Monday, July 25, 2011

The stage of life, not my final bow!

I am sitting here listening to music and feeling kind of sad. When I was very little I wanted to be a singer. As I got older I was able to do more and had a few gigs. At the time I never thought I was great, good yes but great I was not. I remember watching my cousin perform and at that moment I wanted to be just like her. When she sang she sang with emotion and strength and her voice absolutely beautiful.
With ALS the disease affects the nerves and the muscles eventually die. This can also affect a person's speech and also affect breathing that can lead to ones death.

I love singing and I was able to sing with emotion and feeling, now that is gone. This disease is taking much away and yes it makes me feel sad. John and I met while singing and even though the disease has affected my voice John still likes it when I sing. I think he needs hearing aids... Lol! On a serious note, I never thought that my voice would be affected.
I am not saying this for sympathy and please I don't want any. I say this because many people still don't know what ALS is or what all is affected. The only thing it doesn't affect is a person's mind. So please know they can hear and understand you.

What would you be terrified of losing? I am becoming a prisoner in my own body and there is absolutely nothing that I can do about it. Or is their? See I like to keep positive and yes I can do something and I'm doing just that. Even though I will never be able to sing or perform again it doesn't mean that I have taken my last final bow. I am doing exactly what I believe God has planned for me. I need and want very much to put smiles on faces for those who can't and just because I am not able to sing, I still can make people smile. I like to think that wherever I go to raise awareness and to make people smile I am on a stage. I call it a stage of life and I am not ready for the final curtain call or that final bow. I may not be able to sing but rest assure this disease will not ever shut me up. I always said I have a loud mouth and I am going to use the gifts God gave me to help raise ALS Awareness to find treatment and a cure for this disease. No one should have to be a prisoner in their own body,. So when you hear a song you like, start singing and sing out loud and sing for every person that no longer has a voice.


  1. Robin, You are a sweetheart..... ALS sucks, and you continue to raise awareness each and every day!!! I am so glad we are Facebook friends!! You are an inspiration to so many!!!
    Love You!! Sheri (((hugs)))

  2. I love you always and your an inspiration to all that know you