Box Blog Dec 31th 2018 (278591)
2018 for me became the year, where my art had to give place for other activities and passions and where I started creating myself a new life on new and not so good conditions as I had before the accident in 2016. Anyway, at the beginning of the year I succeeded in getting 2 artworks selected for a juried exhibition in New York and 1 selected for a juried theme exhibition in Minneapolis, USA. But it is not funny at all to participate with art at an exhibition where you yourself as an oesophagus patient are not able to travel out and be present and the important networking in relation to the exhibition which can give you artistically jobs, customers and art orders you are not a part of at all, just as you cannot be present and sell your art yourself if you spend all your energy all day long in a foreign country swallowing food which is fixed in a partly paralyzed gullet and a ditto stomach mouth. It drains you for energy and it is stressing living this way! My oesophagus cannot handle stress. Therefore, I have not created or sent out any artworks for juries since January this year. I reached to created an illustration for a talk in Gentofte, Copenhagen, before I decided to have an artbreak on unpredictable time where I instead will focuse on something more important: Namely being medically examined and diagnosed in order to get treatment, so I can get on with my life. My 2 diagnoses, 1 in my gullet and 1 in my stomach mouth came in Aug-Sept but there are no available treatment for them. They are incurable. Therefore, I will spend a part of my new future life being an experimental patient hoping that some treatments can be developed in my time of living. All ready, I have gone through 2 experimentally surgeries in a surgery cyclus which I as it looks right now shall learn to live with for the rest of my life. I must have a surgery every 3rd month with a temporary effect in order to be able to swallow my food for approx 6 weeks. After that effect disappears over 6 weeks which are resulting in hunger for a couple of weeks until I can get a surgery again. Difficult to get used to. Difficult to get my private life work. Difficult to make a social life work and almost impossible to adjust a working life which fits into such a physically hard surgery cyclus with changing lewels of energy and weight fluctuations of 17kg and a missing voice. Also, it is deeply uninspiring for me artistically. When I miss inspiration I use to put away all art and do something else for a while or just relax. Because everything I can, I have learned from my life crises, - and right now my art symbolizes the life and freedom which I have lost. I need some time to get over it. Psychologically I have kept myself above the water by working on a new home create something beautiful to watch in it, and move away from the accident location, my old apartment and then throw myself over a life long passion: Exotic plants which I can enjoy when I don't have energy for anything else. For example in the last 2-3 weeks in my surgery cyclus up to my next experimental surgery. For the time being my small orchid collection is very active. In a few days another 2 big orchid will "explode" in a New Year firework which reminds me of the long wonderful and heat summer we had in DK in 2018 from April to September where I grew my flower passion both outdoor and indoor. I am looking forward to the springtime and I have not lost my dreams. In this lifetime of mine there are still a lot of things I want to try. Happy New Year!
I MISS The Woven Heart Art Museum, and for me there is no daubt that we will succeed in boulding it up somewhere else. Right now I am convinced that it was the right decision to sell the place in 2017 because right now I feel drained for energy, have
shaking eyes, I am dizzy and very tired because I have not had enough to eat and drink for a whole month. I have 2 rare, painful, invisible and incurable diagnoses, one in my gullet and one in my stomach mouth which mark my body and prevent me from having
artistically activities. Kilos are trembling off my body. Thank God I ate some probe preventive kilos on while I could right after my latest experimental surgery Sept 26th. 2018 where the temporary effect now has gone as expected.
During the upcoming week it will be decided whether I will have to go through my 2nd surgery as an experimentally patient or not and if it will be before or after Christmas. I LOVE good food so I am hoping for a sheduled cancellation time before Chrismas, so I can get my surgery and enjoy the Christmas and the delicous food as much as everybody else. Right now I am occupied bringing up my vital digits to the wanted level, such as blood pressure and blood sugar and to keep them there until I have had my eventually surgery which is a huge challenge when I am eating less than a newborn baby.
....- and just one more thing:
Remember to enjoy your life while you can!
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!
But 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.
It 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!
/ Lisbet Lærke.
This website is now updated and supports secure connections with HTTPs and SSl certificates. Took only 1 day to repair it.
I wish I could say the same about myself.
2 years ago I was hit by an accident which damaged my gullet and ability to swallow my food, and since that day in August 2016 I have tryed eating liquid food. Each meal has been very painfull. I felt no progress at all during the 2 years the other day, when I visited my meditrician at the hospital for control.
The occasion was that about 3 weeks ago I was acute hospitalized because I felt some food had fixed itself in my gullet, which has felt paralyzed, "dead meat"- feeling in my gullet ever since that damned accident 2 years ago.
It feels like being choked in the food and drowning in liquids as milk, water and cold thea. I experience this almost 2-3 times each week for 1-2 days, and every time I feel like I have ran a marathon when it is over. I am exhausted each time it happens.
