ALS is a peculiar disease. The journey is filled with twists and turns. Nothing is precise or predictable--even death. Some live one year, some live ten.
Recently, two of my pen pals have become "locked in"(unable to communicate). This news has brought tears. I grieve the loss of their friendship and their loss to participate in life. People some times forget that although we have new communication techniques, wonderful caregivers, ALS support personnel, family and friends, we still may be shut out of life by sudden progression. If the fingers don't move we can't type, if we lose our voice we can't phone, if our eyes don't move due to total paralysis, we can't use "eye gaze." However, we always stay alert in our still body. We hear, see and feel emotions.
It's a scary and lonely road to travel. I'm one of the lucky ones--I have all of you to walk with me.
2 comments:
i love the photo you chose to go with this text you typed - the one lone cat going it alone. ALS sounds so scary, i don't know how i would handle it? i don't imagine i'd be anywhere near as strong about it as you are. i'm just blessed to be your friend here in blogland and to say a prayer for you everyday. hang in there, karyn, you bless my heart on a regular basis. and even though we haven't met in person, i love you anyway! may God righly bless you today, right there where you are, right now!
and, i forgot, i want to borrow your cat/canadian moose pix to put on my blog. i grew up in newfoundland, and even though i haven't been there in almost 40 years, it still sounds like home to me :)
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