Ready Or Not… I’m Comin’ Out!

Posted on January 12, 2014 by

29 Comments

Last year was filled with many doctors, tests, and a long-awaited answer.

I think it’s time I come out.

Come out and talk about my new reality. 

As Donna Summer put it — “I’m comin’ out. I want the world to know, got to let it show. There’s a new me coming out…” — with my new blog! 

Welcome to Girl Gone Blind!

Here is where I will write about my unexpected life. My life with Lebers Hereditary Optic Neuropathy. Lebers what???  Let’s just call it “LHON” from now on. That’s a lot easier!

I haven’t been legally blind for very long. I’m one of the new kids on the LHON  block. It’s so rare, you will not find many of us around. I was diagnosed with LHON on September 24, 2013. That was the day my life changed forever. I had never heard of LHON and knew nothing about it. As usual, I thought to myself, “Oh, I can handle this. Yep. I got this!”. I went right into the comfortable world of DENIAL! I love it there. I have control of everything, I don’t have to accept anything, and there is an all you can eat and drink wine and chocolate buffet. La la la la…This isn’t happening… la la la la la… I’m not listening…La la la la la…Where’s the wine?

I quickly learned that LHON had control of my vision. Denial was not working out so well. There was nothing I or anyone else could do about this disease. The vision loss was unstoppable, untreatable, and incurable. This was a Type A Control Freak’s nightmare. It was MY devastating nightmare. I did not, and still don’t, want to leave my sighted world! The only world I know. I had just turned 50 and I was confident, happy, healthy, and at the top of my game. Was this really how my life is going to go? Am I going to be legally blind for the rest of my life? As far as I know, yes. I’m still in disbelief.

What is LHON?

LHON is a rare inherited mitochondrial disease. The disease is carried as a mutation in the mitochondrial DNA. When that mutation is triggered, the cells of the optic nerves (behind the eye), die or become “sick” and don’t work. This causes sudden and severe central vision loss. You are then considered “affected” by LHON. I’m not going to go into the whole scientific description – there’s a lot to it. So, if you want to know more, grab your beverage of choice and click on the “About LHON” tab above.

She doesn’t look blind.

Some of you who see me all the time might think, “Hmm… She doesn’t look blind. Her eyes look the same, she doesn’t walk around with sunglasses, a white cane, or a guide dog. Is she really blind?” Ok, let me explain. Since April 2013, LHON has slowly taken away my central vision (the center area of my eyesight) from one eye and then the other. leaving me with fuzzy peripheral vision, unable to focus or see detail, no depth perception, and very little color recognition. My world is mostly black-and-white, and various shades of gray. Basically, it’s like looking through cloudy water or frosted glass, that has snowy “static” swirling around all the time. And, there is nothing in the center. Like a circular blank canvas. My vision tests show I’m currently something ridiculous like 2o/800 and down to counting fingers, and THAT, my friends is blind. Legally blind.

Do my glasses help?

Image is a black and white photo of me wearing glasses and holding a cup of coffee

Not really. And with my eyesight getting worse by the day, I don’t think their usefulness will last very long. Right now, they do help my peripheral vision a little bit. I’ll tell you one thing, they won’t help me see that eye chart on the wall at my doctor’s office! Those damn 20-something medical assistants keep asking me to cover one eye, look at the eye chart, and tell them which row of letters I can read. I’m like, “Oh, honey.  You’re kidding me, right?!? Doesn’t my chart say “legally blind” at this point?” For. The. Love! Those 10 minutes with the medical assistant is so upsetting and a horrible reminder of my new reality – every. time.

How did the name “Girl Gone Blind” come about?

During the creative development of this blog, I went through a billion names – and nothing felt quite right. The name had to be perfect. One that I would never have any doubts about. One night, the name “Girl Gone Blind” hit me like a ton of bricks. I knew immediately, that this was the one! It was short, catchy and well, fitting. I mean, I am a Girl who has Gone Blind. 

So, now what?

