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In Sickness and Health

Steve & Bo candle light rally

People sometimes dance around questions with me about marriage and terminal illness.  They wonder how it changes things,  if it changes things.  I think it does and it doesn’t.


We are who we have always been inside.  We have always been careful fighters.  We watch our words because we’ve learned in 28 years that it’s really hard to take them back.  But while we’re careful, we have not had a conflict-free marriage; not by a long shot.  And we still don’t.  This seems to surprise people who assume a terminal diagnosis is such a game-changer that nothing is now worth fighting over. I get that.  I would have thought so too, but it’s not true.   At least, not for us.


We still sometimes fight because this diagnosis did not fully dismantle our humanity which came pre-loaded with the desire to be right and to get our own way.  While it’s true that fewer things matter now than before, there is also the added pressure of sorrow and strain that accompanies ALS which tends to heighten the emotion connected to the things that do matter.  The result is that an argument can escalate quite quickly  and unexpectedly.  I am neither proud nor ashamed of this; it just is because we are real people, made of dust and lost without grace.

Me and Steve sparklin


So, yeah, we argue like we used to.  But we also stay mindful of what’s important in ways that we didn’t before.  We hang onto beautiful moments with both hands and sometimes I can feel us both recording them in our memories for a day when we’ll need them.  I write things down in a sacred, secret journal; one I will never share with the world outside our marriage and sometimes I wonder if I’ll ever have the courage to go back and read it myself.  But I write it down, because, no matter what the future holds, I will want to relive the the story of the friendship God has given me with a man I do not deserve.  This memory-keeping, secret-holding part of our marriage is new and beautiful and not without pain, but it’s the right kind of pain.  It’s the pain that reminds you you’re still living. Like a sharp pinch on the skin, it tells you you’re still awake, still in the game, still a part of a brilliant team. It reminds you the only reason this journey is so gut-wrenchingly difficult is because you’ve built something you really, really don’t want to lose.


The statistics on couples divorcing after a terminal diagnosis are grim and tragic.  It makes my stomach hurt to think of it.  But I do believe that any sort of Really Big Battle in a marriage mostly makes that marriage more of what it was before the battle.  Suffering makes the hard harder and the lovely lovelier and the tempers hotter and the forgiveness sweeter.  And however difficult this fight, we’re in it together in a way we’ve never been together in anything before; together every breath this side of eternity.



I think Steve would agree that knowing we may not have all the time in the world has made us better people and better at marriage.  If I could bottle up the “better” without the battle, I surely would.  I would package up these feelings of deep appreciation and love for the life we share and I would give it to every couple just now saying “I do.”  I would give it to them for the days that go bad, for the fights that aren’t careful, for the words that land hard.  Because this appreciation doesn’t keep those things from happening, it just changes how we respond to them.  And, that, friends, is the real game-changer.




P.S.  Fun fact:  I wrote this post with The Bacherlorette on in the background.  I never yelled at my tv, but I did roll my eyes infinity times.

July 1, 2013 - 9:30 pm

Randy McBride - As always I love your candid words. It is real, and where we all live.

July 1, 2013 - 9:49 pm

Michelle Watson - I’m watching The Bachelorette right now too so I had to write and tell you that! :o) And I have no idea how you can write with such tender depth while watching TV, but that just goes to show that God has given you an extraordinary gift at communicating while in process. Love you!

July 1, 2013 - 10:24 pm

Nita Belles - I love you, I love Steve, and I love you two together. So hard to understand these things this side of heaven, but somehow, someway, our God is big enough to allow us to question, even if we don’t ever fully understand the answers in this life. 24/7 even for venting, ranting and even a little sipping. Love you friend.

July 1, 2013 - 10:46 pm

Judy Hostetler - Thankyou, this is refreshing and confirming of the thoughts and prayers I send aloft to God on high as He carries you through. bless you…

July 1, 2013 - 10:55 pm

Susie Kay - There may come a time when those secret words become a gift – to you or someone else. A couple of years after Donald died, I found some of his journals in a box. His journaling was mostly “just-the-facts” like the weather or he took a walk, but in the middle of one of those journals were these words… “I sure do love Susie.” Wow! Huge gift. Thank you.

July 2, 2013 - 9:13 am

Connie Reid - Bo–I enjoyed your words this morning–I needed a little Bo talk this morning. Think of you and Steve so often…Wish I could stop in and say hello!–

July 2, 2013 - 9:43 am

Jalet - The ugly is as real as the beautiful, but the focus is what changes who we are. Your focus remains your beauty from ashes Bo. Thank you for daring to be real, inside and out. It is a lost art in battle. Living strong, is sometimes made possible by living real.

July 2, 2013 - 9:46 am

Jamie - I was listening to an interview the other morning with a single actor talking about why he wasn’t even considering marrying his long time girlfriend. He made the statement, “I think that marriage is for the end of the road and not the beginning.” I disagree with him. Loyalty refines us like nothing else has the power to do. It brings out the ugly but it also uncovers the beautiful that we didn’t even know we were capable of. Your words reminded me of that this morning. You and Steve are more than a voice telling a young generation that the difficult path is still worth it, you are an example to follow. Thank you, both, for that.

July 2, 2013 - 9:52 am

pam - Brilliant. As usual. xoxox

July 9, 2013 - 9:03 am

Barbara Long - This evil disease has created a new intimacy I never knew was possible and like you, I’d like to “bottle up” the closeness without the battle. Caring for Jeff after his DPS surgery has been our first real step toward me caregiving since up until now he’s been completely independent. As we struggle together and he learns to let me help him we are experiencing new aspects of our relationship but like you mentioned it’s still the old us. Those places of power struggle still exist and we have to fight against turning on each other but God is faithful even in those times to teach us; I do find myself swallowing my pride sooner than later. Would that growth have been there without this battle? I can’t say but I can praise God for His faithfulness regardless.

Thanks for your continued transparency. The truth of the matter is that life is down right tough and God is down right huge! God is using you in my life and I appreciate that!

Praying for the Stern Family,
Barbara Long