Published on Multiple Sclerosis International Federation (MSIF) Website on 2008

and it was translated by MSIF London into French, Italian, Russian, Spanish, and German


“Help me with empathy, not sympathy”  [1]

I was born in Bandung, Indonesia on July 3, 1971. I’m a single parent with an 8-year-old son. I like writing very much. I have written several novels, short stories and poems under my secret pen-name. These works were published in some newspapers and magazines, and also on my internet blog. Besides writing, I also play the piano. These two hobbies help me to relieve my stress (I think stress is one of the main triggers for a person with MS suffering a relapse).

I have a BA in Japanese Literature and a Master’s in Philosophy. After I finished my studies, I worked as a Japanese Lecturer in a university in Bandung. I might have continued teaching and now live happily with my husband and my son if MS hadn’t almost turned my life upside down.

I will always remember the moment when the doctors diagnosed me with MS in 2001. It was spring in Japan. For most people, the spring, with its sakura flowers, is always so beautiful, but for me that spring was the most awful I’ve ever experienced.

I was an exchange Lecturer in an Asian Language School in Shizuoka, Japan, when I suddenly had a splitting headache, lost my sight in both eyes for about 10 minutes and the right part of my body became paralysed. My guarantor sent me to Shizuoka Saiseikai Hospital where I had many diagnostic tests, including an MRI (Magnetic Resonance Imaging) and a Lumbar Puncture. These tests finally showed I had MS. My treatment was an injection three times a week, one which I continue to this day.

My life really changed with the first relapse. I had to use a wheelchair for about six weeks and also had to accept that living with MS in Indonesia wasn’t going to be easy. At that time, there was very little information about MS in Indonesia. When I told my husband and my friends about the disease for the first time, they often mixed up the name of the disease with osteoporosis or cirrhosis. MS’s unpredictable characteristics also gave me a hard time. I was often ‘accused’ of lying because one moment I seemed so healthy but the next I suddenly seemed so weak. But the hardest time I’ve ever been through was when some people thought that my disease was the same as AIDS. Although I explained continually that MS is not a contagious disease and totally different from AIDS, many still excluded me socially.

My former employer couldn’t understand MS either. Although I had explained and I could also show them that my MS would not stop my productivity for many years to come, they held up my chances of promotion. In 2004, I had my second relapse. I was in a coma for five days. When I woke up everything had got worse; neither my husband nor my friends were willing to stand by me; I was abandoned by them.

I was so hurt. But I realised that anger, sadness, and hate bring nothing. Instead of hating those who hurt me so much, I preferred to see the bright side of this suffering. I still had a mother, siblings and my son, Rayhan, who continue to support me with their unlimited and unconditional love. I still have God, and I also believe that God will never give me a burden that I can’t carry. So, I decided to forgive everyone who had offended me, and let life go on. From that time, I also decided to try very hard to change ‘the atmosphere in Indonesia’ by writing information about MS for use in the media.

In 2005, I resigned from the university and worked in my family’s company for a year, and also became a freelance writer. These jobs were quite satisfying, but I felt that I still had to pursue my career. I also wanted to prove to many people that MS would never stop me from being a useful human being. So, in 2007, I decided to apply to a Japanese joint venture company in Indonesia, and they placed me in the Marketing and Tenant Relations Department.

In this company, my main position is Tenant Relations Officer. But sometimes I have to be their translator too (for English and Japanese) and be ‘the bridge’ between the Indonesian and foreign staff. I’ve learned from my past that people haven’t easily accepted a person with MS like me into their social circle. So, initially, I decided not to disclose my disease to my employer or my colleagues. Then I had another relapse and I had to disclose that I had MS, especially to my superiors. When I told them, I thought they would act the same as my former employer did. But surprisingly, they accepted my explanation and they were really willing to find out more about my disease by searching for information on internet sites. They were also very understanding every time I needed a rest because of my fatigue, my pain, etc. In short, they are very supportive to me.

Most Indonesian people in this company also have a good attitude. Although many still hardly understand the disease, they are, at least, willing to hear my explanation and their attitude also makes it easier for me to share more detailed facts about MS. In this company I also made a best friend; Yunita. I never ask her for help, but she always lends a hand before I ask.

Now, five friends and I are trying very hard to establish The Indonesia Multiple Sclerosis Group. This group will have several objectives such as helping people with MS to deal with the disease; making donations to people with MS and providing detailed and correct information about MS to all people in Indonesia. This activity is purely charitable and from this I will get something more precious than being rich: true happiness.

To other people with MS in the world, especially in Indonesia, I want to say that there may be some hard times in our life, but please never give up! Believe me, where there’s life there’s hope. Instead of crying and moaning or getting frustrated, it will be better if we face the truth bravely and ‘stand up’ and show other people that although we may experience disability in the future, this will never stop us from creating something useful and precious for others.

Last, but not least, I will close my story with the Japanese words that are usually expressed when we want someone to keep fighting and never give up on something….


Kanya Puspokusumo

MSIF are very grateful to Kanya for translating MSIF’s mini-language website into Indonesian (Bahasa Indonesia).

[1] I use these words in my book “Living with Multiple Sclerosis” which was published independently and distributed free of charge to all the people I know. It was written in Indonesian in 2005, and was revised in 2007.  In this book, I wrote everything I knew about MS; a definition of the disease, the course of the disease etc. I also wrote that people with MS don’t need sympathy; instead they need others to empathize with them, to listen and to understand what’s going on.

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