Where is the joy?

il_570xN.345648626Have 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!

speed_bumps_kill_earthThinking 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? 

jumping-for-joyLet 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

find-joy-in-your-journey-1024x808-1

The Show Must Go On For This Band Mom

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?

Image: A photo of me holding and iPad up to my face as I view the marching band on the field through the camera.
WATCHING THE PERFORMANCE

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!

Image: The marching band as seen thru my iPad
MY BLURRY VIEW

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!  

Halloween Fun & Friendship

A photo of My two girlfriends, Ursula and Robin, and myself, Dressed up as the "three blind mice". We were a hit!!!

 

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! 

PHoto of d myTwo girlfriends, Ursula and Robin, and myself dressed up in sunglasses, mouse ears, Whiskers, and Laughing holding white canes.
Three Blind Mice!

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!

 

It was NOT on the List!

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.

10407776_10202862602950696_2479356079753710815_nThere 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!

unnamed-9I’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!

 

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!