Saturday, February 20, 2016

Music and art event for ALS

 Tomorrow is the opening of a music and art event to help raise funds and awareness towards a disease called ALS Amyotrophic lateral sclerosis but perhaps better known as Lou Gehrig's disease.  I did not know too much about this disease until my Father got it a few years ago.  I watched my Father slowly deteriorate, but I don't think I ever really believed he would die. 
 It began with the muscles in his foot failing, then it moved up his leg until last year, after falling for the third time, he decided to remain in bed.  My father was a very active man and was always rushing around laughing and causing mischief.   To me he was much like this bird.  Flying, making song and forever on the move until suddenly a string catches its foot.  It gets more and more trapped until eventually all is taken from it.  It is a vile disease that immobilizes the body yet leaves the mind intact.    I would come visit a few times a week and we would laugh and joke and pretend nothing was wrong.  My father now lived in a hospital bed in my parents living room.  My mom sleeping on the couch beside him at night.    There were metal arm bars to each side of his bed and my father would say as I was about to leave after visiting "Oh it's too awkward to hug over these bars lets just shake hands"  I wanted to hug him each time but I didn't because that is what he wanted.  I don't know why I agreed to do this because it was so informal and strange.  I never did hug my father again as, last month, he got pneumonia and died in the night. 

     When my mother called me early in the morning to say my father had died, it was a very  unreal feeling for me.  I could not quite understand that I would never get to speak to my father again, and I replayed the last conversations I had with him, just a day earlier, over in my mind.  I thought about how we had built up a relationship with one another over time, he understood me in ways that many others never have, and I like to think that I knew him in a similar way.  I thought to myself "where does this history or connection that we had go now?"  It is no longer a two way street but instead just memories that I hold alone within myself.  I felt almost as though I needed something physical to remember him by.  This in order to keep what we had alive.  I now think of it in a different way.  I imagine it as though going to a live symphony orchestra, and reveling in the music that we hear.  As the concert passes by and the final note, of the final song, slowly fades away to silence, I am not left with nothing but rather the experience of knowing my father.  And that is what I cherish. 
      The work is simply called "To Dad, love Bryn" and all proceeds from its auction go to  AISLA Onlus.  If you wish to donate, listen to music or bid on this work then here is the slurl.  The event begins tomorrow at 2pm SLT with Lisa Brune performing and will have various musicians and DJs until February 28th when the auction and event closes.  There are three other wonderful artists involved with original artwork you can bid on as well, Mistero Hifeng, Solkide Auer and Kicca Igaly.


 Here is the slurl to the event http://maps.secondlife.com/secondlife/Sand%20Storm/133/141/3906


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