From the Day of Diagnosis to Elementary School Life

"K-kun, your way of walking and running is a little strange."
I didn't really understand it myself. I only had a sense that I was prone to falling or that I was a bit slow at running.

But my mother seemed concerned and kept researching it on her own. My way of walking, running, and how I used my body. She said that the more she looked into it, the more one disease name kept crossing her mind: "It might be muscular dystrophy."

Encountering the term "muscular dystrophy"

One day, when I was five or six, I heard the name "Duchenne muscular dystrophy" from my mother for the first time.

It was a long, difficult word, and at first, it didn't mean anything to me. But when she told me, "It's a disease where your muscles gradually get weaker, eventually you won't be able to walk, and your life expectancy is short," it felt like a heavy weight suddenly pressing down on me.

I understood the meaning. I understood it all too well. I remember being so sad for a while that all I could do was cry.

However, it actually took some time to arrive at this diagnosis. For some reason, the first hospital I went to proceeded with tests in a different direction than muscular dystrophy. Even though my mother already suspected it might be muscular dystrophy, the doctors didn't reach that conclusion for a long time. Looking back now, I honestly don't know why that happened, and I think my mother must have been feeling anxious and unsettled the whole time. That's why she told me that when the diagnosis was finally clear, she also felt a sense of "finally, we know."

Everyday life at a regular school

Even after receiving that diagnosis, I started attending a regular neighborhood school.

Every day, I was in the same classroom as my classmates, taking the same lessons. At the time, I could still walk on my own and play with my friends. Honestly, I don't think I had much of a sense that "I am a sick child."

But there were moments everywhere in daily life where I was "different from everyone else." I always had to observe during P.E. class, and there were times I couldn't get in the pool. Even going to the bathroom, which was nothing for normal kids, was extremely difficult for me. Still, at the time, I just thought that was how things were. I was much more concerned about what to play during recess or what was for school lunch (laughs).

As I moved up in grades, the moments where I thought "Huh?" gradually increased. Stairs became harder, and walking for long periods became exhausting. Even so, I spent every day thinking, "Well, I'll manage somehow." When you're a child, you can somehow believe things will work out without any real basis, right? I think that's an amazing power.

Fifth grade, moving to a new stage

When I reached the fifth grade, various family circumstances overlapped, and I ended up transferring schools. Admission to a convalescent ward and transferring to a special needs school. That became my new daily routine.

Hospital life meant returning home only on weekends and going back to the hospital on Mondays. I felt depressed every Sunday evening. By the time the ending theme of Chibi Maruko-chan played, it was time to return to the hospital, and I often cried in the car while Southern All Stars songs were playing. Even now, when I hear those songs, I feel like those evening emotions come flooding back (laughs).

Life at the hospital was lonely, and perhaps because of that stress, I became a real brat before I knew it. I think I caused a lot of trouble for the hospital staff and school teachers. I am truly sorry (laughs).

On the other hand, the special needs school was surprisingly comfortable. There were wheelchair-accessible toilets, I could participate in P.E. in my wheelchair, and I made more and more friends with the same condition. We could talk about each other's worries, understand each other without needing words, and there were many things we could relate to precisely because we had the same disease. Thanks to the barrier-free environment, I could do more things on my own, and my life became much more fulfilling. I still remember thinking, "This is a place where I can just be myself."

Now, at 32, I live on my own away from my parents, using severe disability home care services to live life in my own way. If my elementary school self from back then asked me, "How was it?" I think I would answer like this.

“There were some tough times, but even with the illness, it was fun. I truly enjoyed it.”

That is the honest truth.