A Moment Away
April 10, 2013
by Mark Dunning
My family and I will be on vacation next week. We’re going to Grand Cayman Island. I feel a little uncomfortable writing about it. It’s a really nice place and though it took quite a long time to save up, I know that I am fortunate to be able to afford the trip. Eighty-two percent of deaf-blind adults are unemployed. Eighty-two percent! So it feels odd to write about a trip to a tropical island in a blog where the audience often struggles to make ends meet. And even those that can afford it often don’t take part in such a trip because of the mobility challenges. You can’t bring your guide dog to Grand Cayman, for instance. I can’t help but wonder at my fortune and what I did to deserve this.
Tomorrow we have one of THOSE appointments. You know the appointments where you learn how much vision has been lost in the last two years. I HATE those appointments. The appointment itself is tiring; hours of sitting in the dark holding my daughter’s hand while she is strapped to one torturous device or another. It doesn’t help that I don’t sleep for days leading up to it. Every night this week, while she snores away, I kneel and pray at her bedside, helpless and drained, and wonder what I did to deserve this.
We are going to Grand Cayman Island for Bella. When she was diagnosed six years ago, my wife and I decided to take her to see the world whenever the opportunity arose. It is insurance, in case the unthinkable happens and her vision fails. We want her memories filled with the world. Bella dreams of riding horses on the white sand beaches of a crystal blue ocean. If all goes well, she will do that next week and one more memory will fill the bank. Some distant decade, if I’ve failed her so terribly that her vision is gone, hopefully she will be able to smell the salt air sea, feel the heat of the sun on her face, rock to the rhythm of a horse beneath her, and forever see the tropical ocean in her mind.
I wanted to cancel the appointment. I wanted my vacation free of the knowledge of Bella’s condition. We could do it when we got back, when the world was heavy with work and bills and chores. We could throw the appointment on the pile of unpleasantness that already fills daily life. Grand Cayman could be an escape from reality. We could dream of quitting our jobs and dropping out of school and opening a dive shop. We could extend the fantasy to the yachts and the mansions and a life of no work and no worries. I could be younger and fitter and Bella could ride horses on the beach and keep her vision forever.
But that’s not how vacations work these days. It doesn’t matter if the appointment is the day before we leave or not. Usher syndrome is always there. Always. So we’ll have the tests then we’ll run off to a tropical island, trying to hide but failing.
Usher is contradiction. Bella is deaf but she is not. She has no hearing yet she listens to birds in the morning and dances to Katy Perry. Bella is blind but she is not. She has a cane and feels around in low light yet she can read Life of Pi and draw horses in bright colors. Maybe you are Deaf and but you use tactile, not ASL. Or you can’t drive but you can read e-mail. You are in constant mourning but in many ways you are more alive. You live in fear of the dark, but see so many things that others miss.
There is one secret thing I enjoy about these appointments. It comes afterward, in the days and weeks that follow, during that time when I lose sight of a hopeful future, when I’m fighting off depression and despair. I stop looking ahead. I let go of tomorrow because tomorrow is too terrible to imagine. I whittle away time until it is just a breath, a heartbeat, a blink because that is all I can handle. I focus on a moment, this moment, and I soak in all it offers. Bella is young and happy and alive in this moment. Her grades are good and her friends numerous. We are together still, she and I, father and daughter, and I am still the most important man in her life. If I time it right, this moment might involve white sand beaches, crystal blue oceans, horses at a gallop, and one single thought.
What did I do to deserve this?