RockOut ALS Awareness Pt. 1

30 09 2012

First I want to thank everyone who rushed in to help share the message over the last week, who linked the music they love, that inspires them.  Who shared a gift of sound, to help a person keep focused when they face moments of adversity, when they feel they are challenged with an obstacle and want to overcome it.  I want to thank you all for drawing us together around that fire so we can all warm ourselves and go back out to face our limitations.

Thank you Tiffany to getting the ball rolling, for shattering the silence and sharing your voice, for you love of life and your contribution.  Thank you Helena for you soul and your spirit, for offering your wisdom from the depth of your own fight and sharing songs that merge your lessons of how fight, survive, and believe.  Thank you Nathan, my escrima/kali brother, for your honesty, support, and humility…but also for your inspiration.  Thank you Susan for your touching music choice and for being such a wonderful supporter, for reaching and touching people - sharing of the Iron Horse Challenge page and finding a network of people who have been affected by this disease within your own circle:  You helped to join new hands to this cause and raise the cry of awareness!It was through all those acts that we helped to bring people together…and that is the spirit of the RockOut ALS Awareness…the idea that through the simple act of sharing music, we can through it, share hope and inspiration and we can bring more voices together.  I hope in that, we can join together the fractures that ALS is responsible for causing.

I will admit, I wasn’t sure if people woud grab onto this idea. I was idealistic that it could use Facebook to spread such an idea, that sharing music could be a fun viral media awareness act.

Months ago, through various Facebook pages, I noted many manifestations of ALS awareness have risen up.

There was the movement to dub the symbol of the ALS struggle with a sunflower.  This I found curious and also personally symbolic as my mother was a lover of the bloom and the plant, of the birds that would feed on it, and its tall presence in the garden was in some way similar to her own, as she stood 5’ll”.

mom gardenThe symbol was also present along the Iron Horse Challenge ride to Dayton, standing as tall, golden fences along the edge of  a number of farms.   I recall one year, on the teams way back, some of the riders/support crew jumped off to the side of the road and took in the site of a field of sunflowers so large that it ignited their imaginations and they captured it as best the could with pictures.

sunflowermanWhy my musing?  Why do I hang on this idea of viral/media inspired social awareness?  I suppose its because many different ideas of ALS awareness are drawn up as we all attempt to honor, symbolize, and remember those we have loved, who have died or suffered from this disease.  We seek to find meaning and find ways of representing it, of fighting back and of celebrating.  Of creating a banner to fight under or a symbol to rally behind.

There have been so many different campaigns that have come and virally spread through Facebook, some living for moments and others finding life for for weeks, months, or longer.  I remember countless images of a candle vigil and then there was a bicep curl flash in the pan (that was even dreamed up into a potential calendar)

bflex als I recall the campaign to make a family dog into a symbol for the movement and the lecacy of its bond with the PALS and thier family.  The list goes on and on and each seems to find a purchase and it heralded by the community, it find a way to shine a light, to renew the commitment of awareness and energy, to keep the memories alive.

There are really so many that rise up.

I have been amazed by how people grab onto them and proliferate them and I think of how many connections that are born of this and were made by this act, virally through just that one site, through Facebook.  I marvel at the number of how many people these actions touched and helped to link our hands together.

Last year, in July of 2011  on the Tri State Trek, many of the ‘ALS Facebook Family’ came together and rode the journey from Boston to NY in a show of nationwide (and even international) unity.  We had all found each other through the web and it was amazing that here we were, meeting each other for the first time and joining in together in a unified way to fight in our common goal:  to defeat this disease and share that legacy with those we love.

tst2011 031tst2011 032

Out of that spirit, was created a flag to act as a banner to lead the charge and this community has taken it all over the country to many different events.  On it is printed the many names that were submitted by these amazing ALS fighters, of the people who they knew, loved, and sought to honor.  It is a list of who they represented, the voices of those who suffered from ALS.  Right now, members of that ‘Facebook ALS family’ are now all enjoying a well deserved rest after the 1st ever Napa Valley ALSTDI 100 mile ride to fight ALS.  Its a moment to savor, to take a pause, and be humbled by the act of so many being unified and joined through a viral/social media.  Who have gone beyond the digital and have shared the sun, the road, the laugher, the challenge.  I hope they all can feel the strength of their gift to each other and to the larger ALS fighting community.  I hope also that they can rest, heal, and recover.

napatstalsflag

Above all, I hope they all finished safely and were able to share and cherish each others company, to walk away with that gift of fellowship, and find in its embrace the love of those who have suffered and for whom they fight.  The journey they collectively have taken is an act for all of them and for all of us – for anyone who wishes an end to this painful and persistent legacy.

