Today is exactly two years since I started writing this blog to keep a record about this disease.
Two years seems long, but it passed quickly. I feel like it was very short.
Yesterday I read my blog entry that I wrote about the time I first started.
I realize that, back then, I was just moving forward not believing that it could be ALS. I recall that I felt scared every day.
I was very worried that Hajime would eventually not be able to speak. His disease continued to get worse and worse, and now he has lost his voice.
I thought about letting him eat before the time came when he would no longer be able to eat anything, but the disease progressed so quickly that within a year, he could no longer eat.
We used to sit out on the veranda at the old apartment, and I would often ask Hajime about what he was thinking. He said he was afraid of the disease. That's how we lived every day.
I can still vividly remember those times.
At the end of May last year, we met with the social worker to discuss putting the trache in. After that, his breathing became irregular and he started to choke. He was taken to emergency. Over a year has passed since then. He had to stay in a hospital bed, and the disease continued to progress. Finally, he couldn't get out of bed at all. He had many procedures done and he lost his voice.
This disease is truly frightening.
I think it was good that I kept a blog these past couple years. I think it has also been good to let people know about the real Hajime.
I want everyone to know that although his facial muscles have deteriorated and he can't smile anymore, Hajime used to always have a smile for us. I am also very grateful to the people who have told us that they were inspired when they saw Hajime's smile.
And I've met all kinds of people through this blog.
On his first year anniversary last year, he was in the hospital so I couldn't write anything, but with this second anniversary, I am grateful because I know it has truly been with your support that we have made it this far.
Please continue to remember Hajime.
And pray that he can walk again.
(translated by MS)