not those who pass you because they swim faster than you – they are many
those who you leave behind are the ones you respect – because they all have a story
they are probably older than you – the oldest yesterday was 82
they may be ill, weak, untrained, overweight…but they all try and they push water and kick
and for this you respect them
this is how it goes in the water:
each one with their own story
my story is about a missing gene – the gene known as ANO-5
the gene in position 14.3 in chromosome 11
the 11.14.3 gene provides instructions for the production of protein anoctamin-5
researchers do not know exactly what this protein does and how it functions precisely
what we know is that the lack of this protein
results in muscle cells being atrophied and eventually die
the outcome is known as muscular dystrophy (md)
one of the more than 40 types of md is the:
limb-girdle muscular dystrophy type 2L (LGMD2L)
it essentially affects the muscles of shoulders, hips, thighs, and upper arms
up until today this is a rear and non-curable disease
i was diagnosed with LGMD2L five years ago
this came after a long history of leg weakness
difficulties to walk – almost impossible to run –
and a lot of accompanying pain
the news came after several wrong diagnoses
one doctor five-six years ago essentially prognosed that it was only a matter of time
- a few years he said – and i will end up on a wheel chair
and this, only if i was lucky because the disease affects cardiac muscles – hence: early death
this very well-known reumatologist
put me onto a heavy dose of cortisone which i was supposed to take for more than 5-6 years
and if i were lucky – it might work
i was strongly prescribed by that doctor to not “waste muscle” in any way: no exercise
not even swimming or cycling which i loved
you ´ve got to be lucky in this life
and you need to find your angel – we all have one
my angel’s name is dr. john vissing
dr. vissing is a world renown neuromuscular researcher
professor at the university of copenhagen and expert on muscular diseases
with numerous publications especially on LGMD2L
he is in rijs hospital, here, in my town, copenhagen
i only walked in dr. vissing’s office out of pure luck
the doctor i was supposed to see was at a meeting
and dr. vissing happened to be on duty and the patient he was expecting did not show up
so he took me in – pure luck !
john is exactly as you expect angels to be:
tall, handsome, intelligent, and a humble man – very humble
john not only diagnosed quickly what i have
he also had a method to propose on how i could slow down the effects of this non-curable disease:
systematic exercise !
against conventional belief and current literature
dr. vising has shown with his research that you can actually build muscle
- even if you have LGMD2L – with exercise!
what type of exercise was not so important
“can i swim”? – “yes if you like it” – john smiled
and so i started to swim systematically, about five years ago
in swimming pools wherever i happened to find them – and elsewhere
besides the kildeskovshallen in our neighbourhood - which eventually became my second home
i have swam in several pools in sweden, uppsala, gothenburg, stockholm…
in pools in bilbao, new york, paris, rome, san francisco…in addis ababa, nairobi, kampala…
i just swim – i swim for my life
i am a bit like that boy patel in the “life of pi” movie
i also swim in lakes, rivers and in the sea when i find suitable water
my favourite is – of course – plaka, litohoro where swiming comes with a special treat: the view of olympus mountain above you
and in nea chora in chania - when i visit my beloved maich
and the marvellous beach fanari in epanomi – an absolutely superb spot
it was not easy at the beginning – i had to stop to rest after each 50m lap in the pool
but i continued swimming
now my regular training is 1500 m non-stop - 4 times a week
this is why i started swimming systematically five years ago
yesterday’s "christiansborg rundt" was not only a bet with myself
swimming 2 km in open sea is something i do quite often
especially during summer early mornings in plaka i swim to leptokaria and back
but this swim race yesterday - the "christiansborg rundt"
2 km around the danish parliament
in the copenhagen canals yesterday was different
i did it not only to prove to myself that i can – yes i can !
but especially because i wanted to show to my angel that he was right and to thank him for this
and to him is where i will offer the medal i won yesterday:
to dr. john vising
this one is just a cheap medal
a medal that i together with 1000+ other swimmers received
all those who finished the 2k course received the exact same medal
but each medal has its own story
my medal is from someone who was not supposed to be in the water yesterday
someone prognosed to watch the event from a wheel chair
someone who might not even be alive to watch – dead from heart failure
i write this long message, mainly, as a tribute to my angel - doctor john vissing
but also to remind those of you who read so far some banalities with which facebook is abundant today
this banality, for example, that when you think you are close to what seems like an end
it very often is a new beginning – it is true!
and it is up to you to turn it around - up to you and your angel
and also the banality that you have to believe in yourself...
you 'll be surprised - but it is also true!
and that you always have to be persistent – never give up – never !
true also !
…banalities, but when you are in the cold water, being kicked and pushed
you are alone with the seaweeds rubbing your face
swimming over beer cans, bicycles, old furniture…
all these things people throw in the canals and remain sunk there
urban wrecks
stroke after stroke, these banalities drill into your brain in funny ways:
-shit! – you are not dead, man!
-you made it so far you fat man!
-watch this old lady on your left - you aren't in your village you brute!
-make room to this testosterone bag who tries to pass you swiming buterfly - the pompus ass
…it’s a good feeling this one:
to be alive and kick water !
i know that my disease is not curable – not until today
it is a very rear disease too – hence no much research moneys is spent on it
it is not likely they will find a cure in the near future – perhaps not in my lifetime
dr. vising often reminds me that with my condition
i will be wasting muscle faster than i build it - eventually
and eventually i will have difficulties to walk
“but” - my angel loughs with a hearty lough:
“don’t worry, there will be long time until this happens
we will both be too old by then
and it won’t matter anyways because we will have kicked the bucket by then”
yes, john, and until we kick the bucket...
i keep walking – and of course - thanks to you :
i keep swimming !..
