Helpline 07939 046 030

Tom GK in Lockdown

22 May 2020

Hi, I'm Tom. I am a freelance journalist, comedian and proud custodian of literally dozens of non-cancerous tumours. I'm 33 and live in Brixton and, well, there's really very little more to say. 

So now the cat is out of the bag. Now everyone knows what I've known ever since I was diagnosed with NF2 eight years ago: our doctors and nurses are AMAZING. It might have looked weird at the time but maybe I should have been spending my Thursday evenings clapping outside since my very first MRI scan. All by myself. Sorry about that, guys.

The lockdown has been a funny old thing, really. In some ways it has been frustrating (of course), as life has been paused and plans have been binned. I think for someone who can struggle not to have my life dictated by illness, and particularly treasures the times that going out is easy, this has been frustrating. Yet it's also been a brilliant opportunity to - cliche alert - really learn to love the small things in life. Whether it's actually speaking to that friend who you haven't spoken with since 2013, enjoying the slow arrival of spring or mastering the art of sourdough bread. These are things that transcend worries about jobs and money and careers and having the worst disease ever. 

Having NF2 can be a lonely business and it can be hard to do what we really should be doing: living everyday for the moment.

I think it's something that the "Cancer People" (I'm determined to turn this into a rivalry) do better than us with their bucket lists and things, to be honest. But now there are 60-odd million people in Britain who have all learned how precious and fragile life is, all at the same time. Maybe now we can all learn to live for the present a little more. Going back to my "Cancer vs NF2" rivalry idea, I've even come up with a slogan: "Cancer might be annoying but NF2 really gets on your nerves". I think the whole idea really has promise.

Filter News

Filter by Date
Category
Reset

Patrick’s NF2 Blog

Read his attempt to build people's understanding of the challenges with disabilities

Read More

Share your Covid-19 Story

Help us understand the positive and negative impact of Covid19 on you, your loved ones & carers.

Read More

We’re Here for You, Our NF Community.

A big thank you from Karen our Charity Director - your support has been amazing!

Read More

Global Genes LIVE!

Join Global Genes September 15-25, 2020 at Global Genes LIVE! A RARE Patient Advocacy (un)Summit.

Read More

Shine A Light on Neurofibromatosis now streaming on The Disorder Channel

Find out how we are bringing NF Awareness to people's homes

Read More

Fun-Raising

Let's get active to support the community

Read More

Best Film Nomination “Shine A Light on Neurofibromatosis” PM Society Digital Awards

Join the awards ceremony virtually this Wednesday 16th September

Read More

Centre for Appearance Research NF Survey

Find out how you can take part in CAR's online survey about NF parenting and caring experiences.

Read More

Act it Out Prototype App Trial

If you are experiencing difficulties related to NF & 'Visible Difference' - find out how you can take part

Read More