Oh, sweet blog reader: I can’t believe you haven’t given up on me yet!
Sometimes, over coffee with a friend, I will share a story or experience that has marked me in the past three years. Often the friend will respond, “I sure hope you’re writing all this down.” But I’m mostly not. I’m mostly just riding in this car, so busy hoping the trip will end while also hoping it never ends, that all these stories tend to seep like water into sand.
I’m comforted by the fact that several ALS memoirs I’ve read are a little “holey” in their consistency. You’ll notice large chunks of life missing from their chronicle of the journey. I totally get it. ALS just sort of takes over. It bosses your time around. It shanghais your emotions. There are days when I’m determined to sit down and write about a struggle or a victory or an issue that we face on this battlefield, hoping it will be a lifeline to someone else down the road. I mean, I really, really want to. But the thought of writing about it -in addition to living it – is just too daunting, while the idea of an evening on the couch with Steve watching Sherlock (again) is very appealing. And that idea usually wins.
So that’s one reason my blog has been quiet. Another reason is that I’m working on a new book which has a very tight deadline (March 20!), so most of my words are walking that direction. I’m SO excited about this project – it’s been life to my soul recently – and I’ll share more about it soon. Until then, I just wanted to throw this post up to hold my place here like a traffic cone in a parking spot. Please, don’t give up on me. Please, don’t forget me. I’m still here; just quiet.
And I love you,
We are known by the company we keep. I keep company with this man. He is my truest friend, my fiercest defender, my solid ground. He shows me angles on the world beyond my view-finder and helps me understand that the way I’ve always seen it is not necessarily the way it really is. I do the same for him, I just do it in a sassier sort of way.
Friendship in marriage is not optional. It’s not a bonus. It’s not a sad substitute for real passion. It’s essential. It creates the substructure of the house you’re building. You may not see the lack of solid framing in a house until the wind blows; but I promise, you will then. You see it when your world shakes. Friendship is essential.
I know this isn’t new information; every single lady I know would say they want to marry a man who is their friend, but I do think new love tends to blur the lines and cover over issues that would be deal breakers in other kinds of relationships. Sometimes the rush of fresh passion sweeps basic discernment out the door.
I don’t have a list of tips for falling in love this Valentine’s Day. The older I get, the more I’m certain it’s different for everyone. I do have this one thing, though, that keeps coming back to me which is why I’m going to say it yet again: We are known by the company we keep.
Happy Valentine’s Day, Steve Stern. I’m so thankful for the friendship and fighting and winning and losing and loving and risking I’ve done with you.
One of the great gifts in my life right now is my ALS Wives support group – ten or so women from all over the country, none of whom ever wanted to be a part of this club. They are passionate, loving, brave and fiercely devoted to their families. It is such an honor to call them friends.
Kristin Neva is one of the wives. Her husband, Todd, was diagnosed with ALS three years ago at age 39. They have recently finished writing a book called Heavy, available here. I’ve asked Kristin to pinch-hit for me on the blog today and I think you’ll love the Neva family story of God’s faithfulness in affliction.
NOT JUST GOING THROUGH THE MOTIONS
In a darkened sanctuary, a few college students laid prostrate in prayer and worship. About twenty people, passionate about showing the Love of God to those in the city, gathered for prayer in an old neighborhood church building, now serving as offices for a much larger church on the southwest side of Chicago. An older couple laid hands on my classmates. I wanted to know God in this experiential way, too, so I lay down and prayed. I didn’t feel much of anything.
The couple came and laid hands on me. The woman prayed that I would not just go through the motions, but that I would really seek God. I thought, I am trying to seek God. But, how do I not just go through the motions?
Sixteen years later, nestled in a warm country house in the U.P., I face my husband Todd’s terminal illness—watching ALS atrophy his muscles, picking up more and more of his physical care, juggling responsibilities of parenting two young children. I am overwhelmed. I often lie prostrate alone on my bed, door locked, crying, praying, needy and desperate for God. Though I am not seeking an emotional experience, my faith experience is emotional because of my sorrow. Sometimes I cry, “God, do you love us? Then, why don’t you take away the pain?”
But then I breathe. My tears dry. I come out of the room with renewed strength, ready to help Todd, ready to cook a meal for the kids. I have enough Grace for today. I am experiencing the presence of Emmanuel, God with Us, Jesus, who suffered for us, the Savior who sweated blood for us. I feel so much. I love my family so much, not in spite of the sorrow, but rather through the sorrow.
