September 15, 2014
by Mark Dunning
I have not read Rebecca Alexander’s new book Not Fade Away: A Memoir of Senses Lost and Found. Don’t get me wrong. I want to read it. I was even sent an advance copy by the publisher, which was very thoughtful. Problem is I haven’t seen the book since. My mother-in-law snagged it up as soon as I opened the package. Then Bella grabbed it. I think Julia has it now. I suspect my mother will get it next. I’ll probably end up buying a copy just so I can finally read it.
But this isn’t about Rebecca. You can learn all about her by reading Not Fade Away. I can’t tell you any more about her. Truth is, I’ve never met her. I just know her father, David. This is about him. And it’s about me. And it’s about Bella. It’s always about Bella.
David is gregarious and talkative. Conversations with him loop and arc and wander but they always end in the same place. Rebecca. Everything he does, everything he says, ultimately comes back to her. She’s his daughter. She has Usher syndrome. And he would do anything to change that.
I think that’s why we have become friends. We share an obsession. It’s not Usher syndrome. Oh sure, we are connected because of the Usher Syndrome Coalition. Our conversations are about optogenetics and mouse models, about researchers and funding. But that’s not really what we are discussing. We are talking about family. We are talking about our kids. And we are talking about the obsession we share: our daughters.
We share the same guilt, too. They have this disease because of us. In fact, as with all our children, every problem they have is because of us. We didn’t steer them right. We didn’t help them when we should have. We scolded when we should have coddled and coddled when we should have scolded. We were not there when they needed us or we held too tight too long when they needed to fly free. We are flawed, deeply flawed, right down to the very molecules that created us. Flawed in a way we cannot change. But that’s fatherhood. It is all trial and error. We just hope our kids can recover from the errors.
But oh when they do!
David has been talking about this book for months. He is a big man (another thing we share) but he seems filled with helium when he talks about it. He nearly floats off the ground. I feel like I need to tug his pant cuff to pull him back to earth. There is something beyond pride when your children succeed. It is relief. They did it in spite of you. They overcame you. They worked harder than anyone imagined because they had the handicap of you.
I am happy for David. Rebecca did the work. It is her life in the pages. But David deserves this reward. He deserves the relief of seeing his daughter on top of the world, of knowing she did OK because he did OK. Usher syndrome lurks, of course. In fact, it will be all that she talks about for a while, but it will be small, squeezed in to a corner, temporarily, by their pride.
I always look forward to talking to David. It doesn’t matter what we talk about or why he called. I look forward to talking to him because inevitably he asks about Bella. And whenever he asks about Bella he always says the same thing: “You know I love that little girl of yours.”
Bella touched him as she has so many others. She is a wonderful kid, mature for her age, full of life. She is an inspiration. Writing these words, I nearly float away from the keyboard.
David and I gave our daughters Usher syndrome. We gave them a terrible burden. We were supposed to clear an easy path for them but we failed. And yet they succeeded. In spite of us, because of us, they did it.