Blinded by the Light
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....
Labels: RP/Usher Syndrome
15 Comments:
Oh Shari, Would you believe I had trouble this Thanksgiving. Five of us at my friends' house. Every room had different levels of light. I was walking slowly, well very carefully every where. I did not want to be in the way. We girls were in the kitchen. I did not help out. Five people was enough.... Yeah need to be gutsy and even switch seats to avoid staring at the light. Really people do not mind moving. At HLAA Conventions, we go out to dinner. As people are sitting, they say, " sit on this side, it is my better ear.!!!" It is funny but nice to be among HOH friends. Also, some would have tiny microphone sitting in the middle of the table. They are attachment to either hearing aids or cochlear implants. You just get use to it, wanting to see or/and hear better. Honest , there are some nice people willing to help. Yep yep yep, I understand. HUGS, Molly CC
I also suffer from photophobia. But its somewhat better than before.
i wear dark glasses in the sun.anything with a glare I can 't stand...I have to dull the TV and computer screen.
A kitchen with too many people is dangerous for us with Usher. That I understand, too. :) Have to start making noises like trucks do when they go backwards. LOL. An accident waiting to happen. I remember reading about a group of Usher people getting together in a restuarant. They had rented a room at a restuarant and requested that the blinds be down and the lights be brighter.
Amrita-It's funny with my eyes. Though I can't look into bright lights, I still need enough light to see as long as it's not into my eyes.
Responding to your comments Shari !!!! The five of us, it was 2 guys. 3 of us women in the kitchen. Still difficult for me. I would've love to met the group that reserved a room in a well lit restaurant. That is cool...... 1995, had an Usher gal & hubby from GA, come to Tampa for a FFB meeting. We met for dinner. They arrived earlier, to pick a table with good light. Later she realized of course I would pick a restaurant with good light. LOL. !!!!! Again people do not mind switching seats, especially when I tell them I want to see & hear them better. Otherwise I appear as if I don't care or snobby. HUGS, Molly CC
Shari, thanks for your visits during this tough time. Just wanted to drop in and say that and hello.
I so appreciate reading your posts as they are rich in perspective. On asking people to move - I am sure that you would never appear rude and your companions would only be too happy to comply. Don't be afraid to ask - people want to be able to help.
Best to you.
Molly-I know. I am such a doormat most of the time. When I ate out with my FIL and his girlfriend, they were okay with it-that I wanted my back to the window. The view from the window though, was beautiful (a river). ;) I think that this group was part of a DB group in CT or MA. They had some kind of convention.
G-Thanks. I get intimidated easily. It has something to do with being the youngest in a large family. I never really knew how to speak up for myself. I felt like I was always being judged. I am a lot better in some ways, but I still carry those feelings of insecurity.
Shari, I thought about this and wanted to acknowledge that part, which I totally glazed over. I am the 7th of 10 children so I know a bit about what you speak. It's a hard thing for us to often "ask" for things, but I've learned that my quietly being offended about something was often a product of my not letting the other person know. Conditioning is tough, I know. I so know what you mean. But you're a tough woman based on what you contend with daily so don't sell yourself short on that front.
Force your way through those insecurities. As someone once told me and I sometimes say in my head "fake it til you make it." In many ways, I think that I've finally made it, but old insecurities die hard. Anyway, didn't want to blather on but I wanted to acknowledge that aspect of yourself which I saw that you shared several posts back (I think).
Have a great day Shari.
G-Thanks for understanding. I do try to speak out sometimes. Key word here: sometimes. :) Like I said, I am getting there. It's not always easy. Talk about the "inner child"-we carry so much with us.
I also used to find it difficult to speak up, more cos when I was small I always wanted to be the 'good girl'. But now I've kind of gotten over that.
Shari, it saddens me that you would feel okay about depriving yourself of being as fully part of any gathering, or being out with family/friends...
There is certainly nothing wrong with asking for what you need. You aren't asking for special treatment or just because you want something for yourself. And it isn't even being rude. It's just asking, in a nice way if you could have this and say why.
There is no shame in having a disability and there is no shame in asking for what you need. If the other person won't meet your need, then that is their problem and they must live with it.
I hope you will consciously decide in future to always ask for what you need. I think you will be pleasantly surprised to find the others are more than happy and willing to accommodate.
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Hillgrandmom-Good for you. Totally understand the "good girl" thing. My dad was a real male chauvinist and so I got that "gender role" thing going on, too. Hubby's cooking more and making his own lunches now, so I'm getting there. ;)
Sherry-I worry too much about what people think and feel so self-conscious. Sometimes I can tell which people are more willing to accomommodate me than others. Especially those who really know what exactly the condition I have and how it affects me. Half the time I really can't understand the conversation and when I do (though the FM system helps a little, it only amphlifies the voice(s)-not add voice comprehension), they've moved on to another topic and I embarrass myself. One good thing is that I don't always eat out with a large group of people. That's when it gets hard to "ask".:)
I have tremendous trouble adjusting to dimness after the glare of sunlight too. And would you believe it , I still have trouble speaking out - worrying about what the other person will think . Talk about being a wimp ..sigh.
Hey Shari! I am trying to make my rounds through my blog roll since it has been a while.
You take care!
Shari, I am so glad you found my blog and led me to yours! My 7 year old has severe photophobia and uses tinted glasses indoors at times. I so understand your struggle and the learning to speak up. This is probably the hardest to teach my children as I was never one to speak up while growing up; just preferred not to make waves. Yet I find it easier to speak up for them, which does teach them.
Now on to read your next post! I am definitely hooked on your each word, as you express all so well.
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