September 15, 2009
By Mark Dunning
I had to work late tonight. I'm still in the office, actually. I decided to write this to assuage my guilt. I'm not going to see my kids tonight before they go to sleep. That's another day of Bella's usable eyesight that I missed. It's another day that I could have been doing something to help find a cure; fund-raising, cause promotion, something, but instead I worked.
Among the many symptoms of Usher syndrome is guilt. Parental guilt, that is. It starts when you learn that your child has an autosomal recessive disorder. It's your genes that are causing her problems. You feel like it's your fault.
Then it's all about the ticking clock. Without a cure, Bella will lose her eyesight. So I feel pressure to travel, to take her to see the world before it's too late. I also feel pressure to advance my career because vacations take money and career advancement brings a higher income. And I feel pressure to help find a cure because finding a cure would eliminate all the concerns and let Bella live her life at her pace.
But all three of these things conflict. Time at work is time not spent with Bella, sharing a memory that she can draw on should things go bad. Time with Bella is time not spent raising money or awareness or volunteering to assist with Usher related projects, projects that could find a cure. And time spent on Usher projects is time not spent at work which limits my career and earning ability which, in turns, limits my time with Bella and limits what I can contribute.
It all feels impossible to resolve, which is why I write these words from my office at 8:30 at night. I wanted to comment on Jennifer's last post. I'm sure it felt like a brace of cold water, illuminating and staggering at the same time, but that's why she's here, to explain the scientific reality of Usher research to we families. And she's right, of course. All this research takes time, years, decades. But we don't have years and decades so what do we do?
The message to take from Jennifer's post is not one of hopelessness or panic. It's one of resolve. The point is that this is a long march and we'd best get in that mindset. We can not delude ourselves in to believing that some mystical cure will suddenly appear without our help. It won't. It's going to take a lot of time and a lot of effort, not just from the researchers, but from Usher families as well.
But what can a concerned person with limited time and financial means really do?
Well, we can do exactly what I'm doing tonight. We can steal fifteen minutes and we can do something positive. Most of the posts I write are about empowering families to get involved and stay involved. The reason? There's power in numbers. We all have fifteen minutes a day we can spend on helping researchers like Jennifer move the cause forward or to help raise a few more dollars.
It doesn't seem like much until you imagine a world where all Usher families are involved. It is estimate that there are 30,000-50,000 Usher patients in the United States alone. Those Usher patients have parents and siblings and grandparents and aunts and uncles, all of whom have fifteen minutes a day. That makes our numbers more like 200,000. Well, 200,000 people times fifteen minutes is nearly 850 hours a day. That's the equivalent of 100 people full time.
In other words, your fifteen minutes a day will result in the equivalent of a hundred people dedicated full time to finding a cure for Usher syndrome. Is there any doubt we can move the process forward more quickly, that we could turn those decades into years?
I think not.
Now if you'll excuse me, I have to go home and kiss my daughter good night. I've got one more rah-rah speech in me for my next post, then I promise to follow Jennifer's lead and get back to some substance.