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
Thank you for writing and for sharing. I need these principals to imbed in my mind and heart for this day, this week and forever. I believe and I need. Because of Jesus I have.
Let it be as you said it.
Thank you, dear precious Bo.
Much love,
Kathy
Kathy- thank you so much! I love you back.
My life right now is so parallel to yours. I am dealing with the ravages of ALS with my husband and it appears that we are both in about the same stages of the disease. Along with ALS, my sweet also has a condition called FTD ( frontotemporal degeneration ). In a way that has been a blessing to have the dual diagnosis. As horrid as ALS is, he doesn’t understand nor will he ever be able to understand, the disease that is taking him away from me and our grown children and his adoring and sweet grandchildren. Hospice tells me that we are nearing a conclusion. We are terrified and I’ve found your blog and it gives me peace and comfort to know that we are not alone. Blessings and prayers to your husband and family.
Lynn – I just sent you an email!
Every detail you write brings me back to such a real place- not more than a few months ago as we cared for my mom. Beautiful battlefields. May God be glorified. Thank you for your words that always touch my heart in a place where someone who hasn’t had this particular battlefield could never.
I am grateful my Shepard never leaves his sheep but to find a hurt or lost one of the flock. It is comforting to know in the fear of the fragile night he holds you close Bo. My prayer remains steadfast that you feel that protective Shepard ever stronger in your pasture turned battlefield. My heart is with you.
Hi Bo – We were introduced to your site by a friend of a friend and have so enjoyed your perspective and encouraging words. We too are in the midst of a battle. My husband was diagnosed with ALS on Feb 12, 2013 and it has moved rapidly through his whole body. We have 2 small children and they pray daily for Daddy to not have ALS anymore, but it marches on. But even in the midst of it all, we feel so blessed. We know that God is real and is working things out for us. I don’t understand how He will make good from all of this as my husband, best friend, and daddy to my kids is slowing being taken from us, but I have no choice but to trust Him. He has always proven to be faithful. Even when I feel like everything is falling apart, I have to rely on what I know. God is good. Period. And he really can bring peace in the midst of the ALS chaos. Everything is going to be OK…or at least that is what everyone keeps telling me. 🙂
Thank you for sharing your journey!