Every time time I sit down to write, my head throbs like I have metal bands contracting around my skull. My eyes ache from the constant light, and I keep catching myself staring unfocused off into the distance just for some relief. Sometimes I can get through the back door, so to speak, and handwrite drafts. But mostly, I peer into the blank void, wishing my body didn’t keep me from doing one of the things I love most.
When people ask me what my migraines are like, I find myself trying to explain how I actually have three different kinds of migraines that each take glee in brandishing their own brand of terrible. It starts with my neck-based migraine, and then there’s the one clawing at my brain from behind my eyes. But sometimes a pressure headache gets tangled in the mix, creating the Megazord of migraines.
I don’t remember a time when I didn’t live with headaches and migraines. Early on, I struggled to read for any length of time, and when I tried to read my first children’s novel, I kept pushing through the feeling that I wanted to throw up all over the book in my hands. Like I’ve mentioned over on Book Riot, my mom introduced me to audiobooks, buying both my brother and me cassette players and children’s radio shows on tape. This opened up whole new worlds for me, giving me the chance to experience stories whenever I wanted, just like everyone else could with print books.
At eleven, I joined my brother as a patient of one of the best pediatric neurologists in the country. Every three months we’d arrive, I’d be rude and snarky, rolling my eyes at his insistence that my migraines “should” work a certain way. My body language rippled with annoyance at how the doctor treated my family like we were ignorant hillbillies, like even our migraines remained uncivilized and obstinate, refusing to cower at his prescribed medication.
After seeing the doctor, we’d head down to get my blood drawn to make sure the meds I was taking didn’t cause one of my organs to start failing. As we walked back through the halls of the Cincinnati Children’s Hospital, I’d see other waiting areas. Some had a gaggle of children playing with toys while their parents made small talk. Other waiting areas possessed a strange stillness, deeply quiet as kids with head scarves and oxygen tanks sat in wheelchairs waiting to go back.
When I’d see the kids from the different wards, I’d remind myself that I had nothing to complain about. At least I got to go home. At that age, I still thought of things in black in white. I didn’t understand that illness and disability exist in a range of forms, and people like me with chronic non-fatal conditions also deserved accommodation and support.
As a kid, I rarely talked about my chronic daily headaches and migraines. Though I didn’t know how to articulate it, I somehow picked up early on that other kids simply didn’t want to hear about it. Adults though, they could be the worst. One year at summer camp, I remember standing in line for my medication at the nurse’s office.
A counselor went in and pointed to my overflowing brown paper bag and said, “Wow, this is a lot! Do they actually need all of this?”
The nurse shrugged and said, “Probably not.”
I got these questions a lot, but for whatever reason, this time I was so embarrassed. But then I felt incredibly angry. When it was my turn, I very dramatically looked at the counselor who’d asked the question and pointed to my bag and said, “That’s mine.”
I’ve gotta give it to her, junior high Kendra was hella awkward but she had one bold set of ovaries.
Looking back, I can see how migraines dictated so much of my life. I could read print only some of the time, hats made my head throb, and I hated bright lights. I’d walk all over the church building where my parents worked, perfectly happy in the dark. I’d navigate my way around a cool, dark room rather than turning on the lights, feeling for the cold metal of the fold up chairs while running my other hand along the room’s brick wall.
At the time, I thought my struggle to do everyday things was because I was a frumpy, unlikable person who didn’t deserve friends. Around other girls my age, finding the words I wanted to say felt impossible as I sat awkwardly trying to remember the vocabulary I needed, often repeating the same words or phrases because I couldn’t find anything else. Teenagers, being some of the cruelest creatures on the planet, made fun of the way I spoke and the things I said. I hated myself for it more than they did.
Aside from family genetics, the specialist never figured out why my brother and I have such severe migraines. He did the doctor equivalent of throwing his hands into the air and waited until we aged out of pediatrics. I wanted to forget too. After surviving junior and high school, I left everything behind when I went to college, pretending that younger version of me never existed.
For five years, my migraines weren’t terrible. I finished college and got accepted to grad school, making big plans for the future. But my migraines returned with a vengeance, forcing me to accept that this would always be my normal. This time, however, I found a community of chronically ill people who also have migraines. We share tips and tricks, experimenting and reporting back, and commiserate as we sit alone in the dark by the toilet, feeling just little less alone.
Back in 2017, I started talking openly about my migraines for the first time. I remember sitting tense and uncomfortable in front of my iPhone. I’d outlined what I wanted to say but had no idea how people would react. Would they believe me? Would they make fun of they way I talked? Would some couch diagnostician proclaim that hempseed oil pressed during a full moon on a midwinter’s day would absolutely 100% cure me of my affliction?
But when I posted the video to my YouTube channel, 99% of the commenters wanted to show their support. As I scrolled through and read their offerings of solidarity, I teared up without realizing it. I had no idea how many people experience headaches and migraines like I do.
I’m still unlearning some the skills that helped me survive a chronically ill childhood. I remind myself that things are different now, that I’m different now. My friends and family show me their love and support every day. I don’t need so many prickles. It’s still hard to tell people what’s actually behind the author bio or profile picture. But I’ve made little steps. I’ll take it.
Things I Made Recently
“10 Pacific Islander and Pasifika Authors You Should Know About”
Disappointingly, many Asian American and Pacific Islander Heritage Month TBRs and book stacks this year didn’t actually include any books by Pacific Islanders. So here’s a list of ten authors folks should definitely check out.
Book Riot’s Audiobooks Newsletter
I write Book Riot’s weekly audiobooks newsletter. You can subscribe here to read all about my favorite listens of the week, and you can read back issues here.
What I’ve Been Listening To This Week
Appodlachia - Ep. #132: Fat B*tches in the Fattest State
New Appodlachia co-host Callie Pruett talks to Dr. Angie Luvara about what it’s like growing up fat in Appalachia and what her experience represents for the region.
Libro.fm Podcast - Ep. #1 - Meet the Founders
Libro.fm, the indie audiobook company, started a podcast! I’ve been looking for more audiobook podcasts, so I look forward to listening.
Links All the Way Down
“A Little Life Is Not Your Father: Y’all Is Hanya-Pilled” by Brandon Taylor
A brilliant piece that delves into the field of gay literature, who writes it, and why it matters.
“Prepping for #1000WordsOfSummer 2022” by Jami Attenberg
For the first time, I’m jumping on a writing project! If you want to join, check out the link for more info.
Great to hear more about your story. Thank you for sharing the reality of what we live with and the judgment/misunderstanding and complete lack of awareness that we face from others - including and sometimes what feels like, especially healthcare professionals x