In April of 2018, I was diagnosed with a rare migraine condition known as New Daily Persistent Headache, or NDPH. The details are vague and, from what I can gather, not fully ironed out. The basics of my condition are as followed: two days before my seventeenth birthday, I was recovering from the common cold and developed a splitting headache that reduced me to a noise-sensitive puddle curled in a dark room, and it has remained this way for fourteen months now. “The brain’s job,” the pediatric neurologists explained to me, circling my brainstem on a diagram, “is to keep on doing what it is already doing. It is quite good at this, it’s what keeps us alive.” With NDPH, the brain recognizes the amount of pain chemicals it is releasing as normal, and thus registers that pain level as the homeostasis it is meant to maintain. This level of pain is referred to amongst NDPH patients as a “baseline.” In my family and amongst those who know of my medical condition, it has become common practice for me to respond with “how are you” with a number. In the beginning, my baseline was a near-constant seven. I spent most of the latter portion of my junior year lying behind a screen in my Marine Biology class, head a fog of migraine medication: naproxen, sumatriptan, naratriptan, prochlorperazine and diphenhydramine. I would register that my body was floating down the halls to my Pre-Calculus course, but I was unable to feel any of my limbs. The only feeling present was the pain. For several months, I was rated by the doctors as having “moderate to severe disability.” And I was angry, God I was so angry. This wasn’t supposed to be my life! I loved poetry and museums, spending nights out late with my friends and getting into trouble, going on long walks around the city. My grades had slipped tremendously, but I was too tired and embarrassed of my condition to tell any of my teachers why; I was too afraid of being seen as faking it for attention. One of my clearest memories of this time is lying on the floor of my bedroom, staring through the dark to the ceiling and thinking “something has got to give.” I could feel the itch to live again in my blood, like static, like the electric impulses in my brain telling itself that it’s fine, it’s okay, everything is happening as it should be. These days are gone now. I’ve learned to be what nurses call “high-functioning” while they pump dihydroergotamine into my veins. Treatment hurts, of course it does, but it’s not as painful as watching your life pass you by, drowning under all that could be if it just had been different. I’m not sure how I identify these days. My disability numbers are still high, but not as high as they were, and my family panics whenever I mention it. I’m in school, I have good grades, I am attending the University of California, Santa Cruz in the fall. I have a part-time job, friends I love, and I learned how to drive at a baseline of five. Life is out there, and I’m very likely to be able to experience it despite my barriers. I’m not sure what the take away of this is for you, if you are reading this. I encourage you to live your life to the fullest. I wish you health, and fulfillment.
Charlotte Pocock, class of 2019