Finding Pieces Of My Life A Year After Vision Loss

 

Image of A decorated birthday cakeTODAY is my birthday.

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!

Image of a Wooden lost and found signPieces of My life That were lost Because of LHON 

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. 

Pieces of My life That were found because of LHON

Image of me Walking with my O & M trainer 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! 

Image of Pink Girl gone blind logo

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 

 

8 Comments on “Finding Pieces Of My Life A Year After Vision Loss

  1. No whipped cream shit four you!! ❤️ the new post. Saw the plug for me!!! Thank you and you’re welcome!

    Like

  2. HAPPY BIRTHDAY MY FRIEND!!!
    I remember…it must have been at least 6 months or more planning that 50th birthday party…you were like a “woman on a mission” & you pulled it off!! Now it’s time for your 51st birthday & next year your 52nd birthday…you get what I’m saying. I’m so grateful to have you in my life as my friend, my Bunco gal pal, my shoulder to cry on. Thank you & happy birthday!! Did you decide where we’re going??

    Like

  3. WOW…….WHAT A STUPENDOUS BLOG TO DAY………I LOVE YOUR COMMMENT THAT BAD DAYS ALWAYS END AND
    GOOD DAYS ALWAYS BEGIN.
    a VERY INSPIRING AND HEART RENDING BLOG……..THANK YOU MARIA..YOU SAY IT ALL SO BEAUTIFULLY

    LOVE YOU,
    ERIN BARNUM

    Like

  4. Happy Birthday Maria, you are definetly a strong Leo woman. You inspire me, you touch all my emotions and I am so moved by how you put it all out there. I cannot even imagine the roller coaster of emotions, the frank reality that you have had to face and yet you turned it into a positive way to move through it educating us along the way.
    I am sure this is by far the toughest journey of your life and they say the true character of a person is revealed on how they handle the hard times, so to me you are as close to a saint on earth as can be.
    God bless you and your family and just know how much everyone cares and is inspired by your courage in the face of adversity.
    Sending you much much love. HAPPY BIRTHDAY…………………..

    Like

  5. Awesome birthday blog Maria! You are amazing and I love having you as my sister! Love, Ellen

    Like

  6. Happy birthday girlfriend. And on this day, although I wish it could be a LOT more, we made a donation to LHON. I will put it on my calendar to do this every year on behalf of you Chris, Bryce, and Molly. You are family! I hope you had a wonderful day!!

    Thank you for your generous support of the LHON Project Fund!

    The following summarizes your contribution:
    Payment Amount: $20.00
    Reference ID: 169789724

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: