Two years after I came down with Myalgic Encephalomyelitis (ME/CFS), I got into a junior high school where I faced difficulties in studying. Eleven years of my high school life afterward was also hard in terms of learning.
In this post, I am going to write my old story as an Myalgic Encephalomyelitis [ME] (aka. Chronic Fatigue Syndrome [CFS] or ME/CFS) patient regarding studying.
Summary of how I came down with ME/CFS
I used to be a healthy kid that did not catch a cold even after walking around in flip-flops on snowy days. However, it was right before my tenth birthday (January of 1995) when I came down with ME/CFS followed by a flu infection.
Soon afterward, headaches, dizziness, uncontrollable perspiration, and a mild fever of 37℃(=98.6F) came on and they would not go away. In addition, my temperature would shoot up above 38℃(=100.4F) when I came home from school as usual, and it started repeating.
At that time, I thought I would get better after resting a little, but it turned out that I was wrong. I got diagnosed with ME/CFS in the end.
What was I like as a student?
I like to be around people.
I liked my school life, and was actively engaged in all school events. My friends were always around, so I always had fun making jokes at school and hang around with them after school.
I came down with ME/CFS when I was in the last term of 4th grade, but I still was able to pretend as if I were healthy. There were days when I got so sick that I couldn’t even go to the bathroom without assistance even though I was able to run 3km (1.9 miles) at full speed some other days. For that reason, I spent the rest of my elementary school days just like other kids, though I was absent from school a lot.
Surviving junior high school
It was in April of 1997 when I got into junior high school. Two years into my ME/CFS life, my physical strength was declining further and further and I needed help from my parents just to go to school.
I always had a fever of around 37℃(=98.6F) and headaches got so bad that I would throw up.
However, once every few months, I felt well enough to play with my radio controlled cars outside for an hour.
I still remember that I was really excited before I got into junior high, dreaming that I would enjoy myself with friends and participate in all school events.
Challenges came at the very beginning
In junior high, students are given a list of all textbook pages that an exam will cover so they can study, as well as printouts of required coursework to be turned in before the test.
However, I was not able to go to school to get the handouts until about five days before the exams. As a result, I always had to hastily finish my assignments, but I often missed the deadline.
This problem remained unsolved until graduation.
No one would check my answers…
It was not a big deal that I did not know what I should study the most for exams (though it was really hard.)
What made my school life harder was that teachers wouldn’t check the answers for my assignments if I missed the deadline.
I was not always lucky to be at school on the day handouts were given, so it was really hard for me to get the assignment to make it to the deadline.
What was really absurd was that I got scolded in front of other students as lazy when I came to school without knowing that homework had been assigned.
I didn’t even know the existence of the homework, so it did not make any sense because all teachers knew that I turned in all assignments whenever I could, and I was absent from school on many days.
Preparation for school exams
My school was totally unreliable in terms of study, so I worked on textbooks from Bennese, an educational publisher, that my parents subscribed to.
In the textbooks, there was a mark beside a question, which meant that it would be highly likely to be on the test, so I knew exactly where I needed to put my effort into.
However, I did not have enough physical strength to solve all the questions in the textbooks, so my mother always made a summary booklet based on them for me.
As I am writing this post, I have realized how much my mother had been supportive for me. I couldn’t be more grateful to her, especially because she was also suffering from the same illness (she hasn’t been able to get a diagnosis yet.)
No one would grade my work…
A totally unforgettable event occurred in the last term of my first year. In my art class, students were assigned to make something out of paper mache. I was halfway through making a paper mache mammoth when my body gave out, so I got a permission to finish it at home.
▲I really like this paper mache mammoth, so I display it on a shelf in my room.
It was really fun to make a mold and lay strips on it, so a paper mammoth was soon to take a shape. Unfortunately, I was not able to turn it in because I got sicker afterward, and the teacher was absent when I had the chance to go to school next. By the time I finally got to turn it in, it was right before a term-end ceremony.
