[nfb-talk] Sad but inspiring too!

Sherri flmom2006 at gmail.com
Sat Jan 10 22:51:07 UTC 2009

Though this article could be seen by some as a little paternizing, to me it is inspirational.
This is sad!

Blind Elk Grove teen who 'sees' with sound looks at death without fear
By Cynthia Hubert
chubert at sacbee.com
Published: Wednesday, Jan. 07, 2009 | 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.

Her son is aware that his time is running out, Gordon said, and he 
accepts his situation, though he has not talked much about it. "After 
the doctor told us what was going on, I asked Ben, 'Are you afraid to 
die? Are you scared? Do you need me to hold you?' " she said. He told 
her that he had no fear, and that he looks forward to seeing her in heaven.

"He's totally at peace," Gordon said. "My strength comes from him."

In recent weeks, as Ben has become weaker, his many friends have been 
spending long hours at his bedside. They rub his hands and feet, 
fluff his pillows and play his choice of music on the stereo in the 
living room. Some of his favorite tunes are songs from a gospel rap 
CD that he created. The project is not quite finished. Maybe Stevie 
Wonder will take up the task, Gordon mused.

"Ben has always been a kid I could rely on," said Gordon, who has 
four other children, ages 13 and up. "Always responsible. Always 
taking care of business.

"I only get him for a moment. I won't get to see him get married or 
have a family or go to college.

"But Ben's life wasn't just for me. It was to share with the world. 
Now Ben is dying in a graceful way. That's part of his purpose, too."


Call The Bee's Cynthia Hubert, (916) 321-1082.


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