Tuesday 21 January 2014

MND - what's your dream?

Following on from my last post, Bo Stern whose husband, Steve, is a long way down the journey of ALS/MND writes an inspirational blog, The Difference of Day and book Beautiful Battlefields, both crafted in the crucible of her own experience. Yesterday, Martin Luther King Jr Day, she posted this. I love that last paragraph: "I guess, I am not wishing you a quick way out of your battle: but I am believing for you and for me, that every square inch of our battleground will be redeemed. And on that ground, beauty will grow, wild and free."

"It’s been a tough couple of weeks on the ALS frontlines, and last night was especially hard, filled with breathing mask difficulties and some scary choking episodes into the wee hours. I’m sure every serious illness comes with problems for which there are no solutions, but ALS seems to specialize in them. 

I often feel helpless and useless, sitting beside Steve while he chokes and tries to find his way back to regular breathing (and then apologizes for keeping me awake). This morning, my facebook newsfeed is filled with tributes to another friend, lost to this battle. We are expecting to say farewell to several more within the next few weeks. And sometimes it seems we’re no closer to finding a cure than we are to achieving Lou Gehrig’s batting average (.343!)

But today I am home from work because it’s Martin Luther King, Jr. day. And, though I know we still have far to go in achieving true racial reconciliation and equality, I wonder if, in his lifetime, he could ever have imagined that his name would be attached to a national holiday. As he fought on the front lines of racism and segregation, how could he have known how significantly he would help to alter the course of history? He just did the work. And he believed. And I’m guessing sometimes it felt like he was believing his way through quicksand, because he said this: 
“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” MLK 

I am working at believing. Believing for a day when breakthroughs will come. When science will crack the mysterious code that keeps so many suffering. I am believing that, even if there’s never a national holiday to celebrate the eradication of this relentlessly brutal disease, that my grandchildren and great grandchildren will gather for dinner somewhere and the same time every year. And they will raise their glasses to their strong, valiant, soldier of a granddad…who never stopped fighting. 

I wonder: what are you believing for today? What seems impossible? I am wishing you the strength to stand in the trenches and the strategy to make inroads that generations will thank you for. I am wishing you life and joy and peace in the battle, though sometimes those things seem impossibly incongruent. I am wishing you the bravery of Abraham Lincoln and Amelia Earhart and Malala Youfsazai. Because we all have a story and we all have a storm. May we have the faith to believe with Martin Luther King, Jr., that “unearned suffering is redemptive.” 

So, I guess, I am not wishing you a quick way out of your battle: but I am believing for you and for me, that every square inch of our battleground will be redeemed. And on that ground, beauty will grow, wild and free. 

Let Freedom Ring, 

Bo"

4 comments:

  1. "I am wishing you life and joy and peace in the battle, though sometimes those things seem impossibly incongruent. I am wishing you the bravery of Abraham Lincoln and Amelia Earhart and Malala Youfsazai. Because we all have a story and we all have a storm. May we have the faith to believe with Martin Luther King, Jr., that “unearned suffering is redemptive"

    These words quoted by Bo seem particularly relevant this morning. I have just heard from our daughter that her very great friend and PA at work is totally devastated. Her Grandson, a profoundly disabled but beautiful and happy little boy ( of about 5) who has never been able to sit up on his own, walk or talk, simply did not wake up yesterday morning.
    I also received this morning, this quote,
    "Somewhere we fit into the great jigsaw puzzle, and without our fitting in, the universe isn’t complete." (Laurence Freeman, Breaking the Cycle of Violence).and I thought, though it will be of no comfort to his parents, this little boy has become part of that great jigsaw helping to complete the Universe.
    Readers of Michael's blog, will you think of this little boy, and especially his parents and grandparents? Thank-you

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    Replies
    1. Remembering him and them, Ann. Also our friend Jill who we heard yesterday has died quite young of cancer.
      We have two good friend couples, parents of similarly disabled children who died last year. Those children were SUCH a blessing to their families and friends. I still vividly recall how watching her parents' care for Beth showed me how God loves us even though we can't/don't return it. It showed me what grace is. I was profoundly touched.

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  2. “If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” MLK
    today is the day 'Challenger' exploded in the air. here is a lovely commentary and poem about flight.
    http://www.prayingeachday.org/Jan28.pdf

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