Monday, October 8, 2012

My journey Across America for ALS

Well I'm here in the camper and thinking about all that John and I have done. To think that Across America for ALS was just a thought that we put into action. Having ALS has made me aware of how much we put things off. Many first thought that this journey was a vacation /pleasure trip in our rv. This mission that we are on is very far from a vacation. Although we are having a great time, this is work. It amazes me at how many people that have never heard about ALS. But the rewarding part is after educating people and giving them my Advocate card and seeing them on facebook. That is such an amazing feeling knowing that we touched someone in such a way. And to think that this was put together from talking on the way from Cleveland doctor appointment. But when it was put into action was the day after hearing the news about a very dear friend Rob Tison who is now an ALS Angel. His death made me so very angry about ALS that I couldn't just sit back and allow this disease destroy and take great people away. On this journey we have met some amazing people and we all have one thing in common. Many of you are saying or thinking ALS. Guess what? You're wrong... We have in common that one : we need to find effective treatment and a cure so no one else has to deal with ALS. The second and very important is that we all are living and not dying. Even though ALS is a disease that takes everything away, we the ALS patients find the strength to hang on and fight with all we have. This journey has not only inspired me. I see how much John has come out of his shell. Before this disease he would never go up to someone to make conversation. Now you can't stop him and to be honest anyone who tries to stop him would be a complete fool because he won't let anyone stop him. He has dealt with me at my worst and deals with this disease daily. I have my soulmate forever. With this disease it can make or break a relationship. John and I have heard how people who deal with this disease and others that their partner/spouse will just up and leave. This disease does add stress and lets face it some people can't or just don't want to deal with this or any terminal illness. John is not only my husband, he is my everything. I know he is right there for me no matter what and he wouldn't have it any other way. This journey has allowed us to see things that we can hold in our hearts and look back on. We realized that even though we are faced with a terminal illness, we won't allow it to control us. This journey has given me so much and to share it with the world but most important the ones I love so very much and them supporting us means so much to me. Even though I want to get national attention, not for me but for this disease. Its amazing that even if I don't I know that my family is and will always be proud of how we are helping others and to me that is the greatest reward ever. So when you are out in public go up and ask the question... Do you know what ALS is? Then educate them or talk about this disease. I do know for a fact that you will make people think.
So until we see each other again remember Never give UP!

1 comment:

  1. Robin,

    Glad ya'll are doing such a neat thing for yourselves and for others! I hope your trip continues to build wonderful memories for you and that ya'll will have a blast!! ~ Judy