IT HAPPENED TO ME: I Had Brain Surgery at Age 19

I am using my second chance at life to commit myself to feminist causes.
Publish date:
December 7, 2016
activism, surgery, Brain Surgery

Vertigo is the unpleasant sensation of feeling violently drunk when you are quite sober. The room spins, you can’t balance, and there’s a strange feeling in your head. Sometimes it happens very suddenly and without warning, which, unfortunately, is what happened to me on a Tuesday in November of 2013 while sitting in a lecture hall at my university.

Suddenly very clammy, my palms gripped the arm of the desk while the writing on the board slanted sharply down and to the left. My hands shook as I made my way to the restroom, and I spent an hour sitting in a stall after the nausea and spinning had prompted a vicious panic attack.

At age 19, despite having survived the perils of applying and actually being admitted to college, I knew little about the world and even less about myself. I had never questioned my right to exist or that I deserved happiness. I was very introverted and read constantly. As one of my favorite authors, Thomas Hardy, once remarked of a young woman, I was “a mere vessel of emotion untinctured by experience.” But now I was lost in a new reality: I had splitting headaches and tingling in my hands and feet. I knew instinctively that something was wrong with my body.

The path I took to find a remedy started with a school nurse and would end with Stanford’s head neurosurgeon. Along the way, I would become more connected to myself and those around me. By the end, my life would change dramatically.

The school nurse dutifully checked my ears for imbalances, as that is often the cause of vertigo. I did not have such luck: my ears were perfectly healthy.

To further investigate, I needed an MRI. After the scan, the message left on my cellphone said simply, “Ms. Robinson, your scan is free from any tumors. However, there has been an incidental finding.”

I was referred to a neurologist, who referred me to the man who would be my neurosurgeon. At our first appointment, I sat with my dad and the surgeon. He wanted me to have another MRI. I complied. For the second appointment, I brought both of my parents. This time, the surgeon explained to me that I had a rare inherited disorder that caused my skull to squeeze the portion of brain called the cerebellum. It was being funneled into the space reserved for my brain stem, and as a result, my spinal fluid had been forced into a bubble (called a syrinx) in the middle of my neck. This is why I could not feel my hands and feet.

He told me I was suffering from a condition called an Arnold-Chiari malformation.

Fantastically rare, this disorder appears often at the beginning or end of adolescence. Mine had decided to rear its head at age 19, when my college life had blossomed into real friendships, a relationship, and a stable sense of self. For any hope of a full life, I would need to have surgery as soon as possible.

I decided to drop out of school formally after the winter quarter, and I scheduled my surgery for the 31st of March 2014, only four months after my initial symptoms had been revealed. I hid in bed for hours, feeling like a bird trapped in a hurricane. While my classmates were relaxing during spring break in San Diego, I was forcefully reminded of my own right to exist, of my own mortality.

A week after the last appointment with my neurosurgeon, my boyfriend broke up with me, and I suddenly was in a mental place I had never been before. I did not know how to recognize my feelings, so I buried them. I was heavily weighted with sorrow and indignation and betrayal. Increasingly, intense headaches would come whenever my heart rate increased.

A month later, when I packed up my dorm room, my roommate was not there; I was sobbing loudly and I didn’t care, even though the window was open and my classmates were playing frisbee on the lawn. I would be having surgery a week from then. What had I done to deserve this? I had no answer. More than anything, I felt for the first time a real sense of despair, like my choices were being made for me, and fate had decided to do me off early.

The night before surgery was the worst night of my life, with little to compare. Sweating, shivering, crying in the looming face of sharp hospital smells, needles in my arm, painkillers, dreamless sleep.

The next morning at 4 a.m., I woke and dressed and was driven to the surgical wing at Stanford. My last memory was the outline of my parents dimming as I was wheeled away. Surgery was six hours. They opened the back of my head, shaved the first vertebrae down, cut a section of my skull out and put a patch of bovine heart over the new hole in my head. Decompression, they call it. This let my brain breathe and expand, and my surgeon hoped that it would help my spinal fluid begin flowing again.

Healing became my job. For five days immediately following my surgery, I was in intensive care. Those memories are fuzzy. I remember that nurses asked me questions every four hours: What is your name? Your date of birth? Your hometown? I answered them dutifully. I was fortunate. My two inch scar was sewn beautifully and no spinal fluid was leaking.

Slowly, my body began the healing process. I went from an IV of pain meds to physical pills. I drifted in and out of wakefulness. Finally, my mother drove me home with a bag of medication in my lap, pillows on either side of my head. I took muscle relaxers and pain pills every few hours for a month, then I gradually weaned myself off of the vice grip they had on my body. After two months, I was not taking pain pills and I could think clearly for the first time since surgery.

At this point I had time to reflect on my near miss with mortality. I had come through the valley of death and survived. Maybe it was the drugs talking, or just me, but I also felt a connection that I had never felt before. The fact that other people were also suffering was something I was now able to recognize and understand. So I took on the pain of the world. I was driven by the values of my parents: curiosity and continual learning. I read the news, my friends' personal blogs, independent journals. It wasn’t very hard, sitting in bed with pillows piled around me. My brain had been given more room in my head, and now my mind was expanding.

When I finally returned to school eight months after surgery, I was eager to share what I had learned. My new understanding of others' suffering pushed me to reach out to others who felt the same. I joined the sustainability club, the gay-straight alliance, and a budding feminist group. I wasn’t satisfied with my impact, but it felt good to express my thoughts and meet people who felt the same way. At the end of the school year, I applied to lead the feminist club for the next year. I advocated for its funding by writing a detailed paper on the need for discussion about women’s issues, and presenting it to school officials. After consideration, they approved the funding, and I became the leader of Feminists for Justice for the following school year.

Next March will be the four-year anniversary of my surgery. I've learned that scary things can help you, and they almost always reveal a part of yourself you never knew existed; that death is a part of us, and when you get past the fear, it can be a fundamental source of change; that life is so precious, so vibrant, and full of happiness and sadness all the same.

I am using my second chance at life in the best way I know how: I have dedicated my life to the feminist struggle. I find a great deal of comfort in the works of feminists past and present. I am now working with a PR company that bridges the gap between corporations and feminist nonprofits.

Sometimes I wish that I could talk to the scared girl experiencing vertigo in class all those years ago. I would tell her that she would not be broken by her health. Yes, brain surgery would happen, but life will continue. Not once was I ever really alone, because I had friends, family, and plenty of doctors to help me along the way. And it is what happened after the trauma, how I chose to let it shape me and guide me, that always mattered the most.