OROFINO, Idaho – Jacob Walk is blind in his right eye and deaf in his left ear, and chances are he’ll eventually lose all sight and hearing.
At 18, he says he’s accepted the prognosis.
But the Orofino High School graduate says he’s frustrated with a government social system that so far has denied him disability compensation. Moreover, he fears pending changes in health care may further snarl what future he has left.
“I would rather live a short life to the fullest than a long, stretched-out life sitting around and not being able to do anything.”
Diagnosed at the age of 4, Walk suffers from a disease called type-2 neurofibromatosis. Tumors continue to grow on nerves in his body. His father, Bryan Walk, died two years ago of the hereditary disease at age 41.
“I guess that’s the hardest thing, having watched what his dad went through,” said Jacob’s mother, Loretta Walk. “Because when his dad died he was blind and deaf and bedridden.”
Jacob Walk remembers visiting his father in a care center and how, despite not being able to see or hear his son, Bryan Walk offered affection and encouragement.
“He was Jacob’s biggest supporter,” Loretta Walk said. “He would love all over Jacob and give him a big thumbs-up.”
The irony of that, Jacob Walk says, is his father wasn’t diagnosed or affected by the disease until he was in his early 20s. Yet, he received Social Security disability almost immediately. Jacob Walk, on the other hand, has battled tumors for 14 years and been denied twice after applying for disability more than a year ago.
“The first time they said he was in stable condition,” Loretta Walk said. “The second time they said he was in good condition.” But the disease continues to ravage Jacob’s body, she insists. At last count, he had 14 tumors on his spine alone. Other tumors continue to grow in other parts of his body. He’s had eight brain surgeries, four since his father died, the most recent last November.
“When they did surgery on the eye when I was 4, the tumor was on the nerve. So when they took it out, with the nerve, the muscle can’t get the signal to open or close,” Jacob Walk said of how his right eyelid remains closed, except when there’s an involuntary muscle spasm.
“The one-eyed wonder,” he quips about the nickname he received in junior high school. “I liked it. The teachers would say, ‘You can’t be saying that.’ And I’d say, ‘It’s cool. It’s cool.’ ”
His medical bills are currently paid through Idaho Medicaid, Jacob Walk said. But there’s a chance he could lose some coverage when he turns 19 later this year. So he and his mother, through an attorney in Clarkston, continue to pursue disability through the Social Security Administration.
Jacob Walk says his failing vision and hearing make it difficult to secure a job. He said disability payments would give him a basic income around which he could plan his remaining life.
“Sure, I’m going to have to live off the system,” he concedes. “I may not be able to work, but I’m not going to be one of those people who just sit around and live off the system. I may not be able to work, but I’m going to do something to contribute back to society.”
He currently volunteers in a health class at Orofino High School and plans to volunteer to help distance runners on the school track team this spring. He remains active in the local youth center as a volunteer.
Jacob Walk says he continues to have faith in the system, but he fears time is running out, if not for him, then on a remedy to help him cope with the inevitable.
Michael Webb, spokesman for the Social Security Administration in Seattle, declined comment on Jacob Walk’s specific case. In general, he said, all disability applications are handled by state disability determination services.
Officials look for adult disabilities – injury, illness or impairment – that are expected to last at least 12 months, or result in death, and keep a person from earning $1,010 per month, Webb said.
“Most claims are usually denied because there’s insufficient medical evidence for them to make that type of determination. So, if a claim is denied at the first level, then it goes to what we call reconsideration,” Webb said.
Upon a second denial, the claim goes to a hearing before an administrative law judge, where a backlog of hearings has created delays.