The story "Only human".


To begin with my story "Only human", I want to write that I probably never started a website about the Werner syndrome.
The real reason for starting this website is that I came into contact with a fellow sufferer, who said to me that it would be a good idea to make a website about the Werner syndrome. She said, "When I'm gone, you really need to connect with other fellow sufferers".
She knew how difficult it is to find a sufferer, she's been looking for more than two years before she found me.


written in the Netherlands on 2011-06-11

The title "Only human " refers to a title we had made for our lifestory.     

Already 2 years I had been on the Internet and was searching for fellow sufferers. Until I came on an American site and to my surprise I found a profile.
It is sad that you are suspicious, because there are people on the internet who try to trick you. You must be careful. At first, carefully read what this profile of this person could tell me. The person who had this profile, would like to get in contact with another fellow sufferers. At first I doubted. Would I respond now? But I knew if I did nothing I would never get in touch. The profile was from an Indonesian woman in the age of about 23 years.

On the thirst of January of 2011 I sent her an e-mail and wrote to her that I liked to have contact with her. Very soon a response came. In the beginning when we just met, we were mostly asking questions about the Werner syndrome. The funny thing was that she had mistaken in a photograph from a different profile. But it made no difference, "As long as I know you are a friend of mine, in this friendship it didn't matter what ethnicity, race, religion or how you look like", she said. From that moment I knew I had to deal with a good person. Soon we were sending e-mails, which were formally in the beginning (I did not know her) but after a few days it felt very familiar.

A few days later we started chatting, but my English is not as good. Her's was sublime, perhaps I didn't always understood immediately what she meant. She knew more than I did of the Werner syndrome. In a chat she gave me her phone number so that I could send SMS messages. I sent her immediately a message. Sometimes the network connection was very bad and during a chat it lost it's connection. This has happened several times, it was really peeling. It took some hours before we had a new connection. In Indonesia, the connections are bad, especially at night. We wrote a SMS sometimes because we both found it was annoying. We both had very different lives in different countries (I worked for years and she did a study of physics). Somehow we had a connection. It sometimes felt like she was sitting next to me and not on the other side of the world.

She wrote that in 2007 she was diagnosed with the Werner syndrome but in 2010 she was told that she had familial lipodystrophy.
The symptoms she had were so similar to the Werner's syndrome and I recognized many of her story when I spoke to her. She also had other symptoms that are not the same as of WS. Such as insomnia, neurodegeneration and Alzheimer's disease. I told my blood was send to Washington (USA). I was wondering how her diagnosis was made. Her blood was sent to Singapore. Perhaps this is why the misdiagnosed because the country's medical science is not well developed. She was very confused about it and she found it all very strange. She was very interested in me and I was interested in her.

Soon we were sending photographs back and forth. And what struck me is that she was not old looking. The funny thing was that she said the same about me. We have talked a lot about the disease but also about other things that occupied our daily lives. Sometimes we laughed about things, she definitely had a sence of humor. At the age of 14 she had an IQ of 130 (which is extremely high). It has been reduced to 115 (which is still above average) on the age of 23, she was very sad about it. The thing that troubled her most was the fact that she was physically changed. People didn't take the illness seriously and even mocked her. It is simply too shameful for words !!!!!
As if such an illness is something to be happy about, "you are considered a manufacturing defect", she said. It's terrible when people treat you like this, as if you are not a part of society. It makes me very angry everytime I think of this.     

Stories and poems she really liked, she had put a poem on the internet but was not happy with what the creators of the website did with it. The name of the author was not listed. She had an update but they have never posted. She thought it was ridiculous. I hope that her poem here comes into its own.    

