Sometimes, I mourn things before they’re gone. I plan a funeral in my head for the things I expect to lose in hopes of softening the blow when the funeral march begins.
Over winter break, I was diagnosed with vestibular migraines. I have dealt with chronic migraines for ages, presenting as a splitting headache and light sensitivity with a side of nausea. But these? These were nothing like I’d ever experienced before. I thought migraines had to include a headache, but apparently, they don’t.
Last semester, I began having dizzy spells. “Dizzy” isn’t even the right word to encapsulate the experience; it was more off balance, like one side of me was being dragged into the floor. It was like I was sitting on a bus moving very slowly but actually being perfectly still. I remember walking home from Crossroads and drifting to my left side out of nowhere like an invisible string was pulling me to the side. It made me feel out of control like phantom hands were controlling a marionette doll — except the doll was me, and the hands were my own brain.
I remember having dizziness like this before, but at that time, it was concluded to be an ear infection. I was at home with my mom, and suddenly, it felt like I couldn’t hold myself up properly. I remember weeping on the floor of my bathroom in my mom’s arms and asking: “Who am I without my brain?”
For some context, some patients with lupus develop neurological symptoms. Lupus can attack any organ or bodily system, including the nervous system, which is what I thought was happening to me.
I put so much pressure on myself to excel when I was in high school, taking on countless extracurriculars. The list of clubs and classes I was involved in was extensive. I’ve always had a drive to succeed and a competitive edge to match it. So when I started feeling dizzy, I also started picking out flowers for my brain’s funeral.
It’s hard to balance life with succeeding in school and working toward goals, and in high school, I definitely pushed myself too hard at times. I still do. But thinking, even for a brief moment, that my neurological function was in danger jolted me awake. I realized just how much of my self-worth I placed in the hands of my academic success. I very well could have been dying that day, but I turned to my mom and said, “Who am I without my brain?” We both knew I didn’t mean that literally; I was less concerned about the health implications of an attack on my nervous system and more worried about how that would affect my academic output.
I had no clue who I was without it, and sometimes, I still don’t.
Vestibular migraines cause an off-balance feeling, often with no headache. Nearly two years, two ear, nose and throat visits and one MRI after that moment collapsing on the cold tiles of my bathroom, I had an answer. A nonanswer at that. Few medications help with vestibular migraines, and the two I was suggested could interact poorly with my other medications and ultimately affect my heart. I am now in search of vestibular physical therapy in hopes of remedying my dizzy episodes.
I am also in search of myself: who I am “without my brain,” or more specifically, my academic brain. Extracting the parts of me that aren’t dependent on my academic success has been difficult. Something that has helped the most is my reignited passion for reading. Reading for enjoyment has helped me understand that school is about learning. In all honesty, I got great grades in classes I barely remember. I’ve learned to focus on actually being excited about the material and learning for the sake of learning rather than that coveted 4.0.
Last semester, I took a freshman seminar on Emily Dickinson. You either pass that class or don’t; the professor emphasized that the class was about us and our learning experience. I loved it. Not only did I enjoy the class and begin thinking about majoring in English, but I learned to ease my perfectionism. I learned that it’s OK to say something that other people might disagree with in class, that speaking up and being wrong helps you learn. This class, one that doesn’t count toward my GPA, has honestly been the best for my grades overall.
I want “I Felt a Funeral, in my Brain” tattooed on my body. Because I did. I do. Mourners walking around, lillies decorating a casket full of things I’ve lost. I anticipate loss. An overwhelming sense of despair cascades 0ver my body each time a new symptom pops up.
Dizzy? My brain is going to fail. My hair is falling out? Maybe it’s alopecia — will I lose all of my hair? Spotty vision? Am I losing my sight? And so on.
I felt a funeral that day, cold on my bathroom floor. But I’ve realized that my parents could have held one. For me. On a September day in the emergency room in Boston, I was told it was a miracle I was even conscious — my blood levels dangerously low. Sometimes, I forget I could have died. It’s a hard thing to confront, the fragility of life.
I will continue to mourn things, perhaps prematurely, because this — living — is hard. But I think my funerals are becoming hopeful. Mourning things, knowing I could mourn more, pushes me to savor life. To listen to the birds, watch the wind blowing in the trees, inhale the crisp air in the morning on the way to class and enjoy every single moment I have survived after those days in a hospital bed. To hope.
I felt a funeral in my brain, but hope is the thing with feathers.