They didn’t go anywhere…. In fact, I see many of them everyday. There IS something different about them. There IS something different about me. The difference is that I’m legally blind and their faces do not exist in my world anymore. The onset of Lebers Hereditary Optic Neuropathy (LHON) is usually sudden. You don’t really get the chance to understand or even process what (or who) you will be missing due to vision loss.
Maybe it doesn’t look like it bothers me on the outside, because I can hide the stress, anxiety, and fear of it all pretty well. But, unless you become blind, unexpectedly, you will never know the pain and heartache of sudden vision loss.
I miss facial expressions so much. The “looks” of happiness, excitement, laughter, and sadness have disappeared. I miss eye contact and non-verbal communication. I miss visual connection and interaction. My “gift of sight” was stolen by LHON, leaving feelings of disconnection, isolation, and deep sadness left in its place. And trust me, those feelings can rear their ugly little heads when you least expect it.
I know I can look at grainy, blurry photos of the people in my life blown up as big as the sun on my computer or CCTV… but, guess what? it’s. NOT. the. same! Please don’t start with the “at least you can see something.” crapola! That doesn’t help in those moments of loss. Magnification is my hero and I really am grateful for it. The “assistive technology” devices will never replace the personal visual connection I no longer have with my family and friends…. Because,You can’t replace a face.
~ On September 24, 2013, I entered into the world of LHON. Two years ago today, I was finally diagnosed by a mitochondrial DNA test and LHON became a household word. Over the following month, I slowly became legally blind and my family and friend’s faces slowly vanished. I will continue to “see” people for their heart and soul, it is what it is, that’s all I know.
Oh Maria. Grieving the loss of so much. Our faces have gone away from your vision but our hearts have never left you…. And you can’t see those hearts either!
None of us can guess how much going blind stinks! I love you .Lee
Thank you Lee…. yes, going blind will always stink!! But, I will say that I can “see” people’s hearts & spirits clearer than I ever have before. It can be incredibly revealing….
I am so sorry Maria. I know that I do not know how it feels, but I really really wish this did not happen to you. I know that you are missing out on so many memories and that would kill me, not being able to capture those moments. You are really making an effort to work with this and it is a bitch. I hope that one day somebody will find a solution to fix this so you can see those happy faces again. I miss your class and maybe one day we will meet up again. Take care Maria, Always here if you need me.
Thank you so much Lucy! Your words are so kind and I really appreciate your support from afar! You had such a great heart. Your strength comes through on Facebook and I admire that! You will always be in my class in spirit! Hugs to you! XO
Words escape me….
You are and have always been a champion over the last two years of those who are dealing with LOHN
You have been..,,openly and honesty talking about your world and the changes…,with great care and support….in an effort to help others
You are an inspiration to all
Please keep the posts going
Thanks so much Jim! I appreciate your kind words and support. My blog serves many purposes… And one of them is to reach out to the world and bring awareness of this disease. The fact that it also helps others in the LHON community is an absolute gift to me. I truly couldn’t get through this without the support from you, friends, and family. Hugs!
My son was affected 7 years ago aged 17 and broke my family’s hearts, LHON was totally unknown to our family before. I totally understand where you are coming from and I know my son will but it’s not talked about by us. We were lucky that we had a quick diagnosis in 3 months of first noticing something was wrong. We hope and pray that a cure will be found.
Best wishes to you and your family for the future.
Thank you for reading my blog! My hope is that it does help people understand what us affected folks deal with, Both mentally and physically. I was also the first one in my family to become affected and In a weird kind of way, I consider it a gift to the family. NOW we know about it, and my sister and our kids can do whatever it takes to keep the mitochondria happy!! I hope your son is doing well. I’m sure it’s been rough and you have had to find superstrength through the years! Stay strong! xo
Maria- another great blog post! You are so inspirational and the world needs people like you to ignight the light in all of us. Thank you for sharing!
Thank you dear friend! You have been there for me from the beginning and if I’ve told you once… I’ll tell you again… you mean the world to me! Thank you for supporting and sharing my blog and my unexpected life! XO
that must f’ng suck! Maria – you are truly amazing to always write with love, wit and humor… GO GGB!
love you, kirb
Thanks for all your encouragement! Love you! I
My son was affected at a very early age. Started in kindergarten and finally diagnosed in 3rd grade. I never thought about this part of LHON until recently. my son now 14 struggling is finally speaking out about things and brought this up recently. Thank you so much for sharing that vision loss isn’t just the loss of sight but so much more.
You are welcome Kass! So appreciate you reading my blog. I am glad it could help give you some insight into living with LHON. My heart goes out to you as a mom. I can’t even imagine what you go through watching your child adjust to vision loss through the years. He was so young. I truly hope he is doing well and finds the fun in being a teenager! Feel free to contact me at anytime! xo
Just read this. It is so much what hurts me. That and having to get my grandson hand me his toy cars so i can look closely at it. It’s awful watching little man play while i sit on the sofa and the world is so blurred i can’t see the toy cars or my grandson (except as a big blur). Thankfully i can look through the camera on my phone to see what little man is doing
Reading this particular blog…really made me think. I see you a few times a week, I’ve been there from the beginning & forever!!
But I think I’ve forgotten the things you’re missing out on, little to me, huge to you now. I hope you know, I’ll always there for you, to let you know if it looks good on you or not, to let you know where that wine glass is 😁, to be there when the sun is shining or the clouds are grey.
I love you Girlfriend 💖
I am just seeing this comment and I am all choked up. You have been such an incredible friend for as long as I’ve known you. Through the thick and thin…You are always ready to listen or lend a hand. There are no words to express how thankful I am for you and your friendship. Love you girl!! xo