The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine. A version of this post appeared first on August 3, 2012, on my blog of the same name.
I am currently reading a book of essays on writing fiction called The Half-Known World, written by Robert Boswell. One of the essays examines the use of “alternate universes” in literary fiction–not literal alternate universes like the Bizarro World of Superman, but moments in a text when a character’s “vision expands beyond its usual limits.”
On page 111, there’s a passage that struck me as particularly relevant to those of us living with chronic illnesses, especially invisible ones. The passage is as follows:
There are times when it seems there must be some other way of living, moments when the utterly ordinary takes on a measure of strangeness. Now and again, you may even feel as if you live in two worlds at once, one that is orderly and regular and looks like representations of life you’re accustomed to, and another that is disorderly and irregular and nothing like representations you’ve seen anywhere.
Even though the essay is about fiction, this paragraph speaks directly about people. And I know this feeling exactly.
For a long time I tried not to talk about my headaches, because it always garnered the same responses: do you need glasses, could it be something else, that sucks, I’m sorry, the you-are-faking-it look, the awkward silence. So I lived (or tried to) like a superhero, with two identities. Normal Kelly, who went out and did things and had fun, and Migraine Kelly, who laid in bed with an icepack on her head. In many ways, that hasn’t changed, except that now I talk about my illness openly (and try not to get too irritated by the canned responses).
And then there are times — a half a day every few months or so — when the pain subsides to the point that I don’t notice it at all. In those moments, I feel wonder and amazement. I search my head for the pain. It’s hard for me to believe that it’s not there, but when it isn’t, truly isn’t, I feel as though I’ve been transported to another universe, maybe another body. I wish I could stay there, but a migraine always brings me back to myself.
Ultimately, I’m not sure which mode of being feels more normal to me, more “orderly and regular,” and which one feels more strange, “more disorderly and irregular.” That scares me a little bit. I’d like to say I’m accustomed to being normal and social and happy, but I fear the truth is that I’m not. I’m accustomed to being in pain, to limping through life, being careful not to do anything to make the pain worse. But I do feel like somehow, some way, there must be another way of living. I just haven’t found it yet.
(The book is, by the way, quite excellent, and I’d recommend it for any writer or avid reader. Click here to order the book. I’m not getting anything to say that, either!)
What’s your “normal” mode of being? How do you envision that other way of living for yourself or anyone else you know who lives with an illness?