29 08 2008

Every 90 minutes someone is diagnosed with ALS. Every 90 minutes someone dies from ALS. The life expectancy of an ALS patient is 2-5 years from the date of their diagnosis.

These are grim facts.

In that time families, friends, lovers, and individuals go through tremendous changes as they attempt to grasp and struggle with the changes poised by this disease. In addition, as the neuromuscular degeneration deepens, each individual deals with a unique progression of the loss of their movement and limits of their physical control. As such, no matter how “predictable” the facts attempt to provide a compass to both the Individual fighting the disease and to their network of loved ones, each route the disease takes is a staggering journey for all involved and everyone touched has an experience to relate. For a disease that can rob people of their most intimate of signatures – their voice – communication and its necessity becomes a pivotal factor in a person’s ability to find a way to fight, to ask for help, to gain comfort from understanding and from the reflection of their individual spirit and mind; it is something that can be rapidly eclipsed by the effects of the disease. So many stories are lost. So many voices, once taken for granted, are converted into the most precious music and the most mourned casualties.

Together we can celebrate these voices. We can give hope with their resonance, with the power of these brave songs. We can paint the stories of the living and record the tales of their struggle. We can give new sound to the echoes that are pervading our memorie.  I want to hear your story, about your fight. I want to uncover these libraries of lives to others, so that all of us can live deeper and better, and to never forget the love we have been gifted and shared. I want us all to remember. I want us all to have a chance to heal. I want us all to have the strength to never relinquish the fight.

Please, please send me your stories!

I will post them and shout them and carry them and celebrate them and walk, ride, and fight for each and every voice, until each name becomes my own and we all become a family in hope.

My Mother’s last words in the last journal she kept resound deeply in her understanding and her voice:

I started out

Red haired



I grew

5’11 1/2″

Most of my life I

weighed 115 lbs.

gained 45 lbs. with Shawn

40 lbs. with Wendy

I shrank


more white than red

still freckled.




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