Katherine Made My Day Better

Yesterday was a tough day, a really tough day, probably the most difficult I have had so far when it comes to living with ALS. As with so many tough days, it wasn't one thing, but a combination of many. When I woke up yesterday, the pain in my tailbone was sharp, stabbing me like a giant steel pin shoved up the base of my spine. The muscles in my back were in pain, sore and aching pain, along with cramping and the spacticity of ALS. Then there were my arms, my shoulders, the muscles in my neck, all of which were going through the same pain of overuse and cramps. I was a mess.

When home care came to help me with my shower, I couldn't get out of bed. So they washed me in place, a bed bath. It wasn't the best of jobs, but I was relatively clean. The HCA helped me dress, something I rarely allow. Dressing myself is my last vestige of true independence. Then she did my exercises for me, while I simply lay back and let it happen. When she was done, so was I. She left and I went back to sleep.

I stayed in bed all day, from morning to night, restlessly shifting my weight to minimize the back and tailbone pain. By not using my arms much, there was little impact of the ache from overuse. By staying in bed, my neck did not have to support my head, so it got some rest too. I stayed there as the sun passed through noon, as the afternoon shadows set in, as the dark of evening settled. I stayed in bed until around 5:30 PM. I hurt. I was weak. I did not want to move.

That's when Katherine came over to see if I was okay. I had texted her a couple of times during the day, letting her know I was alive, and letting her know that the pain "was killing me". She walked through the door and asked if I was dead yet. After all, wasn't the pain killing me?

Then she went to work. She got busy in the kitchen, making dinner and tidying up. The clatter of her in the kitchen motivated me to get out of bed, notwithstanding the pain. She fed me, although I did not want to eat. Her urging helped me get the barbeque duck, baby bok choi, and noodles out of the bowl and up to my mouth. She said I smelled funny, and I needed a haircut. So she cut my hair and I had a full shower; I felt better, I looked better, I smelled better. She gave me some Tylenol 3 she had from her broken arm back in January. The pain went away, quickly in my back muscles, slowly, but never completely, in my tailbone.

By the time she left to go home, I felt well enough to stay up and watch TV for a while. So I did. Even with that, I could still feel her presence, still smell her fragrance in the room. I missed her within moments of her departure. She made my day better.