1.Telling about disease.


I got prize at essay contest of people with disabilities and who support those people. It's held by NHK. I wrote about myself and got 1st prize last year. I translated 1st section of my essay.

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Now, please enjoy my essay.

1.Telling about disease.

I was not at all good at talking about my disease.
When I talk about it, I felt sorry and embarrassed.
No one owes to my handicap, but I felt I myself have a cause of my fault.

Muscular-Dystrophy; muscle of whole body becomes weaker by progress of disease.
Progress differs from patient to patient. Speed of it and symptom of disease also differs.

I am diagnosed of it when I was 3 years old. I did come to know the name of disease when I was 18. I didn't felt progress by then and I just had known that my muscle is little weaker than other people. From when I was at a kinder garden pupil, I couldn't run fast and I needed handrails when I use steps, but I didn't know my disease is progressive.
Until I was a high school student, other people couldn't tell that I have a disease from my appearance, unless I didn't go up stairs or I ran. I hid my disease lest other people couldn't know it.

My symptoms of that time was; easy to getting tired, needing a handrail to go up and down stairs and unable to run fast.

It was difficult for me to explain. I was worried if I could tell it properly and embarrassed about my disease. I just told my teachers and close friend. It was hard to tell "resting not to be tired" from "playing hooky". As the borderline of them was not clear, I often got tired by overworking.

Being "little" different from other people, I suffered a mental conflict when I was a junior high student, in adolescence.
"Why am I living?"
"How and where lives come from and why do I have to die?"
"Why everyone's not same and there are many kind of people; differs in skin and eye color or "with and without" disease."

Questions no one can answer came one after another. I was enclosed into a shell. I didn't know the name of my disease, but I knew that my disease can't be cured by modern medical science. I was in despair.

As the Internet was not widely used at that time, I couldn't search about my disease by using keywords. I didn't know the existence of other patient. I couldn't go out of my narrow world.

After compulsory education, I entered high school.
My teacher told "High school is where to go by your will; you need to study by yourself." I went school though it was tough.
I felt I wanted to go to university; I entered a cram school at the same time.
It was best place for me as I usually thought "I want to challenge by studying as I can't move around." By counseling about my university and my disease, I was really motivated.

During my high school time, I studied hard. I got opportunity to talk with classmate about studying and my high school time became happier.
To enter university, I felt I have to challenge.
But the question: "Why am I living?" didn't disappear.

I was worried about what to study. I felt "I can't work which needs power. I want to utilize my study to work."
Honestly, I couldn't find what to do. There wasn't anyone who had disease as me and going university. I couldn't find any role-model.
I just had a vague image that I wanted to work at office by using numerals.

When I listened to a university student, I felt like "I want to study that!" (She came to my school to have a teaching practice when I was in 3rd grade of high school.)
Administration engineering: Science to study total administration of Items/Human/Money/Information. Curriculum includes industrial engineering, human engineering, management, programming and so on. An employment rate is high.
I was thinking I would have difficulty of being employed if I didn't have any skills.
The university which my senior was going was not so far from my home.
I went to see that university in summer holidays. I was more motivated and studied hard.
I could pass the test by recommendations test system in autumn.

I came to know my disease's name by the document which I submitted to university.
It was: "Limb-girdle Muscular dystrophy."
I learned about my disease by searching in internet at my university.
I got to know that it's "progressive".
I had already realized a little as my physical strength was getting weaker, but I was shocked that I might use wheelchair by progress.
I was worried if I can graduate. It took one hour from my home to school.

The schoolhouse changed when I became 3rd year. It was on the top of mountain and far from the station. Usual person would take 20 minutes for one-way. It was tough for me to go; I took taxi from station to school every day.
It became difficult for me to standing up from sitting position in trains as my disease progressed. I might not stand up if I didn't choose where to sit. When I took train, I felt fright and avoided public notice. It's difficult to sit on priority seat as no one can tell my disease from appearance.
But finally, I could finish 4 years at university.

I couldn't participate in club as I didn't have enough power. But I participated in almost all classes at university. I chose a laboratory which I don't need to participate for long hours. Though there were things which I couldn't do because of my disease, I had irreplaceable nice time of 4 years.

When I was in 3rd grade of university, I got ID card of disability.
"To work", I became a disabled person from a person with disease. (In Japan, person who doesn't have ID card of disability is not called disabled person legally.)
My diagnose was "3rd grade of disability with upper and lower girdle".
I felt relieved in some points by having an ID of my disease. It became easier for me to tell about the disease.

I used internet to search about job. I looked into companies near from my home in the HP which introduces companies recruiting disabled people.
I found a nice company which is 15 minutes by car from my home and office is suitable for disabled people.
I wasn't sure if the job fitted for me, I felt I had to challenge. I decided to try.
While I talked with people at personnel section, I knew there were chances regardless of disease or handicap. I wanted to work there so much.
Adding the name of my disease, I told that I was easy to get tired and couldn't go around by walking. At the 2nd interview, I went to the office where I work. My worries little decreased.
Finally, I had 3 interviews and I got chance to work!

I was told by an office doctor, "You should use a stick. By using it, other people can know you have a handicap with feet and they care about it."
At that time, I could walk without sticks, but I tried to use it when I travel. I had complicated feeling, but other people surely helped me. When I had difficulty of getting on train, someone gave me a hand. When I went a restaurant, I was taken to a table seat soon. (In Japan, there is place called "Ozashiki" seat where we sit down on floor of tatami, Japanese carpet.)
At university, I first time used a stick at the commencement. My friends was little worried about that, but I could tell that my disease was progressive. It was a nice step for me that I could show real myself. I felt that it became easier to tell about disease by using a stick as other people can imagine I have a trouble with my feet by appearance.

by fradol | 2009-02-07 15:22 | ENGLISH

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