My Facebook friend and fellow PALS Beth Popa Castelvetere wrote this on her Facebook page yesterday. It is so touching, so much of what I am afraid of facing in my future. She is a strong woman, with a powerful will to live.
ALS is stealing my voice...ah yes my voice.
To say it is the hardest loss to deal with is an understatement. I had an astounding, articulate, amazing, even argumentative voice. Put me on a stage, in front of a large or small crowd, no fears, I was your girl. I loved it. Communicating, counseling, consoling, yep all me. Let us not forget the loud okay sometimes a little obnoxious me. (Yes, I can admit that :))
Our voices express a multitude of emotions, feelings ranging from sadness to happiness, hostility to peace, dislike to love, grief to encouragement and so many more. It is in this last statement i will miss my voice the most. Have you ever thought of your voice in this way? Chances are not likely, all of us, even me pre ALS somewhat take it for granted.
Say this out loud for me please, whatever your age, "In 2-5 years, in some cases earlier, I will lose my legs, I will not be able to walk through the park, I will lose my arms, I will not be able to hug my loved ones, I will lose my ability to swallow, I will not be able to have an ice cold water on a hot, humid day, I will lose my voice, saying I love you isn't an option, and yes I will not breathe, take my breath away has a whole new meaning. I have no cure, no treatment, no help."
This is only a fraction of what ALS does. I ask not for pity, I ask for help for the future, I ask for your time to discuss, acknowledge, help fund ALS. During the holiday season remember each other, love each other, for some it may be our last. I started this with what ALS is now "stealing" from me, let it be known it does not steal my heart, it will not steal my spirit. I'm "okay" my spirit is stronger than ever.
Real life. Real facts. Real me.
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