“There’s just a lot of things in our laws and our health care that need to be changed…so that when people face things like this (ALS) they can do it with dignity…and not be robbed of the things they love in their life.” – Pat Szafranski (Kaylan’s mom)

This statement strikes at the core of what I feel about what is going on in this public war with ALS, as well as in the hope that I have for becoming a nurse: I want to insure and protect that dignity, that independence.  To have your movement robbed by a disease is tragic enough, to have it steal your voice and literally the food from your mouth is a horror, to take the air from your lungs – a nightmare.  To have to fight the disease and at the same time fight for your identity when all these physical things start eroding and to have your family, friends, and community begin to become your voice, your movement, and your expression is another deep act that is not easy and requires a balance of self-acceptance and self love; to recognize that you are taken care of and cherished to be so advocated and supported.  My mother was ever struggling with the loss of independence and with the gratefulness of having a family of support – to find that balance and have a fierce purpose to your life in spite of this disease taking away your basic means – its humbling to witness.  My mother’s defiance and purpose was to continue to take care of us and to remind us to love.  Tim managed to raise an army and through brave deeds and voice, managed to illustrate for us all how to fight defiantly and to live for love.

Its difficult when laws, governments, and organizations protect themselves at the cost of those gifts of humanity, by denying basic rights (like getting married), benefits, or health care coverage.  With a disease that by time of diagnosis can already have compromised a persons ability to speak, to move, to eat, and to provide for themselves, it can be too little, too late.

My family in many ways was very lucky.  They discovered and diagnosed my mother in about a year of evaluation; quick in some cases.  We seemed ideally positioned as well, with my family home being situated less than 10 miles from the Central and Southern Ohio ALS chapters headquarters and less than 3 miles from a company that supplied equipment; we were also less than 6 miles from the hospital that had a hospice center.

The Central and Southern Ohio ALS chapters was with us, helping my mother and father get the supplies, advice, nursing care, assisting devices, information…the support was constant provided the tools that made a difference in the quality of my mother’s life.  They stayed in contact with us afterwards and I owe a debt of gratitude for the compassionate and enthusiastic ear of Marlin Seymour, the chapters director, for all her assistance in helping us with my mother’s care, but also for her kind words when she passed, and also for her help with my projects to make things like the Iron Horse Challenge a reality.

Marlin, was not so fortunate herself.  She knows the value of what the ALSA chapters can provide.  She is brave and honest about how hard it was for her and her family when they were savaged by ALS.  Where they were, they weren’t even aware of the ALSA; there was no chapter where they lived.  They didn’t have the support or supplies, the facilities, the nurses or equipment.  Her family’s fight was brutal and very alone.  She knows the value of community support, awareness, and action.  She has made it her job to make sure no one has to go through what her family went through.  Its personal.

There are so many fronts in the fight against ALS and all of them have an importance and a role.  I can’t help but have an opinion, but I also recognize that opinion is skewed: I am a survivor of losing my mother to ALS. I’m not a PALS.  I’m not a person living with it.  I have a deep empathy for all sides of the War and so I fight it from every angle I can.

So despite the politics and the struggle to debate cure vs. diagnosis vs. therapy vs. care/nursing/quality of life vs. science  – I know we need them all.

The Walks to Defeat ALS are a critical part of the local communities care and for many families the first link to an awareness of this disease and a touch stone for equipment and logistics.  The Walks supply the money and visibility to help the individual chapters operate, to continue to offer the practical day to day information and logistics that provide for that first assurance that quality of life and dignity can be and will be defended.  It is one of the many reasons why I built the Iron Horse Challenge around the local area walks and extended it to connect each town with the message: We are all in this together and no distance is too great, no step too far, that we won’t try and make sure that life and its quality is defended and provided for.

I may have my personal connections, like wanted to honor the IHC with names like the “Often Awesome Express” (Columbus – Dayton/Fairborn) or celebrate the amazing journey of Columbus – Cincinnati with “The Blazeman express” – these people inspire me, they humble me, they have made my life better because of what they have done; they make me want to do more and believe that I can.  But this doesn’t take from the Walks themselves.  I might giggle to have biked 157 miles to Canton, OH to participate in the Northern Ohio ALS chapters Walks to Defeat ALS; a mere 1.5 mile walk – but I know the journey was a vehicle to the Walk itself.  I couldn’t have done it without the passion of the people who volunteer and work to make this event what it is every year.

Its also through the walks that I meet amazing people like Helena Curtis.

I met Helena in 2009, when one slightly overcast, misty September the ALSWARRIOR IHC riders came rolling in to do the walks.  Helena at one point asked us if she could take a team pic and we gratefully gathered together.  It was a seemingly subtle moment, all of the riders tired and happy to be off the bikes, distracted by the flow of the walk and the flagging energy in their limbs.  It was a treat to be recognized and for my part I was pleased that our team could be noted for what we had managed to do.  I never knew that such a small act and in such a brief moment would have the impact of bringing an amazing person into my life.

Helena is without a doubt, one of the people whose simple acts, make the IHC and my actions to support this fight on ALS seem like they make a difference.  She is a follower on the Iron Horse Challenge page on facebook and is usually one of the few people who responds consistently, offering “thumbs up” and keeping my spirits in the saddle.  When my energy is lagging and my pessimism is running high, her simple encouragement reminds me to be grateful and to know that simple acts of appreciation go a long way.  I cherish her like few of my IHC followers if for nothing else than her fighting spirit and her willingness to take that step; to make silence not ok.  I am without a doubt very grateful for her and for the Walks to have allowed me a chance to meets such wonderful people.

I asked Helena recently how she came to this fight and what her experience with ALS was (I know she is a cancer fighter/survivor and that fight is very personal to her).  She kindly sent me these words that I would like to share with you:

Why do I fight for ALS…

As a young adult I was never aware of what ALS was or what it could do, I was clueless.  I had no idea who it affected or how heinous it was when it strikes, until I met Morrie Schwartz in a book.  “Tuesdays with Morrie” was life changing for me.  I was instantly terrified and saddened by the affects this terrible disease has on a person’s body and soul.  To know that a person is ravaged by the disease and maintains mental faculties throughout just became a burnt concept in my mind.  Independence is completely robbed from the body, one function at a time.

