Renewal & Gratitude: Often Awesome episode 17

28 08 2012

No better way to start this than to quote Tim’s speech “…One happy mother fucker”

Now if there is any chance you didn’t watch this video, or you planned to after you read on (I’m honored really…but stop)…go now and watch this…don’t worry…

I’ll wait.  Its worth it and it ties into what I’m about to write.

—-

Tim died a year ago.

Not to the day, but close enough that watching this is not only one of the most powerful reminders and inspirations on why those of us who have been touched by ALS, directly or peripherally, are forever in this war, but it is also also heart-breaking reminder of how recently we lost this passionate fighter.  I can’t watch it and not tear up; for them, for my family, for me, for all of us.

A year ago, upon hearing that Tim was in the hospital, rumors swimming around facebook, horrible and shark-like, finning news of how he was or was not, I found myself in a perplexing position.  Here was an amazing man, in love with a perfect partner, and surrounded by an army of advocates, fighting for his life and in the midst of finding his own place with the struggle and the suffering.  Here I was, overwhelmed with concern, consumed with a sickening sadness, crying over a person that I only really knew from a social media channel, from the weekly/monthly Often Awesome episodes, who had so touched me with his story and his spirit, rich with bravery and defiance, that he was indelibly written into my heart.  I was mourning a person I had never met, almost as if he was my own family, and yet through it all it still remains  one of the most illuminating and educational examples of how fucked up this disease is and how it affects families and communities.

Its powerful.

If you haven’t seen the rest of the series….go watch them.

Over the next few weeks, as we lead up to the Iron Horse Challenge, I will be posting the remainder of the series; the ones that I never got to show, when the blog posting fell off.

With Tim’s passing falling so close to the Iron Horse rides and with a extreme desire to do something to celebrate and honor this ruthless ALS warrior,  I dubbed the first ride with a name :

The “Often Awesome Express” – 72 miles along the Ohio to Erie trail route, from Staufs Coffee Roasters (1277 Grandview Ave) to the Fairborn Community Park for a 2.5mile walk and back to Yellow Springs for the finish line.  This route is dedicated to Tim, his Army, and Kaylan.  This year for those scanning for content, the event is:

Sunday, September 23rd.  5:15am.  Staufs.  Roll out is @ 6am.  Walk is at 11am. 

72 miles in 4hrs…you betcha….be prepared 15mph/ave.

——————-

I can’t say what exactly led me away from the blog.

Maybe it was the enormity of what needed to be felt, translated, shared, or said.  Maybe it was the wealth of miles and pictures piling up, or the multiple nature of maintaining a presence on Facebook and trying to tap into the social network of it.

It takes an amazing amount of dedication to ride almost 200o miles a year for charitable/non-profit causes, to teach myself to run all over again, to train to fight.  On top of maintaining a Facebook page devoted to the cause (and I do manage to keep the Iron Horse Challenge page on Facebook up to date, especially at times of events and fundraising and giving voice to developments), the blog and the depth and emotional commitment, got harder and harder to do. Its not an excuse, its an attempt at an explanation; but even that is incomplete and doesn’t really explain being gone for so long.

The blog was evolving, becoming more about deeper and more complex issues, or at least that’s what it has been morphing into,  what so many people noted when I took it up again after the last long step away.  It started when I realized that ‘keeping a nice, neutral and positive face’  wasn’t allowing me to be honest to myself, let alone the community I hoped to reach.

The blog is now a journal of this path and its not solely my own.  Though I am always surprised how few respond to my offer to share their stories on here when I present it.  It’s a way of navigating and illuminating the journey that I’m sharing, whether it be the personal one I wrestle with, as I deal with the loss of my mother and its affect on my family, or the broader one that includes the Iron Horse Challenge, the Blazeman Foundation, the Tri State Trek, the Levinson Foundation, the Often Awesome, or the ALSA.

Its about giving a voice to what this disease does.  Its about illuminating the lives it intersects with and its about the triumph of action, of doing something to preserve and celebrate, rage and mourn, and honor the lives that are touched by it.

————–

Dayton IHC 2011 deanclanDayton IHC 2011 ed amela mayaDayton IHC 2011 046Dayton IHC 2011 051

This is the crew from the 2011 IHC ride from Columbus to Dayton.  The first one that I named for the Often Awesome.

There are many reasons why I want to share this, not the least of which is because all of them are…well…awesome.

Dean Marcellana rode for his 2nd year, in sandals and is surrounded by his lovely family on the top left.  Amela and Ed with their new daughter Maya is top right; Ed was the one of the first to ride this route 6 years ago, when I was first getting things started.  Max Ink, my roommate is the one in red, running crew for us; he was the other rider from the first year and it was his first ride ever spanning a distance longer than a local work commute.  The posse in the bottom right are Mike Lacy and his Team Speranza buddy Brian Bradley and grinning off to the right is Steven Hurt (of the Tour de H2O); the unspoken member of last years ride is held in their hands – Goal Zero…who was our first official sponsor!

