Back when Steve and I were both healthy, I occasionally thought about what it might be like if one of us got sick (**see footnote below). I imagined many of the challenges that might go along with a terminal diagnosis and I was right about some of it – but I missed a big one completely.
One of the most difficult things about navigating a marriage around ALS (for me, at least – I certainly don’t speak for everyone) is that for the first time ever in our relationship, we are heading different places.
Our 29 years together have been filled with up’s, down’s and a whole lot of middle’s. We have not done marriage perfectly by a long shot, but the one thing we’ve always contended for in our relationship is unity of purpose. We have really tried to have the same goals in mind: raise happy, healthy kids, upgrade the car, improve our education, serve with excellence, etc. We are a good team because, while we disagree on plenty of shallow things (he likes oysters. Ew. How can I agree with that?), we always agree on the big things and we help each other believe that we can get where we’re going. We’ve had to adjust our course through the years, but we’ve always adjusted together.
But when Steve was given a 2-5 year prognosis, it was like we both heard the word “recalculating” spoken independently to each one of us. From my vantage point, Steve’s journey is far more difficult than mine, but his destination is much more beautiful. He’s moving toward resolution. Toward the ultimate cure. Toward a life that is unknown and yet not – we know it will be beyond all dreams or imaginations. He has no decisions to make about his future life which I know is both unsettling and comforting. My destination is also a mystery, but I feel so responsible for it and for the children who trust me to lead them. I feel like I’m entering a world with no map and without my trusty sidekick who’s helped me with directions for 30 years. He’s also made the journey really fun. So I can’t say that where I’m headed looks in any way dreamy.
And yet, I have this assurance that circles through my brain when I start to feel suffocated by thoughts of an unknown reality and you already know what it is because I say it here all the time. The God I’ve chosen to follow has already been to every minute of my life. He knows where our respective roads are going and I do believe He calls them both, “good”. He has good plans for me and beautiful plans for Steve. He’s always known where the road will take us, and He’s not wringing His hands in heaven over the fact that the details look murky to me.
So, we walk, Steve and I. We walk together. I help him get where he’s going and he helps me. He talks with me about what to do with the house and the kids. He has father-son talks with Corey about how to help me navigate the road ahead. He generously sows into a future he may only see from the balconies of heaven. And these conversations? They are painful. Yipes, they are painful. They are filled with rolling tears and gaspy sobs (me – all me, Steve doesn’t cry about this stuff). They are filled with brutal, raw-edged beauty that I will remember always as the most intimate moments I have ever shared with the love of my life.
I don’t have a clever application point to end this with. I can’t tie it all together for people who are not steering their way through the Shadowy Valley. I only share it to point to the goodness of God in a world of uncertainty. Also, as a marker I can return to when I wonder where the heck I’m going and where is that map and how do I read this compass anyway? I hope it gives you hope that you can find your way as well. A verse to end with seems like a good idea:
That is why I am suffering as I am. Yet this is no cause for shame, because I know whom I have believed, and am convinced that he is able to guard what I have entrusted to him until that day. 2 Timothy 1:12
**Note to healthy people: try not to do that. Just enjoy being healthy. And if you DO imagine tragedy, just remember: you can imagine the pain, but you can’t imagine the grace that comes with it. That’s all.