Art as Action

30 08 2012
Often Awesome ~ Episode 18 : “All That Yas”

“…Its not your grandfather’s disease…”

I never really knew either of my Grandfather’s.  Both lived to see me born, but neither lived long enough for me to have much memory of them or for me to have an idea of what is was to lose them.  The legacy of my Grandfather’s is in my flesh, DNA squirreled behind and granted to me by my parents.

My Mom’s father was a railroad man; pictures of him in the classic striped outfit and signature rail man’s cap, always made railroad tracks magical and special places.  He died quietly one day, in a sunbeam, sitting in his favorite chair, after having come home and sat down, tired from a long day working the rails, in the house he built, in the hills he loved, with his wife in the other room.  It was his heart.  His passing was quiet, painless, peaceful.

My mother’s legacy from my grandfathers heart mystery,  was mitral valve prolapse.  Mine came in the form of a cardiac arrhythmia that came in, sneaking up on me in my late 20’s and which was conquered by a surgical cardiac ablation.  3 months after the operation I was back at it:  I won a silver medal at the Arnold Classic in full contact stick fighting.  In the years that followed I added my first century biking, my first triathlon, duathlon, and so many other heart-testing feats.  Its a tipped hat to my grandfather and to the advancements of medicine that allows me to share this, the work of many awareness programs, heart focused doctors, and surgeons.

For these athletic feats, some have called me a tank.  I would rather  think fondly of being a Iron Horse.


Tim’s ALS was inherited.  Familial ALS.  Losing his mother early and other members of his family; a cost of which I can’t even imagine.  To find yourself diagnosed is horrifying enough, but to have seen it ravage your family for generations and to face down the legacy of it in yourself and defy it, as he did, with grace, vitriol, humor, love, humility, bravery, and crass…that takes it to an ART.

Everyday, being the son of a mother who has passed of ALS, raises the question of “Am I next” and yet, to allow yourself to live under that specter would be suffocating and crippling.  Instead I face it in tiny breaths, like gasping as a cyclist on the road, inhaling car exhaust; its fleeting and momentary.

The amazing thing is how Tim waged war on it and the way he put life first and the disease second;  this is perhaps why I consider him a hero.  The art that he created was in how he did it, how he shared it, how he continued to be and express and create, and also in how he inspired.

Episode 18 was always a touch strange to me.  It came off as somehow less personal and instead was so much of a gracious thank you for a tiny, beautiful girl with a growing gift and considerate and loving parents.  Not that this isn’t powerful or important, it is.  The fact that her parents were nurturing their daughter and her art and guiding it that creative passion into supporting the Often Awesome: its a powerful lesson.  Its an example of  how we can always find new resources, new ways to reach out, to be inspired, to create, and to act.  The community came together, showed its joined fabric, and helped connect the art of sharing, of creating, with the art of compassion.  It creates a feeling of hope.  It created in Tim’s own words a feeling he expressed with these words:  “I appreciated it so much….raising money is one thing…but really..raising awareness is where the focus needs to be now…and I’m glad people are out there singing that gospel”.  It’s a intense feeling to feel so humbled and grateful for such a overwhelming coming together of support.  To find that you are loved, considered, that this disease can’t make you invisible; even as it strips you of so many things – your voice, your movement, your life.


Keeping up in the beginning with the AO and the series was a constant reminder and a constant source of inspiration.

I started a program of holding 1 charity art show a year, where I invited artists of multiple disciplines, talents, and backgrounds to pick a charity they felt passionate about, create and enter a work of art, and show it in collaboration with other artists (each Aug/Sept)with the goal of  donating part/all of the proceeds to the charity of their choice.  We held these at Stauf’s Coffee Roasters and to see it come together was amazing in itself and I was so touched when so many of the artists would offer a portion of the sales to my ALS fight.  It was ART as ACTION and I hoped it would be a fire that would  fuel a community.

In the early days of this blog, you can find entries with the shows, the art, the names of the artists, and the appeals to support them in their own efforts to raise awareness.  Please go back, find them, look at it…any comments you add, I will share with the artists; many of them I can still track down and know.

I can be honest and not attempt to put a shine on it.  No art ever sold.  No community ever came together.  The local press ignored us – despite appeals.  I struggled year after year to gather together and convince artists it was a way to share with the local community that there were many causes worth attention and worth fighting for…worth creating art over and worth being inspired by.  I still believe this.

It takes a community.  It takes joined hands.  It takes persistence, love, memory, action and ultimately it takes turning that into passion and into art.

I think it also takes love.  Deep, inspiring, and powerful.

It takes people like Tim.

Like Jon Blais.

Sandy Schulte.

and ultimately

it takes


Like I often shout out:  “We go Nowhere, Without YOU!”  Your support, your voice, your actions are critical to any success, particularly when it comes to awareness.  Media might be fickle or self-absorbed, but this shouldn’t stop us from sharing our stories, our lives, being considerate of each other – and more – creating a compassionate community that is thoughtful…and allow that to build into inspiration.  We can make each act a work of art, each action a work of creation, a celebration, a howl of music, a ring of fire that keeps catching until nothing is left but – CURE.


The parents of that girl mention that she may grow up with no direct memory or understanding of what she did, by creating art and inspiring so many people to donate to Tim and the Often Awesome.  Some day, what the OA created in the video series will reach her and she will know, perhaps be stunned or humbled, and perhaps may be astonished by what she managed to do.

One of the functions (it can be argued) that Art can do is to preserve our memories and to communicate; allowing the art to live and share that life lived beyond the now.  Those that bought her art, have it as a memory of Tim.  Wedded to it, will be a little girl, an art show, and a sense of joy and loss.  The art keeps the memories and that life alive, present, and vibrant.

The music that became the end song of the OA video series is Snuzz’s “die trying”.  The song will forever link me to feelings of remembering my mother and of Tim saying “Fuck ALS” ( I tried to get them to play this at the end of the Tri State Trek this year at the BBQ finish-line, but nobody had a copy…next year I’m bringing it just in case).

Case in point: Alive, present, vibrant.

Life.  Action. Art. Memory.


My nephew was only a baby when my mother passed.  My niece wasn’t even born.  Neither have much of an idea why each year we walk around Beekman Park with hundreds of other people, or why there is a huge group of strangers assembled for pancakes at my parent’s home one seemingly random Sunday, every year in September.

IHC Columbus 2011 028IHC Columbus 2011 026

Like that girl, they don’t know in a deeper sense what they are doing, or who for, or why.  I’m grateful in some ways that they don’t feel the sick sense of loss that my father, sister, and I do.

They will like myself, grow up without a concept, a true tangible feeling, or memory of their grandmother.  They will learn (in time) that a terrible disease stepped between them and a loving, generous woman who dearly loved them and would have done anything for them.  Who would have made holidays magical and birthdays amazing.  Without ALS they would have had a powerful example of partnership and love, watching my father and mother care for each other and celebrate together.

Instead, most of these ‘would have been (s)’ will be like the tales my grandmother and mother told of my grandfather.

Their lives are touched now by ALS in ways they may never understand.

Curing this disease would mean that they may never have to.

Only Art and Love would remain.

IHC test 2011 021



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