Man's blindness serves as motivation

-Daily Times, MD

12/27/2007 - Some people never learn, while others are born wise. Luckily, wisdom is often accompanied by patience and compassion.

William Weeks has plenty of all three but strength may be his best attribute.

The Birdsnest native was diagnosed as a young child with Stevens-Johnson syndrome and given a year to live.

The severe, life-threatening eye and skin disorder is rare -- affecting only about one out of a million people a year.

But today, 22 years later, Weeks, who was left blind by the illness, is alive and kicking and giving back to a community that didn't always embrace him.

He's an advocate for the disabled and a motivational speaker this week talking to Nandua Middle School students about empowerment.

Born the youngest of eight siblings by 17 years, Weeks contracted chicken pox as a child and one feverish night crawled into bed with his parents, as most sick kids do.

"If I hadn't gotten in their bed, I probably wouldn't be here today," Weeks said.

His parents rushed their then 5-year-old son to the hospital. His fever was 107.8 degrees.

Weeks lost consciousness on the way to the hospital. The last thing he remembers is telling his parents with his arms outstretched, "I hope you take me to a great big hospital."

When he regained consciousness he was at Children's Hospital of the King's Daughters in Norfolk, Va., where doctors fought to cool the burning child and where they diagnosed the syndrome.

"They had been working to bring my fever down, first and foremost," Weeks said in a recent interview. "But my skin was peeling. ... You could touch me and my skin would peel off."

He lost 85 percent of his skin.

"I looked like a third-degree burn victim," Weeks said. "I do remember. My skin was popping."

The 5-year-old returned home with a prognosis of one year to live after months in the hospital.

"The real fight was then," he said, "just to stay alive."

Doctors said if he did survive, he likely would be in a vegetative state.

"Interestingly enough, within that year, I began to get stronger. I began to heal," Weeks said, attributing the improvements that baffled doctors to being at home with family in a supportive, loving environment.

A year later, he started kindergarten for the second time.

He'd lost his sight because the fever scarred the corneas of both eyes. He said he's been through many operations but there has been no change. He can see some light and contrast, but no definition. He can't see faces or facial expressions.

Nor did others recognize him.

"People looked at me and said 'that is not William,' " he said.

Doctors then said Weeks, if he lived, would never be able to have children of his own. But today, he and his wife, LaShundra, have two young sons, Josh and Noah.

Recognize potential

As disability, mental health manager for the Eastern Shore Early Childhood Development Center, Weeks works with preschool age children on early intervention, and as an advocate he works with students of all ages and in the schools.

He spent five years in special education in Northampton schools because he said school staff "was under the impression that because I could not see, I had some cognitive disability, and that was not the case."

He graduated in 1998 from Northampton High School, but the stories of his school experiences throughout the years in some ways are more horrific than the illness.

He recalls a teacher walking into a classroom whistling "Three Blind Mice," and another, who called him up to the chalkboard, put his glasses on the young, blind student and told him to read.

"We need more teachers to see with compassion beyond where these children are and see what they can be," he said.

"No one tried to push me... . The general attitude was, 'You are blind and will be on Social Security your whole life.' "

"Everywhere I've traveled, I have heard the same horror stories. It's time to stop pretending it doesn't happen."

Weeks is also a vocalist and musician, playing the piano, keyboard, organ and drums. After high school, he signed with a talent agent in Washington but eventually left when the musical style diverged from his comfort zone.

As a federally funded senior disability program navigator in Maryland, he became an authority on disability law and discovered a natural ability, not just helping people with disabilities, but as a motivational speaker.

Today he integrates his music with his presentations. He hopes to finish an autobiography in 2008 aptly titled, "Reflections from Within -- The William Weeks Story." Naturally, he's also producing an album that puts his story to music.

Empowerment

At Nandua Middle School last Friday -- just hours before the start of winter break -- Weeks told his story in a presentation that demanded enthusiasm from his audience, and the students didn't disappoint.

He's living proof of his message of empowerment. If he had listened to the doctors' opinions, he would have given up. Instead, he shaped his own life.

"Some of you have allowed others to dictate to you what is attainable in your life," he said, and asked students to take home one message: "Today, from this day forward, someone else's opinion of my life cannot dictate how successful I can be."

He called oppression and other barriers "giants in your life," and told the young audience to move beyond them and not to lose focus on their dreams.

Weeks came back to the Shore because it is important to come back, he said, but those who can make a difference rarely do, and so the problems complained about in rural areas are perpetuated.

"Someone has to be there to take their hand and help them along just like good people did for me," he said of the children and young adults he seeks to help.

"You are a tool of torture or an instrument of inspiration ... The influence you have over these children determines if you are inspiring them or if you are torturing them. That's why we have children fall by the wayside or who are missing the mark."