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Backstory: My Dance with Steve

 

 

One of the most miraculous things to come out of our ALS Fancy Dance was this photo.

 

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#ALSfancydance14 Photo cred: Joe Earwicker

 

 

Miraculous, because I didn’t think Steve would be able to get out of his wheelchair at all that night.  It never occurred to me that he would even try – so this moment was entirely spontaneous and, on his part, unbelievably brave.  Dancing with my sweetheart to You Are The Best Thing will live forever in my memory as one of the most beautiful, meaningful sixty seconds of my life.   I’m so glad some quick-thinking friends grabbed their cameras and captured it because behind every photo are layers and layers of life.  The picture shows one story, created from many, woven together and wedged into a 3×5 frame.

 

The story behind the story is this: Marriage is hard.  We are on year thirty and I will tell you honestly that there were some seasons when we didn’t know how we would go on. We knew we would go on – we’re both too stubborn to quit – but we didn’t have the first clue how. Hard times and dark nights conspired to sink our ship. Kids and money and mortgages and distractions and failures circle like vultures around even the stoutest hearts and surest vows. We have not been immune to these things, nor have we handled them perfectly. But I’m learning that the beauty in marriage is not in doing it perfectly, but in responding to the imperfections with grace and grit. It’s in the getting up and trying again, believing again, hoping again, dancing again. That’s where the real magic is.

 

Also?  Terminal illness is hard.  It’s hard on relationships. Hard on romance.  Hard on expectations.  Just really so hard in so many ways I could never have imagined before we walked the road. For much of our quick spin on the dance floor,  I helped to hold Steve steady while simultaneously sobbing into his chest.  And I have never felt more privileged or qualified to do anything in my whole life.  But at 3:00 a.m. when I am emptying the suction machine and fixing his covers for the third time and wondering if I’ll ever sleep through the night again, I do not always feel privileged.  And many times, Steve can feel it, too – he feels, not through my words but through my way, that his needs are an intrusion on my life.  Caring for him is the greatest honor, it really is, but I would be lying to say I feel that way 100% of the time.  As much as I’d like you to believe I have figured this thing out, the truth of it is that sometimes I feel selfish, suffocated and entirely insufficient for the job.  As I was writing this post, Steve had a crisis choking situation and I rescued him (and I know rescued is a dramatic word; believe me when I say it’s the right one) with shaking hands and frantic prayers and I did not in that moment feel at all qualified.  I felt desperately in over my head and hopelessly inadequate to care for a frail body with so many needs.  This is our reality.  Terminal or chronic illness is hard and I understand why many couples don’t survive it.  That we have survived, and in so many ways are healthier relationally than we have ever been. is not a feather in our cap – it is a testimony to the sustaining power of God and to the ways His grace smoothes and softens selfish hearts and holds us up when we’ve done all we know to stand and still can’t get our legs to work.

 

When I look at this picture, I see a third pair of arms. While I am holding Steve up, I am being carried by a bigger God than I knew existed before I needed Him this much – and also by Steve, who has not stopped loving and caring and cheering for me during his battle with ALS.  Turns out you don’t need strong arms to hold your wife’s heart.  He is just as strong for me as he has always been and that’s why he’s my hero.

 

The stories behind it make this photo a miracle because it is life that snuck through our dying.  It is joy that seeped through our sorrow.  It is hope in heartache.  The love you see is every bit real, but it is not perfect or polished or even particularly brave.  It’s mostly just rugged survival, fueled by the relentless mercy of Jesus Christ.  That’s marriage.

 

 

And that’s a miracle.

 

 

With hope,

 

Bo

 

 

 

September 4, 2014 - 8:11 am

Stephanie - Who needs mascara? Or words? I have no mascara left, and no words. Ya’ll have such a beautiful and courageous love; it’s truly incredible!

September 4, 2014 - 8:20 am

Raechel Brady - You are such a beautiful writer. Thank you for sharing your journey with us…peace to you and your family.

September 4, 2014 - 8:28 am

Karla - Crying, cheering, jumping up and down, crying more… This is my all time favorite blog of yours. Love it for so many reasons. Blessings to both of you! Keep dancing!

September 4, 2014 - 8:36 am

Sue Hendrickson - Beautiful. ..

September 4, 2014 - 8:44 am

Debbie Dunham - Beautifully written and the picture is amazing.

September 4, 2014 - 8:47 am

Anonymous - Thank you for your naked honesty, Bo. I hope to meet you someday to thank you in person. I feel like an interloper reading your blog without an introduction. However, in a strange way, I feel as though we have a connection …

I too have lived through a husband with a terminal illness and all the sleeplessness, anger, endless comforting and educating, cheerleading, fear, exhaustion, resentment and painful intimacy of a kind that can only be understood by spouses who have had to step up to provide the kind of life-saving and comfort care you describe. When you have traveled this road – the road you are on now – you hopefully learn that God has ways of speaking to you and reminding you you are not alone. Sometimes in strange ways, in unexpected places.

