When he’s finally lying there, tucked in and masked-up, we wait. I stand beside him while he decides what needs to happen with his head in order to be comfortable. He thinks about it for a bit (sometimes a pretty long bit, which is kind of annoying) and then tells me what to do. “Lift my head up and pull the pillow toward you.” Things like that.
He’s unable to shift his own head in any way, so he relies on others to do the adjusting for him. Sometimes I get it right pretty quickly, sometimes we’ll go through seven or eight different positions before he feels ready to sleep. Not gonna lie, this is one of my more frustrating responsibilities.
When his head feels just right, he whispers, “OK. I love you.” Every night, that’s how it goes. And the process used to be repeated several times a night, but now it only happens once or twice and, this week there were two nights when it didn’t happen at all. He slept straight through from 11 to 9:00. That hasn’t happened since … I can’t even remember when. On the one hand, I’m glad he’s able to sleep. On the other, I think it’s indicative of the progression of this disease and how exhausted he always is.
Once we’re in for the night, I pull the covers up over myself and my first thought is always, “We made it.” We made it through another day. We earned a night of sleep. And we tried with all that remains to glorify God and to make His name famous. And maybe we failed a lot, but we tried.
Sometimes I fall asleep before any other thoughts, and sometimes I lay awake for long hours, thinking of how life is now and how it will be. I wonder how much longer our nights will be like this. If I’m honest, there’s not a single night when I don’t wonder if Steve will wake up in the morning. The longer we go, the more I’m able to shelve the stuff I can’t solve, but sometimes it does race in all bossy-like, trying to steal my peace.
And nights like tonight, I write. I mostly write so that I’ll remember it down the road. I write to remember these dark, intimate moments when marriage looked so different than I ever dreamed. I write for a day when I’ll need to remember that I’m stronger than I think. And I write so the rest of the world can understand the brutal realities of life with ALS.
That’s why I’m pushing publish on this post. Not so people will feel sorry for us, but so they will know the nature of the fight so many face, and that many of them face it alone or without the benefit of a caregiver who shows up in the morning. I believe that every person with working arms and legs has something they could give to a person who has none. Every person could volunteer time to give a caregiver a break or give some money to help find a cure. Maybe if enough of us tell our stories then we, the citizens of humanity, will be compelled to fight for change.
I believe.