When I took my lovely mammoth to my art teacher, she did not even give a glance at it and said “I cannot assess your work because I’ve already written your report card.”
I was shocked. I knew that it was unlikely that I could have my work assessed because the deadline was long past, but I was sad and hurt that she didn’t even look at it.
Looking back on the incident
It doesn’t really matter if I was shocked or not, but what does matter is that all children’s efforts and assignments are actually assessed because school grades are highly influential on a child’s future.
It is truly unfair if the students’ performance is evaluated based on the mere fact that whether they are at school or not. I really hope that children in the next generation will not have to go through what I have.
Next up is my high school life!
Long high school life
MY only choice was to go to a part-time high school, partly due to my low school grades and largely due to my poor attendance. (In that part-time high school, classes are held during the day just like a regular high school.)
Although I got into a high school that I wanted to attend, all the classes were like review sessions of junior high school, so I was extremely bored.
However, I began to consider my high school as a place where I get a high school degree at some point, and I started to enjoy my school life from then.
Studied English whenever I could
When I was 16 years old, I started studying English as a hobby, but I began to want to get an English related job after I passed the Eiken Pre-2 Grade.
Luckily, a part-time high school was the perfect place to study English.
Part-time schools have students who are working in addition to attending school, students who cannot adapt to a normal school schedule, students like me who have health problems and more, so none of the teachers would pay any mind if a student fell asleep in class as long as they came.
I made the best out of my school by studying English in math and Japanese classes. My stamina was extremely limited by ME/CFS, so it was great to be able to use my precious time for studying English.
Second year for the second time
By the time I had spent the maximum 6 years, I got only one year’s worth of credits, so I decided to take re-entrance exams at the age of 21.
The re-entrance examinations made me really nervous because I thought it would be totally embarrassing if I failed after six years of high school. In addition, I really wanted a high school degree.
I studied really hard for one year before I took the exams. I can clearly remember how relieved I felt even now.
To graduation
I got two to ten credits a year at most because of ME/CFS, so it took 11 years to graduate from high school in March of 2011.
There were times when I was mad at myself and I felt ashamed because I could not even graduate from high school.
However, I feel proud of myself now because I didn’t give up and made it through to the graduation no matter how long it took, even though my school was just an ordinary part-time high school.
Feeling bad about myself
Not being able to go to school made me feel really bad about myself. It would occur in many occasions in my daily life.
Whenever I failed to answer a question on a TV quiz show that was at the elementary/junior high school level, I was filled with frustration at the fact that I was unable to attend school like normal children. It made me so sad to hear the conversations of my friends in high school when they would make references to authors or famous works that they learned about in their early school days, that I just could not keep up with.
Solution: I started to think about how I should live my life in the future when I was 21. One day, I felt a sudden urge for reading novels. I hoped that reading novels would help me see how people tackle their problems that life throw at them, and that there might be some tips of how to live my life in the books.
I went to the library right away and saw books with this sticker on the spine of them: “Featured in Junior High Textbook.” I checked out all the books with that sticker and read evey single one of them. The authors of those books include Mori Ogai, Natsume Soseki, Akutagawa Ryunosuke, Yamamoto Syugoro, Mukouda Kuniko, etc. In the next three years, I read 100 books per year.
I came to realize one day that I no longer felt bad about myself regarding my lack of academic knowledge.
Good aspect of not going to school
One thing that I am happy about not being able to go to school is that I was spared from having to listen to my Japanese English teachers’ terrible English in classes.
Instead, I started studying English with NHK radio English conversation program, so I was able to learn the sound and rhythm of the English language from native English speakers. As a result, I have learned natural English pronunciation and intonation for a person who started studying English in his mid-teens.
Looking back on my school life
In retrospect, my junior high school life was full of trouble largely due to prejudice and lack of understanding from teachers, not to mention, symptoms of ME/CFS.
I told myself well done as I was writing this post.
My life continues no matter what, so I will keep trying my very best to become happy.
The Japanese version of this article>>ME/CFSにより中学・高校で勉強が大変だった話【慢性病と勉強】
