The privilege of being disabled

After my diagnosis, I got ridiculous 40 disabled points, which is almost nothing. That means kind of 300 Euro tax advantage in a year, or something like that. I really have to shake my head, I have an incurable disease, my life feels like a carousel ride in my head and then that. I’ve heard that in America MSA patients are treated in the same way like ALS patients and automatically get 100%. It is said that MSA is like ALS on drugs – which is certainly true because anything can happen, at any time. For me it is, as if every day fate would flip a coin: “So, what kind of symptoms do we want today?”

I was declined that time, and being said if things gets worse, I can make a new application. Thank you. Worsening is every day. I understand that MSA is a rare disease and people don’t necessarily immediately know about, that it is not a widely known disease, like diabetes or stomach ulcer, but why do people sit in these important positions and decide, if they have no idea? What kind of people are they, what did they learn? They should know this disease, that’s their job! And if not, then they should inform themselves. People’s lives depend on their mood! Then they should have learned gardeners… I have six months this illness behind me (officially), of course I have a worsening.

Recently I had to go to the doctor, because the date on my OT prescription was not correct. What should be a short trip, because the nurse can change this, and I don’t have to go to the doctor. Usually, when I go to the doctor, I park (despite two, always empty disabled parking spaces) somewhere on the end of the world, kilometers away from the practice. First, I have to find a parking space, second, it has to be one, where I have enough space to get out of the car and I don’t scratch my car, or the car of my neighbors. I don’t even drag the walker with me, because I couldn’t lift it out of the car anyway (despite carbon, which of course is not covered by the health insurance…) So I park somewhere and try to reach the doctor with the cane, sit on the fence to breathe, wheeze like a racehorse and am glad not to have dropped in a public.

So I parked “quickly”, on one of these disabled parking lots, I just have to get in and out, I thought, nothing is happening, and I’m not doing it out of laziness, it’s actually mine, I dare.

That’s how it was, only when I returned, a policeman stood next to my car and happily gave me a fine. I told him, of course, that my procedure runs on a disabled person’s identity card, that I have a neurological disease and only had to see a doctor quickly. The policeman then examines me as if he had any clue and asks me what I have. Exactly. He wants to know, where my GP never heard of MSA. Inside myself I roll my eyes. I wave off, it doesn’t matter, he should please move his car away so that I can drive out. Is everything pointless, what am I supposed to explain my illness and beg here on the street? Then I will pay the fucking 35 Euro fine. Inside me I think deeply “I wish you, only for one day, that you feel like me”. Police, your friend and helper…

The picture perfectly describes how we affected people feel sometimes

I heard today that you don’t have a chance anyway, on the highly desired disabled parking lots as long as you can walk. That explains why all of them are always empty. Because those, who “have the right”,  don’t get out of bed and don’t drive anyway.

Thanks a lot, my life is great now! According to the motto: everything that doesn’t kill me, makes me stronger. And when I am dead, I’ll get a disabled person’s identity card, then I have certainly fulfilled all the criteria then, then I will be quite incapable of moving….

Photo / suze / photocase.com and #All WheelChair Stuff

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