Often Awesome and Tim and Kaylan’s fight

1 07 2010

For those of you who are not already linked to facebook, or haven’t made it out to the ALSTDI site and checked out some of the other important and inspiring projects fueling the fight against ALS, there is a story that you must check out.  It has fueled a focus on the young people who are affected by this disease and taken the perception of who this disease affects and how it ignores race, gender, social demographic, and age lines.  It is one of many such stories, but its honesty, humanism, and tenderness is impossible to ignore and the fight is today and now and the urgency is real.  It is a story about community, love, friendship, passion, and music and it is called Often Awesome and some of its members are called the Often Awesome Army. 

This is about a deep love between Tim and Kaylan and the documentation of a movement to support Tim through his diagnosis.  He is a passionate musician and a ALSwarrior and his wife and his friends have shown that when a community comes together it does amazing things.  I am posting the 14th video (so there are many more to see and I will try to post them all, but really you should reach out and find them, on facebook or online and show your support) and it strikes me personally in a strange way.

I spent a time in Scotland and it was to be a pivotal time for me artistically, emotionally, and spiritually.  It was the first time I traveled overseas and I was lucky enough to share this space with a dear friend  Barbara and walk in the shadows of streets that another buddy of mine had walked (Tom McKenzie – even going so far as to be tattooed by the same artist).  It was illuminating place and an important experience.  When my mother was diagnosed with ALS many of my relationships suffered and I lost contacts with many who were dear to me and years later when my fight against ALS led me to the Tri State Trek and ALSTDF (now ALSTDI), my connections with the people I cared about, who had made Scotland such a powerful place for me, had been weakened and lay quiet.  My humble surprise was that during my first fundraising attempts for the Tri State Trek, that a quiet donation slipped in from the mighty land of the Scots and floored me; that my friend was still out there and was supporting my fight.  I’ve never forgotten the power of that awakening, nor that amazing woman. 

When Tim and Kaylan posted the video of their trip and the details of the joy, passion, painfulness, and struggle of their journey, I was immediately drawn to their story in a new way.  They had already showed a deeper capacity to illustrate the life of a person, not a patient or a victim of ALS, to render it with all the qualities of Tim’s struggle to maintain himself, his connections, his music, his love in the face of the disease.  His ability to accept and reject in the same breath, to mock it and tell it to f**k off, to say “I will love despite this” is so reminiscent of my mother and Kaylan’s struggles and suffering as a partner seems so much like my father’s…its a story that is quite alive and is so close to home that I will fight for Tim’s and Kaylan’s relationship, for their lives, by never putting this fight down! 

This year Join the Often Awesome Army!  Fight ALS!  Help us find a cure!  Ring more Cowbell!  Raise more Awareness!  and lets all do MORE that HOPE for a Cure!




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