Shortly after I read this book and did some more research on Lou Gehrig’s Disease a family friend named Jessica, lost her father due to a long battle with ALS.  She was just a young teenager and she was witness to the loss of her father.  My heart was absolutely broken, it was one thing to know of the disease but once it touched my life so closely, I had to find a way to make a change for other people like her.  I did what anyone would do, I searched for the ALS Association and signed up for the Dayton Walk.  I volunteered that year, wrapping hot dog after hot dog for the walkers.  I was moved to tears by the speakers, but mostly the people I was blessed to work with, who had lost loved ones and were more determined than anyone to beat this disease with research funds.  I kept thinking, this is crazy, why am I here?  People kept asking me and all I could answer was that I cared.  Then I met Shawn Schulte.  He and his group of bicyclists happened into the pavilion where I was working and I noted their shirts boldly stated, “Iron Horse Challenge”.  I approached the group with my camera and snapped a photo that would change my life once again.  Over the next year, I followed Shawn’s dedication and love for his mother who he had lost to ALS.  He lives, breathes and sleeps the fight for a cure.  He never stops and I believe, will never give up.  He blogs,holds events even offers prizes for those that assist him with donating to the cause.  Every time I think my life is difficult, I go to his Facebook page and just take a long look at his photo as a small boy with his mother…then I remember why I care.  She is watching him swing and all the love a mother could possess shines in her face.  It is like Shawn says, “This is what we lose to ALS.”  I am motivated to work towards the day that no other child has to say goodbye to a parent because of ALS.  No more lost mothers or fathers…no more grieving Shawns.

~ thank you Helena…You inspire me to keep moving, to keep doing my best, and to stay grateful and patient.

One of the many gifts that Walking to Defeat can offer: unexpected friends.

Walk because you Can!

“….and this frame is shot horribly”.  Tim LaFollette

The brogue always takes me back, that and the perpetual overcast.  Then again my life is a continuum of overcast days, light misting rain, heat stealing wind, and autumn temperatures.  17 seasons of fishing from June to September can make the world seem bereft of a summer that isn’t alive with jumping salmon, brilliant open skies, and liquid slate ocean horizons.

Despite the fact that it has been nearly 8 years since I last stepped off a plane to look for a dock and find a boat, so many of my senses are wedded to that space.  Visiting Scotland was like that, it was an extension of that time-space and you can see it in the grey backdrops in this episode.  I experienced this again in the forests of Maine, in hikes in the Appalachian mountains, in the volcanic terrain of tongariro national park in New Zealand.  Frankly, everywhere that I have considered akin to home, it draped in this. So its little wonder as Ohio takes a few steps towards autumn and the temps drop and wind twists and the air grows cool and damp, that I feel alive and home.

This was one of my mother’s favorite seasons, though I think it was less about the weather and more about the changing trees and the anticipation of holidays and family gatherings.  She was the power behind much of our families celebrations and it was woven into her from her heritage.

With most of my mother’s side of the family gone, it makes this a odd time of the year; brimming with anticipation but long in its sense of missing something and lonely in its cold.  I do my best to fill my mother’s culinary role with my father, sister, niece and nephew.  I’m totally convinced that my sister’s children associate me with food.

This is a great time of year to take in all the connections that have been made, to celebrate the harvests of community and action. To find reasons to gather and share what we have; whether that be food, fellowship, laughter, or a blanket.  It’s a good time to remember and to cherish what has come and seek to grow new lights in the coming darker months.

Its my favorite season.  Its also a time of deep remembrance as the anniversary of my mother’s death is also the mark of the coming ALS walks in Ohio as well as the dawn of the Iron Horse Challenge.  The ride to Dayton is always the jewel of promise, with its 74 mile length being inviting to so many riders who have gotten stronger through the spring and summer, who have done perhaps a few other events and have gotten a taste for what being part of a charity or community event can be.  It a perfect time, when the summer is still hanging in the day, the sun still vibrates with warmth, and the mornings hint at the coming changes, the cool, crisp air bracing and making everyone wish they packed a few more (and then later a few less) layers.  The Dayton IHC is the best of the season, of being able to make the riders feel like they are alive and getting a last long look at Ohio before its time to drag the bikes inside; losing the daylight and the cold driving people indoors to gyms and stationary trainers.  The beautiful, long light that graces through the morning trees is one of my favorite treats and the chance to view this through Big Run park on Sunday morning, just as the sky begins to lighten and brighten is a great way to begin the days event.

Ohio is so beautiful in the autumn and the chance to share this is as much a gift of the Iron Horse Challenge as any reward I could find; the compassionate will find the fellowship and the walk to be the best gift of all.

I am so grateful for the people who have come together to be a part of this event over the last 5 years, who have kept the momentum going in this local fight to bring awareness and funds to fight ALS here in Ohio.  I wanted also so show just a few pictures of the team that has evolved over the years on our Dayton IHC event and here they are in no particular order:

Audra Slocum, Ed Penczek, Max Ink, Sherry Foster, Darin Hadinger, Amela Pozder, Caitlin Ryan, Jesse Commeret Myers, Lauren Pinkus, Steve Flandro, Denver McCarthy, Lee Hope, Steven Hurt, Dean Marcellana, Lauren Strawn, Jason Cleveland, and Chris Parkerson…thank you for making this such an amazing event and for doing more that hope for a cure for ALS!

Thank you all for your perspective on hope and your commitment toward action to do more than just hope for a cure.  Together the connections we make with each other and to those who fight help change the tide in this war.

You are all ALSWARRIORS!  I am proud of you all.