I feel exhausted all the time.
But this time I just didn´t have the strength or energy to loosen it myself, and everything I ate liquid food or water, it came up again. So after 2 days I got hospitalized, got some water drop, examined and after 3 days more almost without food or drinking sent home with the answer that this handicap is impossible to treat, simply because no treatement has been developed for this diagnosis dued to lack of scientific research.
"Ineffective Oesophageal Motility," which as far as I was told less than 3 persons in Denmark have. Meaning that there are no big patient organizations in Denmark to care of my rights or to get help from. Therefore, I have a politically unimportent handicap / illness when we are so few patients, meaning that people with this illness at the end of their lives are hospitalized maybe even for years with a stomach tube being layed like vegetables kept alive when they have become too skinny.
Luckily for me, I have never been "a Twiggy" girl, and as a former slim plus size model with a normal relation to food, I think there will become 13 months in a year before a stomach tube will be actual for me. My but is too fat. I don´t look like a concentration camp prisoner, but dued to the pains I have when I eat, I have lost my former natural hunger feeling and thirst feeling and the joy of eating together with other people. I eat to survive. Not for anything else. I only eat what I need to eat.
I each day put food and water in my mouth, trying to swallow over and over again, hoping it will pass down though it hurts.
If you do that, it is because you want to have a life. You want your life back.
I want my life back. Period!
I and everybody around me shall "learn to live" with my new situation and cronically invisible handicap which has smashed my flowering artistically career, a great one as a professional international multi-faceted artist which I have built up the last 9 years, since July 1st 2009.
But I can´t.
The people who told me that haven´t been following me, they don´t know that my strongest inborn ability is located in my mind:
I NEVER GIVE UP!
Please, read these words above and learn them!
Right now, I just can´t see any way out of my situation. Can you?
I think I can use this part of my personality which gave me this splended artistically career to try to get better, but I will never be able to travel outside Denmark again, because no hotels or restaurants make the liquid food I need, and when I am at an exhibition travel I have no time for shopping food ingredients at the markets or making the many small meals during the day I need in order to keep up my weight. Also, I cannot be entertaining or networking at a biennale or other juried exhibitions from 10 Am to 10 PM for 5-10 days selling my art, if I don´t get anything to eat or drink at all on the trip. So for the last months I havén´t been sending out artworks for juries, though you have continued sending me opportunities and great calls. Even calls for art awards I have missed. Thank you.
Dued to my health I have almost stopped creating art on paper, cardboard or canvas for the time being. No new artworks for this website have been finished for months, because I spend my meagre working time to finish creating furniture crafts, ceilings paintings, wall paintings and restoring the apartment where the accident happened. We might put it up for sale some day. The last year I have worked on restoring our new apartment which we bought in Sept 2017. We plan to move into it, trying to built up a new life away from the bad memories. We need that.
I love creating furniture craft, and renovate these apartments in my own pace without stressing, but my united art production and sale on movable medias is now lower than 5% from what it was before the accident, simply because I have to prioriate myself, my health and keep up my weight in order not to get a stomach tube.
I take this lonely fight all by myself, I feel, because I have no other choises, when this handicap is not socially accepted. Hostesses still think that if they make some delicious food and put it in front of my nose I will get hungry enough to eat it. They don´t understand that I am physically unable of swallowing their very well-smelling, well-tasting and well-looking food, and it makes me very sad.
Contrary to a lot of other oesophagus patients I still feel, have a life worth to fighting for: I have no cancer. I don´t smoke. I don´t drink alchohol. I don´t use drugs. People around me who loves me. A lot of ideas I want to realize, etc... But I also have an oesophagus handicap which makes it impossibe for me to spend money on going out on restaurants, go on vacations, or having a normal social life.
It feels meaningless, and I don´t agree with the people who says that
" What you don´t die from will make you stronger."
These "clever" words seems meaningless for me. These people don´t know what they are talking about. They haven´t been trying to force themselves to eat with my painful oesophagus for 2 years and without any progress or treatment opportunities. A lot of them wouldn´t be able to do it, not even for 1 day. Each time my hard fate hits me I feel weaker and more fragile.
If you don´t die from this it is because you have an inner strenght, which keeps you alive and going on. Because nobody else helps you.
Not if you are me.
Since my last blog this website ' s domain line by a mistake has been marked with an "Ikke sikker" = "Not safe" by 123hjemmeside. Off course it is safe to visit this website! They are working on this tecnically problem, so please, stay tuned!
Meanwhile, I spend some of my time on hospital controls.
Wery depressing turn off creativity environment : Grey. Another gray. One more grey. Dirty white. Black. Routing colours at the floor means that you look down all the way through the loooooooooooooong hospital building. They miss some colours on the walls of Hvidovre Hospital, I think.
Aug. 28th 2018:
Website security done. Trouble solved. More than you can say about my gullet. Still hospitalized.