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Ataxia Support Network

Coping


#1

I have recently thought about my "strategy" how I cope with my ataxia. There is probably no right or wrong, just an observation.

As far as the general outlook is concerned, it seems that I am coping too well...I see no need to,sit in a corner and cry all day. True, I still work full time, use no (walking) aid, even sometimes ride my bike and the outlook to end up in a wheelchair should scare me. But in this case I can always evoke the image of the proverbial Syrian widow.

What is harder (but less important) are the inadequacies of daily life: balancing a tray in the canteen and steering clear off my coworkers, buttoning a shirt, unscrewing a screw or writing a sentence. I get impatient and grumpy.


#2

I found life more awkward when I was diagnosed at 16 than I have after using a wheelchair. Though there is an insane amount of prejudice about disabled people. For examples:

1. Steering Clear of coworkers(/anyone!) is not a problem because a lot of people don't want anything to do with disabled people so I don't have to concentrate on avoiding them.

2. I remember the insane difficulty of balancing a tray and the many times I'd have the same conversation about why they can either serve me at a table or clean up the mess that's about to happen.

Hiding something that's not immediately visible is more difficult than not. I did it for as long as I could though and if I had to again I would. What is the proverb about the Syrian widow?

Da liegt der Hase im Pfeffer!


#3

There is no (public) proverb, just check Schumants blog. This was just to show that however bad you’re off, there is always someone worse off.

Being diagnosed at 16 is a different story than being diagnosed at 48 (like myself). Or at 7. Still in my opinion, the above holds true.

The unfortunate thing about ataxia is that it shows. Once I have already been suspected of being drunk and there is certainly a much higher number of people that did not bother to confront me but kept their thoughts to themselves.

I am thinking of asking my GP to prescribe a walking aid, although I don’t need it yet. Reading your comment this doesn’t sound so wise. Why?

Da beisst die Maus keinen Faden ab!


#4

'There is always someone worse off' is that like schadenfreude. I don't understand why people have this thought process. It's like saying blue is blue.

Yes ataxia shows but you can (sort of) conceal it and people may assume you are drunk or on drugs but isn't that just them being wrong.

A walking aid may work for you; I'm not pro or anti. Whatever works.

Alles hat ein Ende nur die Wurst hat zwei!


#5

My wife warned me that this was going to happen. Thanks Stephen for pointing this out. Of course my opinion has absolutely nothing to do with Schadenfreude. Schadenfreude is completely devoid of empathy. There are at least 3 indications: this concept of coping is not my original idea. I do not know personally any Syrian widows. If I had Schadenfreude I would not use this forum to express it.

To get my fill of Schadenfreude, I watch Homer Simpson being hit repeatedly by a motorized garage door.

I also only partially agree on blue is blue. Yes, we're all humans and all (or most) have ataxia, but every human being and every ataxia is different.

Today I decided to get me a walking aid. Currently just to indicate that I'm disabled rather than intoxicated.

As you seem to know all German proverbs, here is my favorite Persian one, of which I unfortunately forgot a fragment:

Mama ke *missing*, sar-e-bache kaj miyad.

When the miwife *missing*, the baby's head comes out awry.

Hopefully until next time I will have found out about the missing part


#6

As I get older, I get frustrated by the things I can no longer do. After some frustration, I accept it and adjust to it. I just chalk it up to getting older, although for ataxians, this seems to be accelerated. My theory is to do what I can, while I can.