Insights on Neurofibromatosis Type 2 (Fear and Worries)


As written on previous posts, NF2 individuals do have fears and worries, especially when we know what could happen in the future. My fear seeped in when I began to lose my good hearing. I was in constant turmoil and as my relationship with my then-boyfriend had started to lean in towards engagement and marriage, I found myself in a dilemma. I wouldn’t be able to be the best wife, in-law and mother. I’m deaf; in other words, I am imperfect.

A few years of marriage proved me wrong. I was accepted into the family despite my crazy transformation albeit not an easy feat, I’m sure. With pregnancy in the picture, my worries escalated. I’ve heard of the 50% chance risk of passing NF2 gene to my child and that scare me the most. Up ‘til today, I have not send my child for genetic testing but would do so soon to keep my mind at ease. The guilt is hard to bear. I’d feel lousy and sometimes inadequate. Always, I’d feel like a burden.

However, I cannot let these fears and worries consume me. Why should I worry about things that I don’t know, right? I haven’t even taken the first step to get my son tested so I should keep my worry at bay, for now. The thought of possible paralysis also weighs on me right now as I struggle with backaches and the need for another surgery. I’m now trying to withstand and hang on to whatever strength that remains. My son had just started embarking on another milestone and I refuse to let my health concerns deter me from witnessing his wonderful progress. Taking a step back from my worries by distracting myself with my son’s achievements helps.

Too many complications NF2 can pose, but we need to keep having a positive mindset, outlook and patience. A strong willpower to continue affirming ourselves that we can do this, come what may. I may lose another ability in time to come, but I won’t have it any other way. For now, I’ll proceed with my daily routine and activities like any normal person would. Gambatte! To myself and all the strong women, men and children who’s fighting your own battle. 🙂