Monday, May 9, 2011

An Experience On Living With Usher Syndrome


After being diagnosed with Usher, I figured there are a few things I could do. 1- I could ignore it, and pretend that I don't have it.2- I could huddle up in a corner and let it run my life or let it take life away from me. or 3- Go on full tilt, find out all the information that I could and try to live a full and happy life.
So I picked option number 3. I never had a lot of issues with my eyes, other than the night blindness until I was 25. I know this because even though I couldn't see at night, I could still see the stars...and now I can't. And you don't really think something so little would be so bothersome...but it really is. I remember looking at the stars a lot as a kid at the campground, laying on the hill by the main office and chatting with friends. Now my wonderful husband-to-be will try to find the brightest one he can, and point it out to me, sometimes I see it, but most times I don't.
But growing older has also made me face other challenges. Such as getting a job...what do I tell me employer? Do I tell my employer? Do I do it in the interview like I do with me hearing aids or do I wait until I have been hired and have been there for a while before I let the cat of out the bag? And I know the answer will be different for every person that you ask. Personally, I wait until I have been hired and proven that I can do the job effectively before I say anything...and maybe thats the wrong thing to do...I don't know....but it works for me.

But you also run into people that don't believe that an eye condition such as Ushers is real. And I wish I could say that I was joking, but I am not.

I am a huge New Kids on the Block fan. Have been since I was a little girl. I lived and breathed them. Had the bed sheets, books, dolls, CD's, you name it and I more than likely had it. I had some friends tease me when I was older because I still listened to their music. and on a Band/Choir trip to New York in high school I brought along their cassettes to listen to on the bus. So when they got back together after 15+ years, to say I was super pumped is understatement! So when I found out they were going to play in Calgary I nearly peed my pants with excitement and got tickets right away! I got 3 tickets, and brought along 2 ladies that I work with. One of them was super cool about the Usher, she knew all about it, and had even been a guide for me a few times that we had gone out, while the other one, who I didn't know all too well at the time, quite honestly was a bitch about it and did not believe that I had a see-and-eye cane and she honestly thought I was bullshitting her on Usher Syndrome and didn't think it was real, she also didn't think I needed to take my cane. To say it pissed me off is an understatement. So on the day of the concert I printed off a sheet saying what Usher was and grabbed my 'stick' (what I call my cane) and was off to see the loves of my life for the first time, and I was determined not to let her small mindedness bother me, and I also decided to have a little fun. Because she was embarrassed to be seen with someone with a white cane and was walking in front of me and my other friend as if she didn't know us, I would hit her in the heels with the cane 'accidentally.' some people may say that that was not the right thing to do, but to me it felt good, and she learned her lesson pretty fast and started to hang out with us, and I enjoyed my NKOTB concert and had the best time ever!

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