Thursday, August 21, 2014
Everything is different
It's hard to sleep at times. For both of us, I guess.
Too many thoughts so I try to stay distracted. My house is never quiet. Always music, the tv - something to occupy my head.
I remember when we were going through the testing (it was about 6 months of wondering/testing) and ALS was on the table. When we realized - we really truly realized this could be a terminal illness, we went to this bar and sat in a booth until one in the morning, talking, crying.
Now - ten months later, that feeling of scariness, of hopelessness isn't as cutting or as prevalent. We try to live our life in the most normal way possible. You don't really have a choice.
Luther is all tilty now. He can't sit up straight. It wasn't noticeable at first but he's super tilty. We'll be sitting downstairs, watching tv and suddenly, he's all slouched over like a little rag doll. He doesn't even notice. His neck is all floppy.
I try to figure out how to lead a good life. Something meaningful for Luther. It doesn't always work... sometimes it's all I can do to pick up fast food after work, spend a few hours with Luther and then go to bed.
In some ways, life should be simple, right? This prevailing idea that we need to just live life the best we can should be our guiding force. At least mine. How do I make Luther happy today?
Life seems the same and yet, it's all so very very different. It's a weird feeling. I get up, go to work, the usual. But it's not usual. I'm not sure I can even explain it. This underlying nervousness, tiredness, this weight of his illness is lurking around right under the surface. It clouds and colors everything. Sometimes I stick my head in the sand so I can't feel, can't think. Other times I'm hyper aware, viligant AND diligent!!
I'm just rambling. It's good to get it out of my head but it's all so circular. I started writing this post thinking about how everything feels so different - brushing teeth, getting dressed, eating, making weekend plans, walking. All those things we take for granted. The things we don't give a second thought to doing. All of that takes a ton of thought.
I should get to bed.