Life After a Brain Tumor With Simone Giertz, the Queen of Shitty Robots
For years, Giertz’s robo-fails have made us laugh. Now she wants to build something that will actually help people.
Photo courtesy Simone Giertz
UPDATE: After this story was published, Giertz learned that her tumor is growing again. She is currently receiving radiation treatment. See her talk about it here.
Most of the robots Simone Giertz builds fail. The lipstick bot smears makeup all over her face. The breakfast machine knocks over a cereal box and spills milk on the kitchen table. The baby-carrying drone should never be allowed near a real baby. That’s all what Giertz, having gained internet popularity as the Queen of Shitty Robots, intended. As far she is concerned, a robot that makes you laugh is the definition of success. The concept has earned Giertz a loyal online audience of over 1.4 million YouTube subscribers, who tune in to her videos of bots intentionally malfunctioning in hilarious ways. The robo-fails aren’t the only draw either, considering how Giertz’s audience appreciates her specific brand of candor, self-deprecation, and unbound curiosity.
But on April 30, 2018, Giertz posted a different kind of video to her YouTube page. Talking straight to the camera, the 27-year-old broke the news: A brain tumor the size of a golf ball had been found over her right eye. Happy spoiler: Nine months later, Giertz has recovered after having surgery that removed the entire tumor. It’s a journey that Giertz decided she’d live fully and transparently online. (Disclosure: Giertz has previously written about do-it-yourself robotmaking for Motherboard.) If anything, the experience reinforced her innate humor and fueled her creativity, though post-tumor, her inventive focus has shifted. For years, Simone Giertz’s shitty robots have made us laugh. Now she wants to build something that will actually help people. She’s come up with a mechanical calendar that enforces good habits—“a personal gold star system,” if you will—which only took going through the most traumatic health experience of her life to realize.
When Giertz recorded the video announcing she had a tumor, she didn’t know if she’d be blinded during surgery, or paralyzed, or experience memory loss or personality changes. These were all risks of the surgery that the doctor warned her about. She’d been grappling over whether or not to share any of it with her fans since receiving the diagnosis days earlier. She’d been a public figure on social media for a good three years to that point, though she’d always made sure to keep her personal life separate. Should she keep the tumor a secret? “There was a week between when I found out and when I announced it publicly,” Giertz told me in November. “I just wanted to scream from the top of my lungs: this is happening!”
Looking back, she said, “I couldn’t pretend like everything was okay. Everything was as far from okay as it could be. Also I felt this responsibility of not curating my life by not telling people about the bad stuff. Fuck that shit.”
Giertz’s tumor announcement video has since racked up over 3.5 million views. What makes the 5-minute 23-second statement feel even more vulnerable, then as now, is that Giertz herself was still processing the news in the moment.
“It’s one thing to tell a story when you know exactly how it ends and how it’s going to be and all the ins and outs of it,” she told me. “But when you’re kind of figuring it out yourself and you’re in the middle of it, it was really scary to let people into that.” She worried that she’d be making herself into a target on the internet, where seemingly nothing is sacred or off-limits and trolls abound. But the internet surprised her.
“People were so respectful and warm and supportive. It was really one of the things that made it bearable,” Giertz said. “I don’t think having a million people rooting for you has any practical difference. I don’t believe in prayer, I’m a pretty hardcore agnostic. But it really felt like [a] difference to have all these people who were looking out for me and who would show up. Everyone was saying that it’s such a lonely experience to go through something like this. But for me, I’ve never felt as un-lonely.”
In the month leading up to surgery and the weeks following it, Giertz kept her followers updated on social media, mostly making light of the situation. In her initial announcement video, for example, after describing the tumor as golf-ball sized, Giertz quips: “I don’t even like golf!” A week prior to the operation, she tweeted, “This is your eviction notice, Brian the Brain Tumor. Please remove your property from my skull, eyeball and jaw muscle. I’m also keeping your security deposit.”
Jokes have always come first for Giertz. But even though the experience was entirely hers and she had every right to cope using humor (or anything else she fancied), Giertz is thoughtful about finding humor in darkness. That’s especially true now that she has recovered.
