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Sunday, 26 October 2014 01:00

Diagnosis: Usher Syndrome

Written by  Jill Clarke
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“Jillian, can you see in the dark?”
“Oh.  Are you supposed to?”
This was my response to my eye doctor at a routine checkup in high school.  It was the summer, I just turned 17 and was going in grade 11.
 My older sister Michelle had complained to our eye doctor that she was finding night time driving a challenge and was wondering why.  Which prompted his question to me when it was my turn.
I don’t remember anything more from that eye appointment.  I do remember hearing Usher Syndrome mentioned, night blindness, sight loss…but at 17, I didn’t care.  I’d never even heard of this “Usher Syndrome”.  Who the hell is that? 
What the hell is it? 
Why are we being tested for it? 
Why do we have to go to the IWK to be tested?
Keep in mind this was early 2000 and all I wanted for my “back to school outfit” were these orange pants...because orange pants are styling right? (Do you think I could ever find a shirt to match these things??)
Anyways we (as in both parents and all 3 of us kids) piled into our car and off we went to Halifax – for what I would find out to be a very uncomfortable day. 
I’d never had my eyes dilated before, and I wish I had been prepared.  
They figured out John (my brother) was fine early on in the testing so he didn’t have to do everything.  The lucky shit.
Michelle and I, not so much.  It felt like we were there all day, but at the end (FINALLY!!  I NEED to get those orange pants!) They pulled us all into the specialist office and she told my parents that both girls have Usher Syndrome.
I remember one parent asking when it would affect us, what we should expect.  The doctor told my parents that we would be fine until we were in our 40’s to our 60’s.  
My sister went was legally blind at 30.
Won’t affect them until they’re in their 40’s to their 60’s?
 
I think about that day once in a while, and how they sent us out of that office without a CLUE at what was happening to us.  No understanding of what Usher Syndrome was, what to expect…N.O.T.H.I.N.G.
 
I really feel my saving grace was my resource teacher Mrs. Burns.  In the high school I attended, there were a ‘large’ amount of deaf kids.  There was a special resource room for us where we could get extra help, have a quiet place to study and store those fun Phonic Ear Systems.
Mrs. Burns encouraged me to do my own research, projects and googling on Usher Syndrome.  She would help with explain those big ass words and terms. I even learned another deaf student had Usher type 1 and I learned a lot from watching and talking with her.  We even did a science project on the eye and how it worked and how Usher Syndrome made it not work and we got a damn good mark on that.  But after learning all this information I then would go home and explain it to my sister and whoever else would be interested or who I felt should be interested.
I also learned that Usher Syndrome was one of the reasons why I really sucked at hide-and-go-seek.
 
My ‘research’ got bumped up a notch when there was an incident at my first job.
 
I’ll tell you about that next time.
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