This all brings me to the point of where I’m going and the title of this entry and the tie in with what Tim says in Episode 17.  If you still haven’t watched it, go now, listen to his speech.  Don’t worry…I’ll wait….

——

The restart of this blog comes at an important time, but it also comes with an important concept at its heart.  It’s the nature of how energy is given and received, how its exchanged, and how it feeds into ideas like hope and gratitude.

When I first started the Iron Horse Challenge it was born from the idea that action can create hope and this began a long journey of meditating on the nature of hope and how it affects action.

I hoped that the IHC would inspire others, that it could contain in it and give rise to a movement like the Tri State Trek (there is a lot of posts about this so catch up if you can and you will understand what I mean).  I hoped that it would help instill in others a desire to do more, to go the extra mile – literally and figuratively.  Tangibly I hoped it would lead to more awareness towards  ALS and the role of the local ALSA chapter, that it might connect some dots, broader than those on a map, and would help all of us in this community to galvanize and merge to create a larger voice.  I hoped it could draw in area businesses and media, create a pool of resources, and ultimately give rise to a compassionate and humanizing wave that those families touched by ALS could use to share their stories.

There is a lot in that ambitious beginning and ‘hope’ is splashed all over it.

It was a few years ago, involving many ups and downs, that I came to rest on the words of Robert Blais, father of Jon Blais, the IronMan triathlete and inspiration for the Blazeman Foundation, who said “Do more than Hope — Cure”  summing up a concise way an important realization that I was already turning the page on.  Hoping doesn’t necessarily create action and its often not enough to keep the wheels moving and sometimes its not even enough to pull a community together.

What is in Tim’s words over a year ago, is also fresh in my own; it’s the crossroad where action, born of hope, crosses into gratitude.  It’s the place where the unexpected is made real, where hopes don’t compare to the actions that happen and where the overwhelming sense of being grateful takes over.

One thing my mother and I share in common is a giving/gifting nature and we also both share an inability to accept gifts well.  It’s a squirmy, deflecting kind of manifestation that often is mistaken for a lack of gratitude; while being very far from the truth.  It’s a overwhelming feeling of being cared for and considered that has a whole emotional life of its own.  It was something my mother was never good at negotiating and well…neither am I.

Going on 6 years of continuous action to support non-profits, not-for-profits, charitable actions, and causes, I have been the recipient of many humbling acts of consideration. It creates a lot of reason to find a way to express how grateful I am and  I have a lot of people to thank and a lot to be grateful for.

No matter how difficult the struggle, or frustrating it can be to perpetually reach out, to come up against the realization that in some ways your beginning to sound like a broken record and in other moments feeling like you’re a ‘tax’ on your family and friends, its always humbling and breathtaking when you find so much generosity and compassion, helping you to cross the goal.  To find that your message is heard, supported, and your actions are finding a place in the hearts of others, is truly a place of deepest gratitude.

The next few posts are going to be born of this feeling of gratefulness, of thanks, and I am going to try and not only continue to share the remaining episodes of the Often Awesome, in an expression of gratitude to Tim and Kaylan and the OA for all of their inspiration and bravery, but I also want to draw awareness to the many riders, volunteers, and supporters who have made this journey truly amazing.

I will also be sharing some of the new developments in this years IHC, including expressing some thanks and gratitude along the way for the growing number of sponsors who have given generously of themselves and who have humbled me, by allowing me to grow the IHC to another level and believe in what we are doing.

This restart is born on the idea of acknowledging everyone who has made this journey possible, who inspires and keeps the path clear, and who reminds me what humanity and compassion can really accomplish.

I want to thank you – everyone – for your patience and your chance to open this blog up again to you, to open up a new chapter and to take another step in this action to do more than hope for an end to ALS.  One day I want to hear the words “I am an ALS survivor”.  Frankly it will be one of the happiest and saddest days of my life.

I am grateful for you all.

Dayton IHC 2011 Timthe sign we rode with last year..in the ALSA field of paper sunflowers.

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2 responses

26 04 2016
Home improvement Store

Write more, thats all I have to say. Literally, it seems as though you relied on the
video to make your point. You obviously know what youre talking about, why throw
away your intelligence on just posting videos to your blog when you could be giving us something informative to read?

26 04 2016
alswarriorohio

Shana, I am deeply grateful that you felt compelled to reply. The blog has been for some time in a holding pattern as many events have transpired, including my own death due to a cardiac incident while I was running the Dash for Donation in Columbus and then quickly on the heels of the incident I discovered that I was to be a father. At present I am working full time, raising a family, teaching martial arts, growing a tea business, and still fighting for the cause. More energy was put into the Iron Horse Challenge on Facebook, as this format was seemly reaching a larger audience than the blog and was quicker for me to update. The Blog continues to be updated on a yearly basis with dates for the ride and details for the route. I hope at some point to get back to regular posting, but at present I’m unable to provide more consistent updates. Best wishes, Iron Horse Challenge founder Shawn Schulte

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