I know there are moments of dark humor and reflection and personal growth along the way. Our reltionship stretched to meet the requirements of the day with me always trying to straddle the line between being a loving wife, respecting my husband’s personhood and ability to express his own opinion, and the inner-drill sargaent I had had to become to keep this chaotic world I was living in semi-organized and “on track” (whatever that meant!). I had no path to follow and no caregiver support network. I just functioned and figured it out and dang near wrecked my own health in the process.

My husband was a pretty easy going guy at heart, which helped somewhat. I also have an ICU background which really helped with navigating and wrangling the medical world we found ourselves in for about a year. I remember finding gratitude in some crazy places ( a very full bedside comode after days of waiting for my husband to have a BM, for example). Now that I think of it, kind of reminds me of those “easter eggs” software developers and filmmakers put into their work for the eagle-eyed to discover. I am sure I missed a few “eggs” along the way.

Oh Bo, you are an exquisite writer. Thank you for sharing your lessons, especially those about marriage. The only time I usually hear people talking openly about marriage struggles is when they’re headed toward divorce. Baloney. That’s the easy way out. I think. Marriage is not only HARD. In my opinion (thrice married to boot so I feel fairly qualified to speak on this topic!) it is DAMN HARD. The romance novel moments come few and far between once you launch into ordinary life – children, mortgage, family obligations, finances, work. Throw a curveball in like a terminal or chronic illnes and… Whew!

When anything goes sideways with any and all of the afore mentioned, the poo can hit the ol’ rotating oscilator. What gets you through is raw determination to stick to your commitment, or in a line from one of my favorite off-Broadway musicals states “Make like a nail and… PRESS ON.”

We just have to press on, don’t we? After all, the alternative sucks. I am currently married, madly and passionately in love with my darlin’, a man who has given me the highest highs and the lowest lows of my life in our 12 years together. I am 55 and he is a scrappy, handsome, strong 83. I would not trade him for all the tea (Black Butte Porter?) in the world. But it occurs to me that the odds are I will bury him one day. Having done that once. I guess the ground is familiar, although the journey there – if that’s how it pans out – is constantly unfolding. Today we are both healthy, in high spirits, on a trip to the Olympic Peninsula. Car trips are always delightful – we talk and laugh and talk and share adventures.

I treasure each moment. This has become my mission – to remind people in my sphere that moments count, especially when illness strikes and ultimately moments are all you have. Every vacation memory and pic is a reminder that my husband/best buddy and I thrive together. I am the keeper of all the memories and on random occasions will pull out a photo album, play a Facebook slideshow. He doesn’t remember the details I do and, in fact, sometimes challenges facts, I think, just to be persnickety. Then I produce the photo evidence and VOILA! Vindication 🙂 I pray that no matter what life deals us, his memory will stay intact so we can always reminisce (at least that he will remember things to the standard dude-level that he does now!)

Anyway, Bo, thank you for indulging this very long comment. Thank you again. Your honesty, determination and love shine through, no matter the story you are telling.

September 4, 2014 - 8:55 am

Shell - Bo- Always humbled, inspired, moved, grateful, reminded and always prayerfully lifting both Steve and your beautifully transparent souls up to God! Blessings to you! Sending big hugs

September 4, 2014 - 9:07 am

Carol - If ever I understood the expression, “too beautiful for words,” this would be that moment. Thank you, Bo, for these honest and transparent words. I am blessed.

September 4, 2014 - 9:39 am

Amy - Bo, thank you so much for your incredible honesty. You & Steve are such an inspiration to everyone that knows you, both in real life & through your powerful words & story.

September 4, 2014 - 10:15 am

Sue McAdam - Bo and Steve, what an awesome picture and beautiful words. Through tough times and adversity you have and will continue to have each others love and God’s mercy and abiding love. My prayers for both of you…..as I’m crying my eyes out. Such a beautiful picture of God holding both of you. Thank you so much for sharing.

September 4, 2014 - 10:23 am

Kristen Lunceford - Sobbing at my desk over this with snot dripping into my coffee. TMI? Whatever, man. #yourfault

Thank you for choosing all those years ago to write your way through this. You could’ve buried your gift beneath your sorrow and excused it away a million times over, but you didn’t and you haven’t and you won’t and we are all braver for it.

September 4, 2014 - 11:19 am

Sherri Gragg - Amen.

