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