This is one of the hardest of all the episodes.  Tim and Kaylan go off to Scotland to share their honeymoon, visit friends, and manage to also in the adventure gain moments when the kindness and genuine friendships, allow them to share a few weeks where the disease is a distant memory and let them cavort as only they can.

Then there is Tim, looking and sharing all that he is with you.  Its raw.  The realization that the disease is about to take his movement, his voice, his last vestiges of self-propelled, raucous vocal-wit.  He is being sealed away and he feels it, knows what he is experiencing and shares it with you.

If the sheer nature of the sharing wasn’t enough, there are a few other reasons why this episode is dear and cutting to me.

First I want to share a thought that has been reoccurring as I post these episodes and I feel I need to get it out.  I am not trying to do a play by play commentary on the Often Awesome or Tim and Kaylan’s life, through the medium of the Often Awesome series.  If I did that I would feel I would be not only performing a vampiric act, but I would be exploiting and marginalizing a story that has deeply affected me and that I genuinely think is one of the bravest and most touching and revealing acts of exposing the nature of this disease – how it affects love, community, independence, and living.  Tim and Kaylan’s story is just that and I think it’s a story we should all come to know.  Its purely their journey and while I might find relevance in my own life for the correlations in their experience and the life of my mother, her disease, and its effect on our family – its not to borrow or take from Tim and Kaylan’s story, its to reinforce it, to show how it deeply illustrates the destructive nature of this disease and how we come to live in the face of it.  Tim is so strong for his commitment to leave this disease nowhere to hide and to bring it to US to witness.  It is a colossal ‘fuck you’ to keeping this silent and in the closet.  ALS is killing people right now.  There is no cure.  It does not respect your youth, your gender, your ethnicity, your religion, your history, whether you’re a good person or bad, or whether you have holding you, the love of your life.

I started posting these as a memorial to an amazing man and a love story that is breathtaking.  It was a way to restart a blog that had gone dormant for a year, due to a change of job, to a change of focus, to a disillusion of hiding myself behind a ‘voice’ that I thought people would respond to and would draw them closer to the Iron Horse Challenge.

Tim’s passing and its effect on me is real.  It has reminded me of how precious honesty and voice is to this War on ALS.  If there is a correlation in gaining inspiration from Tim and Kaylan’s story, then I proudly acknowledge that and would do them the honor of saying so. If it reminds me that I have some things to say as well, then I will share that too.

The reoccurring thought that as some level my growing readership might in some way be due to connections being made between Tim and myself, that in some way it could also be viewed as exploitive by those who don’t know me directly, has somewhat dogged my thoughts.  I hope in saying something about this I am effectively dismissing it, as I dearly care about the Often Awesome army, Tim, Kaylan, and the message of respect that I am trying to pay them by replaying and outlining how their story has folded into mine.

Now with that said, I wanted to share also a few reasons why this episode was particularly affecting to me.

In June 2010, when I saw this episode, I was already smitten with Tim and Kaylan.  I was so impressed by the community coming together around them and forming the Often Awesome army.  I was also incredibly frustrated by my inability to myself raise such an army as I was struggling to make the Iron Horse Challenge an event that would rally people and be the awareness bringing event, I felt it could be.  I will talk on that in a later post.

When this episode came out it turned my smitten into kinship.  I had the fortune in my early 20’s to travel abroad and stay in Glascow, Scotland.  It was my first venture overseas and it was through the generosity and love of two people who have forever touched my life and who together had made the journey possible; for if it hadn’t been for them meeting each other, I wouldn’t have had that adventure put in front of me.

Tom McKenzie has been my friend since 1990 and has always been at his core a writer and an adventurer.  Life and its many roads, dragged him in the military’s teeth, till he had traveled Scotland, Sicily, and America, from the remote Islands of my Alaskan homeland, to the miasmic city of New York.  In his adventures he happened upon an amazing Scottish woman, with whom he fell in love and who would eventually come to say with us for a time in the US.  Her name is Barbara Keenan and meeting her would change my life.

Barbara is an artist and a vibrant and passionate woman, who in her stay with Tom and I, came to be one of my dearest friends.  When she left the US, she made it clear that should I ever had an interest in coming overseas, I would have a place to stay with her.  A few years later, I took her up on that offer and took my first step and opening my awareness towards the world, expanding my cultural awareness, and putting the seed of social and political awareness into a humanistic context.  She also shared with me her love of country, her passion for the arts, and the beautiful character that is solely her own.

I’m not fully sure why the long distance phone calls began to grow more complicated, or why life and its obstacles seemed to shore up our means to know each other, but I lost contact with that dear person a number of years ago, and then with my mom’s fight with ALS, I lost many connections with people as my mother took top priority.

It was to my great surprise one day, when deep into fundraising for the Tri State Trek, I received an unexpected donation from Barbara that let me know she was still out there.  I was so humbled and overjoyed at receiving her support and having a chance to contact her again that I have been forever grateful.

It was this episode that made me feel closer to Tim, if for no other reason than I knew the streets he was walking, the land he was frolicking, and the brogue he was enjoying between pints.  For Kaylan to experience this and for them to share in the accepting and generous nature of the Scots is a treat to me to know, because I too have felt this and cherish it to this day.  Scotland is an powerful and wonderful place and their people are genuine and kind and I miss the culture dearly.

Knowing Tim was free-balling his wedding, well…is a gift of knowing laughter that is way too perfect.

In my effort to do a better job of thanking those who have made a difference in this War, who have made such an impact on me that I need to find a better way of saying Thank You…I want to say thank you to Barbara, whose strength of heart, iron spirit, and generous nature, taught me how to love and to see better.  She had the chance to know my mother and was well liked by her.  For her reaching across the layers of suffering that I was feeling at the death of my mother and for supporting my fight from across the sea – Thank You Barbara, for being just as you are.  I miss you.

