I started a Tumblr page today. I basically know NOTHING about Tumblr except that as a result of being on it, I follow a guy who’s making a different balloon animal every day and woman who draws funny penguins and writes wry comments about them. Otherwise, as a social media platform, I find it generally perplexing.
But from what I can tell, it’s a good place for my new project: The Window Pain. See, for the last 20 years, I’ve had chronic pain — fibromyalgia and atypical facial pain (which is kind of like trigeminal neuralgia only with a slow burn, not lightning strikes that flatten you). Pain is with me all the time. And I think about it all the time. But here’s the problem…
Because I’m always thinking about pain, I often think about writing about pain. But I don’t want to write about pain because I’m sick of talking about pain. And lord knows everyone else must be tired of hearing me talk about pain. Don’t get me wrong — you guys are all great. You’re super supportive and extremely empathetic, and I couldn’t ask for better friends. But let’s face it — at some point, don’t you just feel like saying, “Can we talk about something else?”
When Pain Gets Boring
My friend, Vanita, found this passage from a book called The Last Resort by Alison Lurie that perfectly describes living with pain and people around you being “over it”:
“Having a chronic illness, Molly thought, was like being invaded. Her grandmother back in Michigan used to tell about the day one of their cows got loose and wandered into the parlor, and the awful time they had getting her out. That was exactly what Molly’s arthritis was like: as if some big old cow had got into her house and wouldn’t go away. It just sat there, taking up space in her life and making everything more difficult, mooing loudly from time to time and making cow pies, and all she could do really was edge around it and put up with it.
When other people first became aware of the cow, they expressed concern and anxiety. They suggested strategies for getting the animal out of Molly’s parlor: remedies and doctors and procedures, some mainstream and some New Age. They related anecdotes of friends who had removed their own cows in one way or another. But after a while they had exhausted their suggestions. Then they usually began to pretend that the cow wasn’t there, and they preferred for Molly to go along with the pretense.”
So this is why I’ve started my Tumblr page. I need to do something with the thoughts and emotions that get in my way every day. But I don’t want them to be the cow that takes up my entire house. So I’m giving the cow her own little room where she can moo as loudly as she’d like.
A Chronic Pain Photo Journal
Every day, I’m going to try to take a picture that shows a little piece of what I’m going through. It probably won’t be accurate as far as how my entire day turned out. Maybe it got better, maybe it got worse. As I just said to a friend, I’m like Six Flags — a constant roller coaster of ups and downs. And you never know where you’ll catch me.
But I’m also a whole lot of fun (at least I try to be). At least on the upside. And that’s sort of the point of this. As much as I appreciate everyone saying really nice stuff when I’m feeling like crap, I don’t want that to be my “thing.” I don’t want it to be the only thing I write about or the only thing people think about when they see me or the only thing we talk about at a party.
But that’s another reason why I need The Window Pain. I’ve gotten used to keeping so much of my real, daily feelings close to the vest. I’m an excellent faker. I don’t think that’s necessarily a bad thing — sometimes it’s just how you get through the day. But it’ll be a relief to have somewhere to put it all.
So here’s the plan: I’m going to post through Instagram and Twitter. Every once in a while, I’ll post to the World’s Worst Moms Facebook page, but I don’t want to do that every day because like I said, I don’t want this to be the focus of your life on my life. If you want to follow along, feel free. If you want to step away, please don’t feel badly about it.
Because I know if I could, I’d be more than happy to pretend the cow wasn’t there.