Ameliana Meahan Yap fondly known as Amy was born in sunny Singapore. She is the first person in her family to be diagnosed with Neurofibromatosis Type 2 (NF2) at the age of 18. During her adolescent years, she had undergone several minor operations to remove external growths on her back, neck and eyelid. Back then, they did not link it to NF2 and only mentioned that the cells were schwann cells. They also found out, due to poor eye test, that her left retina has a scaring which was initially misdiagnose as a lazy eye until a second opinion was conducted. Apart from the scaring, she had a floating eye and underwent surgery to correct it.
She did not face any issues during her early teenage years however at 18, she started to experience a sudden ear block on her left ear which she had thought was due to swimming. It did not subside for months and she also started to experience severe headaches. Upon undergoing an MRI, it was revealed that she had a large growth on her auditory nerve which cause the blockage and hearing loss. She also had another on her right auditory nerve and several others in her brain. It was then they relooked at her medical history and concluded she has NF2.
She underwent a radiosurgery known as Novalis instead of an operation for her left growth as it was large and growing very near to the brainstem. They wanted to leave the right growth alone to save her hearing. Unfortunately, months later she would lose it overnight and eventually become completely deaf. During this time, her neurologist arranged an MRI for her spine where it was confirmed she had more tumors alone the spine region. They were left untouched but monitored since there were no issues then. The novalis had fortunately worked in shrinking her left growth significantly.
The loss of her hearing and medication to help with the brain swelling, which at one point caused her to temporarily lose her vision, made her mentally unstable and she had to make a difficult decision to withdraw from her Biomedical diploma to focus on her recovery. She had slipped into depression feeling lost with the now silent world and facing rejections from family members, friends and later on while trying to resume schooling and eventually on getting a job. Thanks to her supportive love ones especially her partner, Damian, she was able to keep fighting on even when things look bleak.
Damian had also helped her cope with learning a new way to communicate with each other via texting, writing and creating their own sign language. It spurred her on to attend sign language classes that brought her into the world of the Deaf community. Being with other Deaf individuals, she learned how to adapt better into the silent world and became more positive. During the same time, she was offered a job as a Junior Operation Executive at a translation company where she liaises with translators from all over the world online. The job role had boost her confidence and self-esteem as she was given an equal opportunity and treated the same way as hearing individuals. She did not feel she was seen as different.
After gaining 5 years of experience, Amy decided to take a leap of faith and challenge herself further by switching to a multinational company to become an administrative assistant for office support. Her job there requires her to communicate with individuals directly unlike at her previous workplace and handle more roles. She hopes with different roles, she would eventually find out what is her niche and at the same time she would like to create awareness for people with special needs and illness. That through her presence working in the company and constant feedbacks on how the company can assist her, that it will be a more inclusive place which might open up more job opportunities in the future for this group
Being an active person, she joined a dragonboat team comprising of deaf paddlers and hearing volunteers. Later she also signed up to a gym and started to do more strength training which had helped play a part in improving her balance tremendously. Yet again with the support and encouragement of Damian, she has also tried more things such as going back to cycle on 2 wheels and hiking. Still, her favorite is swimming as she loves being in the water. Together, they had also swam with wild dolphins in Perth during their holiday.
Amy believes that with NF2, every moment is very precious and therefore we should seize each and every single day. We should not let the future scare us and prevent us from attempting new things or even revisiting things we used to do. She believes to that as long as you know your limit, give it a try. At least you won’t have to look back wishing you had done it back when it was possible.