Balancing Act

June 3, 2014

by Mark Dunning

My wife Julia and I learned that our daughter Bella had hearing loss when she was an infant. She was identified through a pilot program for newborn hearing screening. We learned sign language. We tried hearing aids. When she was two, she got her first cochlear implant. There were a million otolaryngology visits. She had hours of speech therapy. We attended hearing loss support groups for parents. Our lives revolved around hearing loss.

Bella didn’t sit on her own until she was almost 9 months old. She didn’t walk until she was almost 30 months old.

We learned Bella had vision issues when she was 8 years old. We were considering a second cochlear implant. The audiologist suggested we take advantage of a new genetic test for Usher syndrome. Ten weeks later it was confirmed. We took her to ophthalmologists at Boston Children’s Hospital and Mass Eye and Ear. She had fundus exams and dark adaptive tests. She had ERGs and OCTs. We sought out every expert on Usher syndrome and retinitis pigmentosa in the world. Our lives revolved around vision loss.

Bella tried soccer when she was 8 years old. She lasted a season. She couldn’t balance on one foot long enough to kick the ball.

A few weeks ago Bella was asked to speak to fourth, fifth, and sixth graders at the Douglas Elementary School. They do a program called Mini We Day that is meant to empower kids to change the world. She spoke at the event last year as well (last year’s speech is at the end of this post). Bella was flattered to be asked back. She couldn’t wait to go.

The podium was in the center of the gymnasium. The stairs were steep. There wasn’t a railing. Bella fell. She handled it well, jokingly comparing herself to Jennifer Lawrence at the Oscars. Then she gave this speech:

Girl Balancing in the Woods

“Hello everyone. I am Bella Dunning. Thank you for inviting me to speak again. I am honored. I am here to tell you my story.

I was born deaf. From an early age I could not speak, all I could is sign. At age 2, I got my first cochlear implant and I picked up spoken language. All my childhood I would stumble a ton and miss the ball or not be able to read something on the board even with glasses. My parents got worried and took me to the doctor. They diagnosed me with Usher syndrome.

Usher syndrome explained all of my problems. Usher syndrome is a disease that means you are born deaf and you have balance issues. Also you lose your vision over time. So I am deaf and I am going blind.

It is a hard disease to live with but I have a philosophy that you can’t worry too much about the future. You have to live in the now. Have you guys seen the movie the Incredibles? Remember the supersuit designer, Edna Mode? Edna Mode said “I never look back, darling. It distracts from the now.” Well, I never look too far forward, darlings. It distracts from the now. That is how I live with my vision loss. I have a long time before I am completely blind. So why not enjoy now?

You might not realize it, but you do the same thing. We all do. Because if we look too far in to the future, we see that we are dead. That’s a scary thought. But none of us lives our whole life worrying about dying. We are too busy living. We have a whole life to live before we die. And I have a whole life to live before I lose my vision. So I try to use every minute. You should too.

Thanks again for inviting me. I have enjoyed every minute I have been speaking to you. I hope you enjoy every minute of the rest of your day and the rest of your life.”

The next week Bella was informed that she was to receive an award at the annual High School award ceremony. She threw a fit. She didn’t want to go. Julia and I could not understand why. Was she worried about hearing the speakers? Was she worried she wouldn’t understand what was said? Was she worried she wouldn’t be able to see in the auditorium? Or that she might not see the edge of the stage and tumble off? But she said it was none of those things. She could use her FM to hear. The lighting in the auditorium was fine.

But she didn’t want to fall on the stairs again. Not in front of the whole high school. She is fifteen years old and self-conscious. She is proud of her hearing loss and happy to discuss her vision loss. But she was too embarrassed by her balance problems to accept an award.

