My ears are broken! Wtf!?!

In addition to losing control of my hands and feet, I experienced a strange change in my hearing. On my way to the ambulance, I heard a loud pop, and suddenly, it felt as if someone had turned down the volume on life itself. The progression of symptoms went like this: first, I could no longer stand up; then my hearing became distorted; and finally, I lost the use of my hands. I didn’t even know what to think.

When I was in the emergency room, my hearing was erratic. Sometimes I could hear, and other times everything was muffled and unclear. By the time I was admitted to a regular room, I was exhausted. They moved me from the stretcher to the bed, and I gratefully fell asleep. When I woke up, I could barely hear anything.

I wasn’t completely deaf; I could hear sounds, but I couldn’t make out what they were. When I finally saw an ENT doctor, he confirmed that my hearing was seriously compromised—I was lacking clarity. He was the first person who really helped me understand and articulate what I was experiencing. People around me would make noise, and I’d respond, but I had no idea what that noise was. Throughout my hospitalization, some people doubted whether I could hear or thought I was playing some sort of game. It was incredibly frustrating because I desperately wanted to hear clearly. Until I saw the ENT doctor, I didn’t even have the vocabulary to explain what was happening.

I’ve since learned that the brain damage I suffered affected my feet first, then my hearing, and finally my hands. I have other random symptoms, but these are the big three. They tell me that as my brain heals, my hearing should return to normal. At first, I was skeptical, but now that I’ve been hospitalized for over a year, I can recognize some improvement.

As time has passed, I’ve regained a fair amount of my hearing. I got hearing aids, but they didn’t help my brain unscramble the sounds I was hearing. I could hear noises better, but I still couldn’t understand what those noises were, so I put the hearing aids aside. The audiologist told me that I had a choice, and she and her boss agreed with the ENT doctor: if I continued to recover in other areas, like with my hands and feet, I would likely regain my hearing as well.

It broke my heart not to be able to hear. I was trying to be a champion in physical therapy—putting one foot in front of the other, doing my hand exercises, trying to learn how to write again—and I’m still working through all of that. But I often sit in my wheelchair, thinking how beautiful it would be to listen to some of my favorite music, work on my plants, or do my stretches with music playing in the background. For me, music is life.

My hearing has gone through so many changes over the past year. At first, I couldn’t hear much at all, not even my own voice. My family and the staff had to use a whiteboard to communicate, and we had conversations that way. I got really good at reading lips, along with the little bit that I could hear. Then I started to hear music a little, but it’s really wacky the way I hear it now. It’s like something is missing from the songs. For guitar-heavy music, which is my favorite, I can’t hear the lead guitar—I can hear the rhythm section pretty well, though. There are certain singers whose voices I can’t hear at all; my hearing seems to cut out at a certain tone or pitch, whatever it’s called. The same goes for hearing people talk. Some folks have voices with a rich tone that I can hear clearly, but others with softer voices are harder for me to understand, even with my lip-reading skills.

Right now, my hearing has adjusted again, and now it sounds like everyone is talking too close to a microphone. A couple of months ago, people sounded like they were coming through an AM radio station. Now I need people to back away from the microphone and not talk so loudly, lol! Even listening to myself dictate this blog post is getting on my nerves because it sounds like I’m on a microphone to myself. It’s really wild.

Which brings me to thinking about brain damage and how the brain heals. The current theory is that I had some condition that caused brain damage, leading to the loss of use in my hands, legs, feet, and hearing. I still have muscle strength and can hear some things, but with my hands and feet, I lack sensation, and with my hearing, I lack clarity. I imagine that the signals in my brain are misfiring or not connecting properly yet. It’s very frustrating to be a year into this and not have healed further. It’s also sad to think that this might be it—the pinnacle of my healing. I’m trying to make the best of it, but it’s going to take me a while to accept that this might be all there is.