Stories That Inspire
December 4, 2012
by Mark Dunning
Jennifer and I were contacted recently by a film student interested in doing a short film in which the main character had Usher syndrome. I was very impressed by the student’s approach to the subject. She asked two main questions, really. What stories about Usher syndrome would we like to see told and what portrayals of people with Usher syndrome might most offend people with Usher? The obvious point being that she wanted to focus on the former and avoid the latter.
All of which got me thinking. I have seen and heard an enormous number of stories about people with Usher syndrome. Most of them are incredibly inspiring. So I thought today I’d share some of those with you. But first, let me try to answer the second question from our film student. What portrayals of people with Usher syndrome might offend people with Usher?
I’m sure if I spent more time on it, I could come up with lots of these, but I came up with three big ones.
Do not portray people with Usher syndrome as weak or needy. They are quite the opposite. Sure, they will take an elbow to navigate a crowd but that’s only because the elbow is there. People with Usher accomplish the same everyday tasks that people without Usher do, and they do so under challenging conditions. EVERY SINGLE DAY. Someone who carries on through challenges without complaint day after day after day is the opposite of weak. A hero is sometimes defined as a person who accomplishes necessary tasks under extraordinary conditions. Well, that’s people with Usher.
Do not portray people with Usher syndrome as overly emotional about their condition. Oh sure, people with Usher syndrome curse their condition from time to time but for the most part they live their lives without much thought about Usher. Usher syndrome is simply who they are. It’s not some ball and chain they drag around. They don’t like it, and they may have periods where it becomes overwhelming, but they don’t dwell on it minute upon minute, hour upon hour, every day.
Do not portray hearing loss as a burden. Most people with Usher syndrome have been dealing with hearing loss their whole lives. They don’t know any other world. People who sign can communicate perfectly well, thank you very much, and do not see hearing loss as anything more unique than the color of their hair. You hear, I don’t. You’re brunette, I’m blond. Let’s move on. And people who are oral and use cochlear implants or hearing aids are often indistinguishable from their hearing peers. You want to make a deaf person mad, tell them you feel sorry for them. I’ll be over here with the Neosporin and bandages to patch you up afterward.
OK, now for the stories that inspire me. These stories all have key elements that make a great movie. They are emotional. They are about overcoming the odds. They are about love. They are about redemption and deeper meaning. And in every case, they would make a much better film than Expendables 2.
I’ll try to keep these as generic as possible because in most cases I have heard multiple people with similar stories and I don’t want to embarrass any particular individual. Just know that I write about these with great sense of honor for having met these individuals. They are my heroes.
Story number 1: The Teenage Diagnosis
Oh, the hormonal tempest that is a teenager. My daughter can argue about the color of the grass. She can break down crying over who was handed the dinner rolls first because, clearly, it was a statement on who among the children was more loved. I’m afraid to make eye contact with my daughter, so it’s hard to imagine the stress of discussing something difficult, like a new diagnosis of Usher syndrome with her.
But it happens all the time. Kids with Usher often get diagnosed as teenagers. And it is agonizing for parents. I am constantly inspired by Moms and Dads, still stricken with their own grief, finding the strength to learn about Usher syndrome and formulate a means of communicating it to their children. The emotions of those discussions are beyond anything Hollywood could ever muster. The process is frightening, uplifting, inspiring, and beyond fascinating.
I’ve written about this before, but my favorite story is the mom who spends weeks crafting her explanation of Usher syndrome for her teenage daughter. She doesn’t sleep. She can hardly eat. She has to practice her talk over and over to callous herself so she won’t break down. Finally, she has the discussion with her daughter. When she finishes her daughter looks confused.
“That’s it?” she says, “I have Usher syndrome? I already knew that! I mean, I didn’t know what it was called but I knew something was going on. I thought you were going to say it was something bad like cancer.”
And with that they collapse sobbing in to each other’s arms. Roll credits. I need a hanky.
Story Number 2: Dreams
Young people with hearing loss are just as likely to be interested in visual arts as anyone else. Further, they are often encouraged to feed their creative side through art instead of, say, music. Unfortunately, people with Usher are often diagnosed later in life and don’t realize that their vision is at risk. So they have made college and career decisions with the expectation that their vision will be fine.
I know some young people who worked their tails off to get accepted to fantastic art schools or architectural programs. Imagine how excited they must have been to get that acceptance letter after all that work. Then, just as they were entering school and starting to follow that career dream, they found out they had Usher syndrome. Their vision was at risk. Everything they thought they were going to be changed in an instant.
Mind you, these are inspirational characters, people of strong will and determination unlikely to give up. They got in to great schools because of their perseverance and work ethic. I have no doubt they will have great success in life. The fascinating question is how it all play out. Will they continue to pursue their dreams even though they have Usher syndrome? Will they find inspiration elsewhere and achieve success in some other career? Will we find treatments for their vision loss and will those treatments get here before they make they change their life’s direction? Tell me that’s not the stuff of a great movie. I can’t wait to find out how it ends.
