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