Christmas lights blink on and off, on and off, sparkling and winking merrily in tune with the Carol of the Bells.

Ding, dong, ding, dong.

Sharp pine scent underlaced with cinnamon and cloves. Winter and snowflaked pine branches and holly jolly.

Multi-colored spots blink in my eyes as if someone has taken my photograph. Splotchy rainbow after-images stick to my closed eyelids. They won’t go away and they grow and grow, zigzags over my vision.

I can’t see.

What is happening?

Aura, then pain;

My first migraine.

Classical, they say.

Christmas is here.

Merry, merry, merry migraines.

They are my lifelong gift this year.

#

Trips and vacations. Dehydration, elevation.

Chocolate-frosted triple chocolate cake. Espresso, cappuccino, coffee, coca-cola. Sharp cheddar as strong as some emotions.

Stress, sleep, sounds, smells and sometimes nothing at all. I can only control so much.

Blinking lights, bike lights, Christmas lights, flashing lights, fluorescent lights, headlights.

They are bright as the sun, glaring in my eyes, harsh and burning, lights, lights, lights.

Colleagues, teachers, doctors, friends, no one seems to understand my life against the light.

Everywhere I go, I can’t escape it. Light follows me like a backward shadow, bright, searing, glaring in my eyes, filling up my reservoir until it overflows. Flooded, my brain says no.

Stop.

And I do. I have no choice.

#

A low hum in one ear like a sudden rush of water. The world tilts and shakes, side-to-side, side-to-side. I’ve felt an earthquake and it is not this. This is inside my body but it is not right, it is all wrong.

Dizzy, nauseous, I try to sit on the floor as the world spins and twirls. Numbness in my arm, my leg. The left side of my body is weak; it feels detached, it does not respond. Is it still part of me?

What is happening?

Stroke, seizure?

Go to the hospital.

Am I dying?

Wires and IVs and ECGs later, they say hemiplegic.

You’re fine, they say. It’s just another type of migraine.

But I don’t feel fine.

#

It is just not a migraine, it is never just a migraine. It is not just a headache. It is not one-size-fits-all.

It is a poorly understood neurological condition. It is whole body fatigue down to every cell of my being, aura, blurred vision, perpetual photophobia, allodynia, vision loss, brain fog, nausea, dizziness, aphasia, numbness. It’s missing out and feeling useless, disconnected, alone, misunderstood and anxious for the next attack. It’s an everyday balancing act doing my best for myself knowing I might still lose even if I stay within my carefully concocted limits on my known triggers and try to avoid all the things I can’t control. Some days, I want to crawl into a cave and bury myself deep. I wish I could make other people understand, to wipe away the tilted head and arched brow they give me when I tell them how much pain I am in. How these things affect me every day.

Inevitably, they always say the same things— well, what are your triggers? Like it’s somehow my fault despite all my efforts. Just wear sunglasses. Drink more water, have a coffee, take a painkiller, meditate, get a message, do yoga, etc., etc., etc.

If only it were that simple. I’ve heard it all before and it doesn’t help. It only makes me feel more alone, more isolated. Do the doctors and family members, bosses and friends know the harm their unsolicited advice causes? Do they care enough to try to understand?

How can they understand if I don’t share what it’s like? Give me a chance to explain my twenty years of experience and listen, really listen. Then ask me, “How can I help? What do you need?” Be on my team and support me because lying in a dark room alone, it often feels like I am on a team all on my own.

Erin Darrow (she/her) is migratory by nature and currently lives in the Pacific Northwest where she writes speculative fiction and creative nonfiction. Much of her writing is inspired by the natural world where she enjoys hiking, photography, watching birds, and finding peace. She aspires to live in a cozy tree cavity someday, but if she can’t become a small bird, any house in the woods will do just fine, too.