I’m working on a project about the experience of chronic pain, and I’m aiming for it to be not literary but still thoughtful and mutual-helpy, a kind of daily reader for chronic pain folks. I’ll be posting excerpts here occasionally to help demonstrate an interest as I shop a proposal around.
The standard world, the majority, seems to operate on a daily basis without some form of excruciating or annoying physical pain. I can “pass” as normal in that world, which is a place I used to live all the time. But now I live somewhere different, and here, my body normally has pain. Pain—the signal that something is amiss, wrong, or bad—is okay here. I don’t mean that I like it. I mean that pain is nothing surprising here.
The pain experience itself is that red flashing bulb in the background of my day: danger, danger, danger. Especially when I’m tired or run-down, and especially when my pain overwhelms me, I often take on the world’s negative judgments of pain as well as the pain itself. If I am in pain, I am bad, wrong, amiss.
Here I am on the couch, on a day I had to call in sick to a meeting. I am waiting for a call from one doctor and I know I have to go to another doctor this afternoon. And all throughout my body, the danger signs and red lights are flashing: abnormal, amiss, wrong.
I am living in that red glow, but after five years of it, I have managed to make a transition in how I see it. I first went through a solid year of panic at how horrified I was to be in pain all the time. I had pain, and then I had mental pain about the pain. Gradually, over the following four years, I began to understand that that red flashing light of pain had to become the new normal for me. I have an incurable disease. That doesn’t mean that I as a person am abnormal, dangerous, or amiss.
I still go into that panic rejection of pain almost every day, but most of the time I can separate the two strands of discomfort from each other. I want to hate the pain without hating my life for having pain in it.
I have to constantly remind myself that the pain is not a sign of failure and that I am no longer living by the standards of normal bodies. For me, this pain is perfectly unsurprising. Some days are down days. I am well within what is normal for my body. For me, this is no failure. This is how I live, and one of my goals is to get a real sense of my body’s range rather than judging it by what other people say their bodies do and feel like.
If I can remember that, I have one less thing to pile on myself as I’m laying here, trying in a half-hearted way to respond to work emails. I’m getting stuff done, and then I’m resting, by the light of this red flashing light, and although it’s a little glaring sometimes, it is my life. This is my normal, and my body is well within the range of human experiences. I am not abnormal. I am on the bell curve and part of the human community. Some of us have pain and we are still people, exploring the full range of what it means to be alive.