There's No Light Like No Light

I've clicked my heels three times, so why is the sun still shining?

Our puppy, Sunshine, in migraine mode. (She will be the feature of my next post!)

Ask my older sister and she’ll tell you, I’ve never been much of a shopper. So when my husband Cory and I had a few minutes to kill while on a vacation in Hawai’i last year, we browsed the souvenir shops halfheartedly, each of us waiting for the other person to drop so we could finally go for our daily infusion of shave ice. But that day, we both got lucky. Cory decided to buy a mug shaped like a whale, to use as a succulent pot, and in the exact same shop, I found a baseball hat with a chicken on it.

The few of you who have seen me in person can attest to the fact that baseball hats are my thing. I wear them every day that I’m away from home, both indoors and out. As a result, I can list many close friends who have never seen me not wearing a baseball hat. 

I didn’t own a single baseball hat before getting migraines. After getting them, one of the first things I noticed, other than the debilitating pain, was that I was constantly squinting. All ceiling lights were suddenly too bright, and the sun reflecting off of rain puddles was even worse. So, the fact that it took me a full year to consider solutions to this problem says a lot about how overwhelming the beginning stages of chronic illness are. 

The literal light bulb moment came when I was standing in the Joshua Tree National Park gift shop after a full day of walking around in the sun, grumbling about the bright light bulbs in the shop. As luck would have it, I happened to be grumbling next to a rack of hats. 

Photophobia, or light sensitivity, remains my greatest day-to-day struggle as a chronic migraine sufferer. Though “sensitivity” is far too flimsy of a word, in my opinion. Saying I’m light “sensitive” is like saying a can of gasoline is sensitive to a match, that bacteria is sensitive to penicillin, or that my nose is sensitive to my dog’s farts after she eats too many fish-flavored treats.

What I’m trying to say is that photophobia is a heck of a lot more than an inconvenience—it’s more like an electric barbed wire fence wrapped around my entire world. There is no good time of day for a photophobe, because humans are downright obsessed with light. For starters, there’s this big ball of light that everyone positively gawks over. “What a gorgeous day!” “Isn’t it beautiful?” “We should really go outside!” Going outside, for me, requires not only a baseball hat but also wrap-around sunglasses that make me look like a space invader. I don’t like walking much before or after noon, because then the sun is too low and sneaks through the edges of my sunglasses. I also don’t like walking on the beach, or on wet sidewalks, or near cars. The reflection off a Tesla roof is enough to send me scrambling for home. Thanks, Elon.

Nighttime is, oddly, even harder. This is because during the night, instead of one bright light that traverses a predictable path across the sky, there are lights on buildings, lights on sidewalks, lights on heads and bikes and cars and buses and trains and planes. Some of these lights are even motion-activated, which I think should be illegal because they’re a form of false advertising. But car headlights are the worst, hands down. Whoever designed sports cars in particular seems to have missed the memo on headlights being for seeing the road, not blinding everyone within a ten-mile radius.¹

I recently traveled to New York without Cory, for my MFA program. Traveling alone isn’t something I do very often, meaning Cory isn’t often alone at home. His favorite thing to do when living as a bachelor? Turn on all of the lights! Because other than giving me a low-grade distaste for every waking moment, photophobia has also made me into an anti-social, unadventurous mole person. When invited to a friend’s house for the first time, I tend to interrogate them about their ceiling lights beforehand. I’ve even requested photos, because anybody with ultra-bright track lighting is no friend of mine. It’s best to cut those relationships off sooner rather than later. But when I don’t have such foreknowledge, social invitations must be weighed against my patience for unknown lighting situations. Will there be spotlights in this art gallery? Fluorescents at the restaurant? A disco ball in the church? (As unlikely as this may seem, I’ve been in not one but THREE churches with operational disco balls.)  Is this the sort of thing where I could bring my own lamp, or would such an action be frowned upon? And what about those people who can’t be trusted with phone flashlights, will any of them be there? You know the ones, they have lazy thumbs and are all too prone to accidentally turning on their little iPhone death rays when trying to pull up videos of potty-trained cats. It is impossible to prepare for every scenario, impossible to guarantee soft, steady lighting everywhere I go. Decisions must be made and social calendars, curtailed.