This kind of media voice for ALS is relatively new.

The ability to reach so many people and to bring them together, especially those who are PALS themselves (people with ALS), is incredible.  It allows PALS to  express themselves longer, gives them a chance to share their journey and ask questions of a broader community, to get information, and find hope and a community to support them.

It if wasn’t for this medium of sharing, I wouldn’t have learned of Tim and Kaylan, I wouldn’t have developed such a unique relationship with Jon Blais’s parents, or have found so many people, causes, events, and opportunities to join hands in this war.

My desire is simple.  End this disease.

To do this, I realize it will take the collective hands of many, it will take a show of force that has yet to be fully unleashed.  I  also know that it will be through us all, those of us who decide that collectively, no matter what we do, where we are, or what we have, we can always work to share a voice, a cause, and a movement.

I have also come to realize that the bombardment of so many media posts can also dim and dull a message.

I know that it can cause competition and it can also smother other noble and worthy causes.  It can split the ‘donation dollar’ and stiffle new attempts to create awareness.

It is true also that we can each be so absorbed in our own acts of creating action, of participating in events, and in our own pushing of boundaries and seeking…that we can find ourselves even fighting for our message of ALS awareness to rise above the din of so many daily Facebook events and stories.

It can be a mire of ‘support me’ and it can work against us.

The Truth is: We are only as strong as the link that joins us.

The work can only be lighter if we share the many hands it takes to build this consciouness and awareness of ALS.  We all must be collectively purposeful in not allowing our own voice and our own desires to stop the message from going forward.  We must be mindful and aware of others.

We must help each other forward as each step one of us takes, we all take with them.

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There is a constant reminder in my heart to be grateful for any support that I get, for any chance to link hands with people and to find connection in this swirl of celebration, loss, defiance, life, and challenges.

I am so happy that the message got out. I am grateful that in my own way, with the help of the generous people at Goal/Zero, that another act of ALS Awareness could touch a few people and link a few more hands.  All I wanted to do was spread the word, share some music, and maybe reach and raise the spirits of my fellow Napa Valley riders, or maybe some of my local Defeat ALS walkers, or my own IHC supporters.

The RockOut ALS campaign is just the beginning.  There are quite a few Goal/Zero speakers to give away…and so I ask everyone :

please don’t put down the message, please keep sharing the link and adding your own voice with a sharing of music.

We have already helped to bring people together.  Keep RockingOut ALS Awareness and please add your voices.

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Next Weekend is the IHC “Blazeman Express” ride from Columbus to Cincinnati, OH….127 miles of Ohio Rail-to-Trail and one of the most amazing experiences of the year…we will ride through autumn beauty and pass through many towns, sharing our message of ALS Awareness and celebrating the act of doing More than hoping for a Cure!

Your support is very needed, because Without you, We go Nowhere!

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Please give a hearty congrats to Nathan Curly…. the person who posted the video above and who was the only person whose video was forwarded for its inspirational tune…he is the first to win one of 5 Goal/Zero speakers!  Thank you Nathan for RockingOut ALS Awareness and for your amazing support!

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Please keep the RockOut ALS Awareness actions going…the next winner will be announced Friday Oct. 5th and I am increasing the number of chances to win as I have 5 speakers to give away to those who can keep the message moving!





RockOut ALS Awareness

23 09 2012
Often Awesome episode 22

Today, just hours from now a number of wonderful Ohio cyclists will rise in the dark, cold hours of this September morning to trudge over to Staufs Coffee Roasters at 1277 Grandview Ave, to mug up with a cup of Gehrig’s blend (a brew that Staufs cooked up to raise money and awareness for the Central and Southern Ohio ALS chapter with $2 from each cup to the cause)…and then at 6am, hit the road, the trail and we do not stop till we get to the 11am Walk to Defeat ALS at

Community Park – 691 E Dayton Yellow Springs Rd, Fairborn, OH 45324

all to show that ALS cannot hide in the state of Ohio and there are those who are willing to go the distance and do more than hope for a cure! 

