It’s not About the Game

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.

Glowy-DiceWell, 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!

dice-lady_mediumThese 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

Blind Girls can Rock Heels!

Screen Shot 2014-04-20 at 10.02.44 AM 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

The Plot Twist I Never Saw Coming

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…

Welcome to Holland | by Emily Perl Kingsley

Pink tulips ImageI 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.

 

She Doesn't Look Blind – She Must Be Drunk

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

That four letter word… C. A. N. E!

So, THAT four letter word has come up.

I had the “CANE” chat at my last doctor’s appointment. Of course, my mind started the fight immediately …. Hold UP! I don’t need a cane, I don’t want to carry a cane, I’m not THAT blind!  or am I?  To me, a white cane screams “Holy Shit…Maria must be really blind! Look, she’s got a (let’s whisper) C-A-N-E!” …Geeez…no thanks.

Before I became legally blind, my perception of  a blind person was just like many others. The blind have dark sunglasses, guide dogs, and white canes! They walk around with that cane, swinging it back and forth… whacking away at everything in front of them! No offense to the blind community, but that is the mental “picture” when you do not know anything about blind mobility. Just being honest here.

Now, I will rock a cute pair of sunglasses…. But, I just don’t know if I could bring myself to carry… a cane. I’m NOT supposed to have a white cane. I’m not ready for it. I’m ready to come out of denial about it, but I’m not ready to accept it either… Its a really weird place to be. Really. Weird.

At my appointment, my doctor turned my thinking around. He said, “Maria, the cane is not only for you. It’s also for other people.”. What the hell is he talking about, I thought.  He continued, “It’s a way to let other people know that they need to move around YOU. People will see they need to give you space because you have – the cane.”

Let me get this straight. The white cane = Watch out and be kind, because this girl is blind – Oh. Okay.

Hmmm. I didn’t look at it that way. Maybe I only have to carry it in certain situations for now. Baby steps right? Hmmm… I suppose it would take some of the stress off of family and friends who help me around. I’m sure there have been plenty of people who have given me the look of “WTH? Can’t you SEE I want to get by you?”  Good thing I can’t see that “look”… ‘cuz there would be some words & finger wagging going on!! Oh Gurrrl, hold my earrings, hold my cell phone!! Ha ha! 

After thinking about it for a couple weeks, I made the call. It wasn’t easy to talk about, but I did get the process started. O & M training will start soon. Yeah. Cane Training 101.

By helping myself, I am helping others to help me. Does that make sense?? I hope so. Trying to make sense of this unexpected life is all I can do, as a new….. Girl Gone Blind.

Welcome To The Storm… Holding On Tight As I Lose My Sight

Storms can be big or small. Storms can last for hours or days. I’m not talking about the weather here. I’m talking about emotional storms. The storms that occur in your mind.

In the eye of an emotional storm, there is no happiness or light. None. You never knew such a horrible place existed. A storm can begin and end at any time, and will totally screw with what was once a sane mind. I suspect some of you may relate to these stormy moments in your own way.

There is a place that runs deep. A place that is filled with fear, despair, anger, grief, turmoil, and tears. A place I don’t want to go, but, I become so weak in it’s grip. I feel mentally helpless as I move into that storm. It waits for me with open arms and says “Welcome back… I’ve been expecting you.” Do you know of this place? Have you ever been to this place? 

Some storms can be almost debilitating. It can make you feel physically ill as you wonder if you will have the strength you need to come out of it. Again. One more time.

I was on “storm watch” last week. I had an appt. with my Neuro-Ophthalmologist, Dr. Ken Kubis. I knew what he was going to tell me. I thought I was mentally prepared. Yeah….. Not so much. The routine tests, along with the Visual Field test (Ugh…every visually impaired person’s nightmare!) confirmed that my vision had declined quite dramatically since my last visit in December. I took a deep breath trying to shut up the frightened girl screaming inside my head.

Did I already know that my vision had gotten worse? Yes. Did I want to hear it from my doctor? No. Did I try to blame the testing equipment? Hell YES, I did!  …Just like you blame the dryer for your jeans being too tight! It’s called DENIAL!

