On March 20th, 2015, I walked into a cafe near MIT. It was a chilly afternoon, and I wore my beanie to keep my head warm after I lost all my hair following my proton beam radiation treatments. I was looking for a man named Steven Keating. A mutual friend of ours from the National Brain Tumor Society suggested we should meet.
When I first emailed Steven, we realized we had actually overlapped at MGH during our radiation treatments. That was back in February. When we finally met in the cafe a month later, Steven’s hair was starting to grow back in.
We talked for a while about our personal experiences, and I asked Steven endless questions about his passion for open-source data. Steven was one of the most curious people I had ever met. His inquisitiveness even led him to finding out he had a brain tumor. Steven collected as much information and data points he could about his experience both out of personal curiosity, but also to advocate for patients to have agency over their illness. He recorded his surgery, joined a pathology course so he could look at samples of his own tumor, and used his specialty in 3D-printing to develop a model of his tumor.
After our meal, he brought me to the MIT Media Lab to show me his work for his PhD where he was developing the technology to 3D print the foundation of buildings.
Steven inspired me.
Just a couple months into treatment, I was lost. I was writing and cataloging my experiences via my blog, but I didn’t know what direction to go with my life or how to engage with my circumstances. Steven showed me the possibilities of what an engaged patient could look like. What it looked like to take initiative in incorporating my illness into ways for me to move forward and explore my own curiosities. What it looked like for the patient to become the expert, to become a partner in their medical care, and use that knowledge to help others.
He got my butt off the couch, and for that I am forever grateful.
Steven went on to achieve many things and make his mark on the world. We stayed in touch via social media, and when I learned he had moved to California, I was looking forward to getting together again.
Steven passed just a few days ago from a Glioblastoma.
On July 17th I was at the Capitol for the first Glioblastoma Awareness Day. I had no idea while standing in the glorified halls of Congress that Steven, who had inspired me so much in the stages of my first recurrence, was about to pass.
As someone who has been engaged in brain tumor advocacy for most of my life, I know a lot of amazing advocates who have passed. Every time I hear the news it is heartbreaking. I think of their families and how unfair it is for their life to be cut short from this cruel disease. Their passing also reminds me of how delicate my own illness is, and that is scary.
But I try to remember all the positives of the life they had lived. I try to remember my encounters with them, and how they impacted my own life.
Even though my relationship with Steven consisted of one afternoon, a couple conferences together, and some back and forth on social media, he had a profound impact on my life.
I think we underestimate the impact we have on other people’s lives.
I hope in his last days, Steven knew he touched a lot of people and left a lasting legacy.
Before his first surgery, he wrote to his family and friends: “The world is a lovely, splendid, and fascinating place. But most of all, to me, it is beautifully curious.”
In honor of Steven, I promise to stay curious and enjoy all this world has to offer.
To help discover treatments and ultimately a cure for brain cancer, please donate to the National Brain Tumor Society HERE. (note, this link is for my Boston Brain Tumor Ride page from May. All proceeds go to the National Brain Tumor Society).
To learn more about Steven, read THIS ARTICLE from MIT.