[nfbwatlk] Inspirational and Interesting
amcanfield at comcast.net
Wed Jan 7 21:46:09 UTC 2009
I won't be giving up my cane any time soon.
Blind Elk Grove teen who 'sees' with sound looks at death without fear
By Cynthia Hubert
chubert at sacbeeddcom
Published: Wednesday, Jan. 07, 2009 out Page 1A
Time is growing short for the boy who "sees" with sound.
Ben Underwood, the blind teenager who has dazzled people all over the world with his ability to navigate using a tongue-clicking skill called echolocation,
is getting weaker day by day.
The cancer that took his eyes when he was a toddler has returned with a vengeance, invading his brain and his spinal cord. Ben's legs no longer are strong
enough to support him, and his mother must carry him up and down the stairs of their Elk Grove home. The teenager who traveled the globe the past two years
giving inspirational speeches and impressing people with his ability to get around in a world he cannot see, spends most of his time these days in a hospital
bed in the living room, sleeping, praying and listening to music.
Ben is under the care of hospice nurses, and he understands what that means. But he insists he is not afraid of dying, even at the tender age of 16. One
day soon, he told his mother, Aquanetta Gordon, he simply will go to sleep and wake up in heaven.
"He is such a strong kid. He never complains," Gordon said on a recent day, as Ben slept nearby under a fuzzy blue blanket. "I am the one who cries. The
idea of having to bury my baby? I'm not sure how to do this."
Ben's doctors said he could have weeks, or months, to live. But whenever the end comes, he will have left a powerful imprint.
Since The Bee published his story in May 2006, Ben has been featured in magazines, newspapers and television programs from Japan to Great Britain. He gave
an inspirational speech to some 10,000 people at a Christian conference in Hawaii and has become an Internet sensation. He has chatted with Oprah Winfrey
and danced with Ellen DeGeneres on national TV. He has become friends with the iconic musician Stevie Wonder, who celebrated his 16th birthday with him
and slipped into town quietly again last week for a visit.
"Ben is an extraordinary young man who has inspired literally millions of people," said his doctor, Kaiser Permanente pediatric oncologist Kent Jolly. "He
has fought a heroic battle."
Blind since he was a toddler, when a cancer called retinoblastoma took both of his eyes, Ben adapted remarkably well. He taught himself to reach places
safely by counting steps and by using his keen senses of hearing, smell and touch. Gordon insisted that her son attend mainstream schools and be treated
no differently from his classmates. She encouraged him to take risks.
When he got older, Ben taught himself to identify objects by making clicking noises with his tongue, creating sound waves that he uses to identify objects
and get around. The skill, called echolocation, is commonly seen in bats and dolphins but rarely documented in humans.
Thanks to his spirit and his incredible navigational skills, Ben has been able to take part in all of the rituals and activities of childhood and adolescence.
He has attended mainstream schools, most recently Sheldon High, and has refused to use a white cane identifying him as blind. He's played basketball, practiced
karate, skated and ridden a bike through his Elk Grove neighborhood, clicking his tongue and listening for sound waves that tell him whether he is facing
a brick wall, a metal car or other obstacles. He's learned to type 60 words per minute and text message his friends. He's played video games by memorizing
scenarios and identifying sounds that characters make before they move or strike.
Jolly and Ben's pediatric ophthalmologist, James Ruben, said they have never met anyone quite like him.
"It's extraordinary that Aquanetta has raised him without treating him as if he was disabled, and Ben has risen to the challenge," Jolly said. "He's never
been allowed to cut corners or take it easy or feel sorry for himself."
Ben's cancer was in check until 2007, when he developed a tumor in his sinus cavity. Intensive chemotherapy, radiation treatments and experimental measures
have failed to cure it, Jolly said.
The teen continues to get radiation treatments that keep him more comfortable, but the effects are temporary, said Jolly. Ben dislikes taking pain medication,
but gets some relief when his mother gently massages his head and shoulders
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