Watching episode 13, its hard not to think of my grandmother.  My mom’s mother lived in the hills near the border of Ohio and Kentucky in an intensely rural area, where your nearest neighbor was a half mile or more away, where dogs ran wild, and deer were your frequent companions when you would walk through the damp, autumn woods, in a land thick with copper leaves.  She was a big woman, strong underneath layers of cozy grandma cushion.  A simple and amazing cook. Our holidays were often spent around the matriarchal clan, sitting near an iron coal burning stove that gushed heat like a gate to the furnace of a train.  The ladies would shuck corn, snap beans, peel potatoes while chatting about the happenstances up and down the hills and hollers; a pleasant mix of warmth, cooking smells, and female voices that would simmer with laughter and ‘ya know’s.  My grandmother was also quite the seamstress and quilt maker and I can remember the oohs and ahs the day she finally got herself a machine to help her make those quilts; after so many years of doing them painstakingly by hand.

I remember the warmth of them when sleeping over in the autumn and winter, layers of thick heavy comfort, that shocked you with a slippery icy bath at first, but then roasted you in the dark when you slept.  My grandmother shared these skills with her daughters and my mother and aunt were both good at everything from fixing tears in children’s clothes, to knitting gifts of blankets for new babies, or sitting in with Grandma to finish a quilt she was working on.

To this day my bed is thick with quilts woven by these women, when the dark hour grow longer and the fingers of autumn turn cold.

When I saw this episode and watched them weaving those quilts together I was touched, astonished, and impressed, for many reasons.  The first is of course the return to the idea that we do what we can with what we have.  The second is how amazing it is to make something so nourishing and labor intensive for someone you care about, that will be a comfort, a reminder, and a shield in the coming days…the horrible reality of this disease being much of your life trapped in a chair and bed, being unable to cover yourself or make simple adjustments..imagine how cold you get sitting in one place without moving (in any season other than summer)…now think about what it is to not be able to move…Now how amazing is it to get a quilt that is made of love, passion, and warmth?

At the time I was first introduced to the Often Awesome series, I was living with an amazing woman who would come to support me in ways that I am still finding words for.  She helped me find my balance after my mother died, shared with me a passion for cycling, helped me on numerous projects for the Iron Horse Challenge, donated to the cause, rode several years in the IHC, walked with my family on the walks, supported my fight against ALS at every turn.  She brought her family into helping, her friends volunteered and joined the fight; I still receive their support and cherish them for it.  She helped me process my frustration and my anger, helped me to find a ‘tone’ in my messages that was compassionate and measured and was constantly bringing me good, practical, and logical ideas.  She also taught me a great deal about compassion, social activism, and social awareness.

Oh, did I mention she was also quite ‘crafty’?

My mom never got to watch me make my first cross stitch, or sew stockings for my niece and nephew for Christmas, but I think she would have been amused and proud.  She also would have loved my friend Audra for all of her many gifts and talents. Yet I think she really would have loved Audra for her amazing loving heart and like-minded compassionate and nurturing character.

There are many places where I think we lose the words for thanking those we love for the amazing things they do for us.  In much of normal life we are humbled and bashful sometimes about receiving such gifts and this only grows more intense when life throws us tragedies and hardships, suddenly pitching us into deep wells of the emotional unknown.  To have out of the midst of those dark places, people emerge who radiate and transform that space with gifts of love, acceptance, and comfort is the most amazing gift of all.

Its often not easy to figure out how to thank those people or how to make them understand how much we love them for it.  This is true in places where communities come together to fight for a cause, when people donate what they have, and when you are simply supported for who you are.  There is always this need to express these thanks and so often the words seem insufficient.

The important part is that we try.

I want to be better at that; I have to be.  Too many amazing and lovely people deserve recognition for the support they have given to me and to my fight to find a cure.  So today I make a small step towards that by saying:

Thank you Often Awesome, for all the tremendous work, love, and the passion you have done to celebrate Tim and Kaylan’s love and all the support you offered to them through this terrible disease.  Thank you for your compassion and bravery, your honesty and creativity, and for reminding us all, we can come together in a community and fight for the lives of those we love; in so many ways.

Thank you Tim and Kaylan, for your blazing love, its clarity and voice, and your willingness to share it.  For being true to each other and to yourselves and for sharing your lives and your story, so we could be wiser, stronger, and more determined to cure this disease.

And a very special thank you to Audra Slocum, who has enriched my life, my journey, and my wisdom so that I could not only be a better person, but be better at finding a way to fight this war with a compassionate and vibrant heart.  For teaching me to reach outside of what I know.  For teaching me to cross-stitch.  And for being the wonderful and nourishing person you are.  I couldn’t have done this without you and I’m so grateful for your support in this fight.

“With our dog and our dirty laundry as my witness…will you gay marry me?” – Tim to Kaylan.

“I do not wear the pants in this relationship sir..I do not wear the pants.” Tim.

“He’s just my life. My best friend.  He’s the funniest person I know…” Kaylan

I’m not sure when I started following the Often Awesome series….I can only tell you it was about the time they were 3 episodes in.  I can tell you that when episode 12 was released, I was so endeared to Tim and Kaylan, I was practically cheering and was smitten with them both.  I’ve seen perhaps only a handful of my friends, who have gotten married, really show the rapture that floods Tim and Kaylan.  Its so astonishingly rare and beautiful to witness the love and the honesty with which they step forward and then to have them share it, it is so touching, that it thickens the frame of the story into something you believe in.  The episodes create a depth of connection to them that makes it easy to see them as part of your personal pantheon.

When Tim ‘befriended’ me on facebook, I was honored.  His spirit was always an inclusive and brave one, honest, genuine, and totally at war with ALS.  It was this and so many other aspects of his character that blew up the Often Awesome into the vast army it is today.

When Tim’s ALS had progressed and he needed nurses, care, errands run…I felt a distinct regret that I didn’t live closer, that I hadn’t gone back to school and gotten my nursing degree yet; it frustrated and preoccupied me.  I wanted to help, I wanted to preserve his sarcasm and mischievous glint in his eye.  I wanted to watch movies with him and be able to meet Kaylan and even to watch thier dog sleep and dream at the foot of his bed.  I wanted to meet the rest of the army.  I wanted to make a difference, not only to the war on ALS, but to them directly.

