Migraine Pose

A fashion magazine reported on a trend in modeling which they called the migraine pose. Instagrammers pose with fingers pressed into temples and tag them #migrainepose. The migraine community was not amused. For many, this fashion trend belittles a very serious and painful condition. It feels insensitive — like starting a trend of shaved heads and calling it #cancerchic.

But as a migraineur myself, I just find it kind of hilarious. And I just want it to go farther. Like — let’s make ice hats and headbands fashionable! Let’s get some shots of us out at fancy restaurants with our thera-band medical ice headbands washing down triptans with iced coffee. (Or in my case, mixing up a delicious dried up old toothpaste flavored packet of Cambia.) Dress me in an evening gown, give me a make over and then let the make up run down my face from the ice melting. Or running from the tears. I want glamour shots with bags of frozen peas. I want gauzy filters over migraineurs tucked into their beds in the dark with only an arty lamp to see them by.

There’s something about making an invisible illness visible that is extremely powerful. I started to think about this when I was struck by a migraine out in public and I tried this portable gel “ice” pack that I found in a Japanese market. It’s this weird sticky cooling thing and I stuck it to the left side of my forehead in the middle of the Starbucks at Barnes and Noble. And suddenly, I was aware that my usually very private experience of suffering had become public. Anyone looking at me could register this odd bandage on my head and know that something was amiss. They probably didn’t know what but it was suddenly clear that something was.

One of the reasons migraineurs have to fight so hard about things like the #migrainepose is that strange contradictory stigma of not looking sick, of being seen as having “just a headache” when, in fact, migraine is a much more comprehensive neurological disorder. (Major media campaign is “It’s not just a headache!”) So I’m thinking it might be time to start walking out in public with my ice hats. Of course, if it’s a really bad migraine, there’s not even a chance of my going anywhere. Those #migraineposes will be in bed, with a puke bucket nearby. (Luckily, this is rare for me if I have access to good medication.)

I felt a bit embarrassed walking around with my weird gel pack stuck to my forehead and yet also suddenly accurate. My outside was accurately reflecting what was happening inside.

It reminded me of what happens when I walk around with my guitar strapped to my back. People look at me with more interest. I become more visible and I always feel funny about it, like, I want to dismiss their interest, say to them, “If you’re thinking I’m cool because I’m carrying this guitar, that’s very silly” but I also understand that people’s perceptions of me are more accurate in those moments. I am always a person who plays guitar, even when I’m not carrying it around. Sometimes that outward expression matches my inward self. (Whether or not that makes me cool is a whole other question. I mean, I am. My dentist thinks so anyway. But.) Likewise, when I walked around with a gel pack stuck to my head, suddenly my outward expression reflected an actual real lived experience.

Culturally, we want everyone to be okay all the time. We ask people how they are, expecting them to say fine. The cultural norm is to be disturbed by anyone with a diverging experience — an injury, a disability, an illness. I feel my own pressure to be appear to be fine even when I’m in pain. But no one is okay all of the time. And finding ways to include the range of people’s experiences — particularly those who are suffering or have disabilities — will create a more compassionate society. Disability activists are leading the way here. (Read this amazing article about wild disability justice dreams.)

It begins with making the invisible visible. For those with invisible illnesses or disabilities, that means finding ways to make them visible. For people with disabilities or illnesses that are harder to ignore, we need to start seeing the things that surround those experiences. We need to see the extra time it takes to get somewhere without appropriate accessible transportation. We need to see what happens when someone who needs access to plastic straws loses that access. And we need to seek this knowledge out, instead of expecting to be educated or convinced of that need by those who are already overextended.

For example, I knew that the NYC subways are a disaster in terms of their accessibility. It is a great blight on our city. The newly remodeled train station near me now features many flashing screens but still has no elevator. It’s happening all over New York — brand new flashy subway stations that are still not accessible. Anyway — that’s a side note. What I’m saying is, I knew the subways were bad in this area but even so, Zach Anner’s video about trying to get a rainbow bagel made me understand much more fully what that lack of access really means to someone in a wheelchair. And it’s so much worse than I thought. Visibility is key, I think.

But also invisibility. Like, if you’re not seeing folks with wheelchairs or other mobility aids at your job, it’s probably likely that there are accessibility issues in your workplace. Looking at who is missing is as important (if not more so) than looking at who is there and we all need to get better at inviting the people who are missing.

And if I’m wearing an ice pack, I showed up with a migraine — maybe give me a (gentle) high five because I showed up and it wasn’t easy. But odds are pretty good that I could have a mild migraine and never mention it. So…you know…sometimes I’ll show off my migraine pose and sometimes I won’t. Also, if someone could invent a more portable ice hat situation, one that could get multiple uses without me having to lug around a melted ice hat, I’d be super excited about that. Then, I’d be migraine posing all over the place.

Mmm. Won’t this delicious looking water be even tastier once I’ve mixed in that chalky minty powder?!

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Originally published at artiststruggle.wordpress.com on July 28, 2018.

Theatre Artist, writer, blogger, podcaster, singer, dreamer, hoper