Imagine not being able to move. Anything. Period. Ever. Not now, not tomorrow, not anytime. Oh, but your brain is still alive and you can see and hear everything. You still feel pain, both the physical kind and the kind of the heart, sensing a life that has vanished and been replaced with one that feels like a prison. Alive but trapped. You can’t move, or talk, or eat, or drink or breathe. You just exist. This is the life that Barbara is living. This is the life of an ALS patient.
Barbara has a machine that breathes for her. She has a feeding tube into which medication and nutrition are injected and she has a another tube to relieve her waste. She has feelings and can sometimes show a slight smile. Miraculously, she still has some limited control of her arms but her fingers remain curled up like fists. She has difficulty holding her head up straight, though her spirit continues as high and positive as ever.
What is most amazing, however, is that she rarely thinks of herself, but continues to show compassion for us, her family. She, in her own way, rejoices in our victories, and weeps in our sorrows. She shows us every day what humanity is all about. She does not complain about this horrid fate she has been given, but shows us what it means to live a life of selfless love for others. She humbles us with her spirit.
Every night I pray that Barbara will be able to experience some small piece of joy in whatever life remains in her, that her soul be filled with a peace that calms her fears, and that any pain be removed from her body. These times bring forth the realization that when all else is stripped away from your life, things that used to mean so much, what is left is amazingly filled with a love that transcends this life and gives new meaning to our world.
I’m writing to ask your help in finding a cure, if not for Barbara, for someone else. Amyotrophic lateral sclerosis (ALS) strikes without warning, and knows no boundaries. I hope you never have to know it up close and personal like we do. I will be joining my daughter Jennifer in the Walk to Defeat ALS on October 31st to raise awareness and donations for the research of this dreadful disease. Please help me and all of the other people suffering from this debilitating illness and thank you for your generosity.
