A Second Life
My name is Johan Bakker. I live in the Netherlands.
Until 1998 at the age of 30, I had just a normal life.
Nobody noticed and I was not aware of my Pompe Disease.
After that year I got more and more physical problems:
cycling uphill became difficult.
I couldn't take a sprint anymore for the ball by tennis.
Sometimes I had a sudden fall.
I did walking uphill by bending the body forward.
All strange maybe but only that.
In 2002 I had a serious car accident.
I lost consciousness at the Higway and crashed.
Later they found out it had to do with blood gases,
hypo-ventilation and my very bad respiration.
In this year I became one of the directors of
one of the largest waterboards in the Netherlands. So I was busy.
After 2002 a rapid deterioration started.
More than 300 of my employees were my daily witnesses:
the Boss and his Pompe disease.
At the end of 2005 I was almost disabled.
I was partially reported sick
Walking even with crutches was almost impossible.
I was sleeping with a ventilator. I got a adaptated car.
I got a staircase elevator etc. I had tot quit all kind of activities:
biking, playing improvisional theatre, skiiing, even
walking a small distance. And worse of all:
I could play the piano not more then 5 minutes
because of pain and cramp.
I realised it was a matter of months
and I had to quit this last passion...
So, I released my (I thought) last piano CD: Concert for Civilization.
It was my personal way to deal with that present situation
and its was my call for Myozyme. Kathy Parsons wrote:
'Concert for Civilization is a very stirring musical work of Art
that combines classical, new age, and ambient stylings
in a deeply personal way'. It could have been my words.
We sent this CD to the House of Parliament.
This was my 'Extraordinary Measure'.
Over 10% of the Representatives of all Political Parties react with
a personal email or Letter.
In february 2006 I got my first infusion with Myozyme.
I didn't know if it was Myozyme or a plaecebo,
but after a few months I felt I was a lucky 'testcase'.
I got more energy, I could sleep less, and much more.
Now I can walk again without crutches.
I can climb a small stair again.
I am working fultime again as a director.
In april 2007 I gave my first piano concert after 7 years.
I played the piano non-stop for 1,5 hours. I did it again in november 2007.
I can play again with no pain and no cramp !
On the 4th of July 2008 the U.S. Embassy of Berlin chose
the music from Concert for Civilization for the opening of
the new Embassy Building 'Pariser Platz 2'. Not because of Pompe,
but because of the music. And that is what I can offer for Civilization.
Three days ago I fall on the ground playing Soccer with my Son. He won again.
I had pain for two days. No more.
I won also: I can play, I can live, I can cry because I had this luck. I have a Cure.
I am living a second life !!
Johan, january 2010