A Compliment That Can Be So Cruel

Friday, 14 July 2006

I read this in the Yahoo! groups 'Living with ALS' chat room that my dad and I read to keep in touch with caregivers and patients with ALS around the nation...It was written so beautifully that I just thought I should share it.

"I am me....

My arms do not move, yet I see them dancing above me, circling the rays of sun that break through the curtains of my bedroom window. They gently run across my wife's back when she returns home from work, loving me even though I can no longer embrace her. I long to love her as I did for years before my body betrayed my mind's commands, ignoring the orders as though a disobedient child. She tells me a joke and my laughter is so loud, it hurts my ears and rings through my head even though I know no words escape my still lips. I smile but my expression does not change and I hope my pleasure claims expression in the intensity of my gaze. I run with my child even though my legs do not work, kicking at the soccer ball, splashing through the beach, chasing her with the dogs, even though I can only sit by the sea and watch as others chase her instead. She runs ahead in innocent jest, splashing and kicking sand across the shore. She returns and wraps her arms around me. I hold her so tightly with my mind that I am afraid that the mere thought of hugging her will be too much. I know if I let go, she might disappear away from these chains, which invisibly wrap around my arms and legs, sentencing me to a life without expression, speech or movement. It is almost as if she breathes for me – my child who has become my caregiver. A tear falls from my eye as I realize the hardest part of letting go is to say goodbye to her and my wife without being able to say the words. And then I see myself running along the beach again, free and strong and full of life, yet I cannot touch the world around me. My spirit soars and my life is perfect even though those around me cannot see how perfect it is just because I am loved and can love in return. I am free because I hope and I fly because my imagination tells me it is possible. Nothing can take my spirit, not even my body that has robbed me of so much. I can do all things. I can feel all things. I can love and embrace and dance through the shadows of time with nothing more than the knowledge that I am more that the sum of my parts. I am I. I am at peace and even though outsiders might not believe me, I am well." - Author Unknown -

As I was bathing Dad today, I commented how his left hand is so good because his fingers are straight and not curled. (He always likes me to focus on scrubbing in between his fingers because they get sticky and clammy.) But, he replied that it's not that his fingers are "good"; they're straight because he has lost all function in them already. The muscles are completely gone, and that's why all five of his fingers of his left hand lay flat. There is no longer any definition in between his thumb and index finger. His right hand, however, is the dominant one, so that's why he can still move his thumb a little. But, his hands and fingers do not twitch like they used to because he is losing the muscles in them. He thanked me for trying to be complimentary, but ALS is a disease that can be so cruel that it brings out the harshest of realities.

Today, Dad needed an aspirin for a headache. He's never had headaches before, and didn't know if it was because of a lack of oxygen or because he didn't sleep well last night. I hooked him up on the Bi-Pap for an hour and he slept most of the day. How awful it must feel to be trapped in your own deteriorating body, but although his fingers or toes may not be able to move, I hope that my dad "can love and embrace and dance" as long as he can because I KNOW that his spirit is strong and that he has a lot of love yet to share.