Miss Migraine: If you visit the Brandywine River Museum

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The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine. This post appeared first on my blog of the same name on August 15, 2012.

If you plan a trip to the Brandywine River Museum in Chadd’s Ford, Pennsylvania, and you suffer from chronic migraines, do not eat a red velvet cupcake with butter cream icing for breakfast, even if your best friend bought it for you from the Bakers at Buffington in Downingtown, Pennsylvania, even though you love your friend and red velvet is  your favorite cake.

Especially do not eat a red velvet cupcake for breakfast with 16 ounces of Ethiopian blend coffee cut with just enough half and half to turn it from a pleasant brown-black to a pleasant dark tan, even if the coffee is from Wawa and your devotion to your favorite convenience store — which is unavailable in the place you currently live — is fierce and strongly nostalgic.

Brandywine River Museum

Photo credit: Brandywine River Museum

When, upon approaching a red light and flicking on your left turn signal, a flare goes off in the left side of your head, do take a Maxalt pill, even if it means taking it with coffee. The flare, though brief, is a warning sign of things to come, and you should know better.

At the museum, which is filled with the works of famous local artists, specifically those of the Wyeth family, avoid the 40-something man dressed in the carefully styled careless way of art history professors who leads a group of other men, dressed less carefully and more casually, though the exhibit of paintings and sketches done by famous local artists on their vacations in places like Delaware, Maine, Italy, Germany, and Holland, while he explicates loudly on each painting’s deeper meaning.

When, upon nearing the end of this gallery, another flare goes off in the left side of your head, do take a Maxalt pill, as you’ve been smart enough to put one in your wallet although you’ve left your purse in the car, because you don’t want to carry it. The water fountain is located right beyond the gallery you’ve just existed, past the bronze sculptures of three happy pigs in a wallow and a naked woman braiding her hair, and you should know better than to wait.

If it suddenly seems that the security guard has started to follow you and your friend, you may assume that he is doing so because the two of you are the youngest patrons by at least two decades, and your friend is the only person of color. Other possible explanations include multiple middle-aged white male security guards with salt and pepper hair and graying goatees, each wearing his uniform shirt with the sleeves rolled halfway up his forearm. This will not directly affect the pain growing in your head, but it will greatly annoy you, as you would like to contemplate Andrew Wyeth‘s painting of a skull by a window without feeling the scrutiny of someone who might assume you either have to be here for a school assignment (you don’t) or will show bad manners and try to touch the paintings (you would never).

Because you did not take the Maxalt pill when you should have, your vision will blur in the middle of the N.C. Wyeth gallery. By the time you leave the museum, driving will be a chore. You will slow down at green lights and forget to start again when you stop at stop signs. You will take a second Maxalt pill two hours after the first one, and you will lay down with your dog for awhile, but it will not lessen the pain or the vague feelings of nausea. You will be forced to cancel plans with your other best friend whom you see only rarely, because you know that driving at night is unsafe when your eyes make it appear that shadows have substance and are jumping out at you.

But you will continue thinking about Andrew Wyeth’s painting of the skull by the window, how it faces away from the window, almost as if it has turned from the beautiful view beyond because it was too painful, because it was unreachable.

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: Couch days — When migraines try to get the best of me

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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 7, 2012, on my blog of the same name.

Yesterday, after floundering around most of the day and accomplishing little, I sent my husband a text message to warn him that I felt restless, unfocused, depressed, tired, and totally zoned out.

By that point I had given up trying to tackle any of my freelance work or the short story I’m working on. My vision had blurred slightly, and the entire left side of my head was lighting up every couple of seconds like a beacon on top of cell phone tower: fade in, fade out, fade in, fade out.

I took a book and a pen down to the couch with me, but as soon as my head sunk into the suede pillow I knew I couldn’t tackle David Foster Wallace just then. My corgi came over and gave me her “Don’t be sad, Mom” look and rolled over so I could pet her belly.

That gave me an idea about cheering myself up. I pulled up YouTube on my phone and found plenty of videos of cute corgi puppies and German shepherd dogs. And they did make me laugh and feel better–for awhile.

It IS a comfortable couch, but I don’t want to live on it.

The moment I stopped watching puppies on unsteady feet stumble around and bark at ice cubes, the overwhelming feelings of depression returned. I felt useless; I hadn’t even been able to pick up my migraine prescriptions from the pharmacy, let alone make a much-needed trip to the grocery store. So I dreaded my husband coming home from work, even though I knew he would gladly do those things and anything else he could to make me feel better.

When he did come home, he told me (for the second time in as many days) to stop being silly and worrying about him getting mad or frustrated with me. With him sitting next to me on the couch, I drifted to sleep. When I woke up, the pain hadn’t gone anywhere, and neither had the depression.

My husband was setting out for the grocery store, and laying on the couch in the dark for the rest of the evening, wallowing in misery, didn’t seem very appealing. So instead of getting more depressed, I recognized that it was only the migraine talking, made myself a cup of green tea and sat down in front of the computer, determined to make something–however little–of the rest of my day.

I managed to do an hour of freelance work before the computer screen began to wear on me and I had to switch to something else, but an hour is an hour, and I’m proud of it. Because some days, it feels impossible to even exist. It’s hard to focus, hard to think, hard to move.

But I have goals that I want to accomplish: finish graduate school; find a publisher for all the books I have written, am writing, and will write; run an awesome blog; continue my small, independent literary press; and contribute to my communities through advocacy and volunteer work. Migraines aren’t going to stop me from doing those things, even if they limit what I can do in one day, week, or month.

It sometimes feels like migraines run my life, but they don’t. I run my life. Migraines are only an intrusion, a setback, an obstacle to overcome. So today, now that I’m feeling better, I’m going to sketch a representation of that fact and hang it by my desk to remind myself of that every day. I’ll share it with you all this Saturday.

How do you overcome the depression and feelings of hopelessness brought on by a migraine attack?