Blinded by the Light

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When I am facing a window during the day, it compromises what I can see. Not only do I suffer from nyctalopia (night blindness), I also suffer from photophobia (light sensitivity).

If a person is sitting with his/her back to a window, all I see is a dark silhouette of the person. I try to tell people that I can't see anything when I have to look at them with the light in the background. It just strains my eyes. I would rather be the one sitting with my back to the window or a lamp. Once in awhile I am brave and I would tell the person to trade places or I would hope to "beat" that person to the seat by the window. It would help if the blinds were down. Sometimes that's not possible, like in a restaurant, eating out with family and friends.

I don't know what's worst-eating out during the day when the sun's shining through the windows (instant whiteout) or at night when the restaurant dims all their lights to make it "romantic". I can't win.

I won't make a big issue out of it. I am always quiet when I go out anyway. Too much background noise-other patron's voices, maybe music, clinking of glasses and forks, waitstaff asking if everything is okay, etc. Sometimes when I am comfortable with the person I am with, I'll ask that I have my back to the window. Otherwise I just can't look in that direction without getting that "whiteout" and seeing dark shapes that are people.

Maybe it's not just me and others with RP/Usher Syndrome or any other eye disorder. Maybe everyone prefers to have their back to the window because, he/she also gets eye strain. Or maybe because they want to look around the restuarant.

I know it's about speaking out, but sometimes you just don't want to seem rude. In the meantime, I'll just have to see what specialized low vision sunglasses that have anti-glare properties there are and which ones I could wear indoors. I can't wear just any pair of sunglasses; if it's dark, I can't see through them-the nightblindness thing kicks in. That's whole different topic....

Do You See What I See...

Glitter Graphics

....do you hear what I hear?....


glitter-graphics.com

We all have a different story to tell because the varying degrees of deafness and vision loss among those of us with Usher Syndrome. It isn't the same-even with all the different Usher types (Type 1, 2, and 3-and probably even a Type 4). It is not the same within family members, either.

My brother and sister have different levels of hearing and vision loss. Our progression of vision loss isn't the same. My hearing loss is much worse than theirs are.

I have had online contact with many others with Usher Syndrome. It makes us one big "family". I learn from them and don't feel as alone in my thoughts and frustrations. It's so easy to share our feelings because we are/have been going through the same things. Some of them both amaze and inspire me.

Many went to college, got a degree, and raised a family. Many found out about the vision loss as a child, a teenager, or an adult. No matter what age you find out that you have an incurable degenerative eye disease, you are devastated. Then you just go day to day. That's all there is to it. You just "do". This is the same with any condition. You just "do".

There's a documentary called Silence with a Touch that gives you some insight to what it is like living with Usher Syndrome. If you are interested, maybe there is one at a library near you.

Happy _________

I received this in an email this morning. This describes what's happening to me now. I have been the go-to for remembering birthdays and anniversaries. Marking them on calendars is a must, though I have to look at the calendar for it to help remind me. (I need something to remind me to look at the calendar to remind me about a birthday or anniversary.) Homework deadlines and due dates crowd out those dates. Well, that's my excuse, and I'm sticking to it. ;)

Due to increasing age,

forgetfulness,

and my decreasing ability

to send cards on time,

here is my card to cover every Holiday ...

Happy Everything!!!!

Outta the Mouths of Babes

There was a magazine I was reading that have these little cute quips about “Things Kids Say”. It's just amusing how the minds of kids work.

I made a trip down memory lane.

Wisconsinites are well-known as beer-guzzling die-hard fans.

My husband and I have sweatshirts and T-shirts with the Packers and Badgers. I wear a lot of these sweatshirts all the time. When my youngest was about 2 ½ years old, she learned to recognize the letter “W” on my sweatshirt for Wisconsin Badgers. It was so cool. I was happy that she was starting to learn the letters of the alphabet at her age.

One day my husband was watching TV. I mentioned how she knew the letter “W.” But neither of us was wearing a Badger shirt at the time so I couldn't use a shirt to prove it to him. I asked my oldest daughter to get one of the wooden blocks with the “W” on it. She gave me the block. I asked the little tyke what I had in my hand.

She looked at me and then looked at the block and said in a very serious, matter-of-fact tone, “A block.”

My husband just roared. We all did. The little stinker was happy to be the center of attention, especially when it's funny.

After we recovered, I repeated, “What letter is this?”

“W.”

There. But the moment passed.

Every time I think about that moment, I smile. It’s one of the perks of parenting. I should have written down all of the funny things that they did over the years. You think that you will remember them, but you don't. Other things crowd out that memory until it is pushed further and further into the back door of your brain, possibly lost forever. I do wish I knew about blogging when they were toddlers.

Colors of Friendship

I received The Colors of Friendship award from Amrita. She says this of her nominees:


"They color my life with the beautiful hues of friendship. Although we come from different backgrounds and cultures we share the same spirit of friendship."


I couldn't have said it better. We are a spectrum of color, diverse in our customs and upbringings, but we are human with the same feelings. We are all united in some way and not so different if you think about how we love our families...we feel the same things. The Internet has brought people closer together somehow...the world doesn't seem so huge and untouchable.


Thank you so much, Amrita. :)


There aren't any rules as to how many people can be nominated for this award that I can see. I would like to pass on this award to:

Hillgrandmom of Life on a Hill

Mrs Grumpy of I Promise Not to Laugh During the Seance'

Beth of BooksETC

Kila of Mom to 3 Cubs

G of Simply Said

Sara of Reasons to be Cheerful

Jennifer of A Work in Process

Breazy of A Breazy Life

Karma of JewBu Quest