I am a generally healthy person.
Meaning – through some luck of the universe, my basic, visible health is pretty ideal. I don’t have any significant diseases, immune deficiencies or abnormal growths – conditions that typically manifest in some physical way.
When I was 14, I remember feeling *excited* when I went to the dermatologist and he told me that the Australia-shaped dark patch on my chest was tinea versicolor. It had a name! I was someone with a condition, albeit easily “treatable” by applying a topical ointment, gone within days, never seen again. I put “treatable” in quotes because that word implies a certain amount of pain or negativity that is taken away. This silly mark on my skin didn’t hurt me at all, didn’t cause me any irritation or struggle. It was just a mark, just something to preventatively check out, and then it was gone. I didn’t realize that sometimes the invisible pains are the ones that affect you the most.
It wasn’t until my senior year of high school that I began getting migraines. I didn’t know that’s what they were when I first started getting them. I thought migraine meant “crazy painful headache,” so when my vision started to blur, my speech slur, my mind scatter – I didn’t recognize what it was. I did feel scared, and very nervous. Having a sense (eyesight) taken away at a moment’s notice is anxiety-inducing, to say the least.
Typically, migraines with aura (or as I call them – eyegraines), last for about half an hour, give or take a bit. For some reason, though, the first time it happened, I remember the visual impairment lasting for days. It’s difficult, now, to remember if that really happened. Part of me thinks I was so scared to admit that I was okay again that I berated my mind into thinking it wasn’t okay yet – that the migraine hadn’t passed.
I went to the doctor shortly after the first instance but struggled to explain the problem. I didn’t have words or context. I didn’t have a bruise, red spot, or track record to show. I just had “My vision got weird and then my head hurt.”
He gave me a list of foods that sometimes trigger migraines, saying perhaps those were the cause. I said thank you, but didn’t feel like I’d learned anything more about what was happening to me – I thought he was talking about debilitating headaches, I was talking about losing my eyesight.
It took years for me to grow accustomed to my migraines, and to accept that that’s what they were. The internet is magic in that way – you’re able to see how many other people experience the same thing, and also how broad the spectrum of symptoms can be.
Sometimes, I’ll be migraine free for months, and think I’m in the clear – cured!
But then one day, out of the blue, I’ll be cooking, or driving, or talking to a friend, and realize – I can’t see their face, I can’t read that street sign, where does the knife end?
And so I drop it all, because that’s all I can do. Turn off the stove and sit down, pull into a parking lot, make an excuse and leave the conversation. Close my eyes and take a deep breath. Push away the anxious voice saying maybe this is it, maybe you’ll never see again. Wait 20, 30, 40 minutes until I blink my eyes open and see the world clearly again.
For the rest of the day, I’ll still feel a bit cloudy, a loose headache rattling around my head like pinball in a machine, only occasionally hitting the sides. I’ll make my unwarranted apologies – “Sorry I couldn’t come into work this morning, I couldn’t drive.” “Sorry I wasn’t paying attention, my mind got fuzzy.” “Sorry I couldn’t speak – my brain and mouth were in different rhythms.”
There are times I wish there was something more tangible to prove the existence of aura – something to show people so it didn’t feel so fake when I try to explain it. I read a theory online that said they may be caused by ripples in your nerves, rolling over your scalp and optic forces like a wave. I imagine what it would be like if that were a literal motion – I could point and say “Look! I’m not making this up! The waves are right there!” And there they would be – small ebbs and flows dancing under my skin, shuffling my face like a Van Gough painting.
But that’s not how it is. It’s invisible and real, like so many other problems. We’ve all got something.
And so, at the end of the day, I do all I can. All I know how to. I try to treat myself a littler kinder, and eventually go to sleep, excited to wake up on a new morning where this doesn’t have to be a part of my day’s narrative.