My name is Frederik Suter, one more year and then my life will be 17 years without and 17 years with nf2. I don’t think I have to tell you which part of the two I would choose if I could. NF2 is an asshole. I’ve been through a lot already, wrote an autobiography about it five years ago and since then NF2 has kept trying to pull me down. There are so many metaphors in my head which put the ongoing battle between me and NF2 into pictures, for example I sometimes imagine a swamp of quicksand where I am trapped and slowly being swallowed until only my head (which still works contrary to my body) is popping out. Or like a tug-of-war where I’m slowly being pulled to the mark where I’ve lost although I’m pulling back with full strength.
Funnily enough the more NF2 throws at me the stronger I seem to get. So I can’t really lose, can I? Well, let’s say I won’t give up without a fight. Sure, some day I will have to face the showdown, but then I will be the one who decides when it’s over. I already made some vows with myself that when nf2 causes me this or that restriction in addition to the many I already have, then I’ll call it a day. However, until then I will keep fighting and with hope, humour and humility look into the future, indeed this year some of my restrictions have been improved and I have regained some life quality back and at the moment I am overjoyed and positive. Next year maybe I’ll try to get my ABI repositioned which never worked unfortunately. But third time lucky, eh?! And then there’s NBS which surely give some hope, even though nf2 has caused me to become very sceptical towards research about it throughout the years. I’m very grateful that there are new initiatives happening and NBS indeed seems to be a fresh and promising approach.
My book has been translated into English and is available to order here:
http://frederik-suter.editionblaes.de/suerte-english/
(Shipment to the USA possible!)
From each sold copy $5 (5 €, £4) go to NF2 BioSolutions
Book Blurb:
Frederik was 17 when his life suddenly changed. He didn’t know at that time how to face the challenges which lay ahead. He perceived things as easier than they actually were – a characteristic which proved advantageous here. When, amidst hearing loss and other problems, he was diagnosed with the incurable condition NF2, he chose to accept this fate. The disease would continuously challenge him to find new ways to achieve what he wants and to break this new ground.
From the very first line, we join Fred up close on his journey and get to meet a young man who, despite his impairments, remains full of courage and confronts adversities with confidence, strength of will and quite a bit of humour!
