A friend told me recently that since I wouldn't have known anything was wrong if I had not offhandedly mentioned it during a routine eye exam that perhaps I should just pretend that this thing doesn't exist - that I don't know about it. And she is so very very right except… that's not how my brain works. I am a glass half empty, assumes the worst, the sky is falling kind of person.
I can't pretend it doesn't exist because I'm too busy being scared of it.
And the thing is, I've been fortunate enough to have been given hope by people who care enough to inform me that listening to my brain may not be the best idea. There's a lot of research going on right now - some of it nearly ready for clinical trials - and who knows, maybe in ten years there will be a treatment that stops all of this before it gets too bad. Or brings back anything I lose.
I have been angry at the world. I have been scared. I have been hopeful. I have been loved. I have been heartbroken. I have a whole bunch of feelings - sometimes all at once - about this diagnosis.
One of the things I hadn't anticipated was how hard it would be to not truly know my diagnosis. I have currently been diagnosed with retinitis pigmentosa - but my diagnosis is quite likely Usher Syndrome which would mean that the hearing loss that I've had all my life is tied to this vision thing I've only recently started experiencing.
The onset of the vision stuff is fairly late for me, I'm told - which should bode well for me overall. This makes me hopeful in the moments when I dare feel hope. Sometimes I dare.
The statistics say that about 50,000 people in the United States have Usher Syndrome, which means that this is a pretty rare thing, because of course.
And all of this is even more of a shock to the system because the things I love most to do - photography, reading - rely so heavily on my stupid eyes.
By the way, that's the name of the folder in my Gmail where I store all my messages with the genetic counselor, and other people relating to this eye hooey: "My Stupid Eyes."
I've never really been one to let life kick me in the teeth though. I feel like I've been run over by this diagnosis, and I've probably cried a gallon or two of tears in the past several months, but the moments when I can let myself envision making a difference somehow, those are the moments I feel strong, the moments when I feel like maybe I still have a little bit of control here.
Because I am still at the point where this is often sitting right in the front of my brain. I am told that I'll get to the point where it's not all that I think of, but right now - I'm just not there yet.