This blog will not be about sports. I apologize for that. The thing is, blogs are for spouting off, venting thoughts, and saying how I feel about things. Most often those things will be about sports. Right now, I just don't feel like talking about sports though.
I'm having one of those days. You know the type. The weather outside is dreary, and so is your mood, and nothing can seem to bring you out of that funk. With me though, it is probably for a much different reason that yours.
You see, I am slowly going blind. I have a disease called choroideremia. It is extremely rare, affecting around 1 in 58,000 males. It is an X linked degenerative disease, meaning I got the gene passed on from my mother (hey, I'm spoiled--she gave me everything).
Because of the lack of this gene, my body doesn't produce something called REP-1 protein. That is the thing that nourishes the photoreceptor cells in the choroid layer of the retina on a cellular level. Without that protein, those cells slowly die off. What follows is a loss of peripheral vision. It's like that scene in the movie "Back to the future", where Marty McFly started seeing members of his family disappearing from his family photo.
Right now I have what I call "bagel vision". If you hold a bagel in front of your face so that the bottom part is touching the tip of your nose, and you look through the hole in the bagel...well, that's pretty much what I see like all the time.
The disease presents differently in different people. The initial presentation starts earlier or later in different people, and progresses faster or slower as well. I am actually one of the lucky ones--well, depending on how you look at it.
You see, with me, I had fighter pilot like vision for the first 17 or 18 years of my life. I never needed my first pair of glasses until I was 20. I used to play all kinds of sports, and quite well actually. I used to drive, up until around age 40 (I'm 46 now). I used to be completely independent, and do everything for myself.
That is lucky right? That for the first 40 or so years of my life, things were pretty much totally normal. Well, now I am starting to think...not so much. Thing is, now I am watching all of those things slipping away from me. Most days, I am just able to deal with that and go on about my life. Some days, are like today.
I went out with one of my high school friends, who was visiting from New York City. A couple other friends met he, my wife and I out as well. Sitting in the Distillery on Winton Rd way in the back, I needed to use the restroom. For most people, that's no big deal right? You get up and go. For me, it's a major undertaking. What I would have liked to do was to try to do just that, but if I did, it would take me a half hour to find it. I might end up walking behind the bar, bumping into a couple walls, get stuck in no mans land behind a number of tables, possibly knocking over a couple of beers, and get stares by dozens of people wondering what the hell that guy with the stick was doing.
The other option is to ask my wife or one of my friends to walk me to the restroom, through the near pitch dark bar, all the way across to the other side of the room. I chose that option. I hated to do so. Not that I thought any of them would mind or anything, but just because I HATE the fact that it is easier than trying to do so myself.
Driving home later, I got in an argument with my wife because she didn't drive in the lane I would have if I was driving, and I tried to explain to her the reasons why I would be in that lane. It then occured to me that I would never be driving again myself. For someone who drove themselves everywhere for more than 20 years, you can only imagine the frustration that loss of independence would be like.
After we got home, I wanted to wrap my leftover chicken wings in tin foil, and asked my wife where it was. Rather than telling me, she felt it was just easier to get it for me herself. These things all seem so trifling don't they? But when they all happened within about 45 minutes of each other, and they all had something to do with my eyes, it drove me over the edge.
It is just so damn depressing to feel so damned helpless. Then to realize that it is only just going to get worse. It is depressing to feel like there is nothing you can do about it. It is depressing to feel like you are racing against time....how long will I be able to work, run an audio board on a radio station or reading newscasts without screwing up so badly that you just have to come to the realization that you just will not be able to do it anymore. It is depressing to fear going anywhere or doing anything where you might bump into something or someone that is going to embarrass yourself terribly.
They are doing amazing research at the University of Pennsylvania. Dr Jean Bennett and her crew are so close to finding a treatment that will at the very least halt the progression of this disease. There are other teams around the world who are doing the same thing. There are also some who are working on a possible cure, that could regenerate some or all of our lost sight.
For someone like me, I can only hope and pray that they get there in time.
All that is missing is money to fund this research. Oh they have some, but they need much much more. If they can get it, a phase one clinical trial could be only a year or so away. If they don't, it will take much longer. It's time I might not have. It's time hundreds of others like me might not have either.
For me, it's a long long way from making diving catches on a baseball field to needing fifteen minutes to find my house keys on the kitchen table. But that's my story. I would love nothing more than to change the ending....change it to a happy one, where I can find those keys in a second, drive again, and work as long as I want.
You can help me do that you know. This coming holiday season, if you make annual donations to a charity for the holidays, I would like to invite you to consider making it to the Choroideremia Research Foundation. If you don't make donations often, I'd love it if you started with us. It's very easy. You can just go to www.curechm.org, and there is a "donate now" link there. They even accept PayPal as well as all major credit cards. If you want, you can say you are doing so because you read this blog in the comment section, but you don't have to.
If that is too hard, or you are not computer savvy, you can e mail me at amerk1180@yahoo.com and I will be happy to e mail you back a mailing address.
Think of it as my Christmas gift if you will. Every dollar counts, and I can tell you, it would be the best Christmas gift I have ever received.
