Bridget Manley: A lingering question
March 17, 2012
I met Todd and Kathy Hildebrandt and their 16-year-old daughter, Katelynn, at a Moffat County High School basketball game about a month ago.
During breaks from action on the court, I did what reporters are supposed to do — I asked questions, verified names and ages, and got the basics.
Then, I went home and began to grapple with one of the most difficult stories I've ever written.
Katelynn’s voice would never be a part of my story because she couldn’t talk. She is legally blind and deaf and she cannot feed herself.
Her life is dependent on her family, teachers and those around her.
As I sat at my desk that night, scribbling possible themes and fragments for my story, an unquiet thought took root in my mind.
I define myself by what I can accomplish and articulate.
The work I do, the style of clothes I wear, the music I like and the movies I don’t — these and a million other details make up the mosaic that is my identity.
But, when the power to choose is nearly gone, when the senses are dimmed and speech is muted, what part of you is left?
What, if anything, makes life worth living if you can't define yourself and your life in the most basic ways?
It’s a difficult and humbling question, but it wouldn’t leave me alone.
It lingered like a ghost in the attic, watching me as I fumbled for easy answers that never came.
I heard on the radio once about a woman who narrowly escaped death in a car wreck only to face a worse fate.
She was still alive, but she was brain dead, by all accounts. She couldn’t move or speak, and there were no indications she had any comprehension of the world around her.
Then, doctors tried an experiment.
They put her in a brain scanner and asked her to imagine herself playing tennis. They compared her brain patterns to those of healthy people playing the same game.
The images were nearly identical. Inside her shattered body, something was alive, something was awake.
I thought about that woman as I got to know Katelynn.
What if, I wondered, there’s an active, even brilliant mind inside?
The possibility intrigued me. In my unguarded moments, it terrified me, too.
I couldn't imagine which would be worse if I were Katelynn: to have a vibrant mind imprisoned in an uncooperative body, or to be devoid of those complex thoughts altogether.
Either way, I'll probably never know because Katelynn will never be able to tell me, and sadly so.
What is life like for Katelynn and others like her whose minds are locked in bodies that won’t work?
The question is still there. It bangs on the pipes once in a while to let me know it’s still around.
I don’t have much of an answer, but at least I have a different perspective, which may be all that matters anyway.
Like scientists watching neurons fire on a screen when all they expected to see was blackness, I saw undeniable signs of life in Katelynn.
I saw her laugh with her mother, and I saw her clam up around strangers.
I saw her groan when she was uncomfortable, tired or cranky.
I saw her smile groggily at her father at 6:30 a.m. (Katelynn, unlike most teenagers, is a morning person.)
She seeks to be loved and gives love freely. Her arrival into this world inalterably changed the lives and perspectives of her family.
"I think it's made us better people," Todd told me one night around the family's dining room table. "How, I don't know."
Since I met Katelynn, I've begun to think differently about what defines a life.
The work I do, the clothes I choose, and the opinions I hold probably won't mean much in the end.
How I've influenced people around me — whether I've hurt or helped them — will remain long after the dross fades.
On that score, I know Katelynn is already miles ahead of me.
I can’t say why she was born the way she was or if it was part of a greater plan.
But, I know this: Katelynn touches people.
She quietly challenges assumptions about life and its meaning. And, if you let it, that experience can make room for a broader, more compassionate definition of what it means to be human.
I know Katelynn can change people.
She changed me.
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