My tumor’s name was Jim.
I was 15 when the MRI found Jim hiding in the left frontal lobe of my brain. Jim was evicted four years later, during the summer before my sophomore year at the University of Florida.
Jim, a low-grade astrocytoma, had grown the year prior. But when my neurosurgeon, Dr. Wolf, told me I needed surgery, I protested. After all, Jim was non-cancerous, and I wasn’t ready for my skull to be cracked open.
“Isn’t my tumor benign?” I asked.
“Benign,” Dr. Wolf emphasized with air quotes. He explained that the longer I waited, the more dangerous the surgery and the more likely I was to suffer symptoms like seizures.
So, at 19, I had brain surgery.
I was conscious so my brain activity could be monitored in real-time: I talked to doctors about football (and how much I had to pee) while wiggling my fingers and toes. Worst 100 or so minutes of my life.
I’ll never forget the buzzing of the drill as it pierced my skull. Nor will I forget the immense pressure as air escaped my cranium like I was a can of soda. And don’t get me started on the catheter.
But with incredible doctors and a flood of support from friends and family, I made it out. From all around the state, friends from high school and college came to raise my spirits. They even brought me Chili’s Southwestern eggrolls, my favorite food, and fed them to me in my hospital bed.
Their support made the experience palatable. But the surgery wasn’t the worst part.
Neither was the meaty scar and 24 staples that held my scalp together. It didn’t bother me that I looked like Humpty Dumpty – I just became a hat person for a while. The hardest part was getting right mentally.
In the immediate aftermath, actions like speaking and texting took extra effort. Between the concoction of medications and the hole Jim left behind, my brain needed time to adjust. There was a long delay between when I would think of a sentence and when the words could come out of my mouth. It was a nightmare.
Thankfully, I shook the severe mental blocks within a week or two, but I still felt off. Half my scalp was numb, my head pounded constantly, and I obsessed over the void Jim left. My mother hoped I’d take a semester off to give my brain and psyche time to heal.
But I had come into my own freshman year and was impatient to get my life back on track. I had made great friends, killed it in school and lost over 30 pounds; I didn’t want to lose momentum. So, a month later, I was back at UF.
On paper, everything was fine. My grades didn’t suffer and my brain was healing as expected. I hid my mental scars from the people I loved like my hats hid the scar on my head.
Truthfully, I was miserable. My faith in my intelligence, the foundation of my identity, was shaken. Every time I was slow to think of something my insecurity worsened. Friends joked that I was dumb because I was missing a piece of my brain. I laughed and joked too – it was funny – but it reinforced that insecurity.
When I looked in the mirror, I saw the scar. When I scratched my head, I felt it. When I had a headache, you can guess where I sensed the pain. And, every six months, I relived the experience when I came home for an MRI and checkup.
I wouldn’t talk about it to my friends, family, or doctor because I didn’t want to be judged for complaining. Nobody understood me, and I was frustrated.
Naturally, I bottled up my emotions and lashed out at the people I love.
My mom described me as “irritable,” and my younger brother, Mikey, used “volatile.”
They were both right.
Sometimes, I was myself: Kind, smart and cracking jokes.
Others, I was a ticking time bomb with a broken clock – nobody knew when I would explode or what would set me off.
“It was like walking around eggshells,” my Dad said.
Separating myself at UF was easier than it was at home. Some days I wouldn’t see the sun. I’d get out of bed at 3 p.m., shower, eat lunch, do homework, watch tv, eat dinner, watch more tv and go to sleep around 5 a.m. Clearly, I wasn’t the best student, but I always prepared for exams and turned in homework on time. In my mind, my grades were fine, so I was fine.
I also had quality friends to cheer me up.
Opioids too, at least for a while.
I had leftover Percocet and oxycontin from both brain and wisdom tooth surgery the year before. Not enough to last me long, only about 30 in total, so I rationed them for the bad days.
Weed became my crutch when I ran out of pills. I figured it was better for me than opioids, but I abused it just the same.
“I left a guy who never would have tried weed freshman year and came back to a pothead,” said my friend and senior-year roommate Julian, who studied abroad my sophomore year.
I maintained a decent GPA, but I lost all passion for my major and future – I switched to journalism as a senior because I loved writing, but I still hated school.
Angry during the day and high at night, I was going nowhere fast. Oh, and I gained back the 30 pounds I lost as a freshman. (Thanks, munchies.)
One great thing to come out of those times: I got closer with my brother. My senior year, we talked almost every night over Xbox Live. He was the first person I really opened up to in years.
He worried about me, but knew we’d always have each other.
“I was never worried about losing my relationship with you,” he said.
Having Mikey as an outlet was the first step for me. He was the rock I could go to when I was struggling. He still is.
My friends were also incredible. I often felt lonely, but I knew I was never alone.
The second half of my senior year I even met a friend, Isa, who survived cancer. We quickly bonded over the fun of being a college kid recovering from a major disease – I finally had someone to complain to.
“It’s just nice because you don’t have to act strong anymore,” she said. “Someone else gets it, so you get to just be your real, shitstorm self.”
Talking with Isa helped me process my own trauma and insecurities in a way I hadn’t been able to since my surgery.
Over summer, I took a break from everything: No school, no job and no responsibility. My only focus was to improve. I kicked the weed habit, lost weight and talked openly about my emotions. I wrote more, went to therapy, traveled to a foreign country for the first time and reconnected with my family. I started to feel like myself again.
For years, I was bitter and angry at the world for knocking me down. Now, I’m appreciative of what the experience taught me: to have faith in myself, to love and trust my support system, to empathize with others, to not fear failure and to get back up when I do fail.
There’s more I’ve learned the last three years, but those lessons were most important.
My fifth year at UF, I experienced a resurgence in school. Better late than never, right? I fell in love with journalism and earned my best grades since freshman year and started covering local politics for the school’s Innovation News Center. Now I have plans to move to Ecuador after graduation as a freelance journalist and novelist.
I’m happy to say Humpty Dumpty’s future is looking up. And it didn’t even take all the King’s men to put him back together again.
Jacob Berkowitz | Patient | Low Grad Astrocytma
