Small adjustments of the truth

If you ask a local person “Possible?” and the expected answer is as simple as “yes” or “no”, you might not get a true answer. The answer you might get is the answer that the person you asked thinks(!) you want to hear.

Why?

Probably its an act of politeness or even respect, but the answer is not necessarily true in a western meaning and I am a westerner.

Let me give you an example

If u ask how a third person is doing and the asked person thinks you are really interested in the wellbeing of the third person, you will probably get the answer “she/he is doing good” – even if the third person is quite sick.

Whats your problem with something minor like this?

My personal problem with such a minor adjustment like this is that I am really having a problem in building up trust and adjustment after adjustment is making it extra-hard for me to trust.

What does this have to do with Multiple Sclerosis?

The MS shook me in my foundations. The diagnosis literally took away the base that I was standing on and left me in a free fall. Loosing something quite essential like my ability to walk, slowing down my previously rather eloquent tongue and so much more.

So I long for trust – maybe more than ever before in my life.

Kuala Lumpur and me

I am on my so-called “visa-run” in Kuala Lumpur now. I booked a great place on a platform I don’t want to mention here, but you all probably know it. The place is quite good, the pool(s) are great, but probably Kuala Lumpur and me will never be best friends.

Why not? What is it you don’t like there?

Kula Lumpur is a mega-hot and mega-big megacity. Maybe its simply that. KL is very dirty and very hectic (probably like most cities classified as megacities), but maybe the reason is in my head like so many things of my disease are.

Kuala Lumpur-Pool

How do you mean?

I was negative about my visa-run. I expected it to be annoying, hot and hectic, that may be the reason why it became exactly that. Some kind of self-fulfilling prophecy

Like so many things, fears and negative expectations seem to become true in Multiple Sclerosis.

What to do about it?

In my opinion meditation and generally calming down ones mind might help. Unfortunately I failed to get it in my stubborn German mind so far. Maybe it would have changed this whole trip.

How Indonesian people deal with me having MS

Meanwhile I got in contact with quite many local people and no-one of them, except for some Medicine-Students, has ever even heard of Multiple Sclerosis before I explained them. “Aaah! Like stroke!” is what I heard quite often. “Yah, but a slow one.” is my reaction on that. Than we usually laugh a bit.

In general all of them reacted with great sympathy and very helpful on me and my western disease they never heard of. I started to know the most important vocabulary in Bahasa on it like “saraf” (nerves) and “sekarat” (dying). Then it takes another minute for me to explain that not (at least hopefully not  so soon) but my nerves are dying slowly, but that is normally all I need to say.

I am very happy about  the wooden stick I am walking with, because then I don’t need to explain I ain´t drunk or drugged (“saya tidak alkohol”) and that since some years I don’t even touch alcohol, which usually surprises them. 5 year old Jasmin and her best friend “Selfie” (I still didn’t manage to find out her real name, which is kind of similar to Selfie and isn’t “Sophie”) are even very keen on playing with the stick during my lunch.

Jasmin, Selfie and me
Jasmin, Selfie and me

Jasmins aunt had a stroke, so she’s a bit used to slow walking people like me, even offered to hold my hand while walking. Maybe as an extra-bonus she could make Selfie playing with the stick while I was walking, but I don’t know if that really was part of her motivation, haha.