Friday, October 30, 2009


The need to be seen as a hopeful leader has taught me how important it is to recognize the difference between now and later. A clear understanding of this difference makes it easier to be hopeful in the face of anything impossible.
Right now many things are impossible, peace in Afghanistan, equitable distribution of wealth, and the solution of so many problems that I am asked to address in counselling. But who can tell what will be possible later? Who remembers the things that used to be impossible in the past?
For the first 55 years of my life I believed it was impossible to treat the condition that caused my blindness. I didn’t even know its name until I was an adult. Its name is Leber's congenital amaurosis. But what’s in a name anyway? Rather than hope for a cure, I pinned my hopes on other things and built the best life I could build, given the circumstances.
I had no need of doctors at that time, and they had little interest in me, for there was nothing they could do. Fifteen years ago the ophthalmologist who gave me the name told me that the researchers had begun to isolate the genes associated with Leber's congenital amaurosis. Having directed my hope elsewhere, I was interested, but only in passing. That doctor has long since retired. There isn’t an ophthalmologist anywhere who would know my name.
But these days it is not uncommon to read that people with my condition are being treated with gene therapy, are actually regaining useful vision. And though I have not yet found my way into the inner circle of professional knowledge and physician interest that would win me a spot among the candidates who might receive a treatment, I am beginning to poke at the edges of that circle, asking to be known. For the thing that has been good enough all these years—the idea that I need not consider something known to be impossible—is no longer a valid idea. The first 55 years was now. This is later.


Aaron Johannes said...

Hi Wendy; I hope it's okay that I've quoted from one of your articles, in a short article about your blog. you can see it here:

Connie said...

Hi Hope Lady,

This is a wonderful post. I'm glad I stumbled on it. My husband has a blog he calls "Planet of the Blind", named after his book of the same name. There he posted this link that you might find interesting as you explore future options:

Best wished to you!

Emmee said...

I hope that the clinical trials are