Once More, With Feeling
February 18, 2015
by Mark Dunning
This blog has always been about families. Sure we talk about the science of Usher syndrome, the politics of Usher syndrome, the funding of Usher syndrome, but all of it, in the end, comes back to the impact of Usher syndrome on families. As part of that mission, we have taken on some of the most difficult socio-economic issues and, lately, tackled taboos. I have often used personal examples to illustrate these problems. Taboos, in particular, can’t be pointed at from a distance. I hoped that sharing some deeply personal experiences would give others the courage to face some issues they may have been experiencing.
Depression might be the greatest foe we face in the Usher syndrome community if only for the reason that it creates inertia. People with depression are, because of the condition itself, unable to act and we desperately need an active community. The first step to treating depression is acknowledging it and recognizing the many causes. Each of us faces them in some form or another. My family has been no different. That’s where the slew of personal stories has come from over the years.
The last twelve months have seen my family face more than a few of these ills. While I feel it has been as helpful to me to write about these problems as it has been for others to relate to them, it has also led to my life and that of my wife and children becoming increasingly public. It happened the way Hemingway described bankruptcy: gradually and all at once.
My family have appreciated all the support we have gotten from this community as we went through our difficulties. But it is long past time for our problems to be dealt with in private. To be clear, that doesn’t mean we won’t openly discuss them. We just won’t do so here in this public forum.
I had intended one final post. A post for Bella. I wanted to make it clear here, before everyone in the community, that she was in no way responsible for the problems between Julia and me. Yes, Usher syndrome played a role in our marriage problems, but that is the fault of Julia and me, not Bella. It is our love for Bella and Jack that has kept us together this long.
I wanted to assure her that nothing could break us apart. Bella and I have faced a tsunami, been pulled under by the tempest, and yet we keep bobbing to the surface, facing the sun, pulling a breath. We are strong, together, Bella and me. We are granite.
I wrote the post. Wrote every word. It came out beautiful. Might be the best thing I ever wrote. But I realized it wasn’t for the world to see. It was for Bella and Bella only and that’s the way it will stay.
This blog will continue to serve its mission. We’ll continue to address all of the issues that face families with Usher syndrome and we’ll continue to focus on hope. There is a LOT of hope out there these days. We can fill these pages with the science being done alone. So keep reading, keep commenting, and keep sharing. We remain, and will forever remain, one big family.
