As a kid, whenever I felt bored in church, I passed the time by staring: watching the flashing emerald lights in my vision shimmer. I didn’t find this sight unusual, nor was I surprised by the ever-present ache in my head. Having nothing to compare my experiences to, I figured that heads just hurt and that you could make your vision glitter by staring the right way. The word migraine meant nothing to me.
When I was a teenager, I finally got a label for the pain: chronic migraine syndrome. Meaning, in my particular case, that my head hurts 24/7. The pain ranges from barely noticeable to literally paralyzing. And it’s accompanied by the shimmering that fascinated me as a kid, which I now recognize as a migraine aura.
The fact that a child was in chronic pain often stunned the adults in my life. Some accused me of exaggerating, while many seemed heartbroken or baffled. Once, I asked a store clerk for help finding earplugs to block out noises that worsened my migraines. Confused, she stared at me and said, “But you’re too young for that kind of pain.” She stated it so simply, like chronic pain was a rollercoaster you had to be a certain height to enter. I remember longing to explain my pain to her, to tell her that not only was it real, but that it was as much a part of me as the breath in my lungs. But I didn’t know how to explain something so foreign to her, so I stayed quiet.
At twenty-four years old, I’m finally reaching an age where others no longer find my pain unfathomable. Yet, I sometimes still feel misunderstood. Young as I am, I’ve been in pain for over twenty years. The sheer weariness of hurting for that long weighs on my body and my mind. There aren’t a lot of people who know what that’s like, and it gets lonely sometimes.
Still, there are moments when my migraine aura makes the world shimmer like fairy dust. Moments when I remember that, as much as I was the kid who grew up in pain, I also grew up watching the world glitter. And then I think of the store clerk, and the others like her, and I wish I could help them understand all of it: the beauty and the pain. But I still can’t find the words.
Rosholt, South Dakota