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.


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



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