Chronic Illness Lifestyle

Adjusting to life without sound

At 17 I went from hearing to deaf within a couple of months, we still don’t why there was such an extreme decline so quickly or if with my form of nerve damage if cochlear implants will be an option in the future. I never would have imagined at the beginning of 2020 that by the end of the year I’d be adjusting to life with no sound. During my hearing loss I shared two posts on social media about what I was going through and how it was effecting me and my life. It’s really cool to look back on them, see how far I’ve come and how much has and had changed even between the two posts. So I thought I’d share them here as well as how I’m adjusting to life without sound. 

BECOMING HARD OF HEARING

I started taking sign language classes again this month.  This time feels so different through, last year I started as I was interested in becoming an interpreter. Now I’m the one who needs to be interpreted to. In a little over a month my hearing has from 75% to 23%. And the other ear having basically no hearing.

I’m now permanently hard of hearing, due to nerve damage from my EDS and recent head injury. That’s probably the most frustrating part is that my hearing itself is perfectly functional. It’s the nerves that are preventing me from hearing. I wasn’t too stressed at first as I just figured once I got hearing aids I’d be fine, but hearing  aids and other devices don’t work for me. I didn’t even know that was a possibility. 

I miss chatting with my Mum all the time, listening to my favourite songs and podcasts. In a way it feels like my only bit of freedom has been taken away as I can’t even make a call for myself anymore. But like everything in life I know I’ll learn to adapt, I love sign language and excited to learn more about deaf culture and this new world I’m in now. 

BECOMING DEAF

I couldn’t believe I was actually asking, that this was now a probable possibility. “Will I go deaf?” I had ro repeat myself as even getting those words out was difficult. I was waiting for her to shake her head and put my mind at ease. Instead I was told she believed i would eventually go deaf. 

It turns out she was right, today I was diagnosed as profoundly deaf. Something I still can’t wrap my head around. Its weird I can’t hear people any more, I walk around a once overwhelmingly loud shopping centre and there is nothing but silence. Going fo the beach is different now, still just as beautiful but I can’t hear the waves crashing against the shore any more. Calls of any kind have to be captioned, the same goes for tv and moves. Its literally like someone  has hit the mute button on my life. 

I’m grateful for my mum and friends, everyone has been so supportive and go above and beyond ro still include me. I’ve also made some new friends who understand this world and have helped me so much in adjusting and not feeling isolated by it. 

I still don’t know how ro feel right now, im just hoping this will get easier with time. 

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ADJUSTING TO LIFE WITHOUT SOUND

I still don’t know how to talk about what happened last year. It still doesn’t feel real, I was born hearing I’d spent my entire life in a world full of sound. And within a few months that was gone.  I’m trying to adjust,  trying to feel confident navigating this new world, trying not to be angry anymore because the only person that hurts is me and those I love.  Things weren’t great after I became deaf, I was so frustrated not being able to communicate. I’d yell and storm off when I couldn’t understand my mum, it took months for us to find a basic way to communicate. I feel really awful thinking back on how I treated her.

It’s really hard to watch someone you love talk and no longer be able to hear the sound of their voice, to have to look at a phone, a piece of paper or their hands to understand what their saying. I’ve felt really disconnected and isolated from the world, I don’t recognise the one I’m in. I have no sense of what’s around me, if I can’t see you I don’t know what’s happening. Which feels scary as I don’t have eyes at the back of my head, I only know a tiny portion of the world in front of me.

I miss music more than anything, it was my escape from the world and my own head. Now I’m stuck in silence with no escape from the thoughts ringing loudly inside my head. I never thought my speech would change, that completely blindsided me. Even though I’ve been speaking my whole life, it was as if my body forgot how to talk and pronounce words. I’m like a little kid missing their front teeth, words with S, T, H and F are my worst nightmare. My voice changed as well, which I didn’t know for a long time. It’s more monotoned now, everyone says I sound like a completely different person now.

Some days I feel like I’m getting the hang of it, feeling more confident advocating for myself and finding other ways to communicate out and about. Other days not so much, people get annoyed at me or ignore me completely and talk to my mum or PA because it’s easier. I never thought I’d understand sign language, let alone prefer using it over speaking. I’m still learning and it can be confusing at times as everyone signs slightly differently, just as everyone speaks slightly differently.

I had no idea how privileged I was to have hearing until I lost it, not just the ability itself. but the ease in accessing basic daily needs. Being able to pick up the phone and make a call, ask someone a question, accessing education and jobs. I’m grateful to have experienced both hearing and deafness as it helps me to understand both perspectives in situations. Such as the panic that strikes most once they realise I’m deaf, I remember when not that long ago I was in their shoes.

It’s funny how things change

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