Miss Migraine: Being a woman obsessed with Star Wars is kind of like having migraines

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The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine. A version of this post appeared first on August 21, 2012, on my blog of the same name.

If you hadn’t guessed, I am obsessed with Star Wars. Obsessed to the point that I have it permanently inked on my body and spend inordinate amounts of money to dress up and go to conventions. My office is practically a shrine to it: Posters and action figures everywhere. Even my filing cabinet is covered in Star Wars magnets and hilariously bizarre phrases constructed from Star Wars magnetic poetry (“Have a slimy Skywalker scum?” and “Solo may do or do not this nerf herder.”). The cake topper at my wedding featured Luke Skywalker and Mara Jade (whom Luke marries in the expanded universe books and comics).

My mother knows the expanded universe well enough that on a visit to Toys R Us, she heard someone ask a sales clerk about action figures of “the twins” and knew immediately that this person must be talking about Jaina and Jacen Solo, Han and Leia’s twin children (and then she bought them for me, knowing they are two of my favorite characters). My mother also named her German shepherd Mara Jade, not because she had read any of the comics, but because she was familiar with the character (from my incessant ramblings) and liked the name.

To put it simply, Star Wars permeates every aspect of my life, and by extension, the lives of my family members.

Millenium Falcon replica, R2-D2

Me sitting in a replica of the Millenium Falcon at Star Wars Celebration Europe in London, in 2007.

And yet, many people have had difficulty believing I could be a Star Wars geek/nerd/fangirl/whatever they’re calling it these days. After all, you can find Star Wars t-shirts at Kohl’s and Target and Hot Topic, and it’s cool to wear a pseudo-nerdy old movie t-shirt. When I say, “I love Star Wars,” most people assume that I mean “Star Wars is an awesome movie.” If I say, “I’m obsessed with Star Wars,” most people still assume that I mean “Star Wars is awesome.” At least until I show them the giant X-Wing tattoo on my leg.

At conventions, when people would see me sitting with my dad in the food court, they’d come up and make a joke about how he’d dragged me to the con. My dad would always laugh and say it was the other way around, and the person — always a man — would look a little surprised, but pleasantly so. That has never made me feel better about the assumption.

Like my obsession with Star Wars, my migraines affect every facet of my life, and the lives of my family members. I have yet to get a migraine-related tattoo, but that’s only a matter of time, I’m sure. With 33 million migraine sufferers in the United States alone, I think it’s safe to say there are as many migraine sufferers as there are Star Wars fans.

I miss school and work because of the intense throbbing in my temple. My family has learned to identify when I’m in pain and they know what they can do to help me get through it, the same way they know how to make my month by picking up an action figure of my favorite Star Wars character as a surprise present.

And yet… People sometimes interpret, “I’m in excruciating pain, I’m sorry I have to cancel our plans,” as, “I don’t want to hang out with you.” Or, sometimes, “I have a migraine every single day,” as “That’s utterly impossible, she’s lying.”

X-Wing tattoo close up

A close up of my X-Wing tattoo. The colors are much brighter in person — this is the best I could do with my camera phone.

Professors have refused to give me extensions on papers, even when I have multiple doctors notes and discussed my condition with them at the beginning of the semester. Other professors have told me they will give me an extension on a workshop piece (which goes out to the entire class, not just the professor) only if I agree to letting the professor tell the class my piece is late because of an illness.

In these situations, my X-Wing tattoo equivalent is my paperwork from the Americans with Disabilities Act, which states that my professors must accommodate me. Once they realize I’m not faking or trying to get out of my homework, their entire attitudes toward me change drastically. I understand that many students do fake illnesses, just as some Star Wars fans wish to appear more into it than they are to impress someone. But that doesn’t make me feel any better about the assumption.

On the bright side, my many years of practice as a semi-marginalized Star Wars fan have prepared me beautifully for the challenges of navigating life with an invisible chronic illness. And I’m happy to say that as time has progressed, the disbelief at a hardcore lady Star Wars fan has pretty much vanished. So I have a feeling — call it a premonition from the Force, if you will — that things will only get better for migraine sufferers, too.

Do you have an “X-Wing tattoo equivalent?” Have you ever felt marginalized for something other than your migraines?

 

Miss Migraine: A list of all my problems, in order of their interference with my life

Banner that says "The Adventures of Miss Migraine"

The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine. A version of this post appeared first on August 9, 2012, on my blog of the same name.

On days when I don’t feel quite awful enough to lie on the couch feeling miserable, but too awful to accomplish anything beyond the most basic necessities, I like to make lists. This is one I made today.

A List of All My Problems, In Order of Their Interference With My Life

  1. My head hurts, to a greater or lesser degree, every single moment I am awake.
  2. The medication I take for Problem One prevents me from sleeping well.
  3. I have only one pair of jeans that fit me, and zero pairs of shorts that fit me (and only two pairs of shorts at all). Because of Problems One and Two, plus the fact that girl pants are made for people with stick-thin legs and no butts, shopping is a painful, exhausting, frustrating experience. And I’ve never liked it much anyway. Unless it’s for books.
  4. Sometimes, partially because of Problem One, but also because of Problem Five and general anxiety and insecurity about my place in the world, I feel overwhelmingly depressed.
  5. The book I wrote isn’t published yet, and it makes me feel insecure and depressed sometimes. I’ve been trying to get it published for two years. I know it’s good enough. But believing in myself is hard, when no one else but my closest friends, family, and mentors seem to. (Note from 2018: Never got this book published, and 2018 Kelly thinks this is probably a blessing in disguise.)
  6. Zombies terrify me. Why do zombies have to be so popular? They’re everywhere. I can’t avoid them. They give me nightmares and make me think about a future (or a present) where no one is able to think for herself. Where everyone stumbles around, infecting everyone else with something incurable, something worse than death, something that will finally lead the planet to utter devastation. (Note from 2018: Yeah, this is still 100% true, though it might be worse, because my board game crew freaking loves zombie board games. WHY.)

