Friday, 22.11.2019
Hello my dears,
One year ago today I was sitting at Artemoda @ La deutsche Vita and working on my website to collect the donations. On 18.11.2018 my first donation day began. Today I sit in Artemoda @ La German Vita and write a book about everything that was;)
I have a spiral staircase in my apartment that I had to walk up on all fours before treatment. I came down with much concentration and a firm grip on the railing. I lacked coordination and balance. Today I walk up and down the stairs in a sure-footed position. Often I hold a laundry basket in my arms and smile over both ears – I love these stairs! Yesterday I went down the stairs with a full laundry hamper under my right arm and the vacuum cleaner under my left arm. I did not want to roll up the cable of the vacuum cleaner, it hung casually next to my body. And so I climbed sideways and step by step down the spiral staircase. I’m so happy, what fun !!
My spiral staircase
And it can not be put into words how tragic and scandalous it is that the doctors tried to persuade me that MS was incurable. The fight goes on! There are hundreds of thousands of people out there who getting told the same lie. After my appearance on RTL, I received many inquiries from those affected and heard many stories. Almost all neurologists speak out against the HSCT or express themselves unaware. Very few indicate that HSCT is the only possible chance of recovery. Yes, HSCT is a curative approach and the only way to stop MS – the sooner the better. The sooner, the more chance of regeneration.
I have found a portrait to not describe those affected by what a person with MS diagnosis feels like. I think it’s very fitting and pretty much describes what’s going on in an affected person:
We got caught in a trap. Getting the MS diagnosis is like being a wild animal that is literally in a trap. At first it’s hard to believe, you do not even know where you are right now. Gradually, the panic increases, because you realize that you can not come out. Again and again you hear: incurable! incurable! Like a wild cat I jumped against the walls and scratched and rapped. So many times I lay on my floor, howling with rage. I really have a very strong will and I usually know exactly what I want and what I do not want. And I wanted to get out of this trap! It took me a lot of effort to understand that I have to live in this trap. “Outside” there is no more for me, my life will now be this trap. It takes a long time for the brain to get it started. So. And then somehow you try psychologically to survive in this situation – how? One tries to talk life in the trap somehow nice. So I have tried to accept it and to find a way to deal with it. After all, you’re not dead, you still live – just in a trap, but that’s still alive. And nobody has it easy and so on.
And all of a sudden, the topic of stem cell transplantation and 90% chance of stopping, the word “cure” comes across, albeit cautiously. This is the door that suddenly opens! After finally having your brain ready to accept this trap, this door suddenly opens!
Most people will believe that you are about to jump through this door, out of luck. But no, that’s not how our psyche works. An animal that has been locked up for a long time does not immediately jump into freedom. For example, a bird in a cage who has been in the cage for a long time – if you open this door to the bird, it will not fly out immediately. He will just sit there and try to understand the new reality for himself.
Incidentally, I hate locking up animals – that deviates a bit from the subject, but I’d like to say it anyway. Most people justify themselves by saying yes, but in freedom they would not survive! Or: Look, he does not want to get out!
Yes, we all want to be free. Nobody likes to be trapped. And when the door opens suddenly, we need a moment. But most of us will go through!
There is no naive going on, as the doctors think protectively about us. We are also very afraid. Fear that hope will not be fulfilled. Fear of our own courage and that we fail.
And I tell you from my own experience: when you have gone through the door and are free, then you have not forgotten the life in the trap. You are not virgin in freedom. And the shadow is still there. One is traumatized. And that is also understandable, because in the case one is broken. Many symptoms remain and remind of the trauma.
Right now a report is going through the internet, maybe one or the other of you has already seen it. There is a man drawn by his MS so that he can only move his head. He even needs an assistant to clean his nose. He is currently fighting for the drug for euthanasia. To put an end to his life in Switzerland, he lacks the money. People are discussing whether it is right or wrong to give them this medicine. In this context, the word ethics often falls. I think this whole discussion is unethical. And I think it’s irresponsible that it even got that far. This treatment of HSCT for MS has been around for decades! But we are left in the belief of incurability. For legal reasons, for legal reasons, for many reasons.
Medication disguises the progression. On the outside, they slow down the relapses and deliver great results in the studies. But in the end they have no influence on the progression of the overall course! The HSCT, however, has a very clear influence on the overall course! And that’s the difference. And that’s why it’s a scandal that drugs are prescribed without even mentioning the possibility of HSCT!
I will write my book and I will continue to attend congresses and talk to people.
Soooooo many people have helped me to get out of the trap. Every time I go up and down my spiral staircase, I think of you!
I will use this flow, this wave, this energy until this trap no longer has to be a trap for everyone, but just a little detour in life. Life is so precious and valuable!
I created a group on Facebook. Here are other patients who have also done HSCT as well as interested people. There are occasional meetings to meet HSCT Warrior in person. I know how overwhelming it is to learn about the path of the HSCT. Whether this way is the right one or not, only everyone can decide for themselves. But often you just do not know how to decide. That’s why we offer these meetings. We advise neither to nor from! But to decide for yourself whether this can be a path or not, personal encounters may do just fine. Just to get a feel for it. How valuable that is, I have experienced myself.
So if one or the other person is interested in finding out for himself if this is his way, here is the link:
Meanwhile, some of the group have already started and have gone this way. Others are still in the process of organizing money. Others are still thinking. And many keep in the background and just read along.
We do not chatter anyone. The only is: after the request, I write to you in the Messanger and ask for the background for the request. So we filter out the people who just want to stare, without being affected (yes, they are synonymous). We try to give the best possible protection because the subject is simply personal.
So that’s it for now. Many greetings!
From January I would like to go back to work and I am looking forward to it!
I will write something again soon. Bye for now!