Another Saturday, another day of riding.  This time we geared up and headed for Ottawa, the Nation’s capital.

On my ride today my thoughts were of Claire and also of Lyle back at home.  I found out that he lost the use of his thumb, the only thing that he had control of; the only form of control in his life.  I found this news extremely disturbing and very upsetting.  Even though I know on a psychological level the realities of ALS, I still find it hard to deal with on an emotional level.  Watching people go through this is an exceptionally difficult thing to do. 

I realized after meeting Claire why I get so upset after talking with patients and the reason is because I can’t save them.  Up until recently my life’s work has been wildlife rehabilitation and I specialized in oil spill response.  I am used to “fixing” things and if they can’t be fixed then I can euthanize them in a humane way.  With this disease, I feel totally helpless, and it seems a bit futile at times and I am not sure my efforts even matter.  I wonder what difference I am really making here and I doubt myself and this journey. 

But then I think of Lyle and all the other people I have met and I remember that Claire did not give up on her school, and I will not give up on this journey either.  I know that even though I can’t save the people I have met, that we have given them voices, that we are helping them, in some small way, to been seen and heard and not the forgotten ones.  I have decided today that I want to get involved on the political front and fight for government care.  People should not lose their homes and retirement plans simply because they have ALS.  I want people to truly understand what ALS is and what families go through.  I want to help out in some small way so that others will not have to  feel such loss in their lives. 

-jeannie

Last Modified : October 2nd, 2007 Filed under : On The Road Navigate : Previous post / Next post