Since my last blog a lot have happened in my life.
At least more than usual when all your life is about fighting for as natural an ability as being able to swallow your food.
I have got 2 incurable rare painful diagnosis
in my oesofagus after an accident in aug 2016. One in my oesofagus and one in my stomach mouth. That means, that no matter how much my nice medical specialists want to help me, there is right now (2018) no recognized and documented cure which can help
me out of my situation.
They need to develop one or several cures / kinds of surgeries, and it might not succeed in my time of living.
The problem is that there are not very much patients with these 2
diagnosis, the ones there are, are very weak and have given up their lives waiting for the un avoidable.
But the scientists cannot develope new surgeries, or medicine cures without experimental patients. We are actually talking
about a need of esophagus patients who on top of their own pains and lots of unpleasant medically examinations are willing to go through much more experimentally surgeries, more unpleasant gastroscopies, and more pains, and following conseqenses than other
oesofagus patients in order not only to help themselves, but also to help other coming oesofagus patients in the future.
Almost nobody want to do that.
It is painful and they give up instead.
When I was asked in September this year about becoming an experimental patient within the Oesofagus subject area at a certain hospital in Copenhagen I felt there were no other solutions for me if I should have help myself, than giving my own living
body up to the science,- and I was not in a moment's doubt when I heard it could also help other and much more ill oesofagus patients.
Immidiately I said "Yes, why not? I might as well do it, as anybody else,- and then you do not have to use an ill
and weak small child for your experiments."
The only trouble I have except for more pains and unpleasant experiences is that I lose my voice after each surgery and gastroscopy, and I cannot get free help from the society to
train my voice after the extra gastroscopies and surgeries.
If you don´t have a voice, nobody hears you. You don´t exist.
But immidiately, I got a time scheduled for my very first experimental surgery which
took place a very short time after, at the end of September this year. The effect should be temporary, as they went through my gullet, with calm me being awake during surgery, and some neurotoxin was injected in my stomach mouth to relax it making it possible
for my food to pass. The toxic effect would disappear over time. It worked for some while. Got some great tasty food in a period until the effect ran out as exspected.
The effect has over some time gone now, so
I am ready for my next experimental surgery or treament. I don´t know if it will be before or after Christmas, which is a hard time for me as eating and singing and the feeling of community it is giving people, is all, Christmas is about.
If you, like I, cannot eat or sing you are not a part of the community. You are a lonely outsider during a traditionally event where there should be a place for everybody.
Just not for me.
When people eat delicious food at the Christmas tables, I am either not invited, or I sit with a glass of water and watch them eat my favourite food. I don´t
know if you have notized it, but:
I AM ACTUALLY EATING ALL YOUR DELICIOUS GOOD-SMELLING FOOD WITH MY EYES!
my first experimental surgery worked for a while and it gave me some hope and energy to bring myself on to my own next development step in accepting the state of fate, and my next level is to lower my stress and traumas, I think.
is stressing me to eat at the place in the old apartment where this accident happened in August 2016. The traumatic experiences there continues to appear in my eating sitiation and my oesofagus goes into spasm, no matter what we do. Therefore, since my last
blog, we have emtied the old apartment, packed all my artistically wokshops away, made it ready and put it up for sale and moved out of it.
Also this year I have spent time on another of my passions, taking care of exotic plants
other people have given up. Giving them a new life is a very helpfull energy-saving and healing theraphy for me. I will definitely continue doing that in the new year. Unfortunately, I don´t have a big heated orangerie, but some day I would like to work
in a place like that both as an artist and as a gardener, because my oesofagus handicaps would love it. Very destressing. Dreams, dreams, dreams..... - is what hope is made from.
As for my voice trouble it will continue to appear
each time I get gastroscopy instruments thrugh my gullet, and I am as an experimentally patient not justified to get free help from the same society, I am helping, so I am on my own creative initiative again:
I googled "gratis stemmetræning" (free
voice coaching) and found a website where DR for an experiment looked for a few people without a voice who wanted free voice traing. Also, one of my biggest dreams is to be a part of a choir or to sing as a vocal and it is not going to happen if I don´t
do anything about my situation myself.
So I applied and got it.
What I forgot is that nothing is free. Everything has a price.
The 12 hours of great experiences and voice coaching with some
other lovely hummer persons who also cannot sing I got from DR 1 month ago I wouldn´t have been without. It helped me a lot on several levels. THANK YOU! ❤
Off course you can discuss if it is OK that I have to use these alternative methods, making a fool out of myself between 1000 brilliant singers and in front of 1.000.000 critically TV- viewers and that
I am forced to expose myself and my weaknesses, in order to get the help I need when I myself help an ungrateful society, which is leaving me alone with the consequenses of my helpfullness. But "the goal is pouring the drug" here, I think. I got my voice
coach help. It works for me.... - At least until my next surgery, where my voice trouble might start all over.
While I am writing this blog, I am actually also SMS´ing with the nice TV- crew about some practically stuff, graphic
name signs, a.s.o...- I guess, there are still some audience tickets left for the live TV-show on Sunday Dec 2nd 2018 on this link:
The Danish languaged traditional live show " Danmark synger Julen Ind" runs off at Danish broadcasting Compagny, at channel DRK Sunday Dec 2nd 2018 8PM ( Kl 20.00), where you can experience and meet VERY shy me and the other lovely persons
from that fantastic voice coaching day.
I won´t tell you how my 12 hours voice coaching went, just watch the show.
Sometimes, it is from people you least expect it, you get the biggest surprises!