Tuesday, May 29, 2007

My Vision

Each person with RP has a different rate and degree of vision at any given time-even between siblings. My brother's vision isn't the same as mine. My oldest sister's vision is better than mine. She still does some limited driving; my brother and I do not.

Sometimes people ask me to describe what I see. It's not that easy. I have described it in a number of previous posts.

I have several websites that simulate vision for various types of vision loss. I disagree with the black ring, because for me, the "blind spot" is not black, but a void. A nothingness. It's not there. I would put my arms out in front of me and slowly pull them back laterally (to the sides).

When my hands move into the gap in my peripheral vision, it disappears. I know my hand is there (muscle sense), but I can't see it. It's gone. If I move my hands back in front of me, it pops back in view. It's like, now I see it: now I don't. (Muscle sense: Old post)

Here is a picture demonstrating what RP vision is like for me, but you'd have to picture that "plastic-looking" ring as a void or invisible space. It has no color. This is the closest I could find.

My night vision is similar to this once my eyes adjust to the darkness. I can just make out something I am looking at, but nothing at all around me.

both pictures from Ohio Lions website

I move on with my life and then all of a sudden, I realize I don't see as well as I did a year or so ago. I have already adjusted to it subconciously without knowing it.

As I have stated in earlier posts, I do a lot of scanning to see. I move my eyes side to side and down a lot. I don't really worry about what's above me because rarely is there anything above me except for a tree branch or a hanging wind chime or something.

Here are other websites to look at:

The Vision and Eyes

Through Our Eyes

Vision Simulator

Vision Impairments

Lighthouse International

See What I See

I had a website that mimicked the lightning flashes that circle in an arc inside my eyes, but it (the website) moved and I cannot find it. It was a pretty good demonstration of the way they circled around and around and suddenly disappeared, only to be replaced by another light flash that would follow the same path. If I find it again, I will be sure to post it here.



At Tue May 29, 10:41:00 PM , Anonymous Anonymous said...

Molly here: Yep we got the same thing..... I know you mention Foundation Fighting Blindness but check website www.blindness.org They are working on Phase II/III. Not a cure. Send donation to FFB; P.O.Box 17279; Baltimore, MD 21297-0495 they are having "Walk" fundraisers too. LOL I am not chairperson or on any committee anywhere. Just passing info and encouragement!!!!! Just gotta find a cure in our lifetime!!!!

At Wed May 30, 01:07:00 AM , Blogger Jocelyn said...

I know it sounds lame to say, "Thanks for sharing," but in the deepest sense of that sentiment, I do mean it. Thank you for giving me a sense of your view of the world. This is a gift to me.

At Wed May 30, 05:33:00 PM , Blogger Shari said...

Molly, I heard about the clinical trials. I think they are starting it this summer. Maybe someday, I will see if I can get a fundraiser going and participate in the VisionWalk. The closest one would be Chicago. Yes, I am praying for a cure in our lifetime.

Jocelyn, this is why I started this blog. I needed get the word out in my own way. It's been so therapuetic. Last summer I hit a new low and was so deep in a funk over having Usher Syndrome. I usually always tried to ignore it, but then I gave up driving and that was when I hit a new low. It was so easy to push it away and pretend I was "normal." I could accept my hearing loss. I was used to it. I would gladly go totally deaf if I could keep my eyesight. I am happy to share my experiences with Usher so that others can empathize with it. Keep praying for a cure.

At Wed May 30, 09:06:00 PM , Anonymous Anonymous said...

Molly again: You need to talk to more people with cochlear implants if the audiologist says you are a candidate. Even tho, I had 39 yrs w/successful hearing aids then sudden deafness. I got my hearing back and more. It felt like a facelift. Less stress. Sure I had to relearn some sounds. It is worth it. Did Helen Keller say something about deafness, you lose people.? I am not looking forward to this vision loss either. But hearing as well as I do, my life is easier. How many people are going to help you with tactual language? Always have to request an interpreter..... The general hearing public still do NOT understand hearing loss and vision loss....... I am going through an up and down moods too. Glad I have my convention trip to look forward too. Your family can keep you busy. LOL

At Wed May 30, 10:35:00 PM , Blogger G said...

Shari, I am so honored that you stopped at my blog so that I could in turn come here and learn something new today.

It's a wonderful thing that you are able to share it with others so that we can learn as well. I pray for a cure for you and your family members in your lifetime.

Best to you.

At Wed May 30, 11:00:00 PM , Blogger Breazy said...

I would like to echo the others and thank you for sharing this with us. I had never even heard of RP until reading your blog for the first time.

I hope all is going well with you this week!

At Wed May 30, 11:35:00 PM , Blogger Shari said...


I don't know if I am a candidate. My audie just gave me info about it to check into it. Yeah, I think Helen Keller said she'd rather have her hearing than her eyesight. But the vision loss is late onset and hearing loss I have lived with all my life, though it has declined over the years, so it's more bearable. Cochlear implantation is the closest thing to a "cure" for deafness. Hope they find something like that to cure RP.

G, I am glad that my story can touch other lives. I love to read books and when I do, I empathize with the main character. I thought blogging about Usher would help others feel it, too. I am glad you find it a learning experience.

Breazy, yes, RP is not as well-known as MS or even Cystic Fibrosis. It is a rare eye disorder, though I know that there are many of us.


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