I hate so much of what’s going on in my world. For instance, I hate nausea. Good lord, I hate it. As the radiation and chemo move ahead, my body is trying more and more to reject everything. Fortunately, I have all the Zofran I could want, and I’m tempted to write them a love letter for helping to quell my urge to vomit. And yet regularly I go through my days and am not entirely prepared for when a small bit of potential vomit raises its head and waves to me. This feeling makes it difficult to be fully functional. Plus it feels awful. I hate it.
When I underwent brain tumor surgery and all the follow-up medical procedures, I bought myself seven XL T-shirts, each one a different color. These were somewhat visible because of their brightness, and they were also comfortable. They were a kind of political clothing: I kept telling people that this is what I’m going to wear when I go back to teaching classes. At first, I wore them all day and all night. But that I’ve recently discovered, though, is that I hate these shirts. Every time I pull one out of my drawer, I feel hostile. They used to make me smile, but now they just remind me of a Sesame Street character, assuring me that everything is great, calling me a hero. Fuck that. I’m now wearing Star Wars shirts every day.
I hate being asked about my hair from medical or personal perspectives. I hate being given compliments about the fact that my hair hasn’t fallen out yet. I don’t care. I truly don’t care about my hair. It falls out? I have polka dots of hair left? Fine. Who the hell cares? I believe my interest in my hair is slightly less than my interest in scuff marks on my car’s tires. What matters to me is my ability to take care of my daughter. My ability to read, write, and teach effectively. Gonna send me to class with my hair all over the place? I don’t care at all.
My sleep is fucked up. I’m sleepy for multiple times in the day. I take a long nap in the morning, and often by 4 or 5 p.m. I need support because my energy is slipping. Not only do I hate how much I have to sleep, but I also hate the kinds of weird stuff that floats through my head, nightmare-y stuff.
Or perhaps even worse, I’ll be so exhausted that my body has given out, but I’m lying in my bed thinking thinking and thinking. It’s like my body has given out, but my mind is churning through all kinds of annoying things. Oh, I hate it.
I love food. Love it, love it, love it. I’m a huge fan of barbecue sandwiches, banana muffins, and burgers. I can be so joyful about my mom’s pot roast that I eat way too much. Pecan pie? Yes. Golden Grahams cereal? Hand it over. Except these days, please don’t hand it over because it sounds repulsive. I’m trying to figure out what I can eat. Currently, it’s bread, granola, and soup. I hate that. For what it’s worth, a person at the radiation factory told me to try smoothies filled with protein powder. The thought of that was never good, and it’s worse now.
I thought I was moving forward on my recovery. I’ve had the surgery! I’m feeling better and better each day! Soon my life will be just the same as it was! In the immediate days the radiation didn’t contradict that belief. But now, three weeks in, I’ve learned that I feel terrible. And more troubling than this: I learned that it’s going to get worse before it gets better. And that after the radiation is finished, I’m going to get better — but slowly. This doesn’t fulfill my expectations. I thought that the day I stopped the treatment, I’d feel great. Let’s go out for a celebration dinner, women in my life! Instead, there’s a good chance that on the day the treatment ends, I’m going to want to go to my room and sleep, just like most days.
My hatred is about my continual efforts to emerge from these treatments, to be competent, to be a fully functional single parent, all of whose skills are just fine. I’ve been reiterating versions of these efforts again and again, and fighting to make them happen. I hate anyone suggesting that this isn’t a good idea. My mom was living with me, and two weeks ago I sent her home to prove to the world that everything’s just fine.
But everything’s not just fine. I feel like shit, and even more than that, I’m not able to do this on my own. I’m not a fully functional single parent. I’m not able to stay awake, to take care of things, even basic things like getting the groceries. If Maybelle wakes up at 5:30 a.m., I’m just too exhausted to get up and take care of her. I’m furious to recognize that I need help. And I’m terrified that my life has changed so much that I don’t know how or when I’ll emerge from all of these challenges.
This week my mom has returned to town to take care of me and Maybelle for as long as we need her. I don’t hate that.