Have you heard the phrase ”The joy is in the Journey”? I heard it the other day, and my first thought was… I don’t get it. My next thought was… Where is the “joy” in my journey? How do I find the “joy” in learning to live with unexpected vision loss?
Okay, Let’s get into this one. What is “the journey”? I’m not talking about a road trip across the country or a weight loss program, Those are journeys you choose to go on. I’m talking about the journey that is a process, a reinvention of sorts, that you did not choose to go on. The kind of journey that begins with your world collapsing and the universe screaming, “Surprise! Here’s your new life and it starts now! What ‘cha gonna do with it!” ….Weight,Whaat? Holy shit! …I know! That’s exactly what I said when I was surprised with LHON!
Thinking back on 2014, learning to live with LHON was….well, I wouldn’t say it was overflowing with “joy”. So, Where is there joy in the transition from a sighted to a blind way of life? Where? Then, I heard one of my long-time mentors say “Getting through the difficulties and over the speed bumps are accomplishments we should be excited about!” Wow, lightbulb moment! Right?
Let me see if I understand this… if adjusting to LHON was a breeze with no tears or tizzy fits, I would be missing out on important pieces of the journey. The extra struggles, and difficulties is stuff you and I can’t miss. Why? Becuuzzz the feelings of “Joy” comes from our accomplishments, friendships, and personal growth that occur during the crazy hot mess moments! We need to acknowledge that feeling of joy!! It’s ours! Ohhhh yeah…That is some good “jump for joy” kind of shit right there! Someone said “Every single difficulty that we get through is an investment in your own personal development.” Did you hear that? That is so true and I couldn’t agree more!
Okay…Now I get it! The “joy” is what you receive from investing in your personal journey. The feelings of joy may be hard to find and acknowledge…… Joy is not always obvious amongst the struggles. ~ Just keep looking…. No eyesight required!
IA note to all my readers ~
I wish you all a Happy and Healthy 2015, and hope you discover and accept the joys of any journey life gives you! XO
This is my 7th year as a high school “Band Mom”. I have supported and watched my kids practice, perform, and compete countless times in our school’s award-winning marching band. This year, because of my vision loss, I hear the music and see nothing a fog on the field. No kids, no formations or snazzy visuals. I can sense from the music, it’s another ahh-mazing show! I’ve seen enough field shows to know, a fantastic show will grab your attention musically and visually!! The music part I got. So, how do I get me some visual?
I use the camera on the iPad and I zoom in on the field. It’s not perfect, and it’s probably blurry…like that matters! What matters is that I’m there and can “see” the kids performing out on the field! …I could easily choose to be sitting at home pouting with a package of Oreos…double stuff! *credit to my son who took this photo unbeknownst to me at the time.
I suspect some people around me think “Why the hell does she have that iPad all up in her face like that?” … Oh, because I love the feel of the burn in my arms as I hold the iPad up to my face for long periods of time! Yeah THAT’S why! Ha ha! Okay, I know I don’t look different, but my vision IS. This is my “different” way of watching a performance that I have always enjoyed. That blurry view is as good as it’s gonna get, and I’ll TAKE IT!! ...If you bring me a Starbucks coffee, I’ll take that too!
I am thankful for assistive technology and I will admit sometimes I feel self-conscious using it in public. After watching my daughter and her high school marching band perform last weekend, through my iPad, I said to my son “God, people must think that I looked kinda weird.” My son said “Mom, when you got up to leave and pulled out your cane, I’m sure it made sense to everyone.” …. Yeah, oookay. …. Damn, another win for the white cane!
I don’t normally put a lot of thought into dressing up for Halloween activities. I may throw together my “80s aerobics instructor” to teach a fitness class IF it happens to land on Halloween. But, if I have a really creative costume idea… I just might have to give it a go! …… and I’m not talking “Sgt. Slut” or “Naughty night nurse”…… Good lord, that’s another website!
I had to dress up for the annual Halloween Bunco Night and I thought “what can I pull together that’s easy for a blind girl?” Hmmmm…I GOT IT! I called my best girlfriends and told them about it. I was hoping they would do it with me. There was no hesitation…they were both in!
We wore all black, threw on ears, sunglasses, whiskers, and rocked our white canes!! THREE BLIND MICE! Fantastic! right?!? So, as blind mice might do, we got lost on the way over to the party. My sweet sighted girlfriends couldn’t recognize any of the streets we were driving on, and of course, I was no help in this hot mouse mess! By the time we got there, we had to park a couple blocks away. We strolled down the middle of the street, with canes in hand, yelling at each other about how late we were and that one of us should’ve known how to get there!! We must have looked like three crazy bitches wielding white weapons to anyone who saw us! Seriously! Anyway…when we walked into the party, our friends went nuts! Everybody erupted with screams, shrieks and laughter! WE WERE A HIT! Yep…Fantastic! Just like I said!
I LOVE, LOVE, LOVE that my friends, Robin and Ursula, were willing to do this with me! I can count on them for anything. If you can’t count on your friends to be crazy blind mice with you, then WHO can you count on?
Happy Halloween Friends!
Have you gone shopping and ended up with 2, 3, or 10 other things in your cart that were NOT on your list? You know….things you don’t need, but, haaaave to have! What?!? You’ve never done that? Bullshit. yes. you. have.
Since losing much of myvision, shopping really isn’t that enjoyable. I can’t “see” those “super-amazing-it’s-a-good-price-gotta-have-now” items anymore. That used to be half the fun! But, when something is more than meets the eye….. You need to step aside, I’m checkin’ that shit out!
The husby and I were in Costco and I said “Oh no… the Vitamix guy is here again… I can hear him!”. Okay, how many times have you walked by that demonstration and said to yourself “I don’t need one and yet silently wishing you had one of those magical machines. Like 57 times! Right!?
Well, we walk by and stop to listen. Interesting. First mistake. We watch and taste the samples. Delicious. Second mistake. Being visually impaired, I was curious about any complicated buttons, switches, combination locks, or secret handshakes that I would have to do to get it to work. There was none. We were quite surprised at the simplicity. No. No. No. Damn IT! Third mistake.
There is now a bright red Vitamix sitting on my kitchen counter! AND after my first attempt to use it…I now know there is an actual “on/off switch that I was unaware of… good to f*cking know…THAT should help prevent another blind girl tantrum in the kitchen. Yeah. it was ugly. I’m really excited about this “not on the shopping list” purchase! I suspect that a Vitamix could be a blind girl’s (or boy’s) BBF! Best Blender Forever! It comes with tons of healthy recipes or just throw whatever shit you want in there and press the button! If you’re blind, it doesn’t matter what the concoction looks like…. Just f*cking drink it! Easy!
I’m sure it will pay for itself with years…many years… let’s go with, a LIFETIME of good health and happiness for… Girl Gone Blind.
BIG THANKS to my husby for buying this magical machine! I know it was NOT on the list!
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….
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?……”.
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
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!
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.