From 12:30 to 17:30, 5 hours
It's my limit to hold
the bladder.
What about after hours?
From 22:00 to 7:30 next morning
9 and half hours
It's beyond my capacity
I can't hold.
Not being able to walk made me aware that
I used to go to the bathroom without even thinking about it.
I've never counted my trips to the bathroom.
I'd better consult my caseworker
Before I develop cystitis.
My symptoms are progressing so fast.
I've experienced the symptoms which usually take 3 to 4 years in 7 months.
It's too fast for my mind to catch up.
My mind is losing touch with my body.
Yesterday I could, Today I can't
This and that movements
I can't brush my hair, I can't hold up a mug, I can't move the pillow closer.
I can't reach for your hand.
I got a mail from Yuri.
She is coming, bringing me super healthy dinner
I asked Yuri a while ago
I want to do something for you. What would you like?
This is her reply
"All I want is for you to cherish your life fully one day at a time. I'm sure other friends wish the same. Your attitude toward life is a gift for us."
Every time I read it, I find myself close to tears.
I'm writing about the bladder today.
I confessed I had snapped.
There are many days I do not cherish my life.
Her words are too good for me.
To cherish my life fully
One day at at time, one hour at a time
one moment at a time
What does it mean to cherish a moment?
I am living with ALS
Yuri's friend said,
A.L.S. = Affectionate Loving Support
It might be a clue to cherish my life fully
5:00 pm
It's still light out
Beyond the curtains the dusk is waiting
I am sadly aware that
You are not coming.
The usual melancholy melody plays on PA speaker.
7 hours till midnight
I hope the wonderful time is coming
Love and hope and expectation
Yuri, I'm waiting for you.
Poem by Maria Franki
Edited and translated by J. Ujiie
©2011
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