On January 11th evening I got a picture of her and I thought, " This is the girl of my dreams ". It was really a beautiful woman.
If angels exist, then I knew for certain that I had found one. She said that it was a photoshop picture, but that did not matter to me.
In the picture she had a white dress. 15 minutes later on the chat I asked her if it was really her on this picture. She said "One of my dreams is to be a bride, and this is me in the picture, but I would never experience it in real life".
I didn't understand and asked her why not. She wrote to me "I suffer from brain cancer, I already knew this from the age of 15, the tumor grew rapidly the last time I had a MRI scan and I probably would only live for a few months". She said, "One thing you must remember ....... I will never die ....... I live even though my body is dead". When I heard this I didn't knew what to do or say to her. I was completely shocked, the only thing I could do was cry. All night I didn't sleep. The only thing I could think of was, "How is this possible, where is the justice in this, why is life so cruel?" Before I got to hear this bad news, I had high hopes that I could go visit her someday. The average age is 46 years of WS, so then we had some time together. I was so happy that after 2 years of searching I finally found someone and now this happens ................. All hope was gone!

On January 16th, I asked her if she would be my girlfriend. In a few days it would be my birthday and I couldn't imagine a better birthday gift. She had problems with it (understandably of course), she said, "If I have to die ..... What about you then ..... I can not leave you alone" . But she wanted to be my girl. She once had a boyfriend, but because of the disease she had broke up with him. On my birthday I introduced her to my family, she was so glad I did this. I had put an extra seat in the living room and said "I really wanted that there was someone here tonight but she coulnd't come". I wanted so badly that she was happy. She said she never felt this feeling before. And I, I had never had such a beautiful gift, "we were happy".

The whole month was for me as a pass rush, all I could think about was her. I felt rushed and couldn't concentrate on my work. And after work I rushed home to talk to her, I didn't care about anything else. The problem was that there was a time difference of 6 hours between the Netherlands and Indonesia. When I came home at 16.00 hours it was for her already 22.00 hours. I have suggested her that maybe I could take some days off so we had some more time, but she wanted me to go to work.

On January the 26th it all went wrong, she had just been to a collage and when she came home, she collapsed. She would never feel the same. The perseverance she had to get her degree despite her illness was incredible. She wanted to graduate and that people could be proud of her. The weird thing was that I felt restless that day, as if something should go wrong. Eventually she turned to be 17 hours in a coma at the hospital.

I began to wonder increasingly what would happen if it really would go wrong. How would I know if she was deceased. She wrote to me that I would receive a message from her family if she should die.

We had only typed messages and it seemed so nice as I could hear her voice, but I had no headphones, and hers was broken. The next day I immediately went to buy one, but it never happened that we could talk to each other. She was very shy, the same as I am. The threshold was too big to do this and she was not feeling well. "I sound like a little girl", she once wrote.

I could tell that after she collapsed, she no longer had the strenght to talk for a long time. The doctor told her that it would be better not to use the computer. This was very difficult for both of us to hear, because we were so happy to talk to each other. Would this mean that I could never speak to her again?
If there was something she loved it was the cyber world, "people were no stranger here", she said.
I wish I could do something for her, but I couldn't do anything, it was such a helpless feeling.

On Sunday February the 6th the bad news of her family came, I was told that she was deceased on February the 3th.
I knew I could expect the news, but it still came as a surprise. It felt like a slap in my face. You realize that there will be no more conversations, and you never be able to ask her anything again. I was still full of questions I would gladly asked her.
If I could say something to her, it would be, "Saya mencintai kamu". Throughout my life I have never known such sorrow. It has taken me weeks to get my thoughts back and think of other things. But I will never forget her as long as I live. I'm glad she has no pain anymore, rest in peace sweet girl. I know that you have found peace that you so desperately were looking for!

Now I look back on the month January that I was in contact with her, I can say I have many fond memories of her. She has made me happy. The way she could tell things was amazing, it's a pity she could not live to be happy with me.

I've never regretted that I have responded to her profile. Afterwards you can say that if I had done this years ago, I would have more time with her. Of course this is hindsight and now I realize that my clock is ticking twice as fast. So the reticence that I first had, I must get rid of. I know that I must live "now" and not wait for tomorrow. Actually, this applies to everyone but for me this is even more applicable.


I have had 5 weeks of contact with her but it felt like I knew her much longer. I'm very happy that I've been her boyfriend and that she loved me. I know she will always be my girlfriend. I hope I have told my story in a way that she would of have wanted. I think she would have been glad that I did write the story.
Finally, I want to thank her family, that they allow me to tell my story about her. If they refused permission, I would never have told my story here. I am grateful for this.

go back to Home