Nov. 2018 Vol.1 | Bureaucratic Sabotage

The October of 2018 is as normal as usual and my condition is still a mess.

I went to work for a media company as an intern as well as a developer for the moment. The work is pretty simple there and I felt comfortable working there. The pay is poor, however, 65 yuan per day and about 1000 yuan monthly.

I received so many messages about vaccines recently, which remind me of all the bad days in the hospital, suffering from various symptoms.

My life would be totally back to normal if I should not feel dizzy and vertigo, but I am still fighting hard to get my life back to normal due to my severe symptoms. Despite the fact that I have been fighting with Leukemia for 4 years, I have to fight with a disease similar to multiple sclerosis now, which is even worse than leukaemia, with all these neurological problems.

If anyone had told me in advance all the mental/physical problems that I would be suffering after haplo-BMT, I would rather die at the very beginning than do the transplant. The Bureaucratic system in china totally ruined my life, in most aspects. My living quality should be back to at least baseline if I followed my original transplant plan in Singapore, but no one can changes the past.

It is written in Your Medical Mind: How to Decide What is Right for You that people felt regret for a lot of the decisions they made. I, too, made a wrong choice because of family pressure.

Many problems could be avoided if my doctor in China could be just a little more responsible and had listened to my advice before it was too late. It seems that my immune system is attacking my axons every so often, making me feel dizzy & vertigo. I have numbness and weakness in both legs and arms, as well as vision problems. I even find myself having trouble speaking someday in the last two months.

My parents rarely support me to do anything they don’t believe, this had never changed all my lifetime. I talked a little bit about my family issue in the last article and it was the first time I talked about it. I have never mentioned anything about my family issue before. I never wrote it down, and I never told anyone about it. Most people don’t understand me because they thought that I had a happy family.

My family has been broken since I was quite young. My mother and father pretend that everything was normal, so I pretend to be the same. I was too young at that time to know anything else.

My ex-girlfriend doesn’t understand my previous family condition. I tried to explain to her several times but failed. I never tried to explain it to anyone else after that. My family looks as good as normal from the outside but actually have a rotten interior. It should be a very special case in this world and It would be almost impossible to get anyone who doesn’t experience it themselves to understand this.

My aunts always encourage my parents to let me read sutra, a friend of my father insisted me taking traditional medicine and also somebody even let me use qi-gong to save my life.

My mother, on the other side, never know any basic knowledge about human body, so he followed the internet and insisted me not to eat cock (male rooster) after transplant, the reason for her to do this is that cock was considered fa-wu in Chinese medical theory/culture.

I felt desperate every time when I try to explain to my parents not to believe these things because they so loved me that they do believe these things would do good for me. Even some doctors in China would say that I’d better not eat these things. So the more I talked about this, the more unique I seem to be. They even thought I had psychological problems because I talked so much that these things and insisted me to go to No.6 Beijing Hospital.

The similar story happened also very often in China in patients who want to keep their breast after diagnosing of breast cancer, that their family member always insisted on a total mastectomy but actually the patient him/herself doesn’t need to do have a total one. Most patients would regret doing this, especially for those younger.

People always do bad things out of good will, and I would say that a lot of Chinese family are like this, they don’t try to understand each other. I tried but the others won’t, and I was too silly to believe that I could change this.

I have a strong sense today that I can live no longer than 30 years old and I decided to log these things down here. I decided to write it down in English, despite of my poor English. I was trying to talk about Bureaucratic Sabotage at first. But later I talked a lot about myself, complained a lot about my sucky life in this article.

You can sense the Bureaucratic Sabotage from my family relationship. It is part of our culture.

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