My condition came as quite a shock to my parents especially. I wasn’t diagnosed yet at this point. It was in 2004. In the doctor’s room, we were told I had a brain tumour and I needed surgery.
Because my paternal family has a history of cancer, my Dad was the first to have a very strong reaction to the news. I remembered his teary eyes but I, being the always nonchalant type, took the news with an expressionless face. I was only 15 then. I hadn’t lost my hearing but the tinnitus in my left ear was slowly settling.
After I was diagnosed with NF2, my teenage years were made up of hospital visits, visits to the medium, to practitioners of traditional and herbal natural medicines and more. My parents tried hard to look for alternative treatments for me.
Truth be told, neither them or my family had tried to learn more about the condition. I wasn’t mad, I just hoped they would come to terms with my changing self and accept me for who I am and whoever I am becoming. And that I am not perfect.
When my “hearing problem” eventually turned into deafness, they slowly adjust to my transition although it was difficult and could end up in an argument because we were both trying to get each other to understand.
It is still not mutual all the time. I have days when I just do not want to try and get what someone is saying. Some days, they get tired of trying to tell me something so they don’t. I do feel like ‘the problematic child’ all the time.
Now though, most of my family members use their mobile phone to type out what they want to say or they’d send me a message. It still get frustrating but we just have to endure the challenges. After all, we are family.