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.

 

Jamu or how the Bali-Magic hit me again

Among so many other things, the famous “Bali-Magic” to me is how often Bali is connecting  lose ends  with each other. Things that don’t make sense being seen as single things/events/people/whatever but putten together  with other lose ends (by Bali so often), they are building up something completely new, big and and maybe even meaningful.

To me thats one of Balis most amazing “features”. Let me give you a simple example.

Everyday early in the morning an old woman is showing up here, wearing a big basket on her back, filled with plastic bottles containing a rather hard to define orange(?) liquid. Altogether I guess she’s carrying 20 kilos through the heat. I tried to speak to her once, but she didn’t speak or understand a single word of english and, try it yourself, its kind of hard to explain more complex things just by using hand and feet.

Anyway it turned out to be Jamu (German Link / English Link), a traditional Indonesian medicine. Consisting mostly of Kunyit (Kurkuma) and Jahe (ginger) and some factor X. My neighbor spoke of “kencur” and many other things which are definitely healthy to any body.

Jamu
Jamu

The mentioned neighbor has a 3 month old baby and buys the Jamu every day. In her rather poor english she explained me that it seems to be very important for breastfeeding her baby and offered me to buy another bottle for me as well every day. Its just 5000 rupiah (around 0,30 Euro-Cent), the appearance of the old lady is much ahead of my wake-up-time and Jamu a welcome  addition to my daily food-plan (not to mention it fits very well in my budget.)

Thank you, Bali-Magic for another step on the road.

UPDATE 18.05.18:

I didn’t know that during Ramadan many Muslim-people living in Bali are seeing their families on Java during that month, so many warungs are closed and much of the public living goes on a break as well. Unfortunately my Jamu-dealer-woman won’t be here either and I have to look for another source…

Jamu´D

MS-Theories Pt. 3

Now I  am living in Bali (“in Asia”) since 15th of march. Milk- and Gluten-free (important lessons with Böttcher and Jelinek) and more or less without meat (every other week some chicken) or industrial produced food.

I am not trusting in any Pharma-related issues or products anymore, only see a doctor in case of emergency (never happened in the last 2 years), some really serious sicknesses (never happened in the last 4 years) or to calm down worried people around me (happened once in the last 2 years).

The longer and deeper I listened to myself, the more I realized the key to my health is somewhere within me and I moved to Bali.

Bali - Island of Gods
Bali – Island of Gods

MS-Theories Pt. 2

As I said, I realized pretty soon after my diagnosis, that I couldn’t expect much support from nowadays western medicine. I was looking for cases where MS-patients made it without the, in my opinion helpless, medicine or doctors.

As role-models I picked among others Sven Böttcher and George Jelinek because to me they were showing the most promising ways out of that disease. Basically a diet, exercises and meditation, but instead of stabilizing I slowly, but steadily, got worse.

My walking distance got fewer and fewer, my fatigue got worse and worse and my balance was hardly existing anymore. Meanwhile I had become vegan (+seafood and fish), changed my diet, stopped drinking alcohol, stopped smoking, started to do yoga, quitted my stressy job and started to study. I basically had turned my life upside down.

It didn’t really help at all, but I boosted my immune-system, lost some unhealthy kilos and started  to realize many things. In fact I am still learning and realizing things about me, my body and my disease every day.

Friends, Family and MS-Theories Pt. 1

I live by my fathers support and the rent my brother is paying for living in my (unfortunatly dead since many years) grandparents apartment.

My balinese family is basically the family of my friend and brother Oki – owner of kokiktattoo. So I am in close contact to his wife, children and parents.

Kokik and his wife

But let´s get to the point now.

I am officially suffering under Multiple Sclerosis since my diagnose early 2012. Tracing back my earliest symptoms like Tremor and Fatigue, I am getting on the year 2000. As it is scientifically not possible to determine which kind of MS it is and I can´t remember having any relapses, my doctor defined it as PPMS (primary-progredient).

Might be.

After the first shock, I did quite some research on my own, basically I studied my kind of MS, lets call it PPMS from now on. Pretty soon I realized that I cant expect any help  from modern-western medicine which was the first step in leading me to where I am right now: Renon / Denpasar / Bali / Indonesia, the island of gods.