This February, as we think about love, let’s meditate on the love of God, not a romanticized, Hallmark love, but the kind of love that brings comfort in suffering. In Romans 8, Paul writes, “Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or word?…No, in all these things we are more than conquerors through him who loved us.”
Kristin blogs at NevaStory.com along with her husband Todd.The fruits of a long, heartfelt process have been realized by Todd and Kristin Neva with the publication of their book, Heavy: Finding Meaning after a Terminal Diagnosis, A Young Family’s First Year with ALS. Heavy is their story, and response to live beyond the illness with which Todd has been diagnosed. Heavy is available on Amazon.
Over the past few years, but especially in the past week, I’ve watched some amazing wives live out their wedding vows pretty flawlessly. They have held and comforted the men who could no longer hold and comfort them. They have said no to attractive distractions so they could say yes to sleepless nights, sorrowful conversations and to-the-bone exhaustion. They walked with their men, not just down a church aisle, but also every step through the Shadowy Valley to gracefully and gratefully drop them off at heaven’s door. And then they turn back to their lives alone. From we to me. From us to I. From cherished companion to cherished memories. They are heroic, beautiful and brave. I would like very much to be like them when I grow up. And so today, on our wedding anniversary, Steve and I salute Debi, Lynn and Mitzy for showing us all how it’s done.
And to the man who stole my heart 29 years ago: there has never been another. You have loved and loved hard. Even in the breaking seasons, when everything felt so perilous, I have never had a doubt that this thing we’re doing is real and right and it will matter in eternity. The yes’s we said to each other and the no’s they necessitated have been built like bricks into the walls of our legacy. Our lives have mattered, but our LIFE has mattered. The us of you + me is the best thing I’ve ever been given.
Because we gave up on anniversary gifts years ago, and because words matter more to me than flowers, I want to give you a thank you for every year we’ve been married.
1. Thank you for fighting so hard for a marriage that wouldn’t sink beneath the waves of culture or compromise or catastrophe.
2. Thank you for trying to teach me to swim. And for not hitting me back when I panicked and hit you.
3. Thank you for going to the store a thousand times through four pregnancies to buy Top Ramen and watermelon.
4. Thank you for Italy. I never would have been brave enough to take that trip without you.
5. Thank you for being such a gracious fighter. It has made all the difference in our marriage and in the way our children view relationships.
6. Thank you for always, always, always believing the best about me. Nothing in my adult life has made me braver than your constant faith in my ability and my dreams.
7. Thank you for teaching our girls how a man treats a woman.
8. Thank you for teaching our son to be a gentleman.
9. Thank you for that one time you left a penny for that waitress who was so terrible to you because it gives us the best story to tell. (And I have to believe it was a good lesson for her.)
10. Thank you for loving Africa, and for teaching me to love it too.
11. Thank you for always making me feel beautiful.
12. Thank you for so many incredible conversations on the River Trail.
13. Thank you for saying yes to so many of my crazy ideas.
14. Thank you for taking such good care of our cars. I’m trying to be better at it. I really, really am.
15. Thank you for being gentle. I didn’t know how much it would matter when I married you…but it really matters.
16. Thank you for being a fast forgiver.
17. Thank you for being a fast apologizer.
18. Thank you for being such a faithful friend to so many.
19. Thank you for loving worship and for teaching our children to love it too.
20. Thank you for taking care of me after four babies and two surgeries.
21. Thank you for taking such good care of those birds outside the patio window.
22. Thank you for wanting to live when so many would rather give up and die.
23. Thank you for always answering your phone, even when it’s hard to speak.
24. Thank you for letting me go away on girls’ weekends and conference weekends and Pam’s-turning-50 weekends.
25. Thank you for doing your own laundry for 48 years.
26. Thank you for never giving up on the church.
27. Thank you for never giving up on your friends.
28. Thank you for never giving up on me.
29. Thank you for never giving up on you.
I love you. And in a world where the concept of love is pretty punch-drunk, please know how deeply I mean it. The past few years have proven to me how much I really, really mean it. If nothing else is ever said of me when I leave this life, let it be said: she was married to the very best man – and she knew it.
I love you madly,
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,