Last year was filled with many doctors, tests, and a long-awaited answer.
I think it’s time I come out.
Come out and talk about my new reality.
As Donna Summer put it — “I’m comin’ out. I want the world to know, got to let it show. There’s a new me coming out…” — with my new blog!
Here is where I will write about my unexpected life. My life with Lebers Hereditary Optic Neuropathy. Lebers what??? Let’s just call it “LHON” from now on. That’s a lot easier!
I haven’t been legally 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. Yep. I got this!”. I went right into the comfortable world of DENIAL! I love it there. I have control of everything, I don’t have to accept anything, and there is an all you can eat and drink wine and chocolate buffet. La la la la…This isn’t happening… la la la la la… I’m not listening…La la la la la…Where’s the wine?
I quickly learned that LHON had control of my vision. Denial was not working out so well. There was nothing I or anyone else could do about this disease. The vision loss was unstoppable, untreatable, and incurable. This was a Type A Control Freak’s nightmare. It was MY devastating nightmare. I did not, and still don’t, want to leave my sighted world! The only world I know. 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 legally blind for the rest of my life? As far as I know, yes. I’m still in disbelief.
LHON is a rare inherited 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” and don’t work. This causes sudden and severe central vision loss. You are then considered “affected” by LHON. 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 your beverage of choice and click on the “About LHON” tab above.
Some of you who see me all the time might think, “Hmm… She doesn’t look blind. Her eyes look the same, she doesn’t walk around with sunglasses, a white cane, or a guide dog. Is she really blind?” Ok, let me explain. Since April 2013, LHON has slowly taken away my central vision (the center area of my eyesight) from one eye and then the other. leaving me with fuzzy peripheral vision, unable to focus or see detail, 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 or frosted glass, that has snowy “static” swirling around all the time. And, there is nothing in the center. Like a circular blank canvas. My vision tests show I’m currently something ridiculous like 2o/800 and down to counting fingers, 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 20-something medical assistants keep asking me to cover one eye, look at the eye chart, and tell them which row of letters I can read. I’m like, “Oh, honey. You’re kidding me, right?!? Doesn’t my chart say “legally blind” at this point?” For. The. Love! Those 10 minutes with the medical assistant is so upsetting and a horrible reminder of my new reality – every. time.
During the creative development of this blog, I went through a billion names – and nothing felt quite right. The name had to be perfect. One that I would never have any doubts about. One night, the name “Girl Gone Blind” hit me like a ton of bricks. I knew immediately, that this was the one! It was short, catchy and well, fitting. I mean, I am a Girl who has Gone Blind.
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 as I do now. That’s why I started this blog. I want to share with you the good, the bad, the funny, the strange, and the unexpected experiences in my blind girl life. LHON has not only taken much of my vision, it also took pieces of me as well. I hope to find my way back as I move forward, pick up the pieces, and write about this life that has begun.
Ready or not… I just came out, and this is ME living my unexpected life. xo ~ Maria