Would I Want To See How The Years Have Treated Me?

Things that make you go “Hmmmmmm……..” 

I had a weird question come to mind the other day as I was cleaning the mirrors in my bathroom. The first question was… “Why the hell am I cleaning these mirrors, I can’t even see myself!” …that’s not the weird one. Then the next question was…..“If I regained my vision in 10, 15, or 20 years… would I want to look at myself in the mirror?”  I stopped and stared at my cloudy reflection. Wow. Maybe I need to lay off the Windex….’cuz that question hit me like a ton of bricks! I know physical appearance isn’t everything… but, would I want to see how the years have treated me?

First of all, if I got my vision back, I would run, DRIVE, or fly to wherever my children were…… and look at them for a really long time. I would study every detail of their faces until they said “Ok, Ok Mom…really??”. And I would say,”Yes! Really!” Then, I would make my way to the rest of my family and friends, and go on a road trip and look at everything and anything I could! Wow. My heart is racing just writing about this!!!  

Let’s go back to that mirror in the bathroom. Would I go over to the mirror and look?  Would I want to see how I’ve aged…since becoming legally blind at the age of 50?  Would I recognize the woman in the mirror?  Have I aged gracefully? Do my eyelashes look as awesome as I think they do? Is my hair color the way I remember it?  

I haven’t been able to shake this question, so I threw it out on the blog. Am I the only one who thinks about this weird stuff? How would other people, who have lost vision, answer this question? I just don’t know. What I do know is this….looking in the mirror would be more than just seeing my face. I would see the years of laughter, sadness, smiles, and worry that have been etched upon my face. Meeting up with my reflection would be an emotional reunion. (Hopefully not too shocking!)

Tell me. Would you look in that mirror? Would you be prepared for who you would see after all those years?  Hmmm….

Do You Remember The Day You Got Your Diagnosis?

 

Have you ever received a phone call with some unexpected bad news that changed your life forever?
Do you remember the exact day and time? 

I have, and I remember the day and time I received my diagnosis. 

On September 24, 2013 – 5:30 PM…. I got a call from my Neuro-Ophthalmologist. He broke the news to me , “I just got you’re Leber’s test result.  It came back POSITIVE. Now we know what you have and I’m sorry you have it.  I know you have kids… how old are they?……”.

 BOOM! 

That was the call that changed my life forever. That was the call that sent my family into the world of Leber’s Hereditary Optic Neuropathy. That was the call that told me I was going blind and there was no treatment or cure. 

Those kinds of unexpected calls are devastating! They bring on feelings of shock, anger, disbelief, confusion, and asking HOW is this happening to me? …. and what the hell do we do now? 

I know I’m not the only person who has received a call like that. Families all over the world have been called and told they have the LHON genetic mutation running in their family. I’m sure most of them remember the day, and perhaps the time, of that call. 

I hope… and pray… that each year, when September 24th rolls around, I find myself in a stronger place than the year before. More “cans” less “can nots”, more “laughter” less “tears”, more “party” less “pity”, and kicking ass as a….. Girl Gone Blind! 

*Thankful for the support of the LHON Facebook groups and for the people I have met (on the phone or in person) in this community! xx

 

 

 

 

And Then I Stepped Up To The Podium And Told My Story

As you recall, I spoke at the LHON Symposium last June in Pittsburgh in front of many people from the LHON community. The whole day was videoed so that anyone who didn’t make it to the symposium could benefit at a later time. Well, the time is NOW! Over 7 hours of content are broken into 9 numbered sessions, so you can start with Part 1 and work your way through the day, or go directly to the session(s) of interest to you.

So grab your popcorn and have a seat… Ready??? I’m posting “Part 1 — Welcome and the LHON Journey” because… well, lets be honest, I’m in it!!! It’s GGB’s speaking debut! This is where I tell my journey so far. Click the video below to watch it (I pipe in at about 16:00).

Here is another one for your viewing pleasure! Four of my affected friends tell their stories! Part 2 – “the LHON Journey”

I can’t wait to attend next year and every year after that!!

2018 Update: If you’d like to view more videos from past LHON Conferences, please click here to get to the YouTube channel!

Finding Pieces Of My Life A Year After Vision Loss

 

Image of A decorated birthday cakeTODAY is my birthday.

