Friends with Benefits…Often Awesome Episode 6…Reaching outside the circle….

29 08 2011
Often Awesome episode 6

My mother was a strongly empathic, independent woman, who was always quick to offer an ear, to lend a hand, or to volunteer for a good cause.  She was a mother in everyway, fierce in defense of her family and loyal and loving always to her friends and those that came inside the circle of our lives.  She was a wonderful listener and could accept everyone as long as they were good in their core.

My mother also coveted her privacy.  Shortly after her death, my father and I were watching some movies from various trips that they had taken together.  Watching my mom interact with nature in such a intimate and yet private and isolationist way was deeply revealing.  Her reluctance to be photographed (difficult considering my father was quite an adept ambush photographer and had a minor in it in college – our childhood albums will attest to it) was I think an extension of her desire to not be made a “big fuss over”.  She was capable of flashes of wild exhibitionism, but it was always within specific contexts and she loved to dance.

ALS was so hard on her, not just because it is/was a fucking horrible disease, but to her character it was such a violation; she couldn’t take care of anyone and she had to be dependent on others.  To have your children help you go to the bathroom, wash, or feed you was not something she was built for.  Yet there are some really revealing things she wrote to me in her last journal that point to some insight that the disease gave her that she was humbled by and she wanted me to learn it, because in many ways I am like her.

Here are her words:

“Son first let me say…I stand back and ask the question : did I show my children how to love and how to grow?  Love…Yes..but like your sister and myself, you don’t love yourself more than you do others – not good.  You are growing into a fine man who makes me proud.  Soon I will not be able to write.  When the day comes that my legs and arms go, I don’t want to live anymore.  I know you understand.  Dying isn’t for the person doing it.  Faith has been with my most of my life; it isn’t going to change.  I’m here for family and friends, so you all can get used to life without me physically here.  You will hear from me.”

My mom did stay with us, long after she wasn’t able to walk and her hands wouldn’t obey her.  She stayed with us, for us, because she was giving of herself each and every day, even up until the last moment before she passed away.  The journal she left behind wasn’t for her, it was directed to us.  There was an entry in it for each and every person who was there on her last day; who was at her side.  She was giving to the last.

I see in her words, something that she was trying to articulate, but her hands wouldn’t let her, and so its simplified in a way that at first seems wrong, but she was right.  She did teach us how to love well, to accept and cherish others and to give of ourselves to try and make the world a bit better – that was her legacy to us.  She watched us navigate relationships, sacrificing ourselves to a point that concerned her and she interpreted that as not loving ourselves enough and she may have been right…but the reality is the ‘enough’ part.  She did the same.  She gave her whole life, rarely asking for anything in return and always so humbled/embarrassed when it was.  She didn’t know how to receive – and that’s part of our legacy from her as well.

So she was so struggling with the warring reality of ALS taking her independence and having to watch as all the love she poured out to others returned to her, in all the support and caring, baths and feedings, trips to the bathroom, and helping to keep her breathing and to get into bed.  She had to let the love return to her.  She had to let go and love herself enough to understand how much we all loved her and how much we were willing to do.

Now all of us: my dad, sister, and myself worked 50+ hrs a week.  My sister at OSU, my dad at his job of 30+ years, me at the helm of a 20+ crew at a retail store with all of its demands.  With taking care of my mom in shifts and even with friends helping, we barely kept up on her evolving symptoms, let alone studying about the disease or contacting organizations.  The Central and Southern Ohio ALS chapter was there, supporting us and giving us tools the whole way: yet we didn’t even know that the ALS walk in Columbus, OH was less than .5miles down the street, until the day after she died (literally the walk was the day after she died).

I don’t know what my mom would have thought about the Often Awesome army, or about her son riding 270 miles each year on the Tri State Trek.  I don’t know how she would have felt about Jon Blais’s amazing IronMan feat or about the Iron Horse Challenge.  I know she would have been protective of me in my bringing the fight quite literally to the Arnold Classic or the Gathering of Warriors, but I think she would have understood.  The point is, we weren’t part of the online community, or facebook, and so didn’t have this network of ALS advocacy and that next layer beyond the inner circle.

Part of my desire to start this blog, beyond putting as a place for information for the IHC, was to potentially be a place for people with ALS’s stories, for those families.  I didn’t realize how much was out there and how many people were already doing this and had been forever.  Ever since discovering this, its been a journey outside the circle.

The most powerful influences in this awareness are the amazing fighters who struggle with ALS; people like Darrell, Dave Virden, and Tim LaFollette.  They redefine what it is to fight beyond and grab that voice in the imagination of the community.  I have had the honor to ride with Darrell and Dave on the Tri State Trek and I cherish every moment that I had a chance to see them; even if it was hard for me to hold back tears.  I feel the same way for Officer Sgt. Roger Petrone and seeing him these last years on the trek is beautiful and humbling.  I have no idea if my mom would have, if circumstances had been different, been able to be such a symbol for so many people while in the midst of fighting the disease; to be able to give a speech with her voice and limbs failing to 200 cyclists or even a small rag-tag band of Iron Horse riders.  She would have blushed to her bones.

Dave Virden and Sontri state trek 09 038

Yet the next expanding layer is that of the broader community.  The cities, towns, neighborhoods that come into the awareness of one of their own fighting this and coming together.  Like the town of Greenwich, Conn. coming together for Roger and opening themselves to the power and passion of the TST.  This is a great example:

That kind of action and overwhelming support is amazing to me.

Then there are the people who advocate in such a passionate way that open new understandings, who (if I dare to draw comparison) can’t help themselves and like me have to ‘do something’.  People like Kinga Njilas who has been raising the battle cry in Canada.  Or my friend Darcy Fitzgerald who is jumping out of planes and doing this without her father really knowing why she’s doing it.  So many amazing, expanding circles, intersecting.

This years TST was a tremendous experience if for one reason alone: so many of the facebook ALS army showed up and either rode, supported, cheered, or found their own way to make an impact.  There is so much more to say on that and yet tonight I have to keep it simple as I’m running out of time.

tst 2011 040tst2011 031

To finish and complete the thought I started with…Would my mother have known what to do with all of us?  With the attention, the noise, the fury and the action?  I don’t really know.  She would have probably smiled and cheered us on, loved us for being so passionate about trying to do something about this fucking disease.  She would have wanted to take care of us, to let us know we were appreciated.  She would have wanted us to do what we needed to do.

I’d like to think that she would have loved us for looking for a cure and maybe even would have allowed herself to hope.

For that I am so grateful for you all!




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