Tuesday, October 9, 2012

Student with Cerebral Palsy Blogs for Teens

October 4, 2012
By David Whiting

Some say forget weaknesses, focus on your strengths. But there are those who turn weakness into inspirational power.
If you’re young and have cerebral palsy, chances are you’ve heard of Katy Fetters. If you haven’t, here’s your chance to meet Fetters in her salad days. I suspect we’ll be hearing more from this college sophomore.
Fetters, now 20, launched her teen cerebral palsy blog three years ago, just won a $19,000 scholarship for an essay about her condition and this summer was profiled on national television.
When many her age aren’t sure what they’ll do with their lives, Fetters already is changing lives.
The spark? Insecurity.
• •
Fetters and her twin sister, Sara, were born at 27 weeks. They each weighed about 2 pounds.
Sara was OK. But doctors said Katy would never walk, never talk.
I meet Fetters at her school, Soka University, built on a bluff in Aliso Viejo. Standing before glistening pools, there’s a blonde in aviator sunglasses who looks as if she walked out of the MTV show “Laguna Beach.”
I’ve read Fetter’s blog. Insecure? Come on.
Fetters walks toward me. She is not fast, tilts up and down a little, sort of drags her left leg.
For a young woman raised in a culture where appearance is paramount, it’s a tough way to make an entrance.
Regardless, Fetters walks with purpose, determination and an emerging confidence.
We walk around campus, climb stairs, sit – and talk.
Those baby doctors had no idea whom they were dealing with.
• • •
Cerebral palsy is a non-progressive disorder caused by damaged motor control centers. It can occur during pregnancy and through age 3. Premature infants are especially vulnerable.
There are many forms, many stages. Fetters calls her condition mild. She explains that her brain has a hard time, sometimes an impossible time, telling the left side of her body what to do.
Her left hand works, but not nearly as well as her right. He left leg? Not so much.
But that has never stopped Fetters from doing anything. Except surfing.
Fetters grew up in Huntington Beach with a younger sister, an older brother and Sara. For a kid with CP, as Fetters calls cerebral palsy, she says hers was the perfect family.
Big brother offered a buffer when he was a high school senior and Fetters was a freshman. She had Sara and other friends as companions. And mom and dad understood the depth of human potential, of tapping into inner strength.
Her mother, Carolyn, was a rower while at UCLA where she happened to study CP. Her father, Paul, moved from Michigan to California to become a bodybuilder and is founder of the Training Spot gyms in Huntington Beach.
Growing up wasn’t about can’t. It was about can.
• • •
When Fetters was a toddler, she didn’t toddle. She crawled, combat style, arms pumping, legs following. She mastered walking when she was 3.
When friends started to skateboard, Fetters flopped on her belly and turned her skateboard into a sled.
She didn’t think much of her switch-ups. She just wanted to play. It wasn’t until the twins were 5 and Sara started riding a bicycle that Fetters grasped she was different. It took her three more years to ride a bike.
“Looking back,” Fetters laughs, “I was a nut.” A tough nut.
She joined AYSO soccer when she was 8 and didn’t stop until last year. Her secret? “Not to outrun but to outsmart.”
But on the field she mostly forgot about CP – just as her teammates did. She sometimes wondered, “Why am I so slow?”
Still, there were stark reminders. Growing up, she was supposed to do physical therapy an hour a day. A series of casts stretched her ankle. Doctors operated on her leg to lengthen a tendon. She had to wear a brace on her leg every night – she still does – and during the day for months at a time.
But her teen years proved even more challenging.
• • •
In middle school, Fetters went out for cross country and managed to keep up with the middle of the pack.
Still, one kid said she had a fake leg. Another said, “I heard you can’t run.”
Fetters used the comments as fuel, posting her best mile ever.
Understand, that mile came with suffering. “I hate running,” Fetters confesses. “It’s the hardest thing in the world.”
High school, with far more students and a much larger campus, tested her limits. “I fall a lot in general. I trip over my own feet,” she says.
One day, she took a dive in front of a bunch of upperclassmen, books and knapsack splayed. No one teased her, but she felt humiliated, defeated.
She went home and cried, withdrew. Then in the summer of 2009, before her junior year, she regrouped.
Fetters cut her waist-length hair to a bob, took ownership of what she now calls a “disability” with her fingers marking the quotes and – with the help of Stanford University student Greg Greiner – started teencerebralpalsy.com.
The blog was an instant hit. Today, Fetters gets 5,000 page views a week and hears from people as far away as Africa and Australia.
One teen: “Hi, I’m 16 and have CP (I’m in a wheelchair at the moment). I have been having a really hard time at school because I just don’t fit in.”
Fetters’ reply: “I have found that it is easier to connect with people if you are more open with them about how CP affects you.”
Fetters shakes her head, “It’s crazy to realize how much power there is in words. I had no idea I was considered inspirational.”
But it wasn’t just others that Fetters was inspiring.
• • •
Being human, Fetters has her down times. Watching herself on Fox’s show “Live Life and Win” was the best and worst of times.
“Who ever would have thought I’d be on TV,” she says, still marveling at the experience. At the same time, she hated watching herself. “I didn’t realize I walked like that. That was really overwhelming.”
But Fetters shakes off the negative and focuses on the positive, saying the show helped others find her blog, a blog she credits for a huge shift in her confidence.
For her next project, Fetters is considering writing a book about what she’s learned to help students who struggle in high school.
It could be a book for all teens.

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