Cortico Basal Ganglionic Degeneration. In short, CBGD.
But the word "degeneration" doesn't look good, doesn't sound good either.
This was 5 years ago.....2002, when I was "told" of my mum's diagnosis.
No X-ray film to explain what is it.
No MRI or EEG results to share, although they were taken many times.
No causes of CBGD discussed, as there is no evidence of its causes in this current universe.
No discussion of treatment, as there is no drugs or therapies invented in this current universe.
And there I was....."Har? Si Mi Lai Eh?"
The next thing I was instructed to do was to make appointments for the following:
- Movement Disorder Specialist
- Physical Therapist
- Occupational Therapist
- Speech Therapist
I drove from the hospital carpark, picked up my mum, drove her home, thinking of how am I going to juggle my job with these appointments, each lasting at least 3 hours? (Worst case scenario of 1 hour of waiting, 45 mins of treatment, driving times to and fro, loading and unloading my mum.)
And I was thinking, she will get well......
5 years on....She is bedridden. She lost her speech. She has a gastrostomy tube.
She is defenceless.
After my trip back from Hokkaido, I drop by her place the next day to make sure everything is going alright, that she is passing motion, that her temperature is under control, that diaper and milk powder supplies are still sufficient. And most importantly, to give her a lavender scented pillow and a charcoal filled pillow I bought for her from Hokkaido.
The next thing I knew.....my mum's caregiver told me that last week, grandma had asked both of them over to her place to celebrate her "temple's anniversary"..........which lasted 6 hours!!!
Wah.....fumes rising from my hair liao.....
6 hours?
With the crowd?
With the incense?
With the noise?
With all the sympathetic words passed on her by fellow "celebrators"?
My mum had never stepped foot into my grandma's "temple" when she was still well. Not that she is against Buddhism or what, my mum actually has an Avalokeshvara statue, AKA Guan Yin, at home. In short, my mum was never affectionately close to my grandma.
So, now that she is defenceless, she couldn't say NO in attending the anniversary celebration. She couldn't stop anyone in wheeling her to the "temple". She couldn't tell those people she doesn't need sympathy.
Well, probably she wanted to go....I dun know. But my guts tell me - NO.
Probably my grandma wanted her well, to pray for her recovery. But my guts tell me - NOT EXACTLY.
Am I being skeptical? Probably.
When someone at home is sick, it is not only the sick person who suffers. It is also the people around her, the people who loves her, the people who denied that she is sick that suffered together with her. Everyone of us has our own thoughts and our own way of handling the situation. Somehow, these thoughts always go parallel.
She is now defenceless.....and everyone wants to be her knight.
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