I wanted to share my friend Jessica’s blog. She is a sweet & sassy girl who also lives an unexpected life. We live in different states. We are different ages. I’m just slightly older than her. Slightly…Ha ha! After our first phone call last October, we were instant friends. We are girls with LHON… living life the BEST that we can! I can’t wait to meet her soon!!
Check out her blog: Blind Girls Can Rock Heels
I stumbled across these thoughts from a mother of a disabled child. Her words describe, in great detail, the unforeseen plot twist in her motherhood fairytale. I did not have a disabled child come into my life. I did however, have a disabled adult come into my life. That adult was me. In September 2013, I became disabled. I became legally blind without knowing why – until a diagnosis was confirmed by a mitochondrial DNA test. I was totally unprepared for this real life plot twist. It feels something like this…
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…… When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Colosseum, Michelangelo’s David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills…. and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland. ~ via LHON.org
GGB NOTE: Like the author, I was “planning to go to Italy”. It was going to be fabulous! On September 24, 2013, I was diagnosed with LHON. In other Words, I landed in Holland. What?….No, No, No! How could I end up in Holland? I don’t want to be in Holland. I don’t know what to do here. THIS was not on my lif itinerary. People tell me I’ll be okay, and I’ll make new friends. I’ll do lots of things in Holland, I’ll just do them in a different way. No! I want to go back home. I don’t want to be in a place I can’t see.
What would you think if you saw a girl slowly walking down a dimly lit flight of stairs, assisted by a friend, as she was leaving a crowded bar – at 1 AM?
What would you think if you saw a girl being helped around a busy pool and lounge chairs after hanging out poolside all afternoon with friends?
What would you think if you saw a girl being escorted down the steps of a restaurant? Then stops at the curb so she can slide her foot over the edge and continue to walk, still hanging onto someone’s arm?
What would you think? C’mon…Would you be secretly judging her? She looks like your average girl. Cute outfit & shoes, hair curled, lip gloss and lashes on…. She looks like she’s having a good time. Hmmmm. Well, she must be drunk. She probably had one too many chocolate martinis, and now her friends have to help her!
Guess what? THAT girl is not drunk. THAT girl has an invisible disability. THAT girl is me!
The situations I described above are real experiences – my experiences living with sight loss from LHON – Lebers Hereditary Optic Neuropathy.
Sure, I may have a nice glass of wine… but, I don’t get drunk. I’m not saying I have never gotten drunk…because I have. Maybe once or twice, or something like that. A long time ago. In a land far far away. Maybe a few times. What. Ever! Anyway, now, since my sight loss, I just don’t. I mean, let’s think about that. Legally blind + too much alcohol = A HOT MESS!! OMG! That’s way too out of control for me. No thanks! Plus, we know that too much alcohol and/or binge drinking is not the best idea for people who are LHON carriers or already affected. (Note: I’m not telling anyone they can or can’t drink. Drinking alcohol Is a personal choice.)
Why do I need assistance from friends, or a white cane, with stairs, steps, or curbs, when I can walk down a sidewalk quite easily and unassisted? It’s because I have lost my depth perception. All surfaces are blurry and flat. I can’t see the edges of stairs or steps. Unless it is painted on the edges. Have you ever paid any attention to those painted lines? I never used to. Now…. I think they are fantastic! If I’m not using my white cane, I can’t tell the height of the curb, or if there is a crack or a hole in the parking lot. Put me in front of an escalator… you’ve gotta be kidding me…Holy Sh*t! I think you get the idea!
So, if you see someone being escorted down the stairs, steps, or around a busy poolside…. Don’t be so quick to judge. It could be a different situation than what you have conjured up in your mind. She, or he, might be blind, and blindness is just one of many invisible disabilities. xx
I had the “CANE” chat at my last doctor’s appointment. Of course, my mind started the fight immediately …. Hold UP! I don’t need a cane, I don’t want to carry a cane, I’m not THAT blind! or am I? To me, a white cane screams “Holy Shit…Maria must be really blind! Look, she’s got a (let’s whisper) C-A-N-E!” …Geeez…no thanks.
Before I became legally blind, my perception of a blind person was just like many others. The blind have dark sunglasses, guide dogs, and white canes! They walk around with that cane, swinging it back and forth… whacking away at everything in front of them! No offense to the blind community, but that is the mental “picture” when you do not know anything about blind mobility. Just being honest here.