This post is a special one as it is the link to our RockOut ALS Awareness campaign.  As this ride from Columbus, OH to Dayton, OH is dubbed after Tim LaFollette, and is known now as the “Often Awesome Express” ride.

As Tim was a talent musician and a key member of the band Decoration Ghost as well as a close friend to Snuzz (whose music is the closing tune of the Often Awesome video series) another talented musician fighting his own illness, it seems only appropriate that any awareness campaign be woven with music.

Here is the skinny:

I want you to help me raise ALS awareness and rock it out with music.  To help you, I am offering a social media/viral challenge and setting as the incentive a give away – FREE- of a Goal/Zero RockOut portable, weatherproof, outdoor USB powered Speaker!

How you win>

   Share this link:

http://www.youtube.com/watch?v=V8RhVpn3r9I&feature=relmfu

  with this heading:

I ___(your name)___Want to RockOut ALS Awareness and need your help.  Please visit the Iron Horse Challenge page here on facebook and the supportive blog bit.ly/ALSWARRIOR and post on the Iron Horse Challenge page a music video that you think can help the ALSwarriors riding 70miles in 5 hours to prove ALS cannot hide in Ohio.  Put my name in the ‘comments’ and I can win a Goal/Zero RockOut Speaker for Free just for your sharing!

    Its that simple.  Share it Viral on Facebook.  Help us drive traffic and share music. Rock Out ALS one song at a time and if you get the most mentions and videos with your name attached YOU WIN.  Free.  No donations necessary. 

This will run until Sept. 29th 2012 at noon.  A winner will be announced and the speaker is yours. And you Rocked ALS! 





RockOut for ALS Awareness

19 09 2012

Often Awesome Episode 20

For those of you who have been tuning in, looking to see some of what I’ve been alluding to through the Iron Horse Challenge page of Facebook, I thank you and also want to say I’m sorry for the delay.

Sept. is  a mix of emotions.  It contains the seed of this event and of all the efforts that have followed, as it was the month that my mother was not only born in, but also the one she died in.  It is the month that the Walks to Defeat ALS take place in Ohio, not in just Columbus, Dayton and Cincinnati, but all across our state.   It is this division, the distance between the Northern Ohio ALS chapter and Central and Southern Ohio ALS chapter, and the 6 separate walks that take place in large and smaller communities,  who all told providing the support for the whole of the ALS community in Ohio.  It was this that inspired me to create the IHC and to attempt to connect dots on a map, to the potentials of human connection that is at the root of supporting our pALS (people with ALS).

When I started this event 6 years ago, I was barely aware that a local chapter existed to support those suffering from ALS, or that there might be other communities less fortunate, let alone that the Columbus Walk to Defeat was held not even 1 mile from my parents house.  Such lacking awareness is part of the condition of the disease and furthers to damage caused by muffling the soft voices of those suffering,  and which robs the community of the roar that it needs to raise awareness: an Awareness piviotal to securing the funding and the motivation that is needed nationally for a cure.  Simply…United we stand, Divided we fall.

2 years ago I realized that my goal to Unify Ohio in its fight against ALS was not complete, that it couldn’t be complete as it wasn’t whole enough in its action to support the idea.  This came with the realization that our state is  cut in half between two ALSA chapters.  It presented a challenge to reach further and I took up this obstacle and I rode 157 miles from Columbus to Canton to participate in the Walk to Defeat ALS there.  The journey  brought me through lands rich with Amish and Mennonite communities, through the last remnants of the Ohio black swamps, and over hills that are the lingering breath of the Appalachian legacy.    The voyage brought me to the realization that within any of these communities, there could be families struggling to maintain themselves while wrestling with this disease, who do so without an army of voices, a media consciousness, or a motivated medical community.

Could a ride connecting a few Walks do this?  Ask that of Pelatonia.  Ask that of the MS 150.  Can we raise the consciousness?  Can we change the contour of how a populace demands a cure?  I think we can.

But..

Without You! We go Nowhere!

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How to RockOut for ALS Awareness:

Last year the company Goal/Zero did a humbling and amazing thing by donating to our Iron Horse Challenge event with nearly $300 worth of RockOut portable, weather and impact resistant USB powered speakers.  Riders who participated on the newly dubbed “Often Awesome Express”, honoring Tim LaFollette and the Often Awesome Army, each received one for their riding nearly 70 miles in 5 hrs, from Columbus to Dayton/Fairborn to participate in the Walk to Defeat ALS there.