Chances are you don’t know any blind people. Hey, now you know me!  Chances are you don’t know what it’s like to experience life as I do now. That’s why I started this blog. I want to share with you the good, the bad, the funny, the strange, and the unexpected experiences in my blind girl life. LHON has not only taken much of my vision, it also took pieces of me as well. I hope to find my way back as I move forward, pick up the pieces, and write about this life that has begun.

Ready or not… I just came out, and this is ME living my unexpected life. xo ~ Maria

Category: Real TalkTags: , , , , , , , , , , , , , ,

29 Comments on “Ready Or Not… I’m Comin’ Out!”

  1. Maria– I am so proud of you for sharing your story. It will be great for you, for those who may go through the same thing, and for us to learn from and support you in this new dimension if your life. I have some ideas for you… But for now, I look forward to reading more. Thank you for your courage, spunk and sassiness, as you put it! Love and support — Jane (Janie!)

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  3. Nice going, Maria! The page looks great, and I’m looking forward to tagging along as you take this journey. Your strength will surely serve as an inspiration to others.

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  4. keep on truckin….we are all here for you….I think this blog will help all of us…Love you

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  6. Maria website and blog is great. You inspire me!! You’ve manage to take a tragic situation in your life and turn into a positive. Awesome!! You’ve taken “his” plan and ran with it. (Jeremiah 29:11)

    We Love you !

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  10. Hi Maria, I like your blog. I was very sorry to hear about your illness. When you made the announcement at the gym, Being Fit. I did not know whether to run to you and give you a big hug or just go home and pray for you. I decided to do the latter. I will give you a short story of myself. I had a stroke many years ago. The doctors recommended that I take birth control pills and it gave me a stroke three weeks later along with three seizures. I have a visual field cut on both sides of my eyes and I have short term memory loss. I go to a support group which meets 4x per week and take classes learning how to deal with my situation and life itself. I walk to the gym and I look forward to taking your classes. Sometimes you might be telling us to go to the right but my body wants to go to the left and sometimes my vision plays tricks on me. I am now on eye drops because the doctors think that I am a gycoma suspect. What I am basically telling you that life goes one. I go to church and joined the welcome committee. I use to take this disability bus service. They pick you up in front of your house and drop you off wherever you need to go to. One girl at the church told me I should take the regular bus. I thought she was crazy. I could barely see and my since of directions is not like it use to be. So now I am taking the regular bus. What I am trying to tell you is too keep the faith. God is in control. You already have a positive attitude and you are my inspiration. I was thinking that maybe you should join a support group. You can lead the class. You pump us up anyway. I hope that someone is able to read this to you and I hope that I see you again at the gym. Remember God is in control and he will help us with our situation.

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    • Thank you June!! Love “seeing” your smile in my class and thanks for the extra hugs last week! 🙂

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  11. OH MY GOSH! this is so wonderful… I am finally having a chance to read and plan on reading all 3 that are posted so far. I am in awe of you – your spunk, courage and YOUR FRIGGIN’ writing – it rocks! What was your nickname? From that show with Bruce Willis and that actress – was it Jessica Lange??

    Basically, you are the bomb – and I respect you so much!
    love ya, your witchy poo playing friend forever!
    kirby

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  12. Oh Maria, I am about to turn 50 years old and I have a lot of issues, but they are nothing compared with what you’re going through, yet you’re a warrior! I admired you! Thank you for sharing your story, you are a great inspiration.

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  13. Glad to see that your spirit has not been broken! Looking forward to tagging along with you on this crazy journey, albeit from long distance. Keep your chin up & know that I always have an ear to listen, a shoulder to lean on, & a helping hand if the need ever arises! XOXO.

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    • You are my hero. I look forward to your gym class. You are such a impressive lady. Keep the faith and remember, God will never leave nor forget you.

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Hello! Here is a little about me. I am a mom of two fantastic kids, group fitness instructor, transformational speaker, blogger, podcaster, and advocate in beautiful San Diego, CA. Oh, and as my website name would suggest, I am also legally blind. Yes, I’m a Girl Gone Blind — and I’m here to tell you all about it!

Link to donate to LHON organization