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!
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.
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!
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
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!
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!
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.
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!
I 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.
Maybe 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.
“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!
She 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>
A year ago…..I was on vacation with my family taking in the happy and fun of Disneyland. I had no idea I was losing my vision. I didn’t know what LHON was or that it even existed. What a difference a year can make.
I recently returned from participating in the annual LHON Symposium held with the UMDF Conference in Pittsburgh. It was a fantastic experience that gave me the opportunity to meet others just like me! Others unexpectedly affected by LHON.
The symposium was great in so many ways! In fact, the whole trip was a really great experience! …. First time traveling blind….. Two words: airplane bathrooms. Holy blind girl! Those were fun! Anyway…. I’m not going to give you every crazy detail of the trip. I mean, I could….. but, we would be here all night!
Speaking and moderating 2 panels at the symposium was awesome!! It went really well and all the panelists did a fabulous job sharing their LHON journeys. I loved being a part of this day. Sharing my journey and talking about this blog was a THRILL! Being up in front of a group is very comfortable and fun for me. Surprised? C’mon… I do my “Live with Maria” thing every week as a fitness instructor! My friends know how I do!
There were many other speakers, doctors, and scientists who spoke on topics important to the LHON community. From the latest research to psychology to fundraising. Funding is always needed for research…… and I plan to jump on the fundraising train real soon!
The BEST part of the trip was meeting and connecting with all those who made it to Pittsburgh, whether you are affected, a carrier, or just someone who supports a loved one…. Pittsburg was the place to be! I had talked to many of you on the phone in prior weeks and meeting you in person was like finding a long lost sibling! There was an immediate bond between everyone! We all spoke the same language and asked the same questions. We laughed and swapped stories every minute we could. It was amazing to be around people who really understood.
Getting involved and creating these new “unexpected” friendships is essential to my well-being. The LHON connections are priceless! Looking forward to Virginia/Washington DC in June 2015! Get connected and plan to go!
A year ago…..The last thing on my mind was “What would I do if I became blind?” Well…I guess I would write a blog called……. Girl Gone Blind. What a difference a year can make.
I just got a gift from a dear friend. It’s a beautiful silver bracelet with a charm that has a little letter “B” on it. What does that “B” stand for? … No…NOT the B word that rhymes with ”witch”! Sheeesh!
She knew I was going to speak at the UMDF/ LHON Program & Symposium this week and thought I could wear it to remind myself to always be “Brave”!
There will be other people speaking about their LHON journeys on several panels that I will be moderating throughout the day. Exciting! I have talked to all of them on the phone and I can’t wait to meet everyone! We come from different backgrounds, we come from different places, and we have different lives living with something we all share. LHON. When you or a loved one is given this unexpected life….”B” is for Brave.
“B is for brave. It’s about welcoming the blind turn and possibility that there’s no such thing as coincidence, and that empathy is incredibly sexy, and that its never too late to pick up a guitar or a paintbrush or make an amend or to make a new friend. Love this life, ‘cuz it could go away any second.”
Thank you for your 14 years of friendship Julia Kitts! x0 I love the bracelet and the message that came with it. I appreciate my family & friend’s support in getting ready for this trip! … Okay, enough GGB blogging…. I gotta finish pack-a-lackin’ for Pittsburgh! Woo Hoo!
I never thought I would have one of these hanging blue handicap thingies. Well shit. I never thought I would be blind either!
When the idea of getting a handicap placard came up… I wanted NOTHING to do with it! I’m not handicapped! I can get out of a car without help, I can walk (carefully), I don’t use a wheelchair, or a walker. C’mon… I teach weekly group fitness classes, I’m healthy, I’m FINE! I’m not handicapped! I’m just kinda, sorta visually impaired. Sounds like more “control” issues Maria! Helloooo …..You have LHON. You don’t see very well! It’s a disability. It’s a handicap. It sucks.
All those reasons weren’t reeeally why I didn’t want to apply for a handicap placard. The REAL reason was that I did not want to be told I had to surrender my driver’s license. Believe it or not, this GGB still has a valid drivers license! If the DMV gets the application for a placard, they will know I am legally blind. If I am legally blind, why do I still have a DRIVERS license? …..get where this is going?
IT’S MINE! <arms crossed – pouty face> The drivers license I’ve had for 34 years. The license that has a halfway decent picture on it! We have all had that one picture that looks like you just saw your grandma naked! Oh snap! The license that I show when I get carded! ….Carded. Really Maria? Shhhhyahh…that happens all the time! Ok…. sometimes! Ha ha! THAT license is mine. <more pouty face> I just wasn’t ready.
Giving up driving to LHON was hard enough, and the thought of surrendering my license was like giving up a piece of me. A piece of my old life. I don’t want an “ID card”. I want a license like everyone else my age!! But, I’m not like everyone else anymore.…… I’m affected by LHON. Total game changer!
WAIT…HOLD UP! IYou know what? I may not be like all my friends & family anymore….. But, I am still a “Front Row Diva!” My fitness friends know what that means! If I’m not teaching in front of the class, I’m in the front f*cking row!! Shocking, I know! Can you say “EXTROVERT”!
So, I finally realized that having the hanging blue handicap thingy would help the wonderful people who drive me all over town. We can park closer to the store or gym…. front row, front row….. with less worry about helping me walk around parking lots and cars. Better for everyone!
I received my blue handicap placard in the mail this week. I also STILL have my drivers license! I didn’t have to surrender it! The DMV never notified me about it. Maybe my record now states “If this blind bitch is ever caught driving, she is in a shit load of trouble!”
It takes time for me to acknowledge the realities of my unexpected life. Not everyone is going to understand how hard that is. You probably won’t know…. unless you are visually impaired or legally blind. It’s beyond hard! When I am ready to handle it…I am ready. No sooner. Sooooo, let’s be safe and park it in the front row!
Now that I have it, don’t be fightin’ over who’s gonna be drivin’ with the….Girl Gone Blind!