Since this ride is in tribute to Tim, who was an amazing and talented musician, and the OA, who managed to host many musical shows to not only raise awareness and connect many communities under its banner, it also brought up the need to raise the bar on how we can stay connected and give voice to this fight.  Tim was fantastic about raising his voice – in song, in deed, and in Defiance of ALS.  The fact that we have Goal/Zero RockOut Speakers to give away is beautifully fitting.  All that being said…I have a challenge for you:

This year I have a few remaining speakers and they will go to 2 motivated and wonderful social media megaphones.

On  Saturday September 22nd, the day before we ride from Columbus to Dayton, I will post a musical video link from this site.

To win the speakers you need to do the following:

  • Find the message on the Iron Horse Challenge Facebook page that will be posted the same day.  It will have a message fragment and a link.
  • Copy the link and fragment and put your name in it (this will be obvious where to do that)
  • Post the completed message and link to your Facebook page as your status with the attached music video in the ‘comments’ below and tell your friends to go to the IHC site on Facebook and post your name (in the copied message fragment)
  • The person whose name is posted on the IHC Facebook page the most or who has the most viral links to this blog or the IHC page WINS the Goal/Zero speakers!!!!

This is an awareness campaign.  I understand that the economy and many other factors are distancing people from donating to many wonderful causes.  I know that social media is a powerful tool and can help as well as oversaturate and dull a message.  So to combat that I’m hoping that an modern take on a ‘chain letter’ can help me raise some awareness and help us to RockOut the ALS Awareness!

You do not need to donate any money to win.

You don’t need to ride or walk.

You don’t need to live in Ohio (I will ship it to you)

There are 2 chances to win.

  1. The first winner will be announced on Saturday Sept. 29th on this Blog (not on Facebook)
  2. The second winner will be announced on Monday October 8th, with the posted pictures from the ‘Blazeman Express’ ride from Columbus to Cincinnati (127 miles of Ohio beauty).

All you need to do is follow a few directions, share a few links, and help drive media traffic and awareness to this blog and to the Iron Horse Challenge page on Facebook.

We may all find we know someone with ALS.  We may find ourselves in a more connected community than we realize.  We may find new reasons to cherish the fact that we can fight, that we need to, and that voices must be raised until we can hear the words: “I am an ALS survivor”

Help me RockOut the ALS Awareness message and we all do more than Hope for a Cure!

Here is a little plug about the speakers…they kind of speak for themselves.

Goal/Zero RockOut rechargeable portable speaker




Gifts of Action

14 09 2012

Goal Zero Guide 10+ Solar Charging Adventure Kit

So last year I was keeping tabs on Facebook on a company named Goal/Zero.  After many years of cycling across the state and taking trips to Boston and other locations to do charity events, cycling adventures, or backpacking excursions, I would occasionally fall into a situation where accessible power to recharge was inconsistent.  I began to think very deeply about investing in solar devices that would free me from this limitation. 

So many long solo cycling trips, especially down the Little Miami on the ride to Cincinnati, I would run into the limitations of power.  I got in the habit of having my Garmin GPS and a second cycling computer (more battery simplistic) as invariably one would die (most often the Garmin) and the last thing I wanted to do was to be stranded in unknown territory with vague maps, no compass, and no idea of how far I’d gone. One trip from Columbus, OH to Canton, OH to do the ALS walk there, taught me that maps and roads can often be contentious and cycling trail maps can be vague.  Having a primitive phone doesn’t help either (but then that would sometimes die after a long haul too). 

Then there were other power needs: my camera, phone, bike lights (battery and USB powered), and even laptop or media player.

I spent years researching solar unit, coveting this one and that, always with the price somewhat out of reach and wondering how it would all work.  Stumbling upon Goal/Zero I immediately realized this was a product I was interested in and began following them, to stay up on their evolution and holding out the hope that one day I would get one.

Last year Goal/Zero launched a wonderful Facebook campaign, giving away gear every weeks and the responses they got were tremendous; I was watching and participating every step of the way!  I then sent them a simple letter.  I outlined the Iron Horse Challenge and some of my cycling plans, potential adventures, and desire to make the IHC a even better event – would they be willing or interested in helping us?

I was blown away when last year Goal Zero sent a box full of RockOut speakers and each of the ‘Often Awesome Express’ riders who made the journey from Columbus to Dayton to do the Walk to Defeat ALS earned one!

