By RYOKO NAKAMURA
RAFU JAPANESE STAFF WRITER
“How are you, Hachan?” On Sept. 13, a patient’s room in the Health Bridge Children’s hospital in Orange was filled with big smiles and joyful tears. One of Hajime’s dreams had come true.
“Going to Japan with my family to see my grandma before I became totally paralyzed” was a desperate wish that Hajime Miyasaka, 18, of South Pasadena, hoped would come true since his diagnosis last October with amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease).
As soon as The Rafu Shimpo reported his wish on May 4, Stuart Millheiser, the founder of a small ALS support organization, the ALS Guardian Angels, offered to send Hajime and his family to visit Japan at no cost. Rafu readers also sent him heartfelt messages and generous donations.
However, the aggressive, pernicious disease had relentlessly taken hold of Hajime’s body.
On May 31, Hajime was rushed to an ER after suffering from a pain in his chest. The doctor immediately conducted endotracheal intubation to stabilize his breathing but was concerned about the declining muscle strength of his lungs. Hajime agreed to undergo a tracheotomy the next day.
Further tests showed that he was suffering from a pneumothorax, also known as a collapsed lung. In simple terms, air was leaking from a hole in Hajime’s lung, causing air pressure to build around the organ, making it difficult for him to breathe.
After enduring five surgeries, Hajime was told that his lungs couldn’t tolerate the change in atmospheric pressure that accompanies flying, confirming that he would no longer be able to go to Japan.
Hajime looked at Hozue, his mother, with tearful eyes. He slowly moved his frail fingers, formed the shape of a gun, and put it to the side of his head. Hozue read his lips, “I want to die.”
“His suffering, pain, sadness, and wish to die… Because I understand all that he has been going through, I couldn’t say a word to him. I was too sad to hold back my tears,” said Hozue.
Hajime has a younger brother, Ryo, and a sister, Yuki, who have been very patient and understanding of their big brother’s situation. They never complain about not getting enough attention from their parents, who have been busy taking care of Hajime at the hospital.
Over the summer, Hozue took Ryo and Yuki to Japan for a vacation. Around the same time, Hajime started showing some signs of improvement. “He was accustomed to my constant care. I think he realized he would need to be a little more independent while I was away,” Hozue said. On June 13, it was Hajime’s father Hiromasa’s turn to be with Hajime at the hospital. Hajime started typing something on his iPad with a very weak, shaky hand. Hiromasa looked at the screen and saw “Happy birthday.” It was his 40th birthday. Hajime’s pure kindness brought tears to Hiromasa’s eyes.
Unfortunately, the symptoms have progressed rapidly. Both of Hajime’s arms ceased functioning, and his neck is not strong enough to fully hold his head. He is no longer able to walk on his own. But he didn’t give up.
He started focusing on abilities that he still had. It didn’t take much time for the teenager to be back on the Internet and enjoying video games. He just needed to be a little more creative about it. His toe now serves as a finger, and his feet function as his hands.
Since he learned his grandmother and aunt were coming to visit him, checking a calendar and counting the days until their arrival became Hajime’s daily routine.
As soon as he heard “How are you, Hachan?” in a pleasant voice, he excitedly moved his legs on the bed and smiled. His grandmother Michiko Mizokami, and his aunt Yoko, and his cousin Yuta had arrived to visit him in Orange from Saitama. The hospital room lit up with their smiles instantly.
“He still has the exact same beautiful smile he had before. Since I prepared for the worst, I’m relieved and happy to see him smile,” said Michiko. “I understand what the fate of this disease would entail, but every time I see him smile, I feel as though a miracle may happen,” Yoko said.
Michiko and Yoko were concerned about Hozue and Hiromasa. Wiping tears away, they said, “There is no doubt that Hachan has been going through the hardest time in his life, and our hearts are broken, but it takes a huge toll on his parents too.” They promised to help with whatever Hozue and Hiromasa needed during their two-week stay.
“I’m glad that they came.” Hajime typed with his toe on his iPad. He now knows how to use an eye-tracking computer, tobii, to communicate, too.
Hajime, who has 629 friends on his facebook page, has been quite busy responding to chat requests. “Hey Hajime! How are you?” “I’m doing well.” “Are you typing with your toe?” “Yes, with my toe.”
Being able to communicate and connect with his friends makes him feel like “I’m alive,” Hajime said.
The next step for the Miyasaka family will be bringing Hajime back home. To accommodate his care at home, they moved to a first-floor apartment, but it will cost at least $200 a day for his care. They haven’t figured out how they will pay for it.
A social worker suggested they apply for Medi-Cal, but the rules are complicated because Hajime is a minor. His Parents would need a minimum of 10 years of work history in the U.S. to qualify. That’s impossible since they didn’t arrive in the U.S. until 2003.
Their request was denied. Since they have to move out of the hospital by next month, they have been looking for the best solution.
The Miyasaka family has received many heartfelt messages and donations from Rafu readers. Hozue reads every one of them to Hajime by his bedside. Hajime skillfully typed on his iPad with his toe, “Everyone’s kindness is what gives me the energy to keep going. Thank you for your support.”
If you would like to help, write a check payable to Hiromasa Miyasaka, and send it to him at 1107 Fair Oaks Ave. #160, South Pasadena, CA 91030-3311. To read more of Hajime’s story, visit http://hajimesalslife.blogspot.com/.