How would you feel, knowing the possible damage you could face in the future due to a disorder? You’d be overwhelmed by fear, wouldn’t you?
Initially, when the complications I faced with NF2 weren’t so bad, I did not think so much about it. It’s when my right hearing got affected, that I went berserk. I breakdown a lot, always wallowing in sadness and found it difficult to adjust.
Over time, I learn more about NF2, did research and asked around and am able to slowly come to terms with everything. Apart from losing both hearing (some of us went totally deaf while some are able to retain a small amount of hearing), we are also prone to having balance issues, paralysis and loss of bodily functions. In addition, a dry eye and facial paralysis could also be a very straining problem as they could cause a decrease in our self-esteem and confidence.
After my second surgery, I developed a very obvious facial paralysis, inability to fully close my left eyelid due to it, which led to a dry eye condition. It gets irritable from time to time so eyedrops have become a staple in my list of medical needs. The complexity of NF2 is knowing the implications but having to be ready for them. We struggle to live a positive life regardless and keep in mind of the possibilities. There’s no point harping on the “what ifs” because when the obstacles eventually rise, we still have to face them and work around them. Therefore, for me personally, the phrases, “only worry when it happens” and “ take a day at a time” have become my everyday affirmation. 🤟🏼