06 June 2019
Tom Hazell is 37, works in IT, lives in Essex with his long-term partner, and likes online gaming and watching films and sport. He also has NF2/Schwannomatosis. Here he explains his outlook on life.
I have NF2, and I believe it is more likely to be Schwannomatosis.
All my tumours have been located on or around my spine. All these operations mean that I am unbalanced and get pain in my legs when I walk, due to all the nerve damage and the muscle fatigue. It’s a very strange sensation when you have to actually think about how to walk and what to do with your legs, how to place your feet etc.
My most challenging issue is being less active.
I wasn’t out running marathons or anything, but if I wanted to go and play football, tennis, badminton, it wasn’t an issue. I was lucky enough to have pretty good hand eye co-ordination, so I picked up any racket sport pretty quickly.
I get my support from my family and those close to me.
My long-term partner has been with me through most of my operations in my adult life and she knows how to motivate me. I’ve never felt the need to look for outside support as I am lucky enough to have lots of people looking after me.
All you can do is try to keep moving forward.
Your life may change but that doesn’t mean that it’s not worth trying to push through it. For families dealing with a member who has NF, all I would say is be as normal as possible with the person affected. In my opinion, there is nothing worse than everyone fussing and not acting themselves around you. It just reminds you that you’re the “ill” one.
Do your homework.
If you’re the kind of person that needs to know exactly what is going on with your body, there is so much information now on NF that you can soon become an expert.
People tell me I'm brave – I'm not.
It’s not brave to do what you can to make yourself well again. I’ve always believed it’s the people around you that are the brave ones. Being there for someone and supporting them, is much more difficult than a bit of pain and discomfort. I can’t even begin to imagine what it would be like to watch your loved one get wheeled into surgery and not know how they are until hours afterwards.
I have a pretty laid-back approach to life now (much to the annoyance of my partner).
I don’t really worry or gets stressed about day to day things, it all seems a bit insignificant compared to what I have been through. I don’t know what the future holds for me – I just know that whatever it is, I will just have to deal with it when it happens.