Love in distant places…

6 09 2011
Often Awesome episode 14–the honeymoon

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.




One response

28 11 2011

Not sure what to say, except I miss you too! I promise I’ll be in touch soon.

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