I don’t remember exactly how old I was. 17 I think. Music was my entire life. I was in Jazz Band, Concert Choir, Madrigals, and in whatever spare time I could come up with I had a rock band with two of my friends.
I do remember exactly how I realized. It was late at night and I was going to bed. I would usually listen to music when I went to sleep, but I shared a room with my little brother. He had gone to bed much earlier, so I grabbed my cd player, put on my headphones and turned on OK Computer.
The first track, Airbag, begins with a riff played by guitar on one side and cello on the other, but there was no guitar. I assumed my headphones were broken; there was a short in the cable or something. In the process of trying to figure that out, I switched them around–and there was guitar with no cello. What followed was a frantic switch back and forth, repeating the beginning of the song so I could be sure. Eventually I had to accept it wasn’t the headphones.
After that things are kind of a blur. Around this same time I had been having some issues with my jaw locking up, and we thought they might be related. I saw a doctor who specialized in TMJ and related cases; that went nowhere. Then an ENT, who gave me all the hearing tests and finally a CT scan. He told me there was a cyst in my sinus that was interfering with the nerve, but it would be more risk than it was worth to remove it.
So I tried acupuncture. Sometimes I imagined it was working and maybe my hearing was coming back, even a little bit. If I was really honest with myself about it though, there wasn’t ever any significant change. For the next several years, that was it. A few select frequency ranges would make my ears ring, but other than that–nothing.
There weren’t any other options around at that point, so I just learned to adapt. I could still do my music, even if it was a little more difficult. As long as I positioned myself well I could participate in conversations. It was just something I had to live with.
Fast forward about 5 years, and I went through a time when I was getting a LOT of headaches. By now I was married–to a nurse–and my wife sent me to get it checked out again. Another ENT, the same hearing tests and CT. This time, though, he said the cyst theory was not realistic. There is a small cyst in the maxillary sinus, but it isn’t even close to the nerves, and besides, he thought the whole idea was pretty far fetched to begin with. My hearing loss is just a mystery.
Fast forward about 11 more years. I had been living with SSD for about 18 years at this point, and adapted pretty well. Then one day I noticed some voices sounded distorted, like the sound of the voices over the radios in the Star Wars trench run. Songs on the radio seemed out of tune. Coincidentally, the strongest example was a cello that sounded like it was going through a pitch shift effect.
Another ENT, the same tests, and, so far, the same results. But now my right ear is also having some difficulty. Conversations sound like I’m listening from the other room, some sounds seem so loud they are painful, while others don’t really register at all. There’s a sound like when you put a sea shell to your ear, that is sometimes so loud I can’t focus on anything.
I decided to create this site so other people with hearing loss will know they aren’t the only ones. I also hope that the people around them can read my experiences and better understand what we are going through. Plus I wanted to get it all off my chest.