When someone with ALS dies,
My world stops for a minute, or an hour or a week. It all depends on a million spinning, invisible factors.
Today’s news has me reeling. If this were a movie, I think I would be the person stumbling through a dark alley, pressing an old t-shirt against a gunshot wound, hoping it will heal itself. Dramatic? Yes. But still what I feel.
When someone with ALS dies,
I have to decide what to do next. Go to work and hope I forget about it? Pray the distraction is just what I need? Or should I sit and process? Walk myself through all the stages of grief and denial and anger and acceptance…again?
Today, my “next” is write this post. Process on the page. Pour out some words and hope they are healing for me and not discouraging for you.
When someone with ALS dies,
I worry over how to tell Steve. And this is usually wasted time because he handles it so much better than I do. He quietly mulls and then – as is his way – he comforts me. He sits with me while I cry into my hands on the couch and he stays silent because there are no words for it. He knows the Shadowy valley is different for me than it is for him. And also, he’s happy for them in a way I cannot possibly understand. He usually mentions something they might be doing – the movement they’re enjoying, the food they’re tasting, the songs they’re singing.
When someone with ALS dies,
I am easily exhausted by the rest of the world’s frustrations and fascinations. It’s on a day like this when I will inevitably run into a headline about JLo’s new bangs or the length of Emma Stone’s skirt. On this day, someone will post about getting cut off in traffic or their insurance going up by $42 and – I know it’s ridiculous – but I will feel wounded all over again, even though these would be my same frustrations and fascinations on any other day.
When someone with ALS dies,
I loathe this country we’ve been sent to. And I also love this country. Because these people? Broken and wounded and heroic and hopeful…they have become so much of my life. This is the land where my heart became tender and true. This is the place where I fell in love with my husband all over again. This is the country that redeemed so much of our purpose. I wouldn’t choose to live here, but I cannot choose to leave so I might as well love well.
When someone with ALS dies,
I am newly thankful for all that lies beyond the world our eyes can see. In fact, thankful is maybe too timid a word. On days like this one, the idea of heaven is like oxygen to a deep sea diver. It’s not a bonus or a luxury. It’s essential. It’s my lifeline. It’s why I’m still standing.
When someone with ALS dies,
I realize how small and trite our language can sound when pressed up against real, raw suffering. I long for better, deeper words than “God bless you.” And yet, I unapologetically devote my life to knowing the God of All Comfort. When every other well is dry, this is my only source for joy in a dry, weary, exhausting land.
A few days ago, as we road tripped our way to a conference, Steve read this verse to me and today it rings in my heart like a bell.
Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God. For just as the sufferings of Christ are ours in abundance, so also our comfort is abundant through Christ.…2 Co. 1:4
When someone with ALS dies, we try to quickly connect our hearts to His comfort because it’s really all we have. And we pray fervently that every drop poured out on us, will be poured through us. Would you lend your prayers toward that pursuit? That we would be like soft, warm blankets to the people in our country who need it so much? That’s what you are to us.
Thank you. We love you.
Yes…you are so right, yet again.How is it you see our hearts and put words to what we can not or dare not <3
I relate so much to your words about frustrations with others’ concern about matters that really are trivial. So many times I have wanted to comment on these posts and explain what real problems are. Thank you for sharing what is in your heart and mind. I appreciate knowing someone else out there struggles with those headlines and comments.
And yes, I think that the world is also groaning for The Lords coming! The headlines are ever pressing us closer to Jesus heavenly HOME. May your pain be short lived and press us all into eternal perspective…making us more aware of souls that need HIM. I love you and wish I was there to hug you tight!
Your brokenness makes people whole all day long. Thank you for being vulnerable and real. I love you!
Oh Bo, I feel your pain in my heart, by your words. I ache for Steve to be healed so you and your family don’t hurt anymore. As I’ve told you before, you are all in our prayers and hearts all day every day. On this day, we pray for the pain of losing a friend and for comfort to his family and many friends in the ALS community. Now, you and Steve give each other a big hug from me, please? Love you both! Karla
an epic line to echo: “I wouldn’t choose to live here, but I cannot choose to leave so I might as well love well.”
2 Cor 1:3-4 is the scripture of comfort that has meant a lot to me at times of difficulty.
…to be God’s hands extended….to be His arms embracing…
….. like soft warm blankets to the hurting…
http://youtu.be/lk0bKfC8XSE
Bo-this is so very powerful. I know going through my Mom’s cancer battle it is so hard day to day. I don’t think I really knew God’s mercy and grace until I went through this experience. My prayer for you is just love and a covering over Steve and your whole family. You are doing so great trusting our Heavenly Father daily. Just know that whatever you are feeling is alright. To the Stern family you inspire myself and others daily and I can honestly say I think about and pray for all of you daily. Many blessings.
We’re praying. I have no advice or even words. But my wife and I are praying and my Men’s bible study is praying. We’ll keep praying.
I hope they are Saved! Then they are enjoying eternal life! We will all be there one day! Take heart dear Bo! Let’s urgently share the Gospel where ever we are. You don’t know me. However, I love you! Katie
Praying for you and your family and the family that has lost a loved one….. We are continually praying for you and Steve…
Our family is holding up your family !!!! Love you…..
So much love for you Bo. For you all. So much love and admiration and tears and prayers. xo
Bo,
As we walk similar paths, you often put in to words exactly what I feel. I’m grateful to God for you.
When our new friend, Tom, died from ALS, I felt like I’d been punched in the gut. The idea of losing these new friends we have met at ALS support meetings didn’t hit me until we walked into the funeral home. There we were greeted with a huge hug from Tom’s daughter who grabbed my husband’s hand and lead him to the casket. Like a small child with a new discovery, she exclaimed, “look, Dad is whole again, there’s no ALS!” Dressed in his military uniform, he looked quite different than the last time we saw him struggling to breathe. There he was peaceful and yes, without disease. All of us knew that peace reflected the truth of Tom’s life with Jesus and the hope of his new home.
As heartbreaking as that moment of reality was, it was also an amazing moment of encouragement. There in lies our hope, hope of being free of all pain and sorrow. Hope of knowing our Jesus carries us through this life and greets us as these physical bodies die. I’m encouraged and blessed to be surrounded by such a cloud of witnesses.
May the God of all comfort continue to bless you with His peace and words to write. May He show us how to comfort others in this unique journey with this ugly ugly disease.
Many thanks, Bo,
Barbara