That is how compelling what Tim and Kaylan has done by extending their message and sharing their LOVE and their fight against ALS.  (I capitalized love to emphasize that their story is about LOVE first and als second.)

In posting a new episode each day, I have deliberately not watched the next sequential episode before writing these posts, because I don’t want it to affect the nature of what I write and to wash out my honest responses through premeditated thinking.  So with the resonance of yesterdays post and video, I was thinking very much on the injustice done to Tim and Kaylan with the bureaucracy concerning their desire to get married.  About the injustice of a societal system that extorts us through the medical process and institutionalizes us and polarizes our society.  This is I realize a big statement with a partial thought, but honestly its still being digested.

As I was riding out today, to physical survey the upcoming Iron Horse Challenge route to Dayton/Fairborn’s Walk to Defeat ALS, I found my thoughts shifting under the blistering heat and verdant blush of Ohio’s southwestern farmland.  I watched the land shimmer with life, grasshoppers ricocheting across the trail, hawks taking flight, vultures lifting off with a expanse of dark wings that made the width of the trail shrink in their shadow.  I gazed over the ripening corn, soy, beans, and sunflowers and thought as I often do about my mother and her love of Ohio.  I often wonder what she would think about the sights I see rolling past me as I ride my bike across the state, of the views I witness when I see the changing seasons, from the unusual perspective of traveling at 17 miles an hour.  I suppose I look out and think of her and attempt to witness for her these sights, as I would have were she still alive and I was in a position to share them with her, plopping down on the couch beside her.

I will never know all of what she saw. What parts of this state were known to her or surprised or thrilled her.  Of the haunting and thought provoking images and places; the ones she would want to revisit and the way it would transform her understanding.  I will lose a bit of history from that lack of knowing.  I regret not having known more about her perspective in this.

In those thoughts its easy for me to also consider how much my parents shared and how much they didn’t or couldn’t have.  My father always considers my mother the record keeper – not trusting his own memory process.  In a way we look to each other and my sister and compile memories in hopes of discovering views she shared with one of us and perhaps not the others.  A memory that would give us something of her back, a piece of the puzzle that is in turn a piece of ourselves.  I wonder sometimes when I ride, how much I instinctively see, being her child, that is akin to her views.  When those moments overlap, I imagine I am sharing that view with her.  I love those moments and can feel her living within me.

So today on the ride, I shared the journey also with the thought of what to do about naming this leg of the IHC with a title that would honor the message of Tim and Kaylan and would make it stronger for their inspiration; that would be equivelent to the gift that they have given me with their story.  I recently posed a similar question more directly to Robert Blais, Jon Blais’s father, asking him how I could best honor his son and Jon’s heroic efforts…as I wanted to also grant the longest leg of the IHC, the route from Columbus to Cincinnati – 127 miles of almost 90% Rails to Trails, with a name that would remember him.  Robert suggested a few and I found myself being most amused by the ‘Blazeman Express’ – its drawing on train lingo was making me giggle in the 100 degree heat.

So around mile 37 I realized that perhaps each of the legs of the IHC should be dubbed with a train-like reference and made a decision:

“All Aboard, this train is about to depart…please make sure that your saddle bags are secure, that your water bottles are full, and your helmet is fastened…this journey will stop as needed..but will not end until a cure is found…this line from Columbus to Dayton/Fairborn…on Rail to Trail O2E..shall depart…

Welcome aboard the “Often Awesome Express”…we hope you enjoy the ride!

(when I saw this, I thought what a perfect fit for Tim & Kaylan)

If you didn’t think that this was a love story, well this episode makes it rather blatant.  They really say a ton, not only about how devoted they are, how much in love, but also how logistically complicated having this disease can be, how it can keep people poor or drive them into poverty.  How trying to figure out how the system as it is and the finances and “government assistance” can position people in a trapped space, where they can’t even enjoy the basic rights to follow love and get married!

I often feel that part of my passion is driven by the desire to see people affected by ALS (or really an debilitating disease) get treated as a whole, distinct person.  Not as a symptom of a disease, or that they are erased because they are looking at a road that is paved with dark limitations.  ALS is fatal.  There are no cures.  Few drugs (that do very little).  We understand even now, with recent breakthroughs finding there way into the news, very little about how it forms or how to prevent it.  On the sidelines is too easy to ‘empathize’ and forget, to feel we are helping, and even with the best intentions, overlook the person being trapped inside the shell.  I want to make sure that anyone who suffers with ALS gets to keep their dignity, their rights to decide the quality of their lives, to love as they wish, and express as they need to – without those of us on the outside, determining for them what is right, or safe, or appropriate.

That the government has a system of paying a lower-middle class person $750/month to survive (less than $12,000 a year) against a disease that can cost over $200,000…and yet deny that person the basic rights to love and marry the person who is going to make that life worth living..is in a sense a kind of death sentence.

Its just another way of illustrating why ALS is often called an “orphan disease”.

We must be ever mindful to not allow this disease to be greater than the life that lives with it.  That it never gets more of a voice that the fighter.  That our loved ones never get turned into ‘second-class’ citizens because as a society we abandon them and barely look for a cure.

Try an experiment: go to work and say “My friend has ALS and I’m trying to do some fundraising to help them.  Will  you help?”  I suspect 6 out of 10 won’t know what it is, 3 out of 12 might recognize something if you mention ‘Lou Gehrig’s disease’, and 1 in 10 might have someone they know who has had it.

If I’m wrong, it’s a win/win…they might help you fundraise for the Iron Horse Challenge and may even come walk with us in Dayton, Columbus, or Cincinnati.  Either way, you will know more about those around you and you will spread awareness.

