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Tuesday, 11 November 2014 00:00

What is Usher Syndrome to Me?

Written by  Clare Weigel
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What does Ushers Syndrome mean? That was the very question I had asked myself when the doctors told me I had lost some of my eyesight and that I would very slowly continue to lose more. I didn't think they were telling the truth at first. How can you live your life and not know that you are are somewhat blind? My name is Clare Weigel, I'm from across the pond in Florida and I am 17 years old. I had the pleasure of going to the Boston Ushers Syndrome Coalition over the summer where I learned I was not alone. 
Before I found out, I had no idea that this had been slowly happening over the years and caused my deafness also. This all began with a routine eye doctors appointment. The doctors saw something wrong with my retina and I was sent to a couple of other places until the place where I had a full day of long, tiresome tests that included one with flashings lights in a pitch-black room for over two hours and many more. The irony is, that as I went through all of this, was that I thought they weren't going to find anything wrong.
After the tests were completed, I was in shock when they first told me, no tears nothing. Then they said it was illegal for me to drive, then all of my emotions came flooding out, whatever little independence I had, was gone. I had lost all of my peripheral vision and night vision, but still maintained good central vision. But I would slowly lose more. 
After, I kept it to myself, worried that people were going to treat me differently, like I was handicapped. Which in reality, I was. I had tripped over backpacks in the hallways at school, run into people since I couldn't see them, and stumble around hopelessly at night since the disease also took away my night vision. People think I'm rude if I can't see them if they're right in my blind spots. I often wonder if I should really tell them the truth. This is one of the "hidden disabilities", it's not always noticed that I'm deaf. Now I was categorized with the "blind" people as well. 
For months, I would think about it and wonder why had God given me more problems? It was already challenging to be deaf but to be deafblind?  I already had problems of my own, I didn't need this. Then, I began to tell my closest friends and I was amazed. They were nothing but helpful and kind about all of this! They guided me at night, listened while I ranted about the unfairness of it all, and they were there for me. Now, I know that people are genuinely good at heart if you are willing to give them a chance. 
When I was on a choir trip with my school to Jamaica last spring, we were singing to people who had less than us and they had pure joy in their hearts. I wondered if I could be as joyful as they about my disease? Then we went out one night as a break from singing, we were on a catamaran boat. We left in the late afternoon and as we were out on the blue waters, I realized the sky was getting dark. I was slightly panicking because there weren't any lights at all on the boat or the dock (which we had to cross over another boat to get to) then I realized I needed to ask for help. I absolutely hate asking for help! However, I asked a friend of mine who was more than kind enough! I learned a big lesson from that trip, I need to be happy with Ushers and know it is perfectly okay to ask for help.
I am a cheerleader for my high school and often, I have difficulty hearing the counts/calls for cheers and seeing the girls next to me at football games. But it's a challenge which I am willing to take on and love doing! 
At the Ushers Syndrome Coalition, I met so many wonderful people who inspired me to think of Ushers in a positive way and its just a part of our identity. I met Molly at the family dinner and I was so excited just because she was British! Then as I talked to her, I had a realization that I needed to pull it together and get over the fact that I was deafblind. 
There are still moments where I wish I could be able to do some things that my friends get to do since a lot of it is usually in dark and loud places. But I've learned over the years that I'm not really missing much. 
What is Ushers Syndrome? It's not a disease, it's just a part of me.
What does Ushers Syndrome mean? That was the very question I had asked myself when the doctors told me I had lost some of my eyesight and that I would very slowly continue to lose more. I didn't think they were telling the truth at first. How can you live your life and not know that you are are somewhat blind? My name is Clare Weigel, I'm from across the pond in Florida and I am 17 years old. I had the pleasure of going to the Boston Ushers Syndrome Coalition over the summer where I learned I was not alone. 
Before I found out, I had no idea that this had been slowly happening over the years and caused my deafness also. This all began with a routine eye doctors appointment. The doctors saw something wrong with my retina and I was sent to a couple of other places until the place where I had a full day of long, tiresome tests that included one with flashings lights in a pitch-black room for over two hours and many more. The irony is, that as I went through all of this, was that I thought they weren't going to find anything wrong.
After the tests were completed, I was in shock when they first told me, no tears nothing. Then they said it was illegal for me to drive, then all of my emotions came flooding out, whatever little independence I had, was gone. I had lost all of my peripheral vision and night vision, but still maintained good central vision. But I would slowly lose more. 
After, I kept it to myself, worried that people were going to treat me differently, like I was handicapped. Which in reality, I was. I had tripped over backpacks in the hallways at school, run into people since I couldn't see them, and stumble around hopelessly at night since the disease also took away my night vision. People think I'm rude if I can't see them if they're right in my blind spots. I often wonder if I should really tell them the truth. This is one of the "hidden disabilities", it's not always noticed that I'm deaf. Now I was categorized with the "blind" people as well. 
For months, I would think about it and wonder why had God given me more problems? It was already challenging to be deaf but to be deafblind?  I already had problems of my own, I didn't need this. Then, I began to tell my closest friends and I was amazed. They were nothing but helpful and kind about all of this! They guided me at night, listened while I ranted about the unfairness of it all, and they were there for me. Now, I know that people are genuinely good at heart if you are willing to give them a chance. 
When I was on a choir trip with my school to Jamaica last spring, we were singing to people who had less than us and they had pure joy in their hearts. I wondered if I could be as joyful as they about my disease? Then we went out one night as a break from singing, we were on a catamaran boat. We left in the late afternoon and as we were out on the blue waters, I realized the sky was getting dark. I was slightly panicking because there weren't any lights at all on the boat or the dock (which we had to cross over another boat to get to) then I realized I needed to ask for help. I absolutely hate asking for help! However, I asked a friend of mine who was more than kind enough! I learned a big lesson from that trip, I need to be happy with Ushers and know it is perfectly okay to ask for help.
I am a cheerleader for my high school and often, I have difficulty hearing the counts/calls for cheers and seeing the girls next to me at football games. But it's a challenge which I am willing to take on and love doing! 
At the Ushers Syndrome Coalition, I met so many wonderful people who inspired me to think of Ushers in a positive way and its just a part of our identity. I met Molly at the family dinner and I was so excited just because she was British! Then as I talked to her, I had a realization that I needed to pull it together and get over the fact that I was deafblind. 
There are still moments where I wish I could be able to do some things that my friends get to do since a lot of it is usually in dark and loud places. But I've learned over the years that I'm not really missing much. 
What is Ushers Syndrome? It's not a disease, it's just a part of my life. If I had the chance to reverse it, I wouldn't do it. Because it has taught me so many things that I wouldn't know about life.f my life. If I had the chance to reverse it, I wouldn't do it. Because it ha
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