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Living With Wolfram Syndrome – Lauren Gibilisco

Photo of Lauren GibiliscoI’ve had a few incidences lately due to not being able to see.

The first one was when we went to Olive Garden to eat.  When they took us to the table my mom told me it was a booth so I needed to scoot down.  So I kept scooting expecting to run into a wall but instead I almost sat right on this ladies lap that was beside me.  My mom forgot to tell me it was an open booth so there people on both sides of us.  Of course once again I was embarrassed and promptly told the lady that I was very, very sorry.  I told her I was blind and she said that’s ok, she was fine.

If I haven’t told you, I shred paper for our local telecommunication center.  Who better to do it than someone who can’t see what’s on the confidential papers.  So one day I went to get someone’s shredding and I couldn’t find it.  Usually they put it in front of me.  But this girl didn’t get up to put it in front of me and proceeded to tell me that it was over there.  I turned a few times and she kept saying over there, over there until I found it.  Once I got it I turned to her and said, “Were you pointing your finger?”  She said “yes, it’s just habit.”  Then they all started laughing because she knew that I couldn’t see.  It just a habit to point to people when they are looking for something forgetting a blind person can’t see them pointing.

I was always colorblind but now I can’t even see colors.  It is pretty much just light and dark but mostly dark.  I have trouble knowing if a light in the house is on or off during the day because of the sunlight coming through.  My mom and I went shopping and she ran into some really cute clothes that she thought my sister would like.  She turned to me and said “isn’t this cute?”  Of course she knew what she said but then she said sadly that I really wish you could see.  It’s just like a right of passage that a mother and daughter could go shopping together and have a fun time looking at clothes.  It doesn’t bother me much but it really bothers my mom.

My mom works hard during the week.  On the weekends she tries to get some projects done.  A couple of weekends ago she needed to paint the garage door.  Of course it was a very hot day. Temps were in the high 90’s.  I really wanted to help my mom out.  I like being able to do things for my mom.  So I asked her if I could help.  She struggled to find the right words to say to me. She said “I really wish you could but for one it’s too hot for you to be outside and that she really was worried I would get more paint on the driveway than on the door.” Lol.  She was probably right.  So I went back into the house feeling like a prisoner in my own home.