Hajime's Feelings

For the first time in a long time, I talked to Hajime about all kinds of things. Hajime's eyes were red from crying.

Are you sad? I asked. Yes, he said, blinking once.

What are you most sad about?
Are you sad that you can't communicate?
How do you feel about your illness? Are you scared?
Is it hard not being able to move any part of your body?
Have you ever wished you could die?

Hajime blinked as he cried in response to my questions.
He wants to say so many things, but if people don't listen to him carefully, he can't be understood.

We talked about TLS, totally locked in state.

We needed to have this talk.
His eyelid muscles are deteriorating, and one day he may no longer be able to open his eyes.
What will you do if that happens?
Hajime said, "I don't know".
But it looked like he was really scared. I'm not the one with ALS, and even I am frightened.
When I asked him what he wanted to do while he could still open his eyes ......
Do you want to try to play some games with eye-gaze?
Do you want to do Facebook?

Hajime was blinking.
I am thinking of different things to try for eye-gaze.
We could do Facebook right away, so we did it for the first time in a while.
Of course I manipulated the controller...

Hajime was reading the words on the screen very intently.
We even updated his status.
He would be so happy if he got some responses
. It looked like he wanted to chat like he did before.

I also talked to him about going out somewhere together.
"I want to see an air show at Edwards Air Force Base one more time."
The expression on Hajime's face when he communicated that thought to me was somehow so cheerful. I guess the best thing is what he likes.
He also said he wanted to go to Disneyland.
We do not have a car so we won't be able to do that, but if we could go, I would love to take him.
Until now, Hajime has not wanted to use a wheelchair and he has had no desire to go there.
But he did say, "I want to go", so I would like to figure out a way to take him.

I just checked right now, but it looks like there is no air show scheduled this year.

I hope to raise Hajime's spirits so that he will want to go out more.


(translated by MS)