The Sounds
In the Spring of 2023:
I thought our heating was having some issues. I hear a distant rumble in the walls, and figured something must be up with our HVAC. After lots of determination, it turned out the sound was not coming from the house at all, but rather it seemed, from the fields over in Pine Island. Perhaps it was some farm equipment, rigging through the land.
One day this rumbling agricultural equipment was really loud. I could hear it well enough that I thought I’d be able to identify what this might really be! I walk outside down the road, and notice the sound coming directly to my left down the valley. I keep walking. I suspect it’ll start to sound directionally behind me, like I walked past it - but that doesn’t seem to be happening, oddly.
Feeling a little freaked out, I turn around and head back home.
I walk briskly back when i notice the low humming rumble is now up the hill. But it doesn’t add up. How could that be? It was obviously to my left down the valley. It can’t all be up the mountain now….to my left.
Panic. Something’s wrong. The hum is following me. Always on my left.
One day, I’d like to share more about this challenging time of learning and experiencing.
Now in 2025:
There is a lot of sound in my life. What started as a hum in my left ear has evolved into an encompassing environment of random ambient sounds. Since that time two years ago, it also began to affect my right ear as well.
One day, I’d like to share more about what it was like to experience what I call “profound tinnitus”. How the first year was full of beeps, boops, and hums.
Sometimes it’s a real cacophony. Sometimes it’s really beautiful. But what has become very obvious to me is that this cacophony of sound and hauntingly beautiful music is not coming from my ears whatsoever, but from my brain, as it tries to understand the signals from my demyelinating auditory nerves as best as it can.
In my family, our inherited CMT causes hearing loss via the disintegration of the myelin sheath of the auditory nerves (as they are peripheral nerves. Or said more simply: the nerves that send signals between my inner ear and brain are losing their protective coating over time. This causes my sense of hearing to become distorted and leads to the loss of certain frequencies over time: hearing loss.
