October 31, 2017
by Mark Dunning
I have a really nice watch. It was a gift from someone very special. I wear it every chance I can. It’s a warm reminder on my wrist, a memory of something wonderful.
But my watch doesn’t tell time correctly. I have tried to fix it numerous times. I changed the battery, brought it to the shop, spent money on it, and did without it for extended periods. It would run for a while, then inevitably it would stop working as expected.
It’s still the best watch I have ever owned, perfect in every way.
Here in the world of Usher syndrome, we are torn asunder by the forces of the future. Everyone looks ahead to a time when there will be treatments, when there will be a cure, when things are fixed. Yet while I have wrestled with the future, tried to shape it, to guide it, to re-imagine it, my daughter grew from a child to a woman and we all ended up someplace very different than I expected. I controlled nothing, fixed nothing. Time carried us where it wanted.
The Usher syndrome community has invested tens of thousands of hours in to raising money for research. We have invested millions of dollars. Some amazing people have dedicated their entire careers to finding the answers that will eventually lead us to a cure. Decades have passed as we chased that dream.
To date, that investment in time and money has not changed the vision of a single person with Usher syndrome.
This is not a criticism or a suggestion that science doesn’t present great hope for the future. We all need a hopeful future. It’s just that while the labs churned away, my daughter grew from a child to an adult and her vision deteriorated a little every day. But a funny thing happened. She is happy. She enjoys her life.
So I suggest that we change our approach slightly and stop worrying about time. Many in this community have lived decades anxious about the future. Of course we need to continue to invest in research, to search for treatments. But we should also invest in the present, expand access to this community, and take a break from constantly trying to fix what can be, at times, perfect as it is.
There was a moment, a beautiful fall day when I sat on green, green grass in my backyard. The air was cool and crisp, the sky radiant blue. The trees were exploding in red and orange and yellow. There was a pile of leaves and two giggling children. They dove in the leaves and ‘tackled’ me. I caught them and barrel rolled with them safely in my arms. Their laughter still echoes in my head, their smiles seared in my memory, the afternoon paused forever in my mind.
Bella had Usher syndrome that day. She was deaf. Her balance was bad. Her vision was deteriorating. I wouldn’t have changed a thing. It was perfect in every way.
In the last decade, the Usher Syndrome Coalition has helped thousands of people with Usher syndrome. We haven’t cured a thing. We fixed nothing. We just helped the people clear the clouds and let the sun shine. They still have Usher syndrome. They are still deaf. Their vision is still deteriorating. But there is something about being together, barrel rolling in the arms of one another, that makes this, in many ways, perfect.
We will find treatments for this disease. Cochlear implants have changed the lives of many. A cochlear implant-type breakthrough is coming for vision, for balance. But those things won’t really ‘fix’ anything. Treatments themselves are not a source of happiness. They grant access to more tools that can be used to create a happy life. A community of friends and family where we feel safe and have opportunities for personal growth is the outcome we all want. We can have that with or without treatments for the disease.
That’s what makes my watch is perfect. When I am with those that I love, when I am doing something that makes me happy, when I happen upon a moment of bliss, time stands still and the seconds last forever.
That’s the cure we all need.
Please consider the Usher Syndrome Coalition when you go to write that next check. We need to support the research. The science will eventually change all our lives. But in the meantime, we need this community. Fast-forwarding time isn’t the only way to treat this disease. The Coalition gets us through the now. Investing in the moment can produce amazing results, too.