Dayton IHC 2011 goal0Brian, Mike, and Steven offering thumbs up for Goal/Zero at Ha Ha pizza (some of the riders had already scooted so they were not featured).

I wanted to thank Goal/Zero for such amazing gifts of support and this year they topped themselves and donated the Goal Zero Guide 10+ Charger and Adventure kit (video above)!!!  With a retail cost around $160 this is an amazing device and I have some experience with it as I purchased one and use it on a regular basis.

The images below outline how I usually wear this around town and on my way to work.  The unit is very adaptable, light, and easy to carry.  Every corner has a flexible cord loop that allows you to secure and attach this to nearly any backpack, top bag, or harness and it can also be hung from windows, doors, or walls easily to do the solar capturing when you are not home.

 

goal zero promo 003goal zero promo 005this is what it looks like to bike with

goal zero promo 006goal zero promo 008

goal zero promo 007here you can see the carabiner attachment that I use and if you look close, the way I even manage to utilize a zip tie and one of the pack straps.  It can stand upright, flat, or be hung and if you look up some of the video tests they have on youtube you will see how durable the unit is.

goal zero promo 010goal zero promo 013Biking is where it really comes in handy.  On longer rides when I use a rack and a top-bag or saddlebags, it simply hangs on the tops or from the side and collects power when I ride.  The power then transfers to 4AA batteries or I can get it directly from the unit.  goal zero promo 014goal zero promo 019

The device has a power switch that indicates when its charged or empty and the switch also moves over to power a light built into the charging unit that can be used for emergency lighting or low light situations.

 goal zero promo 015goal zero promo 017

Here you can see me powering up my Garmin GPS and my main front light (both which power off the same size USB cable.

goal zero promo 016goal zero promo 018goal zero promo 020

Now here is how you get a chance to own and win one of your own:

This years Iron Horse Challenge is pleased to include a few fun Awareness Campaign opportunities.  As ALS is often labeled as an ‘Orphan Disease’, as the medical and pharmaceutical industries have little incentive to work with a disease that is fatal and degenerative, with little sign of reward for drug or other treatments, the silence on this killer and the lack of investment is tragic and painful.

Over 70 years have passed since Lou Gehrig was diagnosed and gave his famous “luckiest man alive” speech and yet no cure, helpful drugs, or treatments have been discovered.  Only within the last 5 years, with the help of many fighters like the Blazeman Foundation and ALSTDI, have signs of progress started show.

What this means is we need funds and awareness to make more positive change happen.  The Iron Horse Challenge and the Walk to Defeat ALS is part of that.

If you are following this blog, signed up to ride, or following on Iron Horse Challenge on Facebook, this means you are part of this too and your help is critical.

Here is the winning challenge for the Goal/Zero 10+ Kit

The top fundraiser, this means any individual who walks, rides, volunteers, or simply donates….Wins this Device.  That simple.

What you need to do is:

Donate to any of these three Walk to Defeat ALS events to the walk teams/cycling team that is a part of the Iron Horse Challenge and you are entered. 

Here are the links:

“Often Awesome Express” Dayton/Fairborn Walk To Defeat ALS

http://webcsoh.alsa.org/site/TR/Walks/CentralandSouthernOhio?px=1616689&pg=personal&fr_id=8157

“Sandy’s Walk and Pancake Breakfast” Columbus Walk to Defeat ALS

http://webcsoh.alsa.org/site/TR/Walks/CentralandSouthernOhio?px=1616689&pg=personal&fr_id=8156

“Blazeman Express” Cincinnati Walk to Defeat ALS

http://webcsoh.alsa.org/site/TR/Walks/CentralandSouthernOhio?px=1616689&pg=personal&fr_id=8155

 

Remember you can donate to any of them. 

Be sure to include your name or to have others who donate to your awareness effort to indicate you and their donation will add up to count on your fund raising total.

Winner will be announced on October 10th.

It should also be mentioned that I would like the winner, once they get the Goal/Zero gift to take a picture and do a brief thank you to the company for supporting our effort to Fight ALS!





On Gaining Ground

14 09 2012
Often Awesome ~ Episode 19 “who cares?”

If you were following the Often Awesome video series from the first episode and watched them in order, progressing forward sequentially, this is one of the most hard hitting.  It shows in, with such balance, the evolving, destructive nature of the ALS and what it begins to do to the ‘global aspect’ of the community and to those who love them.

