I keep replaying last night in my head. A few hours after going to bed, I started feeling some muscle cramping and spasms. I tried to adjust my position to find comfort, but I could not roll to my side. This is becoming more and more common as the weight of a blanket becomes enough to pin me down. In the past, I have whispered Evan’s name and, half-asleep, he reaches out his hand, clasps mine, and pulls me to relief. I promised myself not to need him last night, though, since he has been up with me each night this past week as I fight a cough. He was clearly worn out.
“I can live with this, I can breathe through this,” I chanted silently.
Evan never complains about the ways my disease wears him down or holds him back. Ever. He is my absolute all, my strength and reason for fighting. He is the steady, calm man I have loved and trusted all of my adult life. Even in his sleep, he looks kind. He deserves sound, peaceful rest at the very, very least. So I lived with the spasms and breathed through them… for an hour. I tried to let his peace and my will be enough, but, like a lung clenching for air after being held underwater, I. Had. To. Move.
I woke him up three more times last night. We will experiment with my medicine tonight to relax my muscles. He will take extra care with my evening stretches. I will bargain with my disease to leave him alone. I will try to forgive myself
How I Live Now: Life With ALS 