When your ear doesn’t work like it used to before

 

Today is International Day of Persons with Disabilities. A day of celebration but also a reminder of the struggles we face. I thought this would be a great opportunity to share my story.

 

No one knows for definite when or why I lost my hearing. Medical notes suggest it was congenital but family and I refuse to believe this. There were no signs I was deaf from birth. I met all my milestones. I was able to read before I went to school. People noticed things changed overnight. I wasn’t responding to speech/sounds as normal. This occurred around the time I had my MMR jab and shortly following this I had measles. Not long after, I failed hearing tests and required hearing aids to hear sound. I was diagnosed with bilateral sensorineural hearing loss. Since then I have been profoundly deaf - without hearing aids/cochlear implant I can’t hear anything except really low pitch sounds such as an airplane, motorbike. But even that is faint and muffled. So hearing aids I what I grew up with and I was in my own little bubble not realising how much I was missing out on. I couldn’t really socialise at mainstream school as it’s a noisy environment and no one really understood. It was when I was university that I started to realise just how much I missed out on. People say the social aspect and uni life was their best years. For me, it was something I couldn’t wait to be over. I never went out for socials, I struggled to understand in lectures so I made the decision to study from home. I managed to graduate with a 2:1. I struggled so much that this lead to the decision to receive a cochlear implant in February 2012. It was the unknown, it may not work but it was something I HAD to do for me. After surgery and switch on, 6 months of constant hard work with rehab, things finally fell into place. I had access to more sounds and speech was a lot clearer. I was able to understand some speech without lipreading which was incredible. Don’t get me wrong, I still needed to lipread the majority of the time but it took some pressure off me and it was less tiring. I was able to do my job independent, delivering PE to primary schools with no additional help. The cochlear implant was so powerful that I didn’t need to wear my hearing aid in my other ear. I was even able to have a conversation on the phone with my mum.

 

Fast forward to 2019. Following an incident (that I can’t go into at the moment), something changed in my left ear to the point where I was struggling to understand speech, I was even having to ask my mum to repeat things a lot. This was something I only needed to do on a rare occasion but it turned in to a constant requirement. I had bad tinnitus which was really obvious when taking my cochlear implant off. Previously, taking my implant off was a massive relief and I liked my ‘peace’ as such. I no longer have this. Ironic I am deaf but have a horrible hum constantly in my ear. Of course covid happened and had a massive impact causing delays. 3 years on, after numerous tests/assessments and reprogramming to try and get my speech discrimination back - we reached a dead end and it was decided I needed to have the internal part replaced to make sure it’s not a hard failure. The NHS have been incredible and within a few weeks I was given a surgery date. In February 2022, I had cochlear implant revision and 7 weeks later I was switched back on. At the start we had to start slowly, I wasn’t allowed to have my programming turned up too high.

 

Work had been incredibly hard, I worked as a sports coach allocated to schools. I was finding understanding children even harder than before, a noisy environment became disorientating and I felt like I was letting the children down. Unfortunately in September, I was made redundant. Something that happened as a result of the time off I required for the surgery. For the first time since I left uni, I am unemployed which I really don’t feel comfortable with. I was angry about the situation and struggled to accept it. It was a place where although I was struggling, I was comfortable because the children and staff knew me and vice versa. I don’t have the confidence to coach in schools now, the communication side of things is too much of a struggle and I’m always tired from lipreading all day. I’ve never felt so useless. I’ve explored other avenues but nothing has come up that is suitable so far. Access to work is an option but I’m stuck in the middle. Equipment doesn’t provide the help needed and an interpreter wouldn’t be a solution as I’m not fluent enough in sign language to understand it with ease. This would also mean losing my independence which I’m not comfortable with as it’s something I’ve always be so proud of.

 

6 months of rehab and programming later, things still weren’t returning to previous levels. I was demanding too much power in my implant and it couldn’t be turned up anymore. Speech is still really hard and my hope that it would return has disappeared. I now face even more testing and assessments to see if this can be improved. If not, again I face more surgery. A case would need to be put to the hospital to either again replace the internal part with a different brand or potentially have a cochlear implant in my other ear. The NHS do not fund bilateral cochlear implants in adults so this would mean my external processor on my left would be transferred to my right leaving me with a dead/useless ear. In exceptional cases they may allow me to keep my left processor and provide one for my right. The only other option would be to go private. This costs £30000 for surgery and then £3000 a year for maintenance. So we are looking at £210000 over my lifetime. This isn’t even an option personally.

 

Right now I feel very lost, useless, confused and worried about what this means. I don’t like going out anymore, even if it’s shopping. Music has always been an enjoyment but now it’s difficult to recognise songs from the past. I have no idea if people are talking to me unless they get my attention first. I can’t even fully understand people that I live with. My speech has deteriorated where sometimes people don’t understand me so now try and avoid people just to prevent that embarrassment. A career that I studied for and spent 12 years doing, I no longer feel good enough or capable of doing. A language that would be a game changer and open so many doors to me is expensive and it’s very hard to find a course. I love using British Sign Language, I have my level 1 but my first language is English. That’s what I grew up with and changing English to BSL is incredibly hard. I would love to learn more but so far, I haven’t been able to find a level 2 course locally and the costs are high. More needs to be done to ensure deaf people have a language that is accessible. I had to learn English, French and German at school. Since leaving, I haven’t used any French or German. I don’t even remember much. British Sign Language should be taught in schools and should be available/free to any deaf individuals or families.

 

This isn’t a sympathy blog. This is just simply to highlight the struggles of an invisible disability. Not everything is as it seems. Just because I can talk, doesn’t mean I can hear. There are so many barriers that people with disabilities face and more needs to be done. There isn’t a one size fits all solution. A reminder to be kind, you never know what someone is going through.