Similar accident to yesterday happened today again. I could stop it
because I was in the hospital.
I joined to bath him for the first time. Leaning the special bed a
little towards the bathtub, and showering on his body. During washing
his hair, his head was stayed on the pillow. However, how to wash was
very terrible. I felt they did not think they were washing a person's
They did not care water splashed to his eyes, without any care,
washing his ears. Hajime already had a lot of pain some part of his
body which muscle was already weakened and not moving. But it was not
cared at all. Hajime cannot say anything. I thought it must be very
difficult for him when he is alone.
This hospital is for children, but they do not have any ALS patient.
So they do not have any knowledge of ALS. Never known how the ALS
patients feels, and how to care. It is too bad for Hajime.
Today, he was crying many times.
Anger to the disease, nurses not understanding the disease, to himself
cannot do anything by his own. He showed his anger. We cannot hear his
sound because he cannot let his voice out. But he had crying hiccups,
even... he was crying this much.
They say big things, but with no techniques, I care. I wonder if it is
good for Hajime to continue things like this everyday. I really
For Hajime, having a disease progressing everyday, "this moment" is
more important rather than think about future.
How great it would be if we can fully live NOW.
I want to see Hajime's smile...
Translated by Satoko Okamoto