There were times I wasn’t sure I would, or wanted to, make it here. Somehow, with a lot of therapy, I am here. I made it to my first BLIND birthday. That makes me a little sad and I’ve been reflecting about the last year of my life. For starters, I’m not supposed to have blind birthdays. But, there was no stopping the LHON landslide that covered my world after I celebrated my 50th birthday last August. Wait, OMG people… Can I just say that my “50th” was the best party EVERRR!! Thinking back, I believe that every perfect pinterest party detail, and invited guest, created an unforgettable gift for me. The party was one of the last visual gifts I was allowed to have. I went big, and it was worth it. So, so, so thankful. I just wish I had known that my vision was fading away permanently. I don’t know. Maybe it was best I didn’t.

A month and a half after my party of the century, I was diagnosed with, and in the acute phase of, LHON. At this point, I could feel my mental strength and vision slipping away. Every week, every day, every hour. It’s been a roller coaster of a year for sure. With that said, I want to talk about it. Actually, I need to talk about it. Let’s dig around in the “Lost and Found”, and see which pieces of my life were sadly lost or happily found!

Image of a Wooden lost and found signPieces of My life That were lost Because of LHON 

I lost the ability to see faces, which means I can’t recognize friends or family. I have no depth perception, and can’t see details or most colors. I’m not able to read, or look at photos, use my computer, or phone without assistive technology. I lost my ability to drive a car. I can’t bike, or go out on a power walk alone. I lost my confidence, control, strength, joy, and hope. Deep down inside…. like as deep as that darkest part of the ocean where only little glowy creatures live… I knew that I had to find some shiny new pieces to recreate my new life. 

Pieces of My life That were found because of LHON

Image of me Walking with my O & M trainer I found overwhelming support & love from my family and friends…..more than I ever thought possible. I found I really CAN ask for help, and that people want to help. I found LHON.org and the LHON FB Community, which gave me opportunities, and connection to others like me. I found my amazing Neuro-Ophthalmologist, Dr. Kubis, the San Diego Center for the Blind, and my “No bullshit” therapist, who all cared and saved me (many times), from a complete mental breakdown and trips to the Psych Ward!! I found that anger can be a motivator and I started using that white cane… I use it…sometimes. I found parts of me, Maria, that I never knew existed. I found that bad days always end, good days always begin, and all the pieces of my life will start to fit together again. Damn! I must admit… I found some good stuff! 

Image of Pink Girl gone blind logo

My biggest surprise was finding this little premium piece of life. The world of “Girl Gone Blind”. She has made me laugh and cry. Her strength, perspective, and insight blows my mind. She has come a long way since last summer and I am proud of her! Sending a special thank you from the bottom of my heart to Miko Radcliffe for designing and supporting her…GGB ROCKS!   ….. Yes, I know I’m talking about myself…. Shut up and just go with it! My birthday. My blog. My rules.

Enough birthday reflections for ya?  I got more! Okay fine, I’ll stop. Now, let’s eat cake… I love cake… and celebrate this day!

Final note: For my future birthdays, please, pleeeease make sure my cake is always white cake with white buttercream frosting. You know that thick sugary frosting that makes you feel sick after four bites… But you keep eating it? Yeah, that kind.  Don’t try to trick me with that whip cream shit… Just don’t. Thank  you. xx 

 

Sight Loss Can Kiss My Lash!

Every girl wants to be able to look and feel her best. Even us blind girls! We still want a little fancy, some fantastic, and a whole lotta fabulous for ourselves! I might be speaking for only a few of us blind beauties or maybe just me. Whatever…it’s MY Blog! 

Close up photo of one eye with lash extensions on
A photo of my eye with lash extensions!

Well, listen UP girlfriends!! I have been doing  something that makes me feel FAB! EYELASH EXTENSIONS! Where have these been all my life? They are the SHIZZ  y’all! I love, love, LOVE my lashes! They are a simple fix for your mascaraless eyes and you never have to think about them! ….. Don’t we already have enough to think about? Is my shirt inside out, what color is this, can I get a ride, what does this say, who are you, is this a bottle of wine..…. Exhawwusting!

