I fear I’m becoming more and more like my grandmother as I pepper every conversation with thoughts about how fast time is moving. But it’s true. I can’t believe it’s June and I can’t imagine where the first half of 2013 has gone. For me, it’s been consumed with three main things: book promo, ALS and ALS.
ALS gets to count for two things because it requires double the resources that anything in life ever has or, I suspect, ever will.
The past two months in the land of ALS have been difficult, draining and honestly, unlike anything I’ve ever experienced before. Steve finds himself in a season in which nearly everything he does requires herculean efforts, most especially – breathing and eating. Consequently, he has to fight for every scrap of emotional fortitude in order to keep himself on top of the wave instead of underneath. It’s incredible and awful to watch. I can’t begin to articulate how much I feel A) impressed and in awe of the man I married and B) utterly inadequate to be all that he needs.
I’ve never had a front row seat to a battle of this magnitude and, I don’t want to be dramatic, but I can tell you that I hit a point about a month ago where I realized: I am being changed by this. I’m being changed in ways that are wonderful and ways that might need a little healing when we get to the other side, but I know with certainty that I am not the same girl who went into this war three years ago. I know my thoughts sound a bit murky and that’s only because they are. I’m working very hard right now to sift the gold from the chaff, the beauty from the ashes. Some days it’s easy. The strong stuff rises to the top and we float with it, immersed in the wonder of being held by a God who has not abandoned us to this process. We feel His life surrounding, keeping, sustaining. And some days finding the beauty in ALS is like walking uphill through quicksand.
And herein lies the conundrum at the heart of my writing life: how much do I focus on this disease and how much do I try to dodge and weave it’s reality? Because in the beginning, I thought I could. I thought I was able to pick bits and pieces and sew stories out of other, more beautiful thread. Thread that is easier for people to read. Thread that might possibly make my life look prettier and more together than it is. But now I see that a neat compartmentalization of this battle is not just difficult, it’s impossible. My life is sewn with two colors right now and not just one. This one thing – this steady erosion of my husband’s strength – is packaged up with everything else. It’s the pop-up at the bottom of the tv screen (boo!), it’s the flavor in the soup that you just can’t seem to shake, it’s your neighbors wind chimes that sometimes are less-clangy than others, but you always know they’re there. It’s our reality and reality for us has gotten pretty noisy and bossy in the past few weeks which means that I can write airy sentences about graduation or summer or how I really love my Nutribullet (I really, seriously do), but all those words are weighted with anchors, keeping them tied to the shore of this new reality.
And so sometimes I worry. Not for me, because writing is cathartic for me. I worry for you. I worry that the people who love us will grow weary of this war and it’s sorrow. Our hope has been to bring awareness to a disease that so few people ever see up close…and so I think I’ve tried to put the best face on it, lest our story becomes just…too much. Too sad. Too long.
But real is real and life is life and God is either good in the Too Much or He’s not good at all. And I can tell you: He is. So good.
I recently read a quote (and I’m too lazy to look up the author, but I’ll tell you it wasn’t me) that said: we are not as those to grieve without hope, but we are not as those who hope without grief. It’s exactly right. Hope and grief for me right now are my inhale/exhale. They are the one-two punch that drives me to the one true Source of everything. And I hope that our story – our real, true story – moves you to Him as well.