Wednesday, June 02, 2004


I drove to her care facility to pick Patti up today for a dinner at home. I found her lying in bed with a bowel accident in her Depend disposable underwear. Trying to change and clean her up was more than an ordeal with her increasing leg spasticity only smearing the mess all over clothing and bed linen.
Cleaning up sh*t, somehow I just could not get the recent article regarding quality of life out of my head:
"...Researchers found 77% of people with MS said they were mostly satisfied or delighted with their quality of life..."
For dinner at home I try to do something special and prepared crab cakes, corn on the cob, and tropical fruit salad
Yet driving back less than half an hour after dinner Patti could not even remember what she ate. She barely could transfer in and out of the car, and required another change of Depend disposable underwear. She couldn't even remember where she had been.
Only two days earlier I had driven her back from a Memorial Day family cookout marred by a bowel accident at dinner necessitating a complete shower. Mercifully Patti's memory blocked that episode.
Pondering this littany of symptoms, here again another recent story the Terri Garr interview popped into my head:
"...Tell me about your symptoms right now. The only one I've heard you talk about is your slight limp, which I don't think anyone would notice if they didn't know..."
Are we all talking about the same disease? What is quality of life? What is heartbreak? Sometimes I swear the mainstream media lives in some kind of denial

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