I had all of these plans today. After work, I was going to give several friends a call regarding some art projects. I was going to shoot a video for my youtube channel. To top it off, I was going to try my hand at coding Arduino software.
Instead, I am sitting in bed watching Batman Beyond while typing this blog post. The reason is lying right next to me. My girlfriend has a history of chronic illness and today it is crippling.
I had already started my phone call with my first contact during my drive home from work. As I walked in through the front door, I looked at her and she gave me a look of pure exhaustion from simply existing.
A part of me is upset that I can’t do all the things I planned. Especially since I’m busy for the next few nights and won’t be able to do any of this until Saturday, which is traditionally a spontaneous day.
Then again, it is unfair to feel such things.
And now that I am in bed, I am having a good time. I have been pretty busy myself with very little room to breathe. Sitting here, rewatching one of my favorite shows as a kid. Getting some time to work on my blog. In a way, I feel like I needed this.
I just wish Sophie could say the same.
She has been struggling with this illness for some time. She has had to change her diet and start taking medication. The doctors don’t even know what is wrong with her despite nearly half a year of tests. All they do is shrug and give her the bill. People wonder why I consider doctors nothing more than car mechanics for humans.
She has snapped at me twice, followed by “sorries.” Today, I was patient. I got her a heating pad, ice packs, hot water, and dinner. I gave her hugs, kisses, and pats on the back. I turned on her favorite shows when she wanted to watch tv and made sure to turn the volume down while I am watching mine.
I am being good at this today. Some days, I’m bad at this. Especially towards the beginning, I would yell, then she would yell. I would try to understand but get angry at the fact that I can’t understand. I am never mad at her but furious that this is happening. I try to find solutions but become enraged when no obvious answer presents itself. In a lot of ways, I am a simple man. If there is a problem, I want to fix it quickly and move on with my life.
Unfortunately, chronic illness does not have quick fixes or answers. It does not care about you or your suffering. I used to think it was a cruel joke by the universe personified, laughing in its evil lair as it plots its next scheme. As an adult, I realize that it can’t be personified and there is no rational force to get mad at. This makes it all many times worse.
Still, I am trying to make the best of it. Even though we live together, how many days do we have together? With my busy schedule, there are some days that I barely get to see Sophie, even if I am home.
So instead of doing all the things I planned, I am spending time with my favorite person while I write blogs and watch Batman Beyond. Sophie is lying next to me. She is struggling, but alive. Even as she feels defeated by the world, she manages to stay beautiful in her way. She tells me of foods she wants to eat, like smoothie bowls.
“Wait…what the heck is a smoothie bowl?”
She shows me a picture of it. It’s a smoothie in a bowl with mixed fruits and nuts on top, eaten with a spoon.
Danger Wonka 