Luther goes in for his feeding tube tomorrow. He's nervous about the procedure. Apparently, they stick a camera down his throat, which does sound pretty icky. I keep telling him it's usually an outpatient procedure - as if it makes it no big deal.
I get that it's a big deal. I think sometimes, in the face of bad things, we try to minimize the badness. Instead of telling him, yeah it sucks, I say, it's all going to be fine. We try to find words that might somehow soothe a soul when instead, we should allow some space to acknowledge fear or sadness. I have told him it's ok to be afraid. And it is.
I'm working throughout his hospital stay. I feel awful about this but it is what it is. I keep thinking how - in the scale of terminal illnesses - we're somewhat fortunate that he's a veteran because ALS is considered a service related illness and so much of the expense related to the disease is covered by the VA. Fortunate because my work has been really flexible with letting me come back to a store closer to home. But I'm feeling selfish with my time. I want to be with Luther more. Damn you bills and insurance and those pesky every day things that I couldn't afford if I didn't work!
Luther woke me up at 5:30 this morning with his cough. It's a constant, now. If I don't hear it every hour when he's awake , I worry. I went downstairs to get him some water and decided to crawl in to the twin bed with him.
He wrapped his arms around me and I could feel that fasciculation in his arms. The big twitch. I remember reading a Stephen King short story where this man's hands would detach themselves at the wrist and go off and do dastardly things in the night. That's what his arms reminded me of - these twitchy, living things that seemed separate from the rest of his body.
Oddly, it's quite the opposite. The livelier his twitches get, the more his muslces are degenerating.
I don't write much here. It felt good, for a time, to blurt out all these new, scary, weird thoughts about dealing with a terminal illness. As if, somehow, by writing, I'd shove the feelings out of my head and in to the internet ether, those feelings would dissipate.
But lately, not so much. I feel myself putting up a protective wall and hiding behind it. Plus the fact that people reading this see just a snapshot of our day. Of my angst. I might post some awful, sad, melancholy thing and within an hour I might be grocery shopping. But I don't come back and write that life turned itself right side up and things seem ok for a moment. Sometimes it feels to hard to explain things, to actually have to sort out feelings.
Sometimes feelings suck.