Fronts in the War: SOD1, Tim Lafollette, and the Blazeman.

“I’d like to think that if I do end up dying, its not from the disease…I’m dying because  its my time to go.  One way or another this thing is not going to win.”

Tim says this with confidence and defiance at the end of this episode and I think its true.  For myself, I can say how dreadful it was when a few days prior to Tim’s passing, that a word spread like fire around facebook that Tim has passed, and not in a nice way, but rather with mournful epitaphs that rang with RIP.  A few of the facebook ALS people I knew rapidly began spreading the word “He hasn’t passed yet, he’s in the hospital.  He’s not gone.”  I think I hated facebook at that moment. I couldn’t help but think how angry I would have been if the viral concern over my mother had spread word around that she had passed, especially if it had happened while I was already stressed out, working myself to death, fighting my emotions and choking them down to even put in a days work, so that I could race home and be part of the changing of the guard with my sister, father, a nurse, or friend.  When the rumor went around, my first feeling was a sinking in my heart and I was devastated; I actually felt as if I had stepped off a rollercoaster and dropped a few floors.  When it turned out he was in the hospital, my relief was immediate, but the sinking was still churning in my guts, and it was rapidly being filled up with anger.

There are some great things about the power of social media and networking.  It does great things to draw communities like this together and great families.  I watched how amazing that could be at the TST this year, when so many ‘facebook friends’ came together (from across the country and from overseas!) to be a part of it.  It was amazing and humbling and wonderful.

This rumor of Tim’s death was not one of them.

I kept thinking of how horrible it would be for Kaylan, his family, his close (and perhaps distant) friends, his band-mates, to find some reference online and be destroyed.  If that had happened with my mom….well…its best to not think of that.  My heart went out to Tim and Kaylan and stayed there and I all wanted was to hear that he was recovering.  It seems that was not the timing of things….it was his time to go.

It makes me also recall, in a way, the odd circumstances surrounding my adoption of the ALSWARRIOR title.  A backstory in brief, my father was a member of the 173rd Airborne in Vietnam (you might note that number on my bike on the TST and other references), so growing up I was following a legacy that went back to my grandfather, where I believed my future would be in the military.  I was in ROTC.  I gravitated towards the martial arts (and I am a student of them to this day).  I grafted on the idea that this was a WAR on ALS the minute my mom was diagnosed.  It was her war and it was ours as the people who loved her.  When I first contacted ALSTDI, shortly after her passing in Sept. of 2006, I had already settled on the marriage of my martial legacy and my commitment to honor my parents love, and declare War on ALS.  Mat Mendel was quick to point out, that there was another, very well known ALS warrior: Jon Blais.  Jon Blais, banner raising ALSWARRIOR POET, the ‘BLAZEMAN’, had already declared WAR and he and his family and friends were dominating the public with proving that a determined warrior could accomplish anything: Including doing a full IronMan Triathlon with a diagnosis of ALS.  Jon fought for the right, his rights and his dignity, to do the IronMan in Hawaii, Kona and proved that determination and defiance of this disease can be one of the most powerful tools in finding a cure and transforming the face of the War.

Jon passed shortly after I learned of him and of his feats.  It was not long after that I stumbled across an event here in Columbus, put on by an amazing woman, Carrie McCoy of JustTri (a triathlon training/family/batch of warriors).  Carrie, knowing of Jon’s amazing feat stared a yearly event that has been my starting ground every year in Feb. : The Spin-a-thon for Jon Blais.  Cyclist ride in teams, in a stationary relay ride, for 17.5 hrs, to remember the heroic effort of Jon on the IronMan and to raise funds for the Blazeman Foundation, run by Jon’s family.

Its strange how many fronts there are in this war, how many divisions and ways to attack the mystery of this disease.  How many wonderful and passion people and actions, events, and fundraisers that all strive to the same end: a cure.

Jon’s dad, Robert Blais, said it best to me one day: “We need more that hope, we need a cure.”  He rattled something deep in me, that reminded me that no matter how we Hope, we must act, we must want more than hope, we must want a CURE, more than the comfort of and act, more than the comfort of hope.  The War doesn’t end, until people like Tim get to live and love without this disease casting a shadow.  Where my nephew and niece get to know what its like to share Christmas with their Grandmother.  Where my dad get to retire with his wife of MORE than 36 years and gets to celebrate growing old and knowing they did an amazing job.

So this WAR is personal and there are many views on how to fight it.  I find myself being strongly influenced by Jon Blais, the TST, and the walks.  So I fight for them all.  literally and figuratively.

This years Spin-a-Thon for Jon Blais was my kick-start to my year.  After riding 1000 miles for charity, rapidly changing gears and running a retail store with 20+ employees and a lot on the line, feeling the distinct pain of not having my mom for the holidays, and then changing roles in my company…I was a bit toasty.  So a chance to combat the winter blahs and spin for Jon was just up my ally.

I typically sign up for 4hrs in the saddle.  This year I was lucky and I nearly had enough people to fill up a whole team myself.  Now the funny part of this, is that my crew is a beautiful motley of riders: Max Ink – the illustrator and comic writer.  Mike Lacey, bold-black-and beautifully full of ornery spirit, member of Team Speranza.  Audra Slocum – PHD candidate with a masters in education and a heart as big as social activism can encompass. 2 riders I gained from the Iron Horse Challenge facebook page and I barely knew, but was grateful for.  Carrie helped fill in a few gaps and I’m sure I missed a few that I should remember but missed due to my own time slot.  Now the bulk of the riders are Carrie’s JustTri crew, hardcore triathletes in training and this is a day to train and to stay sharp for the season ahead.  My crew is a bit more…er….eclectic and I love them for mixing up the energy.

Last year Premier Athletic club decided to add to the diversity of our charity ride and hosted a ‘health’ fair at the gym, with vendors handing out samples, beverages, literature, massages, etc…   We still had top billing in the main foyer, but the surrounding area was thronging with vendors and gym patrons.  It gave us some new traffic, and perhaps even some press.  Though there were more than a handful of people who came up wondering what we were giving away for free, and were confused when we mentioned we were riding for charity and would love their support. Despite all of this we were the first to arrive at the gym and the last to close it out, lasting far longer than the ‘health fair’ and its freebie hustle.

This year, Premier did it again, only this time they didn’t want us having the main floor and put us in a racket ball court, behind glass, and away from the public.  It gave us little chance to engage the public, to work the front table, to answer questions and it also created distance between us and the patrons and made it difficult to gain any connection to the community.  Carrie and all the riders did an amazing job and I also know that everyone pulled together and tried to make it a fun and fundraising time.  My hope is that next year we have a chance to really blow it out of the water in the Columbus community and share the power of Jon’s message and the efforts of the Blazeman Foundation.

Here are the photos I took

And if you think I forgot to represent each and every face of this War on ALS?  Think Again!  Tim and Kaylan, Often Awesome, the Iron Horse Challenge, The Walks to Defeat ALS, the Marc Levinson Foundation, the Tri State Trek and ALSTDI, and the reason for the ride : The Blazeman Foundation and the battle cry of “Do More than Hope!”

Please note the mighty efforts of Team Speranza and the kits supplied by the Cyclists Connection.  Robert and Mary Anne Blais in the background – very fitting.

And of course the passion of Carrie McCoy and Just Tri!! Thank you for all you do!