I haven’t been blind for very long. I’m one of the new kids on the LHON block. It’s so rare, you will not find many of us around. I was diagnosed with LHON on September 24, 2013. That was the day my life changed forever. I had never heard of LHON and knew nothing about it. As usual, I thought to myself, “Oh, I can handle this… I got this!” YEP… I went right into the comfortable world of DENIAL! I like it there…. I have control of everything and I don’t have to accept anything. La la la la la… I’m not listening…La la la la la….
I quickly learned that LHON had control of my vision and there was nothing I, or anyone, could do about it. The vision loss was unstoppable, and untreatable. This was a Type A- Control Freak’s nightmare. It was MY nightmare. I did not, and still don’t, want to leave my sighted world! The only world I know. *stomps feet with arms crossed* I had just turned 50 and I was confident, happy, healthy, and at the top of my game. Was this really how my life is going to go? Am I going to be blind for the rest of my life? As far as I know… Yes. I’m still in disbelief.
LHON is a rare hereditary mitochondrial disease. The disease is carried as a mutation in the mitochondrial DNA. When that mutation is triggered, the cells of the optic nerves (behind the eye), die or become “sick”. This causes sudden & severe central vision loss. I’m not going to go into the whole scientific description… There’s a lot to it. So, if you want to know more, grab a cup ‘o coffee and click on “About LHON” above and read all you want. You might find it interesting.
Some of you who see me all the time might think… “She doesn’t look blind. She doesn’t walk around with sunglasses, a white cane, or a guide dog. Is she really blind?” Well… Let me explain. Since April 2013, LHON has slowly taken away my central vision (the center area of my eyesight), and left me with blurry peripheral vision, no depth perception, and very little color recognition. My world is mostly black-and-white, and various shades of gray. Basically, it’s like looking through cloudy water that has snowy static swirling around all the time… and nothing in the center. My vision tests show I’m currently something ridiculous like 2o/800 and THAT, my friends is blind. Legally blind.
Not really. And with my eyesight getting worse by the day, I don’t think their usefulness will last very long. Right now, they do help my peripheral vision a little bit. I’ll tell you one thing, they won’t help me see that eye chart on the wall at my doctor’s office! Those damn nurses keep telling me to look at the eye chart, cover one eye, and I’m like, seriously?? You’re kidding right?!? Doesn’t my chart say “blind” at this point? Sheeez! It actually upsets me and is a horrible reminder of my new reality every time.
Chances are you don’t know any blind people. Hey, now you know me! Chances are you don’t know what it’s like to experience life like I do. Well… that’s why I started this blog. I want to share with you the good, the bad, the funny, the crazy, and the unexpected experiences in my blind girl life. LHON has not only taken much of my vision, it also took a part of me as well. I hope to find my way back as I move forward and write this surreal chapter that has begun. So, Ready or not… Here I come! This is ME living my unexpected life as Girl Gone Blind.