Story Number 3: The Transformation
I met a couple of people at last year’s Usher Syndrome Family Conference who inspired me. I had been told about them before I met them and in both cases they were described as introverted and depressed. They were both having difficulty dealing with Usher syndrome. They were both lonely and isolated in their own way. Their families were worried about them, fearful of how they were coping with their advancing vision loss. Neither one knew many people with Usher syndrome their age and were looking forward to finally meeting people like them.
Then they went to the family conference. Suddenly they were chatty. They were smiling. They were adventurous. They were excited and laughing and funny and intelligent and challenging. I have never seen anything like it. It was like they were released from a cage. Their families were flabbergasted. No one had seen this side of these folks before. The families were shocked and thrilled and a little frightened. I love stories about the wallflower that blossoms. I always leave the theater inspired.
Story Number 4: Coming to Grips with the Decision
One of the most difficult times for people with Usher is when they make the decision that they can no longer drive a car or will never be able to drive a car. Particularly here in the US, cars represent freedom, cars represent opportunity, and cars represent independence. Cars take you to work, they take you to parties, they take you away for hours and leave you alone with your thoughts. Giving up driving is metaphorical for the emotions that people with Usher face as their vision worsens. Can I continue to provide for myself? Will I still have a social life? Will I be able to do things on my own?
I think I've told this story before, too. A friend of mine with Usher drove himself to work every day. It was the only way to get there. He said he used to be terrified every morning that he wouldn’t make the trip safely. He would keep him up at night. He finally decided to give up driving when he sat in the car one morning, holding the key in his hand, convinced he would die in a car crash that day. He said he shut off the car, walked away, and hasn’t driven since.
The inspiration comes in how people adapt to this change in their lives. The resilience of people with Usher constantly amazes me. Usher syndrome is a constant state of mourning a loss and the overcoming, both emotionally and physically, the challenges that come from that loss. And who doesn’t love a movie about a resilient hero who succeeds despite the hurdle life places before him?
Story Number 5: The Loyal Dog
Many people with Usher syndrome are very close to their guide dogs. The dogs are like family. They spend almost every minute of every day together. When the dog finally becomes too old to work, it’s emotional. When the dog passes on, it’s devastating. And when a person with Usher gets a new dog, there is a sense of rebirth, of adventure, and of opportunity. Plus there’s a bit of comedy thrown in as the handler and the guide dog learn to work together. Why Disney hasn’t made this movie yet, I’ll never know.
Story Number 6: The Personal Favorite
My daughter was diagnosed with Usher syndrome when she was eight years old. By that time she had already developed an irrepressible love for horses. Her room was jammed with horses, her clothes had horses on them, her notebooks were filled with horse drawings and stickers and taped up pictures. She cantered everywhere she went, clomping down the hallway on some invisible horse. Riding horses was all she was and all she dreamed of doing.
But Bella had Usher syndrome. She couldn’t hear the instructions of the teacher. She couldn’t balance well enough to learn to trot. And now she was destined to lose her vision. Bella was never going to learn to ride and it was going to break her heart. I couldn’t bear the thought.
My wife and I decided we would let keep riding, hoping that eventually she would decide on her own that it was too frustrating, that it was too hard. But Bella never quit. She never stopped smiling. She never got down.
And miraculously, she started to get better. Her balance improved. She figured out the rhythm of the horses. She started to trot on her own. Her barn was going to a show. Her instructor asked if Bella would like to enter. Bella was over the moon with excitement.
The day of the show my wife and I were sick with nerves. How would she hear the directions of the judge? Would she be able to see the other horses in the ring with her diminished peripheral vision? Would she be able to see at all in the shadows of the indoor ring?
We worked out a system to signal Bella the instructions of the judge. It was an entire barn effort, with people at every pole of the fence trained in just enough sign language to let Bella know what to do next. Then it was all on Bella.
She made it through the first command without incident. Then she made it through the second and the third. She trotted. She cantered. She changed direction. When it was over and she had survived, I came to the realization that she probably wasn’t even the worst rider out there. My wife and I even dared to think she might finish in the top five.
We were wrong. They announced the finishing order from the bottom up. Bella wasn’t seventh. She wasn’t sixth. She wasn’t even fifth. By the time we realized she was in the top three, Bella’s riding instructor was consoling my wife who was beginning to sob. Then, suddenly, Bella wasn’t second. She had won. The barn contingent erupted in joyous applause. Tears flowed. In the ring, the little girl with Usher syndrome who was never going to ride held up her blue ribbon and trophy and smiled.
Queue the inspirational music. Fade out. And pass the tissues.