by Mark Dunning
Forever is composed of nows. ~Emily Dickinson
I have a friend with Usher syndrome. She worries about it. I know she does. I can see it in the way her eyes brighten when we talk about potential treatments. I can feel it in her enthusiasm for knowledge about the disease. Yet she does not live like someone who worries about Usher syndrome. She stubbornly refuses to let the future decide her present. She lives for today.
She has long been my hope for my daughter’s future. When she was young she drove thousands of miles with a vanload of friends to exotic locales, scraping by, sleeping on floors and in hostels. She lived crazy, carefree. She got her nose pierced. When she was older she fell in love, got married, had children. She travelled for her career then, dressed stylishly, pulled a rollerboard and used a smartphone. But she still has that same young smile, she still has her nose pierced. She has always been alive. That’s the best description of her. Alive. I want my daughter to be that way. I want Bella to be alive.
I am training to run a half marathon. I ran ten miles this past weekend and when I finished, I felt more like a corpse than an athlete. I have never been a runner before. Just read this if you don’t believe me. The irony is that I have taken up running to escape death, rather than court it.
When Bella was diagnosed with Usher syndrome, I found myself laying on the floor in the dark, my mind racing uncontrollably into the future. In a blur she was giving up horse riding, struggling in school. Then she was out of work, living in a sterile apartment. Then she was grey haired with a cane sitting at a family outing oblivious as her brother’s kids scurried around her. Then, just like that, she was dead.
Wait a minute. She was dead? That’s it? Four sentences then dead? The diagnosis had turned out to be far more dire than I ever imagined. It was even worse when I put myself in the story. If Bella was grey haired at her brother’s party, where was I? Gulp.
I put down the Ring Dings and took up running. I did it so I could be alive to help Bella. I wanted to be there to help her find a way to keep riding horses. I wanted to kick her out of the house to go to parties and socialize and make friends. I wanted to embarrass her when she felt sorry for herself and make her go to college even if she didn’t want to. And I wanted to be at that party to see grey haired Bella smiling as her children played with her nieces and nephews.
More than anything I swore to do my best to live in the present. That is where I am content. In the present Bella can see and in the present I am alive.
People with Usher syndrome are not miserable. They are not unhappy. Oh sure, they might get frustrated with their condition from time to time, but I don’t think they curse their fortune any more than, say, the average middle-manager cubicle jockey. The distinction lies in the future. The cubicle jockey envisions a brighter future in the corner office while people with Usher tend to fear the future. They dread a darker tomorrow.
The truth is, though, that we all face a darker tomorrow. If we look too far in to the future, we’ll find that we’re all dead. Sorry, but it’s true. A thousand years from now we’ll all be dirt. But none of us look THAT far in to the future. To think a thousand years ahead would cripple all of us. We couldn’t function. We are much better served living today, trying to improve tomorrow, and not thinking about the distant future.
I often wonder why we families with Usher struggle so hard to take that same approach to the disease. It’s not like we are unfamiliar with the process. We all ignore the future to some degree. Today, we are happy and functioning. Do we really need to concern ourselves with more than that? As Albert Einstein once said “Never think of the future. It comes soon enough.”
My friend inspired me to write this post. She always inspires me. She was recently diagnosed with cancer. I don’t write this as a eulogy for her, but I am very worried about her. I know it is constantly on her mind. I know she sees it in the mirror in the morning, in the eyes of her husband, in the faces of her children.
This is a painful irony. She has spent her life refusing to believe she would lose her vision. Now that might be true, but for the all the wrong reasons. I want Usher syndrome to be prominent in her life once more. I wish more than anything that it could be the reason she enjoys today. She has always been alive, thriving in the present. I wish she could stay that way forever. She is my hero. I want my daughter to be just like her.
I want her to be alive.
EDITOR'S NOTE. My friend passed away a few weeks ago. She never lost her vision to Usher syndrome. Somehow that doesn't seem to matter at all.