we are supposed to support him, but the truth is that he is the one who has been supporting us,” Hozue said.
One day, Hajime told his parents with big smile that the times he spends with his family are the happiest moments for him. His younger brother, Ryo, 13, has been very supportive and understanding. Hajime’s little sister,Yuki, 7, wished for her older brother’s recovery as her birthday gift.
A Wish to Visit Japan
About six months have passed since Hajime’s initial ALS diagnosis. Since then, he has lost about 22 pounds. His right arm and neck muscles are getting weaker. Over the past month, his speech has become more difficult to understand.
The progression of the disease has been too fast. There are still so many things that they wanted to do as a family. “I wish we could stop the progression for a while,” Hiromasa said.
Hajime’s last wish is to visit Japan with his family before he becomes totally paralyzed. Hajime said, “I want to see my grandma in Saitama prefecture and go to the Museum of Maritime Science in Odaiba, Tokyo.” They don’t have much time left.
Fundraising for Hajime
If you would like to help, write a check payable to Hiromasa Miyasaka and send it to Hiromasa Miyasaka, 1107 Fair Oaks Ave. #160, South Pasadena, CA 91030-3311. To read more of Hajime’s story, visit http://hajimesalslife.blogspot.com/
Read an update to this story: Hajime’s Dream Comes True