Image says "sure my life isn't perfect but my lashes are!"Maybe I shouldn’t give a crap about my appearance. I mean, I’m 50, I’m blind, everyone would understand my situation, it really doesn’t matter how I look anymore… OH HELL to the NO!  HOLD UP! My appearance matters to ME! I still want back some of the “fabulousness” that LHON took away from me. I did NOT come this far in my life to go blind and  say “F#CK IT!” 

Lash extensions are amazing! They are on 24/7 and I never have to think about them! Sooo, sight loss can“Kiss my lash!” 

I’m bringin’ fabulous BACK to this Girl Gone Blind.

 

I Do It More Than Your Average Girl

 

There are a lot of frustrations in life. But let me tell you…. It goes to a whole ‘nother level when you have to adjust to an unexpected life.  A blind life. I got a list of frustrations going in my pretty little head. I should really write them down for blog ideas or therapy sessions! Shhhyeah, no… too hard to read…too frustrating. Never mind. 

A day doesn’t go by that I don’t do it. I do it a lot. Knocking over a glass, cup, jar, or bottle of something on a table or countertop is a daily occurrence! If it’s a clear or white/light colored object on a light colored surface.. it’s invisible.  If it’s a dark colored object on a darker surface… it’s invisible. That crystal wine glass or great–grandma’s white china tea cup, best stay out of my way!

Photo of a bowl in a China shopI was never the “clumsy” type. Never. Remember, I am the “control this shit” type!  Now, I’m a “bull in a china shop!” Watch out, here she comes! “Whoops, sorry!”…”Uhhhoooh shit!”…”Whoops, OMGawd…not again!”  I know it’s stupid that it gets to me mentally as much as it does.  It’s just not how I used to be. 

Knocking shit over happens. Spills happen. I know, I know. It’s the REASON it happens that’s so painful and frustrating to me. There is not enough paper towel in the world to clean up BLIND! 

So, Yeah…I do it more than your average girl! …Get your mind out of the gutter…Again! Ha ha!  Knocking over things is just something I accidentally do.  And paleeease don’t say… “Oh, I totally know what ‘cha mean! I knock things over all the time too! Ha ha ha ha” …No. No you don’t. You’re clumsy, I’m blind. Wanna trade? Yeah, I didn’t think so. 

Here’s my GGB tip: If someone who is visually impaired or blind knocks something over… Just show them some love by helping them pick it up or clean it up. Don’t add to the frustration of vision loss. I guarantee you, it will happen again when we least expect it.

Photo of a toddler holding a sippy cupMaybe I should purchase a cute “Sippy cup”…..to fill with water, coffee, juice concoction of the day, or maybe an expensive fine Cabernet. Annnd… If I was you, I would move grandmas china out of this “bull’s” way.  Crash! < sigh>  My life gets messy and I might pout…. it’s a process to figure all this stuff out!  I guess I’ll get used to doing it more! More as a…. Girl Gone Blind.

I could be the "Extra Credit"!

 

“Mom, you won’t believe what we talked about in psychology today.  The psychological effects of becoming blind!” …shuuut the front door…no way….for real?!?! Tell me more!

He told me the professor asked if anyone in class knew someone who was blind. He raised his hand and told my story. I think that’s pretty cool!

6a00d8341fd10e53ef01901bdf7d05970bShe discussed the psychological issues and adjustments of going blind. Different from being born blind. It’s a loss that causes the loss of many things. Giving up a driver’s license or driving is devastating. Asking for rides and help from others can be psychologically difficult.  … That professor is right on, Amen sister! Tell IT!  

Well, I launched right in: “Hey, she needs to read my blog!! Give her my GGB card! Better yet… maybe she would want me to come and speak?!? … I got experience…I’m super into that whole psychology thing…she really needs to read my blog… can you e-mail her… I’m the perfect guest speaker … right?  Don’t ‘cha think?!”

My son: “Ummm… we’ve kinda moved on. It’s only an 8 week semester, we move kinda fast through this stuff.”

Me:“C’mon… it could be my next GGB gig!” <crickets> “At least give her my card!!” <crickets>

EXTRACREDIT-2Well, there goes his “Extra Credit” Points!!  …ha ha!…Can’t blame a Girl Gone Blind for tryin’!