Hello, strangers, thank you for clicking into this website and welcome.
I’m a 27 year-old girl from Taiwan, who has been suffered from “stiff person syndrome”(an extremely rare neurological disorder) for over 5 years.
Where the hard way started
To start my personal story, I want you to know that life always has its downsides, but if you take it positively, it can become your own treasures, just like my own experience.
I have had the idea to build this blog a few years ago when I was bedridden, feeling hard and lonely.
Back to 2018, in a young 22 year-old age, I was studying in a medical college. There, I have left only 2 years to become a doctor and just started my 5th grade. However, right in the beginning of autumn, I was suddenly found to have movement disorder and soon sent to the hospital by my school teacher.
During hospitalisation, I was out of appetite and lost 5kg in only 2 days. Being unable to walk and sit properly, I was either on my own bed or on the couch in the parlor all day long, with most of the time being extremely sleepy.
In the first week, I felt very weak. Except for the numerous blood tests, body check, further examinations and repeating history-taking, I did nothing but slept everyday. When I finally gained a bit energy, I struggled to sit down in front of a table, trying my best to study the class notes brought by my friends, for my upcoming midterm exam. Life seemed so focusing and monotonous, with only a few goals to achieve — to leave the cage, to take the exam, and to breathe the air from “outside”.
Next to my room, I could see a tall hospital building with a helipad on the top. Sometimes I imagined a helicopter come and go, taking someone here and away, as if I could travel with it. It might be weird that I had been a real world traveller only 3 months ago before the hospital life, but now I was deprived of the ability to move and walk freely.
My friends visited me very often. They came in the lunch time, afternoon breaks, dinner time, and always stayed until the last minute before the visiting hours ended. I appreciated them so much that I could say no words but feel supported in the deep heart.
And so day by day, I was eventually suspectedly diagnosed with stiff person syndrome and treated with IVIG and some other medicines by my teacher, and gladly able to be discharged a week before midterm exam.
I still remembered the day 10/20, at 8:30 in the morning, when my teacher smiled at me and said that I can be discharged, it felt like so unrealistic. At the moment I stepped out of the hospital, I set up my mind that one day, I shall have a chance or give myself a chance to write down my story, and to say thanks to the world.
That’s the very beginning of my changed life story. After that, I was given a lot more opportunities to learn, to feel, to analyze, to understand, and to think of what is life. And I will write them down in the blog.
Take care, be good, there’s always someone caring about you.