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Stories of NF: Fred

By June 29, 2011December 5th, 2023Awareness

Can you hear the silence?

I can. Always. I’m deafened since I was 17 due to Neurofibromatosis Type 2 and since then live in complete silence. What proved at first an enormous strike in life, I have now found ways to cope with. The first step was acceptance of this fate. Not that I have swept it aside and carry on living but rather I’ve found ways of lessening the pain which deafness brings. At first, there was the language part. If you want to enjoy your time with somebody else, you need a shared language to achieve this. For me and my family this meant learning sign language and I, over time, taught this to my closest friends, so they can find a way back to my real self. Of course this is a small world, but it’s better than being completely isolated, because no doubt this is what happens after ‘the strike’. What you thought to be friends, move away from you except very few close ones if you’re lucky. You lose the grip of the world you belong to and with it your identity until only your family is left. NF2 is so different in every individual though and many will have different perceptions and experience, but this is how I experienced it after becoming deaf.

So, suddenly without being part of either world; Nor the hearing one, neither the one of the deaf (from birth) community, I seemed and still seem a bit lost when it comes to where I belong. I would say I’m from in-between the two worlds and that sadly is quite a small margin. In public I find myself being avoided, it is almost impossible to meet new people. They all avoid me, but when I take that thought further I realise it’s not me directly, but rather communication with me. So, I keep telling myself it is their loss, I like myself. Of course though, it is mine, too. Due to the failing smalltalk (who thought this would be important?) I feel shut out from personalities, from information, from other human-beings in general. I always have to work hard and get to know many people, because there might be just be someone who will not follow this general pattern. After all I have interesting things to tell and in some way or another I can slip something maybe interesting about myself (not my disease etc.) in to provoke further interest. So, actually it is an on-going fight about re-integrating myself back into society or maybe it is just a straw of my past and true identity which I do not want let go.

Another basic of life, along with health, communication and a working social environment is that of the family. I do not know what I would do without them, just like anybody who hears says the same for his ears. Although they support me in any way possible, despite their helplessness, I know I would move on without them, because I must, because I have no other choice than trying making the best of it. Of course we all felt completely lost when we suddenly had to communicate by pen and paper after the first surgery. But after a few years we all began to understand the real meaning of the saying ‘time heals all wounds’. It is really hard to keep your spirits up if the society’s behaviour just pulls them down again. NF2 has really redefined true family love within mine and in some way or another I am even grateful for this fate. It enabled me to meet many nice people, to make new experiences, to learn what life is worth. I had one of the best childhood’s you could wish for and that can never be taken away. I have taken these words as my new motto: ‘Don’t cry because it’s over. Smile because it happened.’

I am a language student at Southampton University, which has, having grown up in Germany, always been my dream (before deafening). I thought to myself ‘why should the deafness stop me?’, so I just continued with it and it works well. Having me as a student means extra work for the tutors etc. and of course for myself, but I’m up for it. There is lots of support available, all you have to do is raise your hand. Generally I enjoy challenges and that’s what keeps me going. I see NF2 not as a disability itself (the feeling of being disadvantaged is created by society) but as a challenge. And I won’t give up before it is resolved. Many people complain about not knowing to do with their lives, having no essence. For me NF2 is a sense of life. It is certainly not boring and made me what I am today. And when I look around me, without being arrogant I believe I am a better person than some, who are just not aware of the value of life, who just lead the same boring life as always and being somewhat superficial. In Shantaram, the best book I have ever read, a sentence goes ‘If you can’t do anything about something, you have to accept that things could be worse and that you are completely helpless in the face of it’ but Voltaire said ‘the longer we dwell on misfortunes, the greater is their power to harm us.’

So yeah, guess I gotta keep moving.