“It still feels sometimes with the brain tumor stuff, I don’t know if those are my jokes to make,” Giertz said. “The surgery went well. I’m fine. But there are a lot of people who aren’t fine. So sometimes I’m like, is this really my joke to make?”
Nowadays, Giertz bears what she called a “super villain scar” along her scalp—the only physical reminder of the ordeal—and a lot of self-reflection.
“I feel frustratingly much like I did before,” she told me. “Having the brain tumor, coming out of surgery and going through all of that, you’re like, I am never going to feel the same and I have this new perspective on life. So much gratitude, life just feels like this enormous treasure. Then that kind of just falls away and you’re back being grumpy about having an early morning meeting.”
What certainly hasn’t changed is her insatiable creativity. That awful Friday last April, after getting the initial diagnosis, Giertz was sent to the emergency room for more detailed imaging of the brain tumor. “The first thing that I said was, hey, can I have the prints of my tumor? I want the copies of my MRI scan. I was just really fascinated with what I could make out of it.” Even after she was out of surgery, it was the same thing, she said. “I was immediately like, can I get parts of my brain tumor?”
Right now, part of that tumor is in, of all places, Antarctica. Giertz herself was scheduled to visit the frozen continent to take part in a documentary, so when life and brain surgery got in the way, she figured she'd send part of the excised tumor in her stead, as her whole body couldn’t go. A friend of hers who did make the trip transported the precious cargo: a medical slide with a sample of Giertz's tumor.
It’s that insistent and playful curiosity that started Giertz making shitty robots, and getting noticed for it, in the first place. Former MythBusters co-host Adam Savage, a big fish in the maker community, remembers coming across Giertz’s breakfast machine video three years ago.
“I went down a rabbit hole of the YouTube videos she had up at the time,” Savage told me over email, “and just thought ‘this is my kind of creator’: Building cool things, telling stories, being her own subject matter, and being riotously hilarious at the same time as her videos were exhibiting a delightfully subversive love-hate relationship with technology. Nobody else was in quite the same space.”
Savage has become a collaborator and friend to Giertz, and also something of a mentor figure, though he’s quick to qualify: “It’s hard to consider myself a mentor when I can tell you she’s way smarter than I am,” Savage said. “Simone is lightning in a bottle.”
For her part, Giertz said she thinks that her trademark inventions were also born from a fear of failure. “I didn’t know how to necessarily make good robots and I was scared of failing to make good robots, so I thought I might as well make bad robots to kind of alleviate the pressure of that,” she told me. “It was foolproof. If I set up to fail, there was no way I could fail.”
As Giertz made a name for herself as the Queen of Shitty Robots, she realized that her definition of failure was changing. It became all about online metrics—views, subscribers, comments—the same kinds of engagement so many of us obsess over on our personal Instagrams. But for Simone, a bona fide YouTuber, it’s part of her job.
“There’s an incredible amount of people that you can compare yourself with and be like, why am I not doing as well as that person?” she said. “It’s really hard. I’ve always been like, why am I struggling with this? Everyone else looks like they’re having a blast.”
And they’re not, necessarily. Or, at least not as much of a blast as their Instagrams might put on. As study after study about social media and mental health makes clear, the constant connectivity of social media is stressing us out.
“We all started our YouTube channels because we like to share these things,” Giertz’s friend and fellow popular YouTuber Dianna Cowern, who goes by the moniker “Physics Girl,” told me. “But once it becomes a job you’re like, I have to share and you feel this guilt and constant nagging from the nebulous internet to just keep sharing. I think that becomes burdensome.”
Then again, high-profile YouTubers like Giertz and Cowern would be the first to say how much they love their jobs. But that doesn’t keep Giertz from considering the potential harms that may arise from the gig. “One of the things I’m constantly worried about,” she said, “is like, is this job making me an asshole?”
Such nagging concerns, along with her very public tumor (and recovery) experience, crystalized into something productive. After surgery, Giertz moved into a new workshop in San Francisco, where she’s built something far removed from the shitty robot world. It’s called the Every Day Calendar, a printed circuit board with 365 touch pads that light up when tapped. Simone came up with the idea this past summer during her recovery, when yoga and meditation became critical parts of her daily routine. Knowing how hard it is to stick with a good habit, she settled on the Every