Continued from Part 1:
I am huffing and I am puffing.
I am six years old and I have decided my current relationship with my mother is both a love and hate relationship. Scratch that, it’s a love-hate relationship with my life too.
I love my mother because she is the best mum in the whole world. I also despise my mother because she keeps taking me to speech therapy and forcing me to wear the box that makes funny noises. It’s entertaining enough, but I don’t know why I have to keep wearing it.
The bigger pest is speech therapy. Especially when it’s taught again at home with my mother. The hand covering fiasco is still happening and I still have to wear a big box on my chest. I can hear some things and it seems to keep my mother and my speech therapist happy.
But I’m huffing and puffing because my biggest pest in my life is the cochlear implant. I’ve just realised the cochlear implant is starting to have complete control over my life.
I am also despising how the cochlear implant sticks out. When people see it, the negative response is almost immediate. Especially if I wear it underneath my leotard for dancing classes.
If it breaks, everything is dropped to fix it; if I run out of large AA batteries, I’m immediately excluded from activities even if hearing is not needed; if it is misplaced or stolen, my life became stressful and fraught with miscommunication and everything is my fault.
I often wear the FM system every day. I am responsible to recharge the FM, check that it is working, troubleshoot when it isn’t working, and take it with me to pass it along to other teachers.
“In my teen years, my proudest moments were when people did not realise I was deaf. I thought that was a good definition of success.”
Every year, I am invited to be alongside with Professor Clark or Cochlear to share my story of success. As I speak, people become quiet. Then they laugh. It ends up in applause as I share a story of conquering deafness: I can now play the piano, speak a little Chinese and dance to music.
I am sixteen years old. Life was good. According to the responses, I had ‘made’ it.
Or did I?
I couldn’t help but feel that I was missing out on so much on life.
In spite of my hearing and speech ‘success’, my life is still ‘deaf’.
I am so confused. I thought that my life will get better from here on out after school.
Advice: Many friends, family, school teachers and kind strangers claim that university life is ‘the shit’, that it will be a breeze for me and I would love it all. The freedom to choose any subjects, the parties – and go live your life, they said.
Reality: University is overwhelming. I feel so out of place. It does not help that I am not engaged or passionate about my university degree or anything in my life.
Advice: Voices start to pipe in to say, “Oh, don’t worry about university, it’s the parties. Meet people and make new friends.”
Reality: “No” is the frequent response I send, turning down invitations to parties. Alternatively, if I had to go to a party, I would start counting down the minutes until I could leave at an ‘appropriate time’.
Music thumps, drowning out the conversations, jokes and laughter. Lipreading in the dark is useless when I can only understand 30-40% correctly in the best situations. Almost every time, I am an observer in my own group of friends. I could not participate in any way. As a result, I develop acute social anxiety: I do not want to go out at all.
Advice: Work will be great – there will be plenty of opportunities. Deafness will not be a problem as I can speak and hear.
Reality: At my first job, my work colleagues are actively attempting to discredit my work at every opportunity. Instead of blowing up in frustration, I just smile and work harder. I knew if I can get through this with a positive attitude and a relentless work ethic, I can get through anything in life.
My only sliver of happiness is the morning coffee dates with my mother before going to work.
All the barriers – the widespread ignorance and misunderstanding about deafness, my inability to explain how it affects me socially, physically and mentally, my challenges around work, social events and access to basic information – all exacerbated and multiplied over time that eventually, I could no longer manage my deafness. To make matters worse, my experiences are constantly invalidated by people – who are not deaf – who thought their experiences were similar, “Oh, I get that all the time too!”
My deafness is controlling my life. I had no useful skills or strategies that will help me in any situation. I begin going to counsellors. Psychologists. I sought advice from close friends and family. It was hopeless.
So many situations became triggering that I had meltdowns every month for several years.
At a point, I began to accept defeat – I believed that my life was to continue to be hard and it was going to get harder.
At the age of 22, I began to contemplate suicide.
To be continued in Part 3