I’m getting up early to bike 70 miles to Yellow Springs on a day that should be uncomfortably hot; but I have to make sure the route is ready.

Sunday the Marc Levinson 5K walk/run is in Bexley….and I will be running in that.  Enjoy your holiday and know, while you enjoy your freedom, someone is losing their fight with ALS.  I pray it never touches you.  I pray harder we find a cure so you never have to worry about that.

I will fight to make sure those voices stay alive.

Tim and Kaylan…your love is a gift to us all.

This Iron Horse Challenge is for you!

“What a shitty thing to do to a musician. This disease just robbed him of one of his greatest passions and one of the things he’s really talented at and loves to do..really loves to do….”

“…and you have to sit and say its ok…even though its really not…and you..you just hold them…and then you breath….and then you start all over again.” – – Kaylan LaFollette

In the early stages for my family it was confusion and mystery.  There were notes of fear, concern, worry, anxiety…but overall it was figuring out what my mom was dealing with and what we could do to support her.  My mother dealt with it day by day, but there were moments of panic and realization…and outright horror.

One night early in my mom’s diagnosis, my dad was beat from work and stress and decided to lay down for just a second; a very unusual thing for him to do.  My mother, still rigorously defending her right to be herself and be independent, decided to go downstairs to change round the laundry.

Her symptoms were mild at this point. Her voice slurred, she was losing weight (not easy for a woman who was nearly 6’ and weighed about 120lbs) because of her complications with swallowing, and so her muscle was wasting away.  She sometimes used a cane to get around.  She was driving and still doing everything she needed to do, but slowly.  My parents were learning sign language, preparing themselves and being a team looking towards the future.  She was mobile and was defiant about not getting a feeding tube, not as long as she could feed herself; no matter that things she could have eaten in minutes took an half hour or more.

So heading downstairs was not an issue.  Taking care of the house was part of her partnership with my dad.  Giving her husband a chance to rest and taking care of a simple task, was a simple choice.

She stumbled and fell.

Broke her wrist, bruised her head and ribs, twisted her leg, cut her forehead.  The sound shattered my dad’s sleep with a thunderous panic and his guilt for resting and leaving this moment ‘to chance’ haunts him to this day.

The injuries though mostly minor, left a painful reality that would leave a deep fear in my father and a cautiousness in my mother that I had never seen.  It was that first sign of ‘this is going to really suck’, where the suffering of losing what you can physically and confidently do become tangible; weed your garden, play banjo, cook, take a walk alone…and for my mother the ability to be truly alone was gone from that day forward.  For my dad, it was the day that fear of what was coming would never allow him a moments peace and would crush him everyday.

Her damage to her right hand was somewhat determining.  It changed how she could move using the cane, how she could write, drive, do chores…all the little things we take for granted that appear when our primary hand is taken.  With the signs of ALS hiding inside the limitations of loosing a primary hand, so much guessing about what symptom was from what source.  It created speculation about what timeline was present and the preoccupation with that was suffocating to everyone.  My mom probably took it the best; she just dealt with it.  For the rest of us, it was the beginning of a mourning process that we will never be done with.

My parents lost the momentum of signing, because of that hand.  They lost months of holding each other.  She lost weight because of the healing time and pain; muscle mass loss due to the lack of movement, chores, mobility with a cane.

8 fucking stairs.  A simple stumble.  A fucking horrible disease.

When my dad retold this story recently his guilt and despair at losing time with my mom was so painfully obvious.  His racking personal blame, for a moment of relaxing in his own home, within the comfort of his wife’s presence, and where all should be safe, torments him.  He blames himself for dropping his ‘guard’ and  ‘allowing’ her to fall…these feeling are so misplaced, but it is such a cry to wanting that time back…wanting her to never have been hurt…and a deep anger at this fucking disease for killing his wife.

Watching Kaylan’s face…that beautiful, happy, playful, joyous face….tremble with her words…its that feeling all over…knowing that something is coming…taking the days one beautiful and sucky moment at a time, loving as completely and freely as you can and fighting with each other to not let the demon come in the room…to squeeze the suffering in drops and find a way to let them fall without destroying us….watching as a loved one has what they love taken from them by ALS, one step, one word, one kiss at a time…god..there is no way to word it….

its why we have tears and raging screams and why we wring our hands because if we don’t we will destroy not only ourselves….we will lose the time…

‘live life everyday’…..

and never take a kiss for granted.

Its awe inspiring, humbling, and deeply emotional when people come together and manage to do something out of compassion and action. It was a blizzard of emotions, when so many people came to my mom’s aid, who came over and offered their time, or called, sent letters, and shared of themselves what they could.

Its not an easy experience in any direction.  The people who come forward and offer so much, leave us ever grateful.

I have been so fortunate with people responding to my cries for hope and for action.  Whether out of love for me or remembrance of my mother; out of empathy for my mother’s loss, out of celebration for her life or for the positive action of doing something for others who still live.  There are those who join me out of hatred for this disease, out of anger for what it has taken.  There are those who do it out of a simple act of creativity.

For 5 years I have done what I can to bring action and voice, have ridden and sought help, had donations made and links passed along.  So many have listened and helped, joined the rides, volunteered, donated time, energy, resources and ultimately have helped me to reach goals that I hope make a difference in the quest to find a cure.

As I do this, my dearest desire is that no one else has to suffer as my mother did; as my dad does.  My mother and father were married for 36 years.  They built a life together and raised a family, navigated troubles and hard times, gave it all the love they had, and healed and nourished each other.  They looked forward to a time of celebrating what they created and of sharing the joy and insight of that, while walking into the future.  This disease took that away.

One of the legacies that I owe my father is a passion to create.  I’ve drawn most of my life, painted, taught myself carving (the hard way), photoshop, and photography.  I took classes, theorized, read, and always return to creating; whether its in a bowl of soup, or in scribbles that take shape in notebooks.  I think it is perhaps my way of seeing, of being able to share ideas, evaluation and emotionally deconstruct art that has endeared me to the occasional artist and allowed for a kinship to form.

