deaf · hard of hearing · hearing loss · Uncategorized

Deafness Pt. 1: My Deaf Story

On June 9th, 2011, I found out I was going deaf. I went to see an audiologist after a friend noticed that I was saying “what” a lot more than usual, and couldn’t understand her even after she repeated herself multiple times. It took a while for me to get my primary care physician (at the time) to refer me to an audiologist because he didn’t believe that I could be losing my hearing. I was, in fact, going deaf at 19 years old. The hearing loss in my left ear was mild to moderate, and my right ear was moderate. Take notice that I’m saying “was”. The audiologist I saw took a peek in my file, and found a hearing test I had done in that same facility when I was 10. She was shocked when she looked at it because it said that even then, I had hearing loss in my left ear and should have had a hearing aid. Right then and there, things started to piece together.

When I was little, I had to take speech therapy. My “r” were nonexistent, and my “th” came out sounding like “d”. At I got older, I had to ask people to repeat themselves often, and asked “what” a lot. By high school, I had trouble taking notes from lectures, I misses homework assignments that were said at the last minute, I couldn’t understand in noise, and I was having trouble in my music classes. In my first semester of college, I was kicked out from the music classes because I was doing so bad. I didn’t even realize it was all because of my hearing until that hearing test. I was so used to garbled, muffled noises. I was used to the ringing in my ears. I grew up with it, how was I supposed to know any different? Yes, I had that hearing test done when I was 10, but the audiologist that did the test never told me or my parents about the hearing loss.

The next step was to figure out if there was any reason why I was losing my hearing, and to get hearing aids. In high school, I had suspected Meniere’s Disease, but no one ever followed up with it. My audiologist told me that Meniere’s Disease can cause hearing loss, and because I was still having symptoms, I should get it checked out. I went to an ENT, they did some testing (ruling out of things), and the Meniere’s was confirmed. Now it was time to get hearing aids. Most insurances do not cover hearing aids because they are deemed “cosmetic”. I know, that’s completely ridiculous. At the time, I didn’t have health insurance that covered hearing aids. Since I needed them for school, I was able to get help though vocational rehabilitation. I wasn’t able to get my first appointment with them until November of that year. That December, I got my first pair of hearing aids.

About a year after learning about my hearing loss, I went back to the first ENT I saw because I was having some issues. He told me that the Cat Scan I had done the year prior showed that I have Enlarged Vestibular Aqueduct Syndrome (EVAS) in my left ear, my worse ear. When I asked him what it was, all he told me was “wear a helmet when riding a bike and Google it”. I haven’t gone back to see him. I still don’t know a whole lot about EVAS, I’ve learned that is a congenital condition, meaning I was born with it, which explains the hearing loss I had before I developed Meniere’s Disease and I also know that it means I’m more susceptible of losing the rest of the hearing in my left ear if I hit my head. There isn’t a whole lot of information known about EVAS and when people ask me what it is, all I can do is shrug.

The last time I had my hearing checked, it was sometime last year, my hearing loss was moderate to severe. I was having a good “hearing” day that day. Because of Meniere’s Disease and EVAS, my residual hearing fluctuates. It can even fluctuate hour by hour sometimes. There is also a chance that Ehlers-Danlos Syndrome is affecting my hearing, but I don’t think there is a way to know for sure. I’ve seen hard of hearing and deaf people who have lost their hearing due to EDS, some have had stable mild hearing loss, some are profoundly deaf, some have lost their hearing over time. With Meniere’s Disease, progressive hearing loss is pretty much inevitable. I’m not sure about EVAS. I never know if I’m going to wake up profoundly deaf or not. Sometimes I get really bad ringing in my ears and think “is this it?”. I’ve had times when I’ve put my perfectly working hearing aids in and have heard nothing, only for something to come back a few hours later. It can definitely be frustrating. I could wake up tomorrow permanently profoundly deaf. I don’t know when it will happen, or if it will happen, but the possibility will always be there until it happens.



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