After more discussion about the life & times of Maria’s vision… my doctor decided to repeat the MRIs and some blood tests to be sure there is nothing else causing my vision loss besides LHON. He has always told me “You are allowed to have more than one thing.” If I do… I trust he will find it. I have completely trusted Dr. Kubis from the day I first met him on September 2, 2013. The day he went to battle to save my vision and he has never stopped. Dr. Kubis is definitely one of the most outstanding and caring doctors I have ever had. The BEST!

When my appointments are over… I always thank my doctor a million times holding back the emotional tears. This time, as I stood there, I was overwhelmed by the fact that I could not “see” this amazing doctor as I did a few months ago. He has disappeared from my vision and I can’t see that reassuring smile anymore. My tears were the beginning of my next storm on the horizon. Dr. Kubis gave me a hug with some reassuring words. He didn’t have to but, THAT’S the kind of doctor he is. The BEST. I turned around and headed straight toward my storm. …Oh God … was this all really happening?

I used to fight off the storms with everything that I had. I was keeping control!! They were not going to bring me down! In reality, it was unhealthy and exhausting for me to act this way. I’m human, not a superhero.

I’m learning it’s okay to walk through these storms no matter how difficult or uncomfortable. Everyone should learn this lesson. Although they drag me into the darkness, I look for the light in the storm’s final hours. I hold on tight and I move forward in my life blinded by LHON. That is until….I hear the words “Welcome to the storm…” and lose my griponce again.

 

 

Tell Me Who You Are

Can you imagine walking around and not being able to see anyone’s face? Sounds a little bit like an episode of the Twilight Zone, right?  Well…as much as I wish it was a TV show… It’s not. It’s my reality. I can’t see people’s faces.

Wait… WHAT???  You don’t see people’s beautiful (or not so beautiful) faces??  No, I don’t. As I’ve lost my central vision, I’ve lost my ability to see people’s faces. Hey…That could be to your advantage if you look like total crap one day! I will never know!

Growing up we are taught to look people in the eyes when they are speaking to us or greeting them. It’s good social etiquette! If you don’t do it, people may think you’re rude, or Just don’t give a sh*t About the conversation. You need to get that social etiquette thing figured out!  When you focus in on someone’s face… You use your central vision. When I use my central vision to look at someone’s face, all I see is a cloudy gray area, not the face.  If someone is further away, they just disappear into that cloud of gray.

So, guess what? If I can’t see your beautiful face… I won’t recognize you! Even if I met you an hour ago, six months ago, or years ago, I will not recognize you. I can’t recognize my own family in a crowd. That’s the sad & scary truth.

Okay… Let me add in something right here. There are a couple of ways I can see your face. I can look at a super blown up picture on my computer. The other way is if you come very, very close to me and I look above your head… I can see you through my peripheral vision. I can map out your face. Eyes, nose, and mouth. It’s really blurry, but it’s better than nothing. So, if I look up while I’m talking to you, just go with it.  It’s what people with LHON need to do.

What can you do to help me feel more at ease? Come to me and tell me who you are. Use your words before you hug me, jump on me, or slap me on the ass, I, I, I mean, my back. And if I don’t know you, and you know I’m blind, please introduce yourself. Then I have an idea about who is around me. That keeps my anxiety from rearing its ugly head! And for the love of God… Don’t say “Hey, remember me?” OR “Guess who?” OR stand next to me and say nothing. Nope. Nope. Nope. I’m blind. You’re not. Just help a mutha out!!

So, if I don’t stop and say “Hello!”… Please don’t think I’m a bitch who’s totally rude. I’m just a blind girl trying to keep a positive attitude.

I wish I could see… the sparkle in your eyes, the warmth of your smile, and your facial expression that light and up the conversation.

I wish I could see… the smiles on my friends & family when they are standing next to me. 🙂  Do me a favor and just keep smiling for me. I want to feel your happy vibe as a… Girl Gone Blind. xx