The TED Talk that shaped my perspective on living with brain cancer
In February 2008, brain scientist Dr. Jill Bolte Taylor presented her “idea worth spreading” on the TED stage.
One morning, a blood vessel in Jill Bolte Taylor’s brain exploded. As a brain scientist, she realized she had a ringside seat to her own stroke. She watched as her brain functions shut down one by one: motion, speech, memory, self-awareness…
Nine months later I was recovering from brain surgery when I first watched her talk. I had just learned the brain tumor causing my seizures was malignant, and Bolte Taylor’s talk changed my life.
The why behind the what
I had just celebrated my 29th birthday when I experienced my first seizure. All seizures are different but mine are painful—full of wild movements and jerking. It is as if my entire physical body is rebelling against me, but in reality it is an electrical storm raging in the privacy of my own brain.
During my time in the hospital a kind and perceptive neurologist noticed I was different from his other patients. Even though I was scared, I was especially curious about the inter-workings of the brain and the why behind the what of makes a seizure happen.
The doctor could have been annoyed by my incessant questioning, but instead he gave me a reading list so I could learn more. His recommendations ranged from the easy to read (such as The Man Who Mistook His Wife For A Hat by Oliver Sacks, MD) to medical texts (like Brain and Visual Perception: The Story of a 25-Year Collaboration by David H. Hubel, MD and Torsten N. Wiesel, MD).
One of the books he added to my list was My Stroke of Insight by Jill Bolte Taylor, PhD, with a note that I should first watch her TED talk.
“This is so cool”
In her talk, Dr. Bolte Taylor describes how the right and left-brain differ from one another. The sensations she experienced during her stroke were identical to the auras I was having before my seizures. Listening to a brain scientist explain what I was experiencing was both reassuring and validating.Describing her stroke, Bolte Taylor said:
“Everything in my body has slowed way down… I can no longer define the boundaries of my body… I can no longer define where I begin and where I end. This is really cool.”
It was that last little comment that changed my life.
We have the power to choose
Bolte Taylor’s talk showed me I could choose to look at my neurological disorder from a different perspective: This can be so cool.
Instead of feeling like I was robbed of my health during the prime of my life, I instead choose to respond with wonder and curiosity. I recognized I was now on a journey many others would never experience.
Over the last eight years I have become more knowledgeable about neuroscience. I also became a patient advocate, and inspired by others in the online patient community, I transformed into an engaged patient.
I’ve learned to use my voice. I gained confidence. I now work in healthcare advocacy and am excited about the potential for patients to drive medical research.
In her talk, Bolte Taylor says one of the most powerful realizations about the brain is that “we get the power to choose moment by moment who and how we want to be in the world.”
People often comment on my positive attitude toward living with brain cancer, but I don’t think I have an innate positivity—I just chose to respond to this experience with wonder and curiosity.
And as Jill Bolte Taylor pointed out, this experience can be so cool.
This post originally appears on Medium.com.
