I was officially diagnosed twenty years ago. My dad was diagnosed in 1987 and incapacitated by NF2 by the early 90’s. World-renowned doctors tried to help him, but it was too late, and not much could be done to preserve his quality of life. My father’s name was Johan, and he passed some wonderful genes to me… even with the mishap on chromosome 22q12.
Both my Vestibular Schwannomas received fractionated stereotactic radiation whilst I was still a teenager. The left VS has always been ‘good’. The tumour on the right is the temperamental twin, the one that’s prone to growing. And it became symptomatic this year. I’m a bit deafer, it’s ringing, I’m not quite so surefooted (not that I could ever brag about my balance with my NF2 mononeuropathy, or ‘little polio foot’ as I like to call it).
But I have also had some amazing doctors, and they’ve given me the last 20 years to tick my NF2 bucket list. I was a voice actor, I played in a band, I crawled around in an anechoic chamber… and I flew a plane over the Nelson Mandela Bridge in Johannesburg. I’m 32 now. I started writing a fantasy novel right after my ear started ringing. I’ve always escaped to other (more fantastical worlds) when I needed time to process my own. And this time I needed to be in control of something, autonomously. It’s my NF2 irony.
My body has some alarming difficulties producing Moesin-ezrin-radixin
I would, of course, very much like to keep hearing. They put a hearing aid in the right ear yesterday, and now I want to keep both ears even more. But it all depends on what the right VS is doing; whether seven years is going to prove to be its longest slumber. The jury’s still out.
So what do I need to do to keep some of my hearing; or to ensure that a Falcine meningioma doesn’t one day crush some of the best parts of my personality? Tell more people about NF2? Ask geneticists to make us some magic? My brother always jokes what I lack in strength and dexterity, is outweighed by my charisma and persuasion.
Here are three photos. One is me doing an NF2 bucket list thing in 2018. The other one is me now. And the third is my dad a few years before we lost him. My father’s greatest skills were his intelligence and endurance, and I hope he passed some of that on to me too, especially the last one.