Now, I will rock a cute pair of sunglasses…. But, I just don’t know if I could bring myself to carry… a cane. I’m NOT supposed to have a white cane. I’m not ready for it. I’m ready to come out of denial about it, but I’m not ready to accept it either… Its a really weird place to be. Really. Weird.
At my appointment, my doctor turned my thinking around. He said, “Maria, the cane is not only for you. It’s also for other people.”. What the hell is he talking about, I thought. He continued, “It’s a way to let other people know that they need to move around YOU. People will see they need to give you space because you have – the cane.”
Hmmm. I didn’t look at it that way. Maybe I only have to carry it in certain situations for now. Baby steps right? Hmmm… I suppose it would take some of the stress off of family and friends who help me around. I’m sure there have been plenty of people who have given me the look of “WTH? Can’t you SEE I want to get by you?” Good thing I can’t see that “look”… ‘cuz there would be some words & finger wagging going on!! Oh Gurrrl, hold my earrings, hold my cell phone!! Ha ha!
After thinking about it for a couple weeks, I made the call. It wasn’t easy to talk about, but I did get the process started. O & M training will start soon. Yeah. Cane Training 101.
By helping myself, I am helping others to help me. Does that make sense?? I hope so. Trying to make sense of this unexpected life is all I can do, as a new….. Girl Gone Blind.
Storms can be big or small. Storms can last for hours or days. I’m not talking about the weather here. I’m talking about emotional storms. The storms that occur in your mind.
In the eye of an emotional storm, there is no happiness or light. None. You never knew such a horrible place existed. A storm can begin and end at any time, and will totally screw with what was once a sane mind. I suspect some of you may relate to these stormy moments in your own way.
There is a place that runs deep. A place that is filled with fear, despair, anger, grief, turmoil, and tears. A place I don’t want to go, but, I become so weak in it’s grip. I feel mentally helpless as I move into that storm. It waits for me with open arms and says “Welcome back… I’ve been expecting you.” Do you know of this place? Have you ever been to this place?
Some storms can be almost debilitating. It can make you feel physically ill as you wonder if you will have the strength you need to come out of it. Again. One more time.
I was on “storm watch” last week. I had an appt. with my Neuro-Ophthalmologist, Dr. Ken Kubis. I knew what he was going to tell me. I thought I was mentally prepared. Yeah….. Not so much. The routine tests, along with the Visual Field test (Ugh…every visually impaired person’s nightmare!) confirmed that my vision had declined quite dramatically since my last visit in December. I took a deep breath trying to shut up the frightened girl screaming inside my head.
Did I already know that my vision had gotten worse? Yes. Did I want to hear it from my doctor? No. Did I try to blame the testing equipment? Hell YES, I did! …Just like you blame the dryer for your jeans being too tight! It’s called DENIAL!
After more discussion about the life & times of Maria’s vision… my doctor decided to repeat the MRIs and some blood tests to be sure there is nothing else causing my vision loss besides LHON. He has always told me “You are allowed to have more than one thing.” If I do… I trust he will find it. I have completely trusted Dr. Kubis from the day I first met him on September 2, 2013. The day he went to battle to save my vision and he has never stopped. Dr. Kubis is definitely one of the most outstanding and caring doctors I have ever had. The BEST!
When my appointments are over… I always thank my doctor a million times holding back the emotional tears. This time, as I stood there, I was overwhelmed by the fact that I could not “see” this amazing doctor as I did a few months ago. He has disappeared from my vision and I can’t see that reassuring smile anymore. My tears were the beginning of my next storm on the horizon. Dr. Kubis gave me a hug with some reassuring words. He didn’t have to but, THAT’S the kind of doctor he is. The BEST. I turned around and headed straight toward my storm. …Oh God … was this all really happening?
I used to fight off the storms with everything that I had. I was keeping control!! They were not going to bring me down! In reality, it was unhealthy and exhausting for me to act this way. I’m human, not a superhero.
I’m learning it’s okay to walk through these storms no matter how difficult or uncomfortable. Everyone should learn this lesson. Although they drag me into the darkness, I look for the light in the storm’s final hours. I hold on tight and I move forward in my life blinded by LHON. That is until….I hear the words “Welcome to the storm…” and lose my grip, once again.
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.
Wait… WHAT??? 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 greeting them. It’s good 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. You need to get that social etiquette thing figured out! 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 to me and tell me who you are. Use your words before you hug me, jump on me, or slap me on the ass, I, I, 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 could see… the smiles on my friends & family when they are standing next to me. 🙂 Do me a favor and just keep smiling for me. I want to 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.
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.