The loss of mobility, the installment of a trach tube, the difficulty speaking-communicating, the growing sense of panic and dread; for the person struggling with the disease and then the intensity of caring for someone from those who love them.

Each person struggling with the disease face the limitations of research and the availability of information.  Family members, friends, begin to devour books, online resources, anything that might give them some sort of predictable expectation.  Doctors and nurses, holistic care websites and practitioners, medical journals, connecting to local ALSA chapters or advocacy organizations all begin to pour growing amounts of information and services; the obstacles the disease begins to impose start to become each day more solid and overwhelming.

The thing about this episode that so touches me is that it forms a blueprint of sorts, outlines how a few key people will begin to turn the tide and use their energies to not only deal with the ‘symptom logistics’ but also start putting in place the humanity and the means for a person fighting ALS to do so with dignity and with their individuality in place – in many ways it’s a force greater than hope.

My family was spared in some ways.  My mother’s progress was subtle at first and progressively swifter.  Her first symptom was a slur to her speech and a difficulty swallowing.  Her inability to eat enough daily nutrition made her loose weight and mass; not an easy thing to do when your 5’11” tall and rarely weighed over 115 lbs.  Her loss of muscle mass in her legs made it difficult to know whether it was the progress of the disease or simple diet mechanics that started stealing her ability to walk, drive, or stand for long.  The speed of going from mobile driver, to cane, to walker, to chair bound was even too fast for my mom to grasp, let alone the small number of care givers doing rotation; namely my father, sister, my mom’s best friends, and me.

When I imply we were spared, I suppose I mean that we never had stages of complete paralysis.  Her loss of speech was the most crushing to us and one of the most awakening realizations was when she wrote on a marker board :

“What I wouldn’t give for a good scream”…..

That was when I realized, even something that basic, a act so taken for granted, was gone.

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Tomorrow will be 6 years, to the day, since she passed away and even the mention of it tears me up and opens an emotional floodgate.  One of the questions I sit with is in asking myself what have I done and what difference I have made, in honoring her, in creating awareness, in taking the extra step so that others might not have to go through what my family did; to sit here mourning and struggling.

There are so many things that need to be said and yet the timing of presenting them is awkward and distracting, pulling away from the mind that wants to remember and the heart that wrestles with trying to touch the love that was left behind and the memories – dealing with the flood that is set loose in touching it – and then there are the practical details; the ones that don’t resonate with remembering and feeling.  I can’t help but consider that this too is a measure of progress.

It took my father a few years before he could join me on my cycling efforts to fight ALS.  It was hard many years to get him to involve himself in the Iron Horse Challenge rides and some years he would be gone.  He regularly finds a road and a reason to get out of town over the days around my mother’s death on Sept. 14th – leaving my sister and myself to try and do what we can for each other.

More and more, we gain a bit of ground.  More and more we manage to unearth the love that my mother left behind and find the strength and resources to touch it, grow from it, and make something from it.  She wanted all of us to love ourselves and the life she helped to give us that she shared with us and taught us to respect.  She was a giving person to the very last and as much as she passionately wanted to be free of the growing prison that was stealing her movement, her voice, her freedom, and her breath…she wanted her family and her friends to be free of it too.

Being able to sit whole with your memories and not be tortured by them, to face the sickening loss, or the chest-gripping grief…that is part of that reclaiming of ground.  Being able to remember my mother’s smile, her laughter, her voice, the weight of her hugs and smile is a gift of freedom.

To bike across the state of Ohio, across a country she loved, full of the smells of autumn (her favorite season), and to know that she would have loved to share this…is a powerful act of healing for me.  I do it with her; not without her.

It makes the miles melt.

Its about gaining ground.

On the day she died, there was a moment when the evening light was diming and many friends had come and gone, promising to return; exhausted, grieving, and hungry.  My father, sister, and I were gathered around her and the silence was drawn thickly around the room, punctuated only by my mothers rhythmic breathing and our occasional sobs.  In a move to change this, my father threw in some music, to help us all.  His act was random, blind, fueled with a need and so it was interesting that the disc he threw in was one I had bought my mother years ago, one Christmas.  The whole disc played and the last song…this one..was the last bit of music my mother heard before she passed.

It still crushes me to listen to it and I am yet so grateful to share it with you.  Please listen to this and remember your loved ones… and if you knew my mother, think of her.

Aretha Franklin–Amazing Grace




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

YOU.

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





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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