Can you imagine walking around and not being able to see anyone’s face? Sounds a little bit like an episode of the Twilight Zone, right? Well…as much as I wish it was a TV show… It’s not. It’s my reality. I can’t see people’s faces.
You don’t see people’s beautiful (or not so beautiful) faces??
No, I don’t.
As I’ve lost my central vision, I’ve lost my ability to see people’s faces. Hey…That could be to your advantage if you look like total crap one day! I will never know!
Growing up we are taught to look people in the eyes when they are speaking to us or when we greeting them. It’s proper social etiquette. If you don’t do it, people may think you’re rude, or Just don’t give a sh*t about the conversation.
When you focus in on someone’s face, you use your central vision. When I use my central vision to look at someone’s face, all I see is a cloudy gray area, not the face. If someone is further away, they just disappear into that cloud of gray.
So, guess what? If I can’t see your beautiful face… I won’t recognize you! Even if I met you an hour ago, six months ago, or years ago, I will not recognize you. I can’t recognize my own family in a crowd. That’s the sad & scary truth.
Okay… Let me add in something right here. There are a couple of ways I can see your face. I can look at a super blown up picture on my computer. The other way is if you come very, very close to me and I look above your head… I can see you through my peripheral vision. I can map out your face. Eyes, nose, and mouth. It’s really blurry, but it’s better than nothing. So, if I look up while I’m talking to you, just go with it. It’s what people with LHON need to do.
What can you do to help me feel more at ease?
Come over to me and tell me who you are. Use your words before you touch me, hug me, jump on me, or slap my ass. Umm, I mean, my back. And if I don’t know you, and you know I’m blind, please introduce yourself. Then I have an idea about who is around me. That keeps my anxiety from rearing its ugly head! And for the love of God… Don’t say “Hey, remember me?” OR “Guess who?” OR stand next to me and say nothing. Nope. Nope. Nope. I’m blind. You’re not. Just help a mutha out!!
So, if I don’t stop and say “Hello!”, please don’t think I’m a bitch who’s totally rude. I’m just a blind girl trying to keep a positive attitude.
I wish I could see… the sparkle in your eyes, the warmth of your smile, and your facial expression that light and up the conversation.
I wish, I really really wish, I could see the smiles on my friends & family when they are standing next to me. But I know that I will likely never see a clear smile – live and in person – again. However, do me a favor loves, keep smiling for me. I will feel your happy vibe as a… Girl Gone Blind. xx
I get asked a lot of questions about how I do things in my daily GGB life. People are curious and I would be too! I thought I would start answering those questions on my blog from time to time.
One of the questions I get asked the most is… “How do you write/read things on social media, e-mail, or on your super fabulous GGB blog site if you’re…you know….blind?” It’s a good question. Have a seat & let me “talk” this out for ya!
My absolute favorite piece of technology at the moment is… DICTATION on my Mac mini! Big shout out to my son for setting me up with it! I do all my writing pretty much the same way. I dictate on everything.
For example, on social media, I have to ZOOM in really close on the area/box that I’m going to type in. That allows me to see the words enlarged and I see the words coming across the screen for accuracy as I dictate. For me to see the words, they have to be bigger than my central vision – So I can catch words using my, somewhat fuzzy, peripheral vision. Basically, if anything falls within my grey area or “Scotoma”, It’s not there, vanished, gone! –Yeah, Turn off the lights…Close the door…My central vision has left the building. – Hopefully, you understand this whole bigger or smaller thing. it’s just hard to explain.
What about the blog? Ok, I usually start with a word document, and once again, I zoom in on the blank page so everything will be ginormous. I also increase the font size Which helps the readability as well. Then, I start talking (dictating) and say what I want to say. As I already explained, the computer types it out word for word on my screen as I speak. Even profanity, IF I care to use it!! I have some friends who would LOVE it if I sprinkled a few of those “colorful cuss words” in my blog. Not gonna lie, it may happen. It will just depend upon my mood or the blog topic.
When I’m done dictating – blah, blah, blah, I reread everything, like a million times. If there is a mistake…. I delete and go back to dictation mode, (or type if it’s minor) to correct it. Then, I read it again. Dictation isn’t perfect and it may get a word wrong if it doesn’t understand me, or if I talk too fast and furious. ….. and THAT never happens! Ha Ha! When I feel that the blog is as perfect as it’s going to be, I copy It from the word document and paste it into WordPress. I’m sure there’s a better way to do this… But, this is what I do for now. Once it’s in WordPress, I put in all the finishing touches, such as Italics, hyperlinks, and photos. And reread it another million times before and after I publish it. I’ve been known to get up at 3 AM to fix a sentence, or paragraph, that bothers me. I might sorta, kinda, be a perfectionist. Ummm. Maybe.
Needless to say, writing on social media, my blog, along with emails and messenger, can be mentally and visually exhausting. I’ve had many “blog hangovers” from too much blogging the night before! For real! I know I put a lot of pressure on myself,I always have. Vision loss and patience with myself has been a real challenge for me. What it really takes is a lot of determination to continue writing or reading with assistance. But, if I want to stay blogging, and stay connected…. It’s what I have to do.
Dictation helps me keep connected to my friends, family, and the world around me. So, if I talk too much, I hope you don’t mind. I’m just talking about my life as a……… Girl Gone Blind.
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