One such kinship was with a woman named Martha Knox, who was working for me at Staufs years ago, while she was still working on her art degree.  She has long since surpassed that moment and is a proud wife and mother, with a beautiful child and a loving partner and she is a creative, furious dynamo.

Martha and I years ago felt that the blank walls of Staufs offered a potential for reaching out into the community and bringing the unique voices of Columbus alive to our walls.  We crafted a proposal and got permission to host a monthly rotation of art and for years it was a mix of professional, amateur, student, and staff collective art work that has had a number of surprising successes and occasional odd and awkward moments.  To be fair it probably ran best when she was putting the energy behind it, but overall it has been a tradition that continues and I’m proud to have had a part in starting it.

In addition, for the last 3 years, Staufs has managed to hold a one month art show whose work is dedicated to charity.  Originally, it was my idea just because it became so clear to me after my mother died, how important the wealth of fliers that were pasted all over our public board were; so many were promoting a a cry to help fight for causes –cancer, MS, autism, clean water for Africa, relief in Haiti…the list goes on an on.  I began to see this as a call from within our community for action and aid; for awareness.

So often the art community can be the lungs for this awareness.  The Often Awesome art shows are a prime example. It seemed obvious to me that any charity show that happened at Staufs would be a gift to those people fighting such an awareness.  So when I created it, I contacted various artists who had shown before and talked to staff and told them: you decide what your work sells for, what you’re supporting, you write a message about what your doing and why, you determine how much goes to where.  I contacted local media and let them know what we were doing and we did what we could.

Many of the creative staff who decided to participate the first year, knew of what my family had gone through and an overwhelming about of the artists also defaulted and thanked me for my asking to be a part of this by offering to donate a portion of the art sold to the ALS charities that I championed for; it was a deeply humbling experience and I can’t thank them enough.

3 people stick in my mind quite clearly.

The first is Brad Larkin.  Brad worked for Staufs for a long time, but his soul has always been in music and painting.  His abstract, conceptual, mythological, universes are amusing, colorful, vibrant, and powerful.  He was one of the first to offer to help the ALS cause.

The second that sticks with me is Yotam Zohar, who is teaching art out in NY now.  Yotam’s story is also a tale woven with ALS as his step mother when he was young also passed away from ALS.  His memories are ghostly and fleeting, but his emotion is palpable and his artwork is amazing.

The third is Shiva Shakeri, who also lost her mom to ALS; her story is perhaps the most private of all.

There were many artists who participated and I have shared images and names in previous posts, but I wanted to mention at least these amazing 3 again: mostly because I still know them and for 2 of them, the fact that they were touched by ALS, long before I knew them, is a legacy of how deeply this disease is affecting.

I would like to say that all of the charity shows we hosted were a rousing success; but truthfully they have not been.  Whether the nature of the space or the lack of press that the local media failed to respond to, the plummeting support for arts in the community…or some other factor beyond all of that….all of them have been fantastic in their intent and compassionate application- yet none of them are as inspiring as the overwhelming support that you see in the Often Awesome.

Yet, I don’t want to dwell over much on the success or failure, based on money raised, the truth is I want to thank and celebrate that our community could come together.  I am proud that individuals could add their compassionate voices in a way that even quietly resting on walls, could make noise.  I hope Staufs never stops holding these shows and I hope one day that the place will flood with excitement and media and will brim with enthusiastic artists and amazing art.  I would love to see it create it a collage of the many lives looking to make a change and show a passion for bringing love and hope into the world through their creative and activist hands.  I look forward to that possibility and potential with all my heart.

I hope it catches fire…

burning all of our limitations away.

It will be Often Awesome!

Watching this for the 3rd time today, its impossible for me not to notice the overwhelming and amazing love beaming from Kaylan.  Just seeing this is enough to make you melt.  It makes this such a love story….

It was observed and brought up to me today from a friend, after reading and catching up on this blog, that “maybe it helps with your mom and processing, dunno, seems that way to me.”  A there is a point to consider in that and in doing so I’ve come to realize that its more than just a way of puzzling out the loss of my mother or of what my family went through; rather its an evolving thing.

When I look back at the early stages of it, the blog was just a place to put things, organize them, hang a flier on the wall to lead people to.  It was a place to start and as I was developing my ideas and trying to figure out how to address a broader community, potentially a local one, I definitely noticed myself adopting a ‘tone’ of expression that was meant to appeal to the public.

Attracting peoples eyes with photos and later videos and sharing the excitement of the events, trying to share how amazing events like the Tri State Trek or Iron Horse Challenge could be, or how simple setting up a trainer and donating plasma could go towards raising money for the cause.  The idea that no matter who you are or what your life it like, you can help make a difference.

The post “blood money” was the single most viewed in a single day posting I ever did.  Something like 300 views in a day.  When I did it I was so concerned that the frustration and challenge that I was throwing out in it (because I was, I mean, I pointed out that in many ways we can all do more that what we do – and its true) was going to unsettle and upset my handful of followers, at a critical time of fundraising.  Yet, something about the shock value in it, maybe even the humor in the title, the irony (the pirate nature), and the gore-vein shots seemed to confirm that ‘shock sells’.  I even followed up the success of the blog post and the obvious money I raised with the plasma donations ($250), with the Central and Southern Ohio ALS chapter.

At the time, the local Plasma Center was offering $50 per visit/donation for the 1st 5 visits (2 times a week, 2 1/2 weeks), regardless of body mass.  The visits took maybe (after the first) 30min and the whole thing was painless and kind of fascinating.  I took the idea to the local ALS chapter that if we could get 10 people to do this, we could raise an easy and quick $2500 and if we shared this with the local media we could potentially start a whole new way of fundraising, that was both a needed service for the medical field and was being used in health care services, but it was also something that took only time and blood and so anyone, no matter how financially strapped, could do something to raise money (tax deductible donation as well).  I thought “wow, if we were the first to think of this, get the press for it, it could be a kind of fundraising revolution”.  Now I know I dream big and sometimes even unrealistically, but still, if I could generate that kind of ‘viewership’ from just a no-name blog…with a little media this could still make the news and get the message out.  The chapter were receptive and patient with my excitement, but quietly didn’t ‘touch it with a 50’ pole’.