The only place that’s 100% safe is home, aka The Haunted Mansion. I call it that because it’s usually (whenever I’m around) quite dark in our house and because all the lights can turn bright green, like the color you’d get if you mixed frog toes with lizard tails. Cory set it up that way. For warm white, you flip the light switch on once. For green, you flip it off then quickly back on again. We have the green light option because, for reasons that scientists have yet to put in layman’s terms, green is the best color of light for migraine sufferers such as myself. Your skepticism at this statement is understandable, because we all know red light is best for night vision and the like. But, having a wealth of firsthand experience with chronic migraines, I can personally attest to the fact that when it comes to artificial light, green feels better than red and way better than white. (As limited proof of my claim, note that there are actually green light products marketed to migraineurs.)

But in the end, there’s no light like no light. That’s my motto. On that note, use our dishes at your own risk. They were washed in the dark. 

I wore the same Joshua Tree National Park hat for months and months before eventually deciding to expand my collection of long-brimmed headgear. By that point, I’d discovered the myriad advantages to having baseball hats as a personal trademark. You never need to do much with your hair, for starters. Hats can also make you look either easily recognizable or totally standoffish, according to your preferences. If I want someone to be able to find me in a crowd at the airport, for example, I wear a quirky, one-of-a-kind hat. (While the chicken hat is my current favorite, I also have a dog hat, a cactus hat, a tie-dye hat, a Highway One hat, and a hat I designed myself with a migraine emoji on it.) But if I want no one to talk to me at a networking mixer, nothing says “buzz off” better than a black hat tilted down over the eyes.

There’s also, of course, the fashion mystery factor. A few years ago, when first learning to write, I discovered a famous writer with a similarly notable fashion quirk. Joan Didion, a hugely successful journalist and essayist, was known for wearing sunglasses everywhere she went, including indoors. In her memoir The Year of Magical Thinking, she even talks about wearing sunglasses for the ENTIRETY of her wedding day. But she doesn’t ever, in any of her work, come out and say why. In an essay about her fashion choices, Didion makes a passing mention of sunglasses, and in one of her more famous essays, “In Bed,” she talks about her frequent migraines. (Thousands of people have asked me if I’ve ever read this essay, thinking that they have, by reading this two-pager, uncovered something I’ll find groundbreaking.) But neither essay actually explains her affinity for tinted eyewear.

Was Didion a glamorous fashionista, a photophobe, or just weird? She’s dead now, so we’ll never know for sure. One thing we do know is that Didion’s trademark dark glasses made her look mysterious, this sense of mystery made her iconic, and her iconic persona only added to her fame. As for me, nothing says mysterious and likely famous writer like a red baseball hat with a yellow chicken on it. Don’t you think?

There is, however, one downside to wearing hats, which you should be aware of before adopting the Natalie Mead look. If you have a rather impressionable forehead, as I do from far too many Botox treatments, you need to wear hats all of the time, to cover the big, ugly indent on your forehead from whatever hat you most recently wore. 

It’s a vicious, vicious cycle. 🧠

📣 📣 Announcements 📣 📣

👶 Our family is growing! Welcome to the 44 new Brainees who have joined us over the past month. Please say hello and introduce yourself in the comments, or send a DM!

🧢 Jealous of my migraine emoji hat? I thought you would be. You can buy your own here.

🎧 You can now find essay voiceovers on Spotify and Apple Podcasts. And my new mic is up and running so it even sounds nice!

🐌 Did you know that paid subscribers are eligible to receive essay posts on real paper in the mail?! Upgrade to paid for $3.50/month or $15/year by clicking here. If you’re a photosensitive person, email oopsmybrain@substack.com for your free upgraded subscription.

1. There is a foundation circulating a petition to ban ultra-bright headlights. Though it’s unclear if signing it will actually accomplish anything, you might as well?