No More Empty Fortune Cookies!

Thursday, January 27, 2011


I'm looking forward to waking up and realizing that I've just had one,very long, very troubling dream.
I know that's not going to happen, but I find myself looking forward to it.
I don't much like the idea of losing my sight, yet every day I have more and more realization that it truly is fading, and that there's absolutely nothing that can be done about it. Damn these defective genes!
I've lived my entire life tying to overcome this innate, incessantly nagging voice telling me that I am, in a word, defective.
It took years of therapy, (sometimes twice a week!)to get to the point in my life that I no longer looked at myself as defective. And here we are, full circle. In an instant, a diagnosis of a genetic disease caused by wayward genes and embedded in my DNA at the moment I was conceived brings all of those feelings of inadequacy rushing back to me.
I suppose it's good that I spent all of those years in therapy. I have a pretty good arsenal at my disposal to combat that internal nagger now. I know I'm not totally defective. I know I am smart, somewhat talented, and ambitious. Those aren't the traits of a defective person. So what if I have some defective genes? No one's perfect. No one can be. I'm learning that, and how to accept me for who I am, for what I am. And for who and what I'm not. Will my vision loss affect my life? Absolutely. Will it stop me from doing the things I want to do? Absolutely not!
I feel like a big baby when I start to get down about it, and I tell myself to "Buck up, Buckaroo!" But then, at the same time, there's this part of me that just wants to wrap my arms around me and say, "I'm SO sorry! This sucks, and you deserve better!"
I don't articulate my feelings very well in person, in conversation, but I can write them out, and when I do they come out fluid,and languid. Like the steady, slow stream that ran through my back yard when I was a kid. Constantly moving, shifting,ebbing, and carrying with it the leaves, fallen dead from trees further upstream, to some unknown burial ground beyond the boundaries of my exploration. Making way, making room for new life, new growth to replace them.
I mourn the leaves that have fallen, the ones to fall soon...but with hopeful anticipation that is equal to, if not greater than the sadness, I look for those tiny new buds to appear with their promise of growth and beauty.

3 cookies cracked:

Reb said...

You have so much talent, with words as well as in your art. I am sorry this is happening to you, but keep in mind, this is only a gene that is defective. You are a strong, talented, compassionate, loved woman.

Camlin said...

My uncle has retinitis pigmentosa. He was diagnosed 20 years ago and is now legally blind. While he has had to make a lot of changes, he is still living a full and wonderful life. His greatest fear has always been losing his ability to read - which has always been so important to him. He lost his driver's license 16 years ago, but can still read his beloved books. In the last two years he has traveled to Egypt, Israel, and England. He has a special computer monitor, and other visual aids. His biggest problem is the tunnel vision - which makes it hard for him to be mobile. There is life after the diagnosis...

Fortune Cookies said...

Reb - thank you so much! I work really hard to remind myself every day that it is just a gene, not my whole self that is defective. Your words really mean a lot.
Camlin- Thank you for sharing with me about your uncle. Like him, my tunnel vision is the biggest problem, though it sounds like mine is not as effected as his quite yet. It makes me feel better to know that others out there are maintaining a functional, active life after their sight has gone. My fear is not being able to paint, but I feel that i will always find ways to make art, blind or not.