To recap, I was diagnosed at age 15 after my first brain surgery. I was blessed to have retained my hearing until two years later. At age 17, my left hearing is totally gone and I relied mostly on my good hearing on the right. Life was still bearable with this condition. I managed to utilise this for 6 years. In 2012, I started to lose my remaining good hearing at age 22.
When I could no longer use the phone or listen to music, it was a dark period for me. But keep living I must, therefore I picked up the pieces and strive. I equipped myself with more knowledge about NF2 and get my closed ones to understand it. I’m lucky to have them. My husband who was then my boyfriend decided to get engaged the same year and that was a move that made me feel assured of the future.
Forward to today, I am a wife and a mother. As I’ve written, I had underwent a surgery a year after delivering my baby due to an increase in size for one of my brain tumours. Post-surgery, the complications I acquired limit my ability to perform mummy duties. I feel terrible for imposing too much on my aging parents, husband and immediate family members. Aside from the balance problem and decreased strength on one side of my body, I recently discovered a few of my spinal tumours are compressing on my nerves.
Right about now, I’m having pain on those areas. It has become a daily thing where I would have trouble sleeping because the pain would jolt me up at night. I also feel a tingling sensation throughout the weaker side of my body and on my waist, an indication that the nerves are being pressured by the tumours. The way I walk is akin to an elderly as the tumour on my lower back feels like I have a weight on my waist.
Things are increasingly problematic and I might need another surgery in the near future but in all honesty, I am not ready. It’s definitely a daunting period where I need to be strong for my son and at the same time, try to not let my issues bother me. But how can I? Sometimes, the pain is hard to ignore. I’d feel awful, incompetent and useless. I’m only human afterall. Yes, I am trying to be more positive and look pass my flaws. However, when someone remark about how I look due to my facial paralysis or how lazy I am because I am not doing anything to get better, I get really affected.
I know people around me just want to help and I appreciate that. It’s just that they won’t truly understand what I’m experiencing because of course, it’s only happening to me. Such a complicated life I’m living that I am overwhelmed with gratitude for all the little blessings now! ☺️
I struggle, daily. And so does a lot of others too. Everyone is fighting their own battle we have no idea about. As an NF2 individual, these are some of the things I struggle with on a daily basis. Every person with NF2 struggles differently therefore I cannot speak for everyone. I can only speak from my personal experience and here it is. 😊