September 4, 2014 - 11:52 am

Tiffany - Beautiful words, beautiful, heart-stopping photo — I’ve heard your name, and I’ve prayed for you. I only realized recently that Bo is who I knew as Bonnie, so long ago! What a sweet surprise. Blessings to you sweet lady.

September 4, 2014 - 1:16 pm

Melinda Hohenberger - You do not know how much I needed to hear this….we are also going on our thirtieth. I have a awesome spouse, too. But marriage, kids and family gets messy at times….

Praise God for grace so amazing and love so Devine. O, what a Savior….please know that you and your family are on my continuos prayer list if that is the correct terminology. It is a blessing and honor to pray for Team Stern.

He gives us beauty for ashes….

September 4, 2014 - 4:24 pm

Jeannie - I love you, Bo!!

September 4, 2014 - 5:32 pm

Wanda - Bo,
I am grateful for the IceBucketChallenge because it spurred me to research ALS and discovered Steve and Bo’s Story. I am currently reading Beautiful Battlefields after reading through your daily blogs. I have also signed up to received the blog daily via email.
This blog, like most, hit close to home-my high school sweetheart, husband of almost 37 years passed away July 2013, age 59 from Amyloidosis, rare and incurable to date. Though prognosis was less than 2 years we had 6.5 years to love and grow in our faith.
God Bless You and Yours!!

September 4, 2014 - 6:01 pm

Jacquelyn Strayer - …….no words……….

September 4, 2014 - 7:01 pm

Debbie - Thanks for sharing the picture and your feelings – you are an awesome person.

September 4, 2014 - 9:18 pm

Mychal Wagner - Thank you, thank you,…I feel honored , truly, to somehow be in a position to feel your life in such a beautiful moment as if the culmination of your marriage was captured in 60 seconds, and that moment you shared May be the light that my marriage was desperately in hope of, from the bottom of my heart . You saved my marriage… Thank you

September 5, 2014 - 7:33 am

Jeannie Robey - Thank you Bo for sharing your story! I have heard you speak many times at church and retreats and have come away with a whole new out look on my life, God and every thing in between!! I have always said you are an amazing women but that was an under statement after I read this blog!!! Every married women needs to read this. You have shown the true meaning of marriage here! The picture is priceless!! Your family is in my prays!!!

September 5, 2014 - 9:36 am

Jerri Gwen Carter - My heart and mind is changed forever. A Sweetness is in the picture that will stay with me. You look like newlyweds! I’m so grateful that I have been given the opportunity to get a glimpse into your lives. Thanks and God Bless you both through your journey.

September 5, 2014 - 9:23 pm

dodie - When I saw the picture, my heart leaped for joy. As soon as I began to read, Danny and I were in the car and I began to sob. I couldn’t finish at that moment. I just shut my phone and vowed to get to it later. I did and am crying again. Your love is so great. It’s how legends are made. Your words are life giving and encouragement to each and every one of us. You speak truth and I am so thankful and honored to know both of you. All my love.

September 6, 2014 - 11:50 pm

Rachel - Such a beautiful post and a testament to true love…a love that’s real because reality involves tough times and joyful times and everything in between. Thank you for sharing your story in such a beautiful way. I’m thankful for this moment of joy you could share with your husband in the midst of the tough times. Prayers for you and your family as you walk this road!

September 9, 2014 - 11:20 am

Joyce Bromps - You don’t know me, but I follow your blog. Just heard a yearningly beautiful song that I want to share with you. Go to Brooklyn Tabernacle webcast, Sept 7, and start listening at 42.40. Blessings!

September 9, 2014 - 2:43 pm

Laurie - oh Bo! Thats so touching. You guys are so amazing.

September 12, 2014 - 8:54 am

Randy Moyer - As many others have already expressed I read your post through tears, laughter, and hope all mixed together. I am starting my life with ALS, diagnosed in January 2014, and so far things seem to be moving ahead slowly. I am also caregiver for my wife who has a severe back issue which has kept her bedridden for the past four months. The feelings of taking care of her is the majority of the time no big deal and I do it with compassion, however there are times where I wonder how much longer I will be able to continue caring for her and deal with the ALS. We are serving the Lord in France, away from our family, even though our church family has been there for us, we still miss our five grandchildren and their parents. I am so thankful that you have expressed your difficulties and your husbands as you rely on the Lord to get you through. My life verse has been, 2 Corinthians 12:10, when I am weak then I am strong. God has never been closer since I was diagnosed and if this is what it took to help me see how close He is than I’ll celebrate my ALS with peace and joy that only He can give me. God bless you and your family, and keep the sharing your heart so that others like me can benefit from what God is teaching you. Randy