Helen Keller
I arrive at the Shelby County Arts Council center. It’s early afternoon. I am here for the annual Helen Keller Art Show.
The parking lot is full of children. The kids are all dressed in their Sunday best. They are walking toward the building, accompanied by parents.
Several children hold white canes. Other kids use wheelchairs. Some are carried by their parents.
I see one blind young man run headfirst into a brick wall. He begins to cry. His mother holds him and begins crying alongside him. She is weepingly apologizing to her son for taking her attention off him.
“Hello,” says a tiny voice behind me.
“Hello.”
“My name’s Henrietta,” says the little girl. “What’s yours?”
Henrietta is using a pink wheelchair. A seatbelt is buckled around her tiny waist. Her face is cherubic. She wears a black and white dress with a jean jacket. Her eyes are looking past me.
“My name is Sean,” I say.
“Hello, Sean.”
“Is your art in the art show?”
“Oh, yes,” she says. “I won a Helen Keller award. I’m a winner.”
“Congratulations.”
“Thank you.”
Henrietta has low vision. She can’t see well. Her eyes are just one of the many organs of her body with problems. Her physical issues stem from a mitochondrial disease.
The mitochondria are what turn sugar and oxygen into energy, so when your mitochondria don’t work, this affects different systems of your body: your brain, kidneys, muscles, heart, eyes, ears. Take your pick. A mitochondrial disease is not for wimps.
“I spend a lot of time in hospitals,” says Henrietta. “Sometimes, all I do is live in a hospital.”
The disease affects Henrietta’s immune system. Whenever Henrietta gets a common cold, it’s a big deal. When she gets the flu, it’s a national emergency; get her to the ICU.
“You must be a pretty fearless person,” I say.
“No way, I’m not fearless,” she says. “To be fearless means you’re never scared. I’m scared all the time.”
“You are?”
“Yep. I have fear, just like everybody else. I’m not fearless. I’m full of fear. I have to go to Philadelphia every few months to be in the hospital. I have to get poked with needles all the time. I have doctors always telling me bad stuff. I’m always tired. I always hurt. I’m not fearless. What I am is brave.”
“You’re brave?”
“Yes. That means you’re afraid, but you keep going anyway. Even though you’re scared. You just do it. You just keep being you. You don’t stop.”
Henrietta didn’t feel like coming to the award show today. She woke up exhausted and in great pain. But she wanted to be here, she wanted her award, so she made herself come. She made herself get dressed. She made herself sit in her chair. She wheeled her chair down the aisle to accept her award.
Brave.
She wants to be a fashion designer one day. And if that works out, she wants to use the profits to start a charity that donates toys and fun things to kids stuck in hospitals.
“Because when you’re in a hospital,” she says, “you’re pretty much alone.”
During the award ceremony, I watch Henrietta roll her pink chair down the aisle to receive her award for a painting she made. When the award hits her tiny hands, her words come over the microphone.
“Helen Keller was amazing,” Henrietta says. “She overcame difficult circumstances, I really hope people can say the same thing about me one day.”
Oh, they will, Henrietta. In fact, we already are.