Wednesday, 3 September 2014

What is normal? A setting on a washing machine!

VHL UK/Ireland Home

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… Normal?

There isn’t much I remember, 13 years on, from that first Christmas. All the appointments and
hospital visits have blurred into one, the years merging together to become one big chapter of our lives. What I do recall comes in snippets of memory: A car journey with my Dad, his words – “He will have to have surgery, one wrong move, they slip an inch, and Michael is gone!” Demanding to visit Michael every morning, the words my Grandfather said to me once, late one evening that made me feel the safest person in the world: “Don’t think that no one loves you, because I always will.” Michael complaining because his ice-cream used to melt before he could eat it, a magician, and the nurses wheeling a bed into Michael’s room so that we could wake up together on Christmas morning. Feeling special because I got to open one Christmas present before Michael – it was a game-boy colour. Doing the Can-Can around the children’s ward with the nurses on New Years Eve and Michael munching Hula Hoops really loudly next to my ear when we were watching a film, because he knew it would annoy me, and I couldn’t hit him!! That security of being sandwiched between my Mum and Dad watching a film together – Knowing, from that moment in the car, my Dad would always tell me the truth, no matter how hard the truth might be, I knew he would always tell me as it was. Visiting Michael, now a few years older, on Boxing Day and finding him in a foul mood because he was hung-over from one shot of Jack Daniel’s the nurses allowed him to have and proudly watching him walk the length of the ward with a zimmer frame. Saying the worst insults I could possibly think of to shock the nurses and make him laugh, my favourite: “It’s not fair you got all the height genes and you aren’t even using them anymore!” The moment you are told this is it – there will be no happy ending to his story as you had always secretly hoped and the hug from your Mum that you never want to leave. Standing in front of more people than you can remember, reading the words you’d written in memory and honour of your brother. Normal – Isn’t it?

VHL never stopped Michael and because of that it never stopped us as a family, we survived, we lived and enjoyed our time together as much as possible. He went to school, he passed his GCSEs and A’ Level’s, he got a job, he went to University to study Architecture, and even when he was forced to come home, he still never let VHL stand in his way of enjoying life. Our local pub had no disable access, so he would get the gents of the family to drag his wheelchair up the steps, park himself in the centre of the group and talk – non stop!! And, later, when he was more content with staying in his room, he studied and achieved a diploma in designing games; he would spend hours creating one game, or a character. He never stopped fighting to regain all that he had been forced to give up – He lost the use of his legs, he went to physiotherapy, even when they said he would never walk again, that only made him more determined to prove them wrong – he stood! And I will always remember the smile on his face when he was able to stand without support for a whole 2 minutes! He lived, he loved, and he laughed whilst putting two fingers up at VHL.

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

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