a good way to consider the war on ALS…

25 08 2011

Today began with a quote and like the nature of most quotes it can be taken out of its original context but in some cases (and hopefully in this one) it can have added significance when applied to fresh contexts…and it ran like this:

“There’s a difference between interest and commitment. When you’re interested in doing something, you do it only when it’s convenient. When you’re committed to something, you accept no excuses, only results.” – Kenneth Blanchard

The Often Awesome army embodies this concept…

It was what inspired me so much about ALSTDI and the Tri State Trek…

It sings in the ALSA’s words “Walk because you Can”…

Its in the force of the Blazeman Foundation and in each brave word and deed done by Jon Blais and his family…

It’s the Iron in the Iron Horse Challenge.

Last year I started an experiment, having been deeply changed by the stories and the lives of ALS, having my grandfather pass away from Parkinson’s disease, watching lives altered by cancer, and deprived of basic quality of life through acts of lack of access to clean water….I decided my world was filled with stories and causes, places where action and compassion could make a difference, and it was the beginning of a journey to travel 1000 miles on a bike, over the course of a year, and on a string of events that were to be my path and my pearls, to see what I could do with what I have.

This blog was always meant to be a resource and a place to promote ALS awareness, to further my actions and thoughts on how to bring change, to fight this War on awarness, and how to bridge the connection between so many lives.  I wanted to share peoples stories and as my awareness of so many interconnections grew, through facebook and the internet, through community events, and joining other peoples actions, I began to find other outlets that seemed to share more community than single person writing a journal of his adventures. I found myself always fighting the feeling that it wasn’t creating a community or finding a purpose in that community.  I grew frustrated with the lack of social interaction and even viewed some of my blog actions as a veneer , birthing the belief that I wasn’t doing what I intended to do, which was bring a voice to those who struggle and fight with ALS; to be that ‘Scream’ that my mother always wished for when she could no longer speak.

In a way it was partly those recurring feelings that drew me away.  Yet it must also be added, that the energy to sit down and write, to post photos, and tell the best tale I could, was not always there.  My body was exhausted, as weekend after weekend, and event after event took its toll on me physically and emotionally.  I drained out and couldn’t find my way back to the blog.

Part of my rediscovery I have to credit to 2 sources: the first is Live Writer – a program that I’m learning and I hope will make posting easier.  We will see…yesterday was my first attempt, today is my second.

The second is my need to share more complete stories, beyond the limited facebook reach of a 100 or so characters, in a way that would flesh out my thoughts and fulfill a role of telling a tale that is mine; but which I hope to be greater than my own.

Yes, this is still my main means of hopefully putting details in the hands of people who want to join me in this fight for a cure for ALS.  To illustrate the Iron Horse Challenge (IHC) and perhaps to anchor it.  But I will never stop wanting it to be a place to share the stories and lives of those who live daily in the face of this disease, who fight it, who love through it, and who want a place to scream.

Tim LaFollette posted his life in a raw and public way, created a community, made art and music more vibrant, made love and living a priority, and made defiance of this disease a daily and powerful reminder.  I may have never had a chance to know this man, to wipe sweat from his brow, or hug him;  I dearly wish I could have.  His actions made me want to move, just to be close and to do what I could.  His actions galvanized my commitment to return to school and to work towards a nursing degree, because I want to do more.  More than write a blog, ride a bike, do a triathlon, run a marathon, fight with sticks, or stand here and wish I could have smiled in the face of that amazing man.

I want to do all that I can to provide a place where those fighting ALS can live with dignity, with freedom, and with compassion that is giving not because a disease compels me, but because they deserve it;  we need more than hope….we need a cure.

Oh and when that cure comes….I’m still going to be pissed…because it killed people like Tim and my mom…and broke the hearts of people like Kaylan and my dad.

I’ve been playing somewhat diplomatic in my writing on here to present a voice of inclusion for so many who might not know what this disease does or what its like, who might be having a hard enough time conceiving what its like to ride 74 miles, let alone what its like to lose your ability to walk, to speak, to eat, or to breath in less than a year.

That time is over.

Fuck ALS!

Get off the sidelines…get on the horse!




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