So one of the amazing things I learn as I become more aware of the diverse and powerful acts that people do to raise awareness and money to support those they love and to even fund the search for a cure, is how varied it can be.  Walking, running, cycling, swimming, climbs, cross country trips, golf, art shows, music festivals, parties, bake sales, belly dancing….and it goes on and on.

Its back to the point that we use what we have.  If you can walk – walk.  If you can ride – ride.  Create – create.  The whole point is we are never left with nothing and we can do things that we have skills and talents for, that we enjoy doing.

Today I even asked Sweet Baby Octane, a local Grandview, OH tattoo shop (on facebook), who did one of my white tattoos to consider helping honor Tim LaFollette and the Often Awesome with a similar fundraiser here in OH.  I attached the links to episode 7 and forwarded the upcoming memorial fundraiser to help pay the medical/funerary/search for the cure that is going on next month in Tim’s memory.  I tried to contact a few tattoo shops last year when I saw episode 7.  I thought it’s a win/win for the shop, for the charity – potential media…a way to celebrate and remember.  Didn’t happen.  Maybe this year…

Well to you Tim..here’s a raised glass to a flock of wishes….

When I was turned 21, I didn’t drink, I was an avid addicted gym nerd, and while I was getting around on a bike, it was more or less a default, not a passion.  Unlike so many of my peers who spent their 21st birthday (and the weeks leading up to it) prepping for being able to legally drink; I had no interest.  But I was interested in the physical rites of passage that seem to flow through history and culture, but seemingly got lost somewhere.  I was also quite interested in pushing my physical boundaries and I’m sure Alaska had some part in convincing me that perhaps a ritual of physical transformation was appropriate.  When I settled on getting tattooed my dad, having grown up in a strict, military, catholic household, and having survived Vietnam, was decidedly against the idea.  My mother however was mischievous and without making a big fuss or much noise about it, decided that it was the best course of action (figuring I was going to get it done with or without approval and of course was going to make sure any place I got tattooed she was going to be there), to go with me.  I think personally, she was  morbidly fascinated by the whole process and there was more curiosity there than she maybe would have admitted.

13 years later, I would get another tattoo, in memory of my mom; a year after she had passed away.

I had always told myself I never wanted to have my arms tattooed.  There were a number of reasons why, but it was something I was rather confident of.  When my mom died, I realized I had a need to wear something permanent, visible and obvious, yet requiring awareness to see.  The arm became an option – the closer to the heart the better.    I was already adorning myself in white ink and found that I liked it for its elusive quality (particularly on my freckled Irish/German flesh); so that was easy to pick.  I wanted also to celebrate my mom and to wear her teachings as a banner on my skin (as they were already written on my character and in my heart and mind), and so I decided to paint it in a language and a culture that has become part of my own path.

If you saw my early fliers for the Iron Horse Challenge, or the symbols that I began using to identify the ALSWARRIOR (you can see the blue triangle and associated images in the banner at the top of the blog), you might see a strange script (its in the image below above my mother’s picture).  The script is called alibata, and it’s a pre-Spanish writing form that hails from the Philippines and is translated through the native Tagalog language.

The script translates into Tagalog as Ina- Guro- Kaibegan: Mother, Teacher, Friend.

These three roles were part of my mother’s legacy to me and I wanted to represent them, for both the mystery that they are.  Metaphorically and literally this traits are translated in my nature and behavior and in my actions.  Getting this tattooed on my arm was a way of pointing to the obvious: it was in reverence to her and to the gifts of where her teachings have led me.

My father had a hard enough time with the tattoo.  Being a pragmatist and a practical person, he was always against me putting the alibata  on my awareness posters and advertising; suggesting that it might be more alienating than communicating.  He wanted my ALS projects to succeed.  He felt I should make the message clear and simple. 

 I agreed with him, but I also inherited a certain stubborn will and a uncompromising creative character;  I put it out there anyway. 

 Even the ALSWARRIOR crest, the blue triangle, representing the tiga footpath of the Filipino martial arts (made up of escrima sticks), the wing of the 173rd airborn holding a karambit (a traditional fishing blade and fighting knife from the Philippines), the ALS Defeat Walk foot (the logo having been changed some years back to sneakers and the name to the Walk to Defeat ALS), and the strange bike wheel turned mandala and the words “hike, bike, fight”, were all in there own ways a way of merging my own warrior symbols towards this fight; though now I use it more to self-identify when I compete in the martial arts.  The specific claiming of this symbol was my own martial way to take my ALS awareness campaign into every part of my life.

It might not makes sense to many – but it makes sense to me.

It was not long after I learned about Tim and Kaylan and the Often Awesome Army that I saw this particular episode and realized I was in love with these people.

When I saw the signs of solidarity in Tim’s friends and then the passion filling each of them to turn their flesh into an awareness campaign I was stoked.  To see the backing of the tattoo shop and the flood of the art, music, and tattoo events that followed, blew me away and the ideas of how far solidarity and awareness could go was (not only amazing to watch), it pushed the boundaries of what was possible.  It seemed so obvious and so powerful, that it was impossible for me to not be excited by the multitude of ways that people could be touched and fired up, how they could set fire to the limitations of what could be done and defy what couldn’t.

These were all things I couldn’t have imagined when my mom was fighting ALS; they weren’t even figments of dreams.  Tim and Kaylan made those dreams possible.  They inspired me to push the limits of what could turn into a voice and a battle cry.  Most importantly, they…like my parents…showed me how strong love can be and how limitless it is.

The sparrow is a good symbol of this.