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!
For the last 10 years, I have gotten together with a group of gals once a month. We eat, drink, and roll. We play Bunco. Not to be confused with “Stop, drop, and roll” ‘cuz your ass is on fi-yah! OK, that might describe a few of the nights we have played! More margaritas ladies? Shhhure! Hey, it happens to the best of us! Ha ha!
Anywhoooo…. We all look forward to that night…but, it’s really not to play the game anymore. It’s a night for laughter, catching up, and friendship.
Through the stages of my vision loss, I will admit there were times that I did not want to go. Sure I can eat and drink, but it was hard for me to play, hard to see the dice, and to keep up the laughter. I was uncomfortable trying to be “me” for the sake of the party.
It was Bunco night the evening I got the call from my doctor and was told I tested positive for LHON. The call came just minutes before I was picked up to go. I went…maybe a little in shock. I knew nothing about LHON, except that there was no cure. I didn’t tell my friends that I just got a diagnosis on my vision loss that night. The diagnosis that took 7 months to figure out. I did tell them that I could not read the dice anymore. Little did I know that reading dice was the LEAST of my LHON worries…Little did I know about the unexpected Life I had ahead of me.
I didn’t know if I would stay in the group. I felt like I was playing, but I was not participating. I felt like a Bunco burden.
Well, my fabulous friends did not leave me by the wayside! Every effort is made to help me participate in a different way. They surprised me with new visually impaired dice…. which unfortunately only worked for a short time. When we play, someone at the table reads the dice for me. They tell me to keep rolling, stop, if I got 3 of a kind, snake eyes, or a BUNCO!! They mark my scorecard and I never have to keep the table score! …I was never very good at scorekeeping. You have to pay attention and crap like that! I’m usually too busy talking… surprise, surprise…HA! Anyway, it all works!
I played Bunco last week. I ate, drank, and rolled. I laughed, caught up, and shared some GGB humor. Oh, and get this… I WON the big money! ME! The girl who can’t see the dice finishes with the most “buncos”! Well, that’s what they told me…BOOM! Starbucks is back in business! Ha ha!
These women have been a big support to me in many ways. When I was unsure about my place in the group, they said “You’re stayin’ and playin’!” My girls didn’t leave me behind. Good friends stay by your side and with some help, I’m still rollin’ as a…Girl Gone Blind.
*This blog is dedicated to my beautiful Bunco ladies…also known as”The Real Housewives of Mira Mesa”! Thank you for your friendships XO
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