Saturday, July 18, 2009
Smiling sometimes still, with MS
It's easy for me to be happy, because not only do I have the happy gene but I'm a hugely lucky person.
Not so my friend Diana Neutze, who has been stuck with multiple sclerosis for 40 years. Every day can be a nightmare, and many are.
At a certain point, Diana made a decision, a strategy, a plan. She would always try to be cheerful and entertaining when friends called. Otherwise they would stop calling. So visiting her is stimulating and fun, on one level.
It's a tricky one, because sometimes she simply has to vent, and most friends aren't able to receive this. Our natural urge is to deny that things are as bad as she says. That's crazy talk -- because A. Diana knows best, and B. Diana was dealt a very nasty hand.
The photo shows her receiving attention from one of her army of helpers, who's stretching muscles that otherwise cramp painfully. Things are much worse for her now.
Diana inspires me because she turns the whole hideous experience into a spiritual journey. For years she has treated physical disability as a series of problems to be solved, and an opportunity for spiritual growth. It's unbelievable.
Even now, she writes poems, using a voice programme and editing by ear alone. Here's one.
“Surely, there is a different song.”
Yes, but you need to be a different person,
change through and through.
Not like going to a hair dresser
with a fancy photograph
and expecting the new hair style
to smooth away flabby skin and wrinkles
with one sweep of the comb.
The change must come from the inside out.
Like the inhabitants of Plato's cave
fixedly watching the movement of shadows
you need to turn around and welcome
brightness and colour and light.
Then there will be a different song.
Diana Neutze, 18 May 2009