It’s no wonder why I turned out to be an overachiever — it would be hard not to be with my parents. My mom is a type-A super planner, she never skips a beat and never backs down. My dad is an outspoken advocate, you can always count on him to stand up for what he believes in. I’m some sort of conglomeration of the two. I’m a meticulous planner, my to-do lists and schedules are always updated and shipshape, and I ask questions in class and will always participate in discussions — all traits that have gotten me really far in a college setting. However, there’s always a dark cloud looming over, with thunder and lightning ready to strike at any second: my chronic hemiplegic migraines, which I’ve suffered from since I was 9-years-old.
Isn’t migraine just a bad headache, you may ask? Well, yes. However, what many people don’t realize about chronic migraines is that they are debilitating. When I have a migraine, I can’t move without feeling like I’m going to throw up. My head hurts so bad that, sometimes, I can’t sleep, even though I would do pretty much anything to escape the pain. With my hemiplegic migraine, I also get a phenomenon called “aura” which leaves me partially blind. It can even include numbness and paralysis in one side of my body and the inability to speak. All of these symptoms leave me absolutely exhausted, my brain seeking any sort of respite from the cataclysmic disturbances that often leave me bed-ridden for hours, or even days, at a time.
The first time I got one of these migraines, I was in fourth grade. It was my best friend’s birthday, and I wanted to stay and eat the cupcakes that she brought, but I knew I felt sick. After a while of ignoring the partial blindness (which sounds insane looking back, but I really wanted a cupcake) I finally headed down to the nurse’s office, where my parents came and picked me up. Within half an hour, I could no longer speak anything but gibberish, and my right arm was completely numb. Naturally, my parents rushed me to the emergency room, where I was flown in a helicopter from my small town to the Children’s Hospital on the other side of the Continental Divide. They thought I was having a stroke, at 9-years-old.
Nope — just a really freaking awful headache. It wouldn’t actually be diagnosed until much later. I was discharged with the diagnosis of a concussion, with zero clue as to what might have caused it. It wasn’t until later, that a neurologist deemed my headache a migraine, and I was informed that I may have to deal with it for the rest of my life.
I think that was one of the most pivotal moments in my life. I remember so many things from that period of time as clear as day because it began a shift from the carefree nerdy kid who worked harder than she needed to, to the paranoid overachiever always expecting to be cut off by searing pain and disability.
I was suddenly very aware of my physicality. I was constantly checking my vision, staring down at my hands to make sure I could see all ten fingers and staring at words until my eyes ached. I had a few more major migraine instances, but the real cluster headaches started once I got to middle school.
Suddenly, the question of what caused my migraines shifted to what didn’t cause my migraines. Menstruation, anxiety, low-blood sugar, lack of sleep, certain foods, dehydration, and even the weather can play a part in how my head feels. Since middle school, I feel like I’ve been on an ever-changing cocktail of medications and health rituals, just trying to get through the week.
Naturally, my attendance started to suffer, which led my grades to suffer. I’ve thrived on academic validation my entire life, and all of the sudden, I couldn’t get that same verification anymore. I think this was the beginning of feeling genuinely angry at my body — at the limits it imposed on me and my lack of control over my own abilities.
I remember being in class, and my vision would go, a sure sign of a migraine. I would get so frustrated to miss another day of content, another day that would get me a better grade on the test, that I would burst into tears on the way to the nurse’s office. I would then go home and stare at the ceiling, cursing my body for putting me into this bedridden, helpless state. Then, over the weekend, I would have to make up for the things I missed — my life was a cycle of headache, bed, homework, repeat, and I hated it.
Funnily enough, COVID actually did a lot for me. All the time we were forced to spend alone allowed me to learn what I could and couldn’t do, forced me to reckon with what my head could handle. I got a relative grip on it, and my attendance was much better the year following, thank goodness, or I might’ve not gotten into college, which was a lifelong dream of mine.
I have a very specific memory of one of my best friends coyly accusing me of having “migraines” just so I could just stay home and watch TikTok all day. I remember feeling so frustrated and heartbroken — even my best friend had absolutely zero understanding of what my life with this condition was like, and it made me feel all the more isolated. It wasn’t until I got a migraine on the night of my senior prom that I think she finally began to realize the severity of it. Why would I fake the nausea, a reliance on medicine, and constant steadying from my boyfriend, on one of the most memorable nights of my life? (Yes, I did go to prom anyway,very medicated, but I was still present!)
College presented a different array of symptoms. While I finally got the aura under control and very rarely have partial blindness or paralysis any more, my freshman year of college was when I started to have barometric pressure-related migraines. This means that every time the wind blows harder than normal, or we have a sudden, Colorado-classic mid-week snowstorm, I have a searing headache that makes me basically useless for any conversation or engagement. And as a very involved student, that always feels like a disaster.
It’s so difficult for me not to be angry with my body — when I forget to hydrate on a night out with friends and can’t think straight the next day, or when I don’t have time for breakfast before class and subsequently spend the rest of the day nursing a pounding headache because my blood sugar got too low. I have certain rituals that seem so strange to those around me, but I know I need to do them or I’ll cease to function.
But the worst headaches are the ones that are completely out of my control. I want to curse and cry and break something when I wake up with a hot rod behind my eyes on exam day. I feel like a total disappointment when I want to socialize with my friends or classmates or professors, but my head hurts so much that just talking will make me throw up. I have so many aspirations, and yet, there are times when my body just forces me to let them pass me by.
Ultimately, it’s a balancing act. I know I’m hyper aware of my physicality — I always pay attention to how hot it is, how dry it is, if my stomach is full, if my hand feels numb or tingly, if I had protein with breakfast this morning. And, in a lot of ways, that’s a strength.I know a lot about myself, and I know a lot of my limits.
The challenge is not getting into my head, not over analyzing any unpleasant sensation I have, or internally punishing myself when I have to take a nap, or when I buy a gross stick of beef jerky just to bring my blood sugar back up. In the 11 years of managing a chronic condition that directly interferes with my overachiever need for control, I’ve learned so many lessons — and still, I have so many more that I will need to face head-on.