What are your biggest problems and worst fears?

#FridayReads: My favorite Ursula K. Le Guin novels

Ursula K. Le Guin, whom I’m going to call the greatest writer of all time, passed away on Monday. I don’t usually cry when people I’ve never met died, but I cried when I read that sad news. Le Guin’s work touched me in so many ways—too many to share them all here. But there are three that stand out, and I’ll share those. Share yours in the comments!

1. Catwings

cover for CatwingsMy family wasn’t rich, but one thing I never lacked was reading material. Weekly trips to the library and a plethora of magazine subscriptions kept me in books and stories. We got lots of great magazines: Highlights for Kids, American Girl, some sort of crafty activity magazine, Zoobooks, a few comics. But my absolute favorites were Spider and Cricket, because they published actual short stories.

In one of these two (I can’t remember which one), I read a story called Catwings. I couldn’t get enough of it. Every issue I’d check first to see if there was a new Catwings story. At the time, I had no conception that the author was a famous sci-fi writer named Ursula K. Le Guin. I just knew it was a good story and I cared about the characters. Those little stories about cats who could fly stuck with me. Of course that’s not the only story from my childhood that stuck with me (there’s Narnia, and The BFG, and Leo Lionni’s picture books about mice, and Dr. Seuss, and Big Red, and Nancy Drew, and too many more to name them all), but it’s one that stuck out even among all the others. I remember reading the story “Jane on Her Own” and being scared for Jane, but also exhilarated that she could go have her own adventures, away from her family. If Jane could, then so could I! Years and years later, I stumbled on a Catwings book in a Barnes & Noble and was delighted—though not surprised—to discover Le Guin was the author.

2. The Left Hand of Darkness

cover for The Left Hand of DarknessIn high school I went to every used book sale within a 25-mile radius of my home. At one of these, I picked up a paperback copy of The Left Hand of Darkness for 50 cents. It was an edition from the ’70s, with yellowed pages and a faded cover. I’d heard Le Guin’s name mentioned over and over in sci-fi circles, so I took it upon myself to read it. The summer between high school and college, I read The Left Hand of Darkness, and it changed how I viewed not just the world, but the very concepts of “truth” and storytelling.

As a conservative Christian kid, I had some pretty messed up views on gender. But even then, patriarchal norms chaffed against my sense of independence (thanks, books!) and solid knowledge that I was just as good as any man (thanks, Mom and Dad!). The Left Hand of Darkness confirmed what I already felt: it was all a construct. It didn’t have to be that way. And it was, then, I think, that I began to decide it wouldn’t be that way, not for me. No one was going to tell me what I could or couldn’t accomplish. No one was going to tell me what I was worth. And people have tried—oh, they’ve tried—but fuck them. I’m living the life I want to live, not the life society tells me I should want.

And something else. In the introduction to that edition of the novel, Le Guin wrote a beautiful essay about truth. In it, she writes, “But I am an artist too, and therefore a liar. Distrust everything I say. I am telling the truth.” When I read those words, I understood what it means to tell stories. I understood why stories are so important to me, why I want to read them and write them. I understood that “truth,” too, is its own construct (not to be confused with facts). And that—that’s when I really became a writer.

3. Always Coming Home

cover for Always Coming HomeBy the time I read Always Coming Home I already counted Le Guin as one of my favorite authors. After I read Always Coming Home, she moved right up the list to number one, and I seriously doubt anyone could replace her. I wrote an essay about why this is her greatest book, and you can read it on Monday when it comes out (I’ll try to remember to post a link here when it does). But that essay leaves out the personal impact this book had on me.

Always Coming Home is a fictional anthropological study of an animistic society living in a futurist California that’s been destroyed and reclaimed. This isn’t just a novel—it’s a guidebook for how to live without capitalism, without patriarchy, without hate, without fear. It’s utopia, but utopia that could actually exist if only we weren’t so hell-bent on profits, greed, and destruction.

Reading this book caused me to make real changes in my way of life. It got me thinking about the intersections of the urban world and the natural world. It got me thinking about healing. It got me thinking about spirituality, and what that even meant. It got me thinking about being a whole person. I consider Always Coming Home to be my bible—my guide for living a meaningful, connected, creative life. I don’t follow it slavishly (Le Guin would hate that), but it’s my inspiration. My North Star. It reminds me that all these things—life, creativity, nature, everything—is an ongoing process. The world will keep turning long after I’m gone. I am only a single part in this great ecosystem, but that doesn’t mean I am unimportant. I have something to offer, and so do you. I’ll be happy if my gifts to the world equal half of what Le Guin’s were to me.

Rest in peace, Grandmother.