Friday, August 5, 2011

catastrophic brain diseases and other tragedies of human life

i have been consumed lately with thoughts about living...am i living up to my potential? what is the meaning of life? hello, God, it's me...debra. that sort of stuff. i seem to be surrounded by the fragility of life. my parents are elderly. my friend, carolyn, has colon cancer. even my dogs are senior citizens. they bark for no reason. they prefer biscuits to their kibble. they move stiffly.

i don't have a lot of 'things' to measure my success in life. no house. no sporty car. no husband. no impressive savings portfolio. no great american novel or cooking show or media empire. i have terrific kids. wonderful grandchildren. a loving family. and amazing friends. i enjoy writing. and painting. and gardening. and traveling. i try to squeeze every drop of living out of every day. i wake up happy...although i would probably wake up happier in some lovely seaside cottage with rambling roses and the smell of the ocean in the breeze. a cottage filled with sunlight. billowing curtains. and a ginger colored cat that purred contentedly from the window sill.

there are no great secrets to living with spino-cerebellar ataxia. it helps if you embrace change because change happens, like it or not. i used to walk unencumbered. i use a rolling walker now. i often slur my words. i am a social creature: slurring and coughing spasms make socializing difficult and frustrating. usually i ignore the ataxia, which is my favorite coping strategy. i savour the moments when i still feel 'normal.'

i made the conscious decision to have a good life, despite the sca diagnosis. i have children and grandchildren and they might inherit this disease. i don't want them to be scared. i am determined to show that life is still worth living, regardless of that dark cloud looming above. i celebrate the little victories...time on the treadmill, the joy of a completed painting, that delicious green salad i made for dinner..laughing with friends. and it works for me....

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