NF Awareness

Case Study #49 - Krizelle Researching NF2
Prep sketch by Rachel Mindrup for her
Many Faces of NF portrait painting project

May is NF Awareness Month, a time for members of the neurofibromatosis (NF) community to promote awareness, educate those around them, and raise funds to support research that will lead to effective treatments of the three types of neurofibromatosis: NF1, NF2, and schwannomatosis.

For four years now, I have actively participated in raising awareness for NF during May. In the process, I have come to know many amazing people driven by the same cause — to improve the lives of those living with NF. I say it again: never have I thought that being a part of this community will allow me to meet such people, travel to places I never even thought I would get to be, and find a sense of purpose in this otherwise forlorn world.

And now as May comes to a close, I am writing this post to share about my current state of mind in my own personal battle with NF2.

“There are plenty of others in the NF community who have gone through so much more than I have. And it is the resilience and strength that I have witnessed in these people that inspires me to keep fighting and keep living. They are the reason why I am chasing this dream of pursuing research to help end NF. It is not an easy battle, but I know I am not alone in this fight. The real Dream is that one day, no person would ever have to suffer from symptoms or loss of a loved one again due to NF.”

These are words that I wrote for Rachel Mindrup's Many Faces of NF portrait painting project. While every word of it is still true, I would like to thank my friend YL for reminding me that this is indeed not an easy battle and that I should drop my own cloak of invincibility.

You see, as an INFJ it really rings true to me that I see helping others as my purpose in life, but my real passion is to 'get to the heart of the issue so that people need not be rescued at all'. That I am a dreamer, but not an idle one, and I am restless unless I take concrete steps to realize these goals and make a lasting positive impact in this world. Hence this dream and passion to help #EndNF.

However, the reality right now is this: I need help.

As much as I would like to raise awareness and help push forward this cause for NF, I am also being made acutely aware lately that I have NF2. I know it, I have not been running away from it, and I am not in denial of it in any way. Yet the truth is still difficult to process. I am not immune to its debilitating effects.

I may seem generally well, yes. I am thankful that I am not experiencing physical pain of any kind, nor paralysis of any body part. I am thankful that I still am in disease molecular biology research, doing something much in line with my life purpose.

The thing is, I cannot hear very well now. And I am struggling very much with that fact.

I am writing this not to gain pity or sympathy or to evoke compassion and thereby get something from someone or anyone. It is also not my intention to put myself above others with NF who have experienced or are experiencing far more challenges than myself. No, no, not at all. I am writing this as part of my campaign to raise awareness, to highlight the fact that NF affects everyone differently. This is NF. Bear with me; it is not very easy to be eloquent when describing your innermost struggles to, well, strangers.

My point is this: Deafness is very much isolating. 

And for the life of me, I cannot quite figure out at this point how to carry on helping others if I cannot communicate well due to my hearing impairment. How to move forward in pursuing research for NF in this state. How to hear people's stories (please, no small talk) and to share insights, experiences, and life lessons with others. How to shine a light rather than be a burden to people.

But as Iroh from Avatar told his nephew Zuko,

"You must never give in to despair. In the darkest times, hope is something you give yourself. That is the meaning of inner strength."

Therefore I am not in any way giving up or giving in despite this challenge. I am a fighter, after all. I do not have all the answers yet, but I believe I'll find them. As Prince Zuko said, "I've always had to struggle and fight, and that's made me strong. It's made me who I am."

And the fight continues.

#EndNF