We underestimate the impact of the vestibular issues associated with Usher syndrome. They isolate kids just as much as the vision and hearing. Bella doesn’t play team sports like most of the other kids. She can’t keep up because of her balance. She is not afraid of asking for a guide or to advocate for her hearing, but she is embarrassed by her stumbling. She loves to dance but doesn’t like dances, not because they are loud and dark, but because she is afraid of falling or crashing in to someone. Bella uses her vision and hearing issues to draw others closer. It is her balance problems that isolate her.

Bella was the only freshmen on the stage when they called up twenty or so kids to receive an award for science. The event was in the evening. One of her teachers gave up her personal time to come to the event and walk Bella on to the stage. She stood in the background while a man at the podium explained why Bella was getting this award.

Bella had won a special award for perseverance in science. Her teachers had low expectations for Bella because her science grades had been low in junior high. Now she had the highest grades in the class. She was the hardest worker. She delivered everything on time and it was excellent quality. They described Bella as the sweetest and most mature freshman they had ever encountered.

In the shadows at the back of the stage the teacher that had helped her up the stairs cried. It was worth more than any award to Bella. Bella shook the hand of the presenter with a beaming smile.

Then she turned and led the procession of kids down the stairs all by herself.

PS. Here’s Bella’s 2013 We Day Speech:

Hi, my name is Bella Dunning.

Thank you for inviting me to “Mini We Day”.

I am excited to be here and to talk about how we can change the world.

I have Usher syndrome.

People with Usher syndrome are born deaf.

People with Usher syndrome have balance problems and difficulty walking.

And people with Usher syndrome lose their vision.

Because I have Usher syndrome, I am often told all the things I CAN’T do.

For instance, Deaf people can’t talk.

Deaf people can’t enjoy music.

Deaf people can’t go to a normal school because they can’t hear the teacher.

They just can’t.

People with balance problems can’t ride bicycles.

People with balance problems can’t dance.

People with balance problems can’t ride horses.

They just can’t.

People with vision problems can’t read books.

People with vision problems can’t drive.

People with vision problems can’t …

They just can’t.

And kids, well kids like you and me, we can’t do much of anything.

Kids can’t come up with big ideas.

Kids can’t convince people to donate money to a good cause.

Kids can’t change the world.

Everyone knows that.

I am a kid with Usher syndrome.

Let me tell you what I can do.

I am deaf, but I can talk.

And I can enjoy music. I have cochlear implants and listen to music every day. I like Adele and Taylor Swift.

I go to RJ Grey and I go to the normal classes, just like all the other kids. And I get good grades. And sometimes bad grades.

I have balance problems, but I can ride a bike. And I love to dance. I took a dance class for years.

And I am a great horseback rider. I ride every day after school and I have won trophies in open competitions.

I have vision problems, but I love to read. And I might even get my driver’s license in a couple of years.

And I may be a kid, but I do have big ideas. When I was in the sixth grade my class and I ran a roll-a-thon. We raised $20K for the Decibels Foundation. Decibels used the money to start a program to help babies with hearing loss that would not have existed without the money we raised. My class and I changed the world.

And we were recognized for it. My class won a national award called the Classy Award. You can see the trophy in the Blanchard school. The ceremony was in San Diego, California. I was honored to represent my class. When they announced the winner, this deaf kid with Usher’s walked on stage before 2,000 people and gave a speech.

At the award ceremony, my little brother Jack, who was in the fourth grade, came up with the idea for Stink Week. Last year he and his fourth grade class raised money to help kids with hearing loss. This year he got all of the Blanchard School to join him for Stink Week. That’s 600 kids.

And those kids, those stinky little kids, have now raised more than $45,000 to help kids with hearing loss. They’ll be stinking it up next year. Those kids are changing the world.

There are no treatments for Usher syndrome. So, I can’t change the fact that I am going to go blind. Or so I’m told. I don’t believe it. I believe there will be treatments that will save my vision. I don’t believe in CAN’T.

And neither should you. You are fourth, fifth, and sixth graders. You CAN change the world.

 And you can bet I’ll be watching you.

 Good luck!

 And Go Bruins!

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