A man goes when he wants to go

Our paths crossed for a sad reason. And we spent too little time together.

You always had a kind word for all of us. For that I am now a little wordless.

Through you we learned how it is to go when one likes to go.

You broke the ice about a subject we never talked about, but which is a subject for all of us.

I have been trembling with you inside since I knew that you wanted to leave. How it may be – I have tried to understand. Because I follow you slowly but surely. How it may be when you have two weeks, when you have ten days, one week left.

On the one hand we are all sad and a bit horrified, but envy you for your courage. We envy you because you are free of the torment.

But we all miss you. Have a good trip Martin!

The long farewell to my voice and the stadium

Somewhere in the parental cellar it still be, my first recording, where I
sang full of fervor. 2 Little Italians was one of my favorites
I was 3. and this is probably my first memory.
I learned to speak in Kuwait. My first words were bilingual
” Yallah ” I shouted with growing enthusiasm from the balcony, urging everyone to hurry or move on.
That sang with 8 in the children’s choir, as a teenager there were nevertheless these Textheftächen: TOP- Schlagertextheftchen, they also helped to learn English.

I never have a loud or dark voice, even if in the stadium a besondres loud
Lehmann”.on Michi Trippels announcement: “with the No. 33 Mathias” followed. Or I me. about a foul play of the opponent with a Heeeeyyy. echauffierte.
On away trips where with the largest “choir of Cologne” 90 min was sung through. Or at night on the streets of Mauritius to the guitar John Denver and Phil Collins was warbled. Well, I always liked to sing.

With time my voice became quieter. For the first time it struck me that at the bakery at the counter the saleswomen have asked more and more often annoyed. You don’t have to worry about that at first.
Only when the first speech therapist said that we must also work on the volume, it penetrated my consciousness.
This LSVT has exercises that I have a hard time with.
I have inhibitions to shout AAAAAAA s loudly. Initially I could do it for 30 sec, now I am happy with 10 sec. This was more often my problem at work, I had to learn to shout louder in emergencies.

In the meantime, speech therapy is more strenuous for me than physio. After one unit of speech therapy nothing is going on. Not that anything else takes place, but without logo I can whisper even louder in the evening.
I can no longer cough willingly and I clear my throat more.
For my voice I bought a voice amplifier and a speech computer with eye control is requested. When it is really bad I use an app on the iPad.
Even if I can no longer talk on the phone or only breathe individual words into the phone, as I did the other day with my physiotherapist, my new iPhone arrived today 😎and the weekend before last I sang along with the anthem of the Effzeh without a voice. I was the first time this season and probably the last time in the Müngersdorfer stadium.

There was a wheelchair seat O4 height center line and Marga sat for free in the row in front of me.
So close to the pitch you can smell the grass and I always find it smells particularly fresh.
The Effzeh makes joy at the time, it was a great game.
But a long day, a late game and an uncomfortable wheelchair, brand health “insurance”, were to blame for the fact that it has missed me on the doorstep.
I managed to get up 7 steps and the rest of the way I was carried to bed step by step. You can’t expect anyone to do that.
So I will sing the hymn from the armchair without a voice.
Because I have always sung with pleasure.

My way

This is a topic that is rarely talked about, at this point as a warning to all, if you want to read on – it is about one’s own death and it is about active euthanasia.

There are many people who reject such a thing. If you have a partner, family and children. Then you live for them. Or you hold on to the belief. Well, if you have all that, I respect that too. I don’t want to judge all this, we live different lives. I don’t have all that, and I see it differently. I don’t regret that I am different from most people. 

I think about it – I think about many things – to what extent would be this a “giving up”. I just want to have this possibility to quit if I wish, I don’t lie down and wait for the end. For me it is good to have this possibility and now my head is free and I can concentrate on fighting against this disease. To be in good physical condition as long as possible, to be able to take care of myself as long as possible.

Where I didn’t have this possibility, the fear paralyzed me, because with this disease you don’t know what tomorrow can bring. Now it’s a little easier because I can quit, I could, I just don’t know if I want to.

On the one hand it is good that I had a rich life, I am glad about the world I saw, I am glad that I got to know the otherness of mankind. I am glad that I left my comfort zone, that I dared to do something. I have made some mistakes but I regret only what I have not done.

I have been living in the past for a long time. I live from my memories and in retrospect I see how great my life was.

So for me, it’s been a good way to clear my head. It’s such a miserable issue as living wills. As long as you don’t do that, it hangs over your head like Damocles sword.

Furthermore, I am in the process of arranging and paying for my funeral. That’s a little weird, too. Healthy people don’t deal with such things, they also think that they have plenty of time. But doing this is not only for sick people, because we all die. Sometime. I don’t want to leave any costs and work to my heirs and so I know for sure it will be the way I want it.

Admittedly, I’m glad when it’s all done. I can then take a breath and devote myself to the only important task: Fighting MSA!

Farewell

We only knew each other for a short time, but our illness connected us. I arrived here, at my new home, you were already there. You didn’t have the same thing as me, but your illness punished you, just like mine punished me.

A few days passed  before you accepted me. But then, when we got along better, it worked out pretty well. You were funny, the illness made you patient and gentle, you often said “yes” even when you meant “no”. I learned who of the people you liked better, who understood you better or with whom you were more stubborn because you felt misunderstood.

I have known that when you close your eyes and rest in your bed, it doesn’t have to mean you are calm and content – you often find it hard to communicate. I have often felt with you. Everything for what you made a pretty face must not have been in your sense.

We often played together, you were often calm even though I knew it was not like that. 

How hard it must be to bear this fate, how hard it must be, is often misunderstood – although everyone here meant well with you.

I watch your farewell with mixed feelings. I am saddened by the fact, even though I wish you peace now, that you are the man you have always wanted to be, that your body obeys you and that you can express your wishes simply and clearly – wherever you are.

Dear Peter, I – all of us here – miss you, even if I hardly knew you and also from a side that neither of us were in our lives…

Have a good trip, good bye!