Due to our hearing loss, most people stereotype NF2 deafies and the hearing-impaired community. Most hearing-impaired people either lost their hearing during childhood or are born deaf.
For NF2 community, most of us lost our hearing in our late teens; some earlier or later but not during childhood. We will develop tinnitus as the first sign of hearing loss. Tinnitus refers to ringing or buzzing in the ears. Personally, I had the ringing one. Now, it has developed into “many kinds of sounds and noises other than ringing. But not the “real” sounds anymore.
It’s a complicated condition that many cannot comprehend. For us, hearing aids do not usually work in the long run. We are often offered to have a cochlear implant inserted in our hearing canal which most NF2 community overseas have done. In Singapore, it is very seldomly done. Furthermore, there are only a few of us here, as far as I know.
However, a cochlear implant is not easy to maintain, involved a complicated procedure and not guarantee to work for long too. In other words, our hearing loss is something that cannot be salvaged. Doctors will try to preserve whatever hearing we’re left with until it’s eventually gone.
Hearing loss caused by damaged auditory nerve due to acoustic neuroma (tumour) is the main symptom for NF2. We go through deafness gradually hence, we are different from the general deaf/hearing-impaired community and will feel a tad offended by the stereotypes. There’s only one thing we can do and that is to educate those who don’t know but will people want to learn? 🤷🏻♀️ We can only hope. 🤞🏼😌
More elaboration and explaination on “Misconceptions We Face” that I’ll be writing on some time next week. 🙂