There are days when all I think about is being blind.
Today is a day that all I think about is being blind…and It makes me incredibly sad.
Today is a day I feel overwhelmed by sadness and despair. Today is a day I cry uncontrollably about it. Today is a day I just can’t believe this is my life.
All it takes is one little thing, a simple task, or a memory to remind me in a big way. It’s completely crushing.
I can’t read anything or look at pictures without super mega magnification, write a note without finding a black sharpie to write with (shit, can’t read it anyway), I can’t drive…. drive my car ever again, I can’t find things in a store, I can’t recognize people around me or see facial expressions, I can’t see my face, or my own children’s faces. I have a lot of “I can’t” going on. That’s the way it is right now.
My days are not always easy. Adjusting to blindness is beyond f#cking hard! I know we all have obstacles…. But, try having most of your vision taken away. It’s a pretty gnarly obstacle!!!
I am thankful I was not affected by LHON until the age of 49. I had 49 years of full uninterrupted vision. God, what I wouldn’t give for one more day of full vision. At this point of the big GGB game…. I am also thankful that I don’t have 49 more years to live as a… Girl Gone Blind.
……I know this bad day shall pass, and there are more just like it to come.
Sometimes it’s the little things you discover along the way, that help makes a blind life easier. So, let’s talk about little dots, and I’m not talking about braille. I’m talking about “Bump-Dots”!
My Husby actually discovered them and gave me some for Christmas. I must admit, I wasn’t too thrilled with this gift. “Really?, What the hell do I do with these stupid things?” I thought to myself. Well, now that I have them all over my house – I. JUST. LOVE. THEM!
Bump-Dots are little round polyurethane “bumps”. They have an adhesive on the bottom so you can stick them on things. They come in various shapes, and some colors. Quick side note… It was brought to my attention that they look like, ummm, little hard nipples. High beams. Headlights. Shit…typical male mind, Right?!? Yeah. Let’s move on.
The nips…I mean, DOTS can be put on appliances, keyboards, remotes, and other things that might be difficult for a blind person to see. Because I can’t see a button on the microwave, or a key on the keyboard, daily life can be a bit frustrating. And trust me…. No one wants to be around a frustrated blind girl!!! Nope!
On The Microwave: I used to press, press, press all over the keypad hoping to hit the 1 min. spot. Not a big deal, just frustrating. Now, I have dots on the 1 min., 30 sec., and OFF buttons. Feel it, Press it, Bam!
On My keyboard: There are certain keys that I use a lot!!!!!!!!! Can you guess which ones??? Yeah………… you know which ones! Ha ha!! Well, I put dots on all the keys that I use most, Including my dictation key. If I want to delete, I just feel for it. If I want to start dictation, I just feel for it. Feel it, Press it, Bam!
Never in my life, did I think I would ever have to use my hands for sight. I guess blind girls become pretty good with their hands! (Oh STOP. Get your mind outta the gutter! ha ha!). The point here is, I recommend “Bump-Dots” to anyone who is legally blind. Get these little gems, and make your, (or someone else’s), life less frustrating and more manageable!
If Bump-Dots sound like they would help you or someone you know – Google and order ’em, pick them up from your local blind center or organization, or ask your State Department of Rehabilitation/Blind Services counselor about them. You’ll be glad you did!!
A good friend will take a blind girl shopping.
~ She will describe every pair of black workout pants on the rack in complete detail. (That sounds cute!)
~ She will hold them up to show you the length and let you feel the material. (Very important… they have to feel yummy!)
~ She will tell you how they look when you try them on. (Does my ass look good in these? Ha ha.. Ok, for real, does it?)
~ She will pick out a cute lavender shirt for you to try on, because she thinks the color will look good on you. (She was right!)
I rely on my friends & family more than ever to help me do things I can’t do Or figure out by myself anymore. I can’t see clothing details, the size, or the price. I need others to look at that stuff for me and I appreciate it. (Remember… I’m a control freak! Stepping away from the control has not been an easy process!)
What I can see is true friendship. The friendship of the people that will do whatever it takes to help me feel comfortable in any situation.
The friend who took me shopping today was Gabby Marrewa. She has gone above and beyond for me as I slowly lost my vision. She has watched me go from fully sighted to legally blind. I could never, ever thank her enough for all she does for me as I transition into a Girl Gone Blind.
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