Tag Archive for: hearing loss

, ,

Living With Wolfram Syndrome – Lauren Gibilisco

A couple of weeks ago I was asked if one thing could be healed on me, what would it be? I thought about it for a while and decided it would be my hearing. I asked my mom what she thought and she answered blindness of course. She couldn’t believe I said my hearing.

Photo of Lauren Gibilisco

Lauren Gibilisco

My hearing went before my blindness. But with the hearing I was able to get hearing aids that definitely helped me hear. Life went on and I slowly lost my vision. It wasn’t something that went at once so I was able to adapt. My cane instructor worked with me to listen for sounds in order to cross streets and even know where I was. So vision was directly affected by hearing.

Last week, my one hearing aid quit working and the other one had the ear mold fall off. This happened both at the same time. Suddenly I almost couldn’t hear anything. My mom called up our hearing doctor and asked if we could drop off my hearing aid that day and have them glue it back together. We had a hearing appointment scheduled for the next week but I couldn’t wait that long. It was right before Easter when all our relatives were coming to our house. They of course said they would be happy to do it for me. This is out of town for us, so my mom and me went out to lunch and then did some shopping to waste time until they called to say it was fixed.

Now just think about it. Here I was, not able to see anything, and now couldn’t hardly hear anything. My mom had to yell in my ear for me to hear. All of the sudden my vision became much worse because I did not have my hearing to help guide me. The dark became darker.

The following week I went to my hearing appointment. My hearing had been getting really bad and my mom made the appointment because she was tired of having to scream all the time. The good news is that the doctor said my hearing had decreased but not that much. It was my hearing aids that were shot. I needed a new pair. He also was telling us about the improvements in hearing aids since I had my other pair. He said they made them moisture proof so when I sweat in the summer it won’t affect them. He said I would be able to hear much better for the advancements but would still have difficulty understanding what was being said. It’s like I can’t tell if you said “pink or sink”. This makes me take time to understand what you are saying because here I am thinking you are talking about something being pink and you instead are talking about the sink. This takes the brain a little longer to catch up.

Now even though he said the understanding would still be a problem, there would be an improvement. I was happy to hear this. I talk with kids all over the world and understanding their accents is sometimes very difficult. I hope this will help me so I will be better able to connect with the world.

Now my mother understood why I would want my hearing fixed soon. I can get around pretty good with my cane and with my hearing I can do almost anything. After thinking it all through my mom had thought without being able to hear and see I would only have a few options. Would a cochlear implant help me or would we have to start learning sign language in the hand like Helen Keller did. My mom admitted it was more stressful to always having to repeat things than picking up something I bumped into and broke. Life is always amusing.

/by
, ,

Living With Wolfram Syndrome – Lauren Gibilisco

Photo of Lauren GibiliscoWell I managed to drive my mom nuts this week.  I have many items in my house that talk to me so I can function better.  But this week my watch stopped working. 

It was a talking watch.  Without it I have trouble knowing what time it is.  Time is important in our lives.  We need to know when to give shots or medicines. We need to know what time it is to eat or even what time it is to take a nap or go to bed. Our lives revolve around the clock.  So all throughout the day, I constantly asked my mom “what time is it?” It was a long week for her until my new watch arrived. 

When I went to my volunteer job this week I bumped into someone in an office.  It was someone else’s office so I didn’t know who it was.  That person said you still don’t have my voice memorized yet. She told me she was Barb.  When my parents owned their grocery store I had trouble always remembering voices especially because I have hearing loss.  I came up with an idea to always say hello and they would have a name made up that started with their first initial.  For example, Brianne would come up to me and say “hello Bambi.”  Well when I told Barb about that idea I told her to make up a word starting with “B”.  She said “I’m not going to call you that Lauren.” Everyone including myself burst out laughing.  I said “that didn’t occur to me.”  She said she would call me “beautiful” but I told her “brat” sounded more appropriate.  Going along with this theme, I was talking to a friend of my moms.  She asked if I was going to dress up for Halloween. I told her no.  She said “come on, you could dress like a princess and your mom could dress up like a witch.” I told her jokingly “she doesn’t need a costume for that.”

One of my mom’s friends hated thinking of me home alone in our house all the time.  I have no friends in this area.  So she decided that every other Friday she would come get me and we would go to lunch or dinner together.  She has known me since I was 5 years old.  I bet she thinks it is no big deal, she enjoys herself.  But to me it is a huge deal.  It gives me something to look forward to every other week.  It gets me out of the house.  It gives me someone other than my mom to talk to.  So look around, you may see someone who needs a little help.  You might think it was nothing but you might have made that person’s day a lot more happier.

/by