Are’s life with ALS – Lou Gehrig’s disease

Are’s life with ALS – Lou Gehrig’s disease


I feel…happy.
In a deep way. The voice is a great loss. It puts me
in a completely different situation. Just being able to grunt a little,
or utter simple words, – – provides a lot
in terms of communication. When this disappeared,
I became very isolated within myself. Suddenly tools and techniques became
very important for simple daily tasks. I feel he will come back one day. So I can’t change it.
I don’t want to change it. He did scuba diving a lot. He told me he went to Africa.
Tanzania and many places. He collected lots of shells. This is the one we brought
from our honeymoon. He is mad about water. A nature boy. I now see the good things in life
more clearly. It’s the small, daily senses, And experiences you take for granted. Like fresh baked bread
with strawberry jam. All I’m able to do on my own – – is to kick my way back up in bed
if I slide down. I say yes by lifting my eyebrows,
or by nodding. And no by closing my eyes
or shaking my head. His mother wanted to have
a good picture as soon as possible. When Are is still healthy and standing
and everything is okay. So we went together to take the photo. It was really beautiful. ALS came invisibly and slowly,
creeping in. It has stolen my best years,
and dreams. Like being the best dad in the world
for my two daughters. I don’t know why this happened to me. Life is based on coincidences. This is Are. We married in 2005.
In August. Nine years ago. This we can still do, even if he’s in
And I don’t feel any difference. Fate brought us together. I went to Japan for a two-week
training camp in the martial art of ai And there was Yuki. Six months later I had resigned my job
and sold everything I owned – – to move in with her. I think about death every day. I don’t feel like I’m dying,
but you keep wondering. There is a life force
that just won’t give up. And stay true to you,
through good times and bad. Till death do us part. -Mum is crying.
-Mum is not crying! Mum is laughing. No, Mum is laughing! -And this is Dad. It says Are.
-That’s Japan. Aikido. These pages are reserved
for my boyfriend. And who is he? Symptoms began in the summer
of 2009 on the football field. I stumbled for no reason at all. One year later,
I was diagnosed at a hospital in Tokyo Sporadic ALS.
Lou Gehrig’s Disease. At the same time, my wife gave birth
to our second daughter. I checked on the Internet what ALS was I didn’t understand what I saw.
It said: “98 per cent die within 3-5 years.” Those were the only words I could see. I didn’t understand what I was reading And the baby was crying,
and I was trying to rethink about it. “No, no.
That’s a possibility, but it cannot b I worked as a programmer for
the biggest security company in Tokyo. I was the only Westerner – – among 600 Japanese. In the end I had to quit my job,
because I could barely walk normally. I fell over by a sneeze
while standing on the metro platform. Then I moved back home to Norway.
I had the diagnosis confirmed. When I started to give her food, he
started not being able to hold a spoon So the timing was not so easy. All my life I’ve been healthy. I had never been seriously ill before.
So this was very hard to comprehend. Hello there.
Happy birthday, big brother! Hello! -Kim, this is for Viktoria.
-For Viktoria? How nice. -Hello!
-Isn’t this a cool hat? -How you have grown!
-Look at Daddy’s sweater. Now black is also empty.Konnichi wa.“Who is coming for a visit?”
That’s us! What a cold hand. Is it too tight?
Or is it just right? 44 years, and two grey ones! That’s not bad! This is going to be a monument
of Are’s 44th birthday. People’s energy stays together. Everybody has to touch. Mum, why did you do that? They are wings for Dad, so Dad can fly I’ll make a heart for Dad. Close your eyes and make a wish. “I wish us all to enjoy ourselves…” “And be…” “Hap…” “Happy.” “I wish us all
to enjoy ourselves and be happy.” Thank you so much, Are. Fumina, could you blow out the lights? The only motivation I have is
that I have to exist for my daughters. I hope I will survive
until they’re old enough, – – so I can personally
explain to them what has happened. So they can understand
why their dad became this way. If I am strong enough, and
get a good support team established, – – chances are
that I can manage many more years. But it will be tough. A little ladybird…

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