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

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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 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?

Miss Migraine: Another way of living

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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 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?