Once upon a time…. Me – and what remained of it

I sometimes get scared when I walk by a mirror. Is it me or is it someone else? I am so completely a different person than I used to be. People who used to know me probably wouldn’t even recognize me. Just because of the cut off gray hair and the glasses I wear now. But also because of the posture, in former times I was one with stretched spine, on high shoes – now slurping and waddling like a shot penguin.

Sometimes I doubt my own existence. I am such an another now. When I am in conversation with others, I see myself, or feel myself, as before. Then I feel my inside, my character, and then I know that it is me. Because inside nothing has changed. I like the same style, the same music, the same dishes. And when this disease has taken away pretty much from me, my personality remains, and to give that away, I must be very broken.

I know that I am, especially because I can get upset about things, like I used to, and I say that everywhere I can, and even when I’m not asked.

If so, that coping with grief consists of 5 phases, which is 

  1. Denial.
  2. Anger
  3. Negotiation
  4. Depression
  5. Acceptance

then I got stuck in phase 2.

What all upsets me?

For example, that my disease is often confused with MS and Parkinson’s and those two are always in the forefront. Funds are set up, TV commercials are made… No question, both bad diseases, but MSA is also malicious if not more malicious and no one talks about it. When I see a commercial on TV, dedicated to these diseases, raising funds and generating awareness, I want to scream “Has the world forgotten us?”

Then when celebrities with their “strokes of fate” are the subject of great attention, they are given an evening-filling program in prime time on television because they came into the world with a crooked finger, for example, which is why they had to fight and suffer…. makes me puke.

I can get upset when I’m treated as the “poor sick” one, like toddlers who always left to win – even though sometimes it’s admittedly really convenient. Being treated like a raw egg, being looked at with pity and understanding drives me up the wall.

Then a more difficult thing…. A sick person is expected to be quiet and withdrawn, hobbled and with his head down. I am not, I think I am often overestimated because of that. It is assumed that I am open to others with a disease, because we are “fellow sufferers”. And because I keep my distance, I surprise many people…

Furthermore, another thing upsets me, and dealing with it is really difficult. After all, I do not like to hurt anyone, and I am grateful for an open approach.  I often receive well-meant advice and alternatives from friends and relatives, which I cannot take with hope, and filled with gratitude. Mystics, miracle cures, miracle doctors, family reunions, miraculous mushrooms, apps that heal with “electronic vibrations”, very alternative methods… I should always follow these suggestions and try them out, even if they often cost so much that I could never pay for it, but I should, my health depends on it. People mean well, sometimes it just doesn’t make sense, and if I don’t follow these suggestions, I am labeled as negative and ungrateful. But the fact is that I know a lot of illnesses and stories and if someone would come across something that helps, I would know it for sure. And I do not believe in very alternative methods…..

Then here is a certain breed of people that I hate. People who help, out of some profit motive. It is often not even the financial profit, I have met people who want to polish their battered self-esteem with it. It is not difficult to stand next to a terminally ill person as a “great one”. Thus one reaps applause from his fellow man. Unfortunately, often at the expense of the person in need of help, because a decision is forced on them and these people often can not defend themselves.

Then consorts upset me, who think that it is for me anyway no matter,  anyway no one wants me anymore, and I take now everything. Unfortunately, since my illness I have had encounters with people whose attitude I could hardly believe.

What I really hate is when people think I’m stupid because of my illness. That also happened a few times, I just look like a drunk, but I only look like that. And if this reaction comes from people who are not “in the picture” at all, then I can still understand it. But this kind of treatment often came from people who knew exactly what was wrong with me. My behavior is blamed on the illness, if I have something to say, it is not listened to at all, it is waved away “it’s all right”.

So there are still some things in this world that I don’t like. I didn’t like them, or I wouldn’t have liked them before, and that’s how it stays now.  I am glad and reassured that in some I have remained as I was. Some things never change and some change too fast. Yes, sometimes I am lost in the madness where I need to fight for every little thing to keep a little piece of MYSELF. There is enough to watch out for with this shitty disease, you could save yourself the trouble.

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