by Kathryn Samuel
It’s 2000 and the first Monday of my Christmas holidays; I’m 11 and laughing with my brother, Michael, because the nurses are running around the hospital, looking for my missing sausages and chips! Michael is 13 and has just been diagnosed with VHL – Von Hippel-Lindau disease. From this moment on our normal is as strange to me as the very idea of a brain tumour!
We were 11 and 13, we were meant to be looking forward to Christmas – I was just looking forward to having my brother back to…
There isn’t much I remember, 13 years on, from that first Christmas. All the appointments and
As abnormal as our lives have been we have never lost sight of what is truly important, and that is the message I want others to read. I have seen too many blogs describing in fine detail their problems; I want to show you, readers, that – Yes it is hard and painful, people will get hurt and yes, sometimes, you will get left behind. You watch someone you love suffering unbearable pain for over half your life, you support them, love them and hold their hand at the very end. Yet through all of this I would like to tell you, as someone once told me, it is going to be ok. I never say fine, fine in my family stands for: frantic, insecure, neurotic and emotional! No one is ever fine in my house we are all ok… or ko depending on how much wine is involved! Enjoy your life despite the pain, never forget to live, love and laugh as much as possible because one day that is all you will have left – the memories of those rare moments of freedom.
Michael never gave up, he sought to live life as much as he could each day – at the end his greatest delight was driving me mad by mouthing ‘laptop’ and pointing at it with a puppy dog look in his eyes because he wanted me to play his Final Fantasy 8 game for him!! His one wish was always to feel the wind in his face again as he ran along the beach – he is running free now between the moon and the stars. He won his battle with VHL because he never ever let it control his life, he fought back and he took control of every aspect of his life and when he chose to leave us for his next great adventure! He won. He is free and he is missed. For Michael, I will never give up and I will run and feel the wind in my face. We will all keep on running towards our new normal – what is normal? A setting on a washing machine!
Kathryn is running the Anglesey half marathon in memory of Michael - visit her EveryClick page to find out more - VHL UK/Ireland