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 

16 Comments on “Tell Me Who You Are

    • Thank you LouAm…. You are a very sweet and treasured friend. 🙂 I appreciate you stopping by and leaving a comment on my blog. Love you bunches!!

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    • Maria,

      You are so courageous as you walk through this. Your weakness is other’s strength and you are helping all the time.
      Love, Janet

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      • Thank you Janet! I really do hope that by helping myself through my own weakness, That I am helping others through their weakness. For the blind or four friends and family of the blind… We are all in this together. This has been a rough road… But I keep on walking! 🙂 XOXO

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    • Thank you Mrs. Barnum…. Yes, I still have to call you that! 🙂 Glad you like my blog. Hugs to you!

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  1. I was diagnosed 5 yrs ago. I am now almost 66. We’re all in the same boat – no faces for 5 yrs, worst of all I can’t see my granddaughters’ faces, let alone my own.

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    • Hi John…. Even though we are at different stages of our life, We are in the same boat together! I don’t think it will ever be easy to accept the fact that we cannot see our children or grandchildren’s faces. Even on the computer, I cannot get a clear picture with my eyesight. But it’s better then nothing. Other people with LHON tell me that we all get used to it…. And I’m sure we do. I guess we don’t have a choice. Thanks for reading my blog. All the best to you! 🙂

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  2. Hi Maria,

    What a great therapeutic outlet your blog is! I know it’s rough going but I always said you’re 1 in a million (or 50,000 who’s counting). You’ve got our support and we’ll catch you later at the next party!

    Hugs,
    Rickie

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    • Thank you Ricky!
      Blogging has been a great outlet for me so far. It does help A little. Thanks for taking the time to read some of it! You are so sweet and a treasure part of my myfamily! XO

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  3. Hi Maria,

    I have been following your traumatic change in life through Lee – she and I are the best of friends, in addition to the fact that she is my auntie! I am so impressed with your progress and your writing and your sense of humor. It must be so out of the realm of what you ever imagined for your life, and my heart goes out to you and all you are doing to maintain a life for yourself and your famiy.

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    • Hi Barbara…
      Thank you for your kind words and thoughts. This has been very difficult to say the least for me and my family. Adjusting and rehabilitating my life to live blind has been overwhelming. I am doing my best to cope day today as my vision declines. I try to remember to take it one day at a time. That is not always easy either. The blog has been really great for me and I will continue to do it as part of my new path in life! Thank you so much for your love! Hugs!!

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  4. Keep up the great work. Enjoy reading your blogs. See you at the conference in June

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  5. I read this when James was newly diagnosed but re-reading it reminds me of how difficult social interaction must be for James. We do ask him what he can or cannot see but he usually just says we will never understand. It is frustrating for him but I am being selfish now by saying that we get worn down with cleaning up and still nagging at him to do things for himself. He has a long way to go yet. I love him but he wasn’t the easiest before all this and I have two other children to look after as well. Sorry to vent, all the best to you and your family xoxo

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