My mother looks like Frankenstein's monster. That's the thought that ran through my mind as I looked at her in the hospital. Her thick black hair had been shaved, and I could see the stitches where neurosurgeons had removed part of her skull. They had opened her up twice already because her tumor, a glioblastoma—the most aggressive form of brain cancer—kept growing back.
Her doctors recommended further experimental treatment, which would have subjected her to yet more surgery. She declined. It was all too much for her. A few months later, my 52-year-old mother started hospice, and I took care of her at home. It was daunting for a college student who had assumed she was just coming home for the summer.
My family had downplayed the seriousness of my mom's condition, worried that the news would derail my studies. They never told me about my mother's frequent headache attacks or the car accident she had when she stepped on the gas instead of the brake. I didn't know she had been misdiagnosed as having had a stroke, and I wasn't there when she was hospitalized and doctors opened her skull and discovered the cancer. So I was shocked when I saw how frail she was, and I was unprepared for her rapid decline and death less than a year after her diagnosis.
That was 17 years ago. I don't remember many of the details from that time, but the images in my mind and the feelings I experienced after losing my mother still affect me profoundly. The anger and regret I felt morphed into a hypervigilance about my own health—and a thorough investigation into every possible medical problem. My sadness over my mother's misdiagnosis, which delayed treatment, has made me a voracious researcher on all areas of health, especially brain health. The helplessness I felt because my family withheld information about the seriousness of my mother's condition means I'm open about my ailments and always ask doctors for more information.
These qualities that I developed as a consequence of my mother's illness and death may have saved my life. In 2017, I had a migraine so excruciating I went to the emergency department. While there, I insisted on having an MRI, which revealed an unruptured cerebral aneurysm. I was terrified because I thought I would need brain surgery, and I was in despair because I had no mother to hug me.
Doctors reassured me that my aneurysm was small and stable, and they recommended brain scans every year to detect any changes. We followed that plan until a scan in 2021 revealed that my aneurysm was growing and changing shape. My neurosurgeon suggested an angiogram, a procedure that involves putting a small catheter through the femoral artery up to the brain. After discussing all options with my doctors—since my mother's death, I've been an active participant in my care—I ended up getting a stent in my brain that diverted blood from my aneurysm.
Six months after the procedure, the aneurysm had healed. I credit the successful outcome to my skilled doctors and their willingness to engage me in the process, and conversations with aneurysm survivors. My actions were motivated by my mother's experience. She was less involved with her care and less transparent about her situation. I hope my own family will appreciate the importance of being proactive and facing fears head-on.
Grief is difficult; it can even be crippling and heartbreaking, especially in the beginning. For me, grief latched on and became part of the matter that makes me who I am. Like matter, grief never ceases to exist, but it can evolve and change. During that evolution, grief has pushed me to be stronger, better equipped, and more present.
Catherine Navarro Lee is a writer, an actor, and an ambassador for the Bee Foundation, a nonprofit group dedicated to brain aneurysm prevention. She lives in Los Angeles with her husband and two young daughters.
