Sarah’s story

I’m hard of hearing. I’ve got a connective tissue disorder, which means that my connective tissue is too lax, so all the bones in my ear move. The connective tissue doesn’t support them, so they damage my nerves. There’s also the neurological component, so my hearing can get temporarily worse when my body is not coping well. For example, if I’m upright too long or if I’ve been upright too long.

As a kid, I didn’t hear the lyrics of songs. I I thought people were going home and reading the lyrics. I didn’t know that they could hear them. Then, I’d go to discos and wonder how everyone’s singing along, having fun, and I felt like I was left out of the fun because I didn’t know the lyrics. That made me feel like I couldn’t dance and be free.

The neurological component of my hearing loss drives me insane. My brain confuses all the sounds, so there might be a bird chirping but I think it’s a dog barking or my mother might call out to me but I cannot recognize her voice; I don’t know it’s my mother, I think she’s a teenage boy. I never know what’s going to come next and I do not trust my hearing.

I remember visiting my mother one day about seven years ago. She was in the kitchen, which is at the back of the house, and she called out to me. Anybody would have heard it but I didn’t hear her. She thought that I was being rude. She thought I was deliberately ignoring her. So that caused an argument. People do not understand hearing loss and so both of us were confused thinking well, if I didn’t hear that at all, then why do I hear other things? She found it very difficult to believe me.

The day I got hearing aids, my mother was in the room with me. She said something and I heard her clearly. We were just in a very small room together and I don’t recall ever really hearing her that clearly. And she could speak softly, you know? She’s getting older. She does not have good energy levels so for her to have to speak loudly all the time, I always felt bad for her because that’s draining the little energy that she has. I was very happy to get the hearing aids to make it easier for her.

If I had known that hearing loss wasn’t just that you either hear everything or you hear nothing, if someone had told me that hearing loss is different for everybody at a class at school or something, things would’ve been much better. I would have felt more comfortable and gotten my hearing checked earlier. It would’ve prevented many arguments with my mother and years of not knowing what was going on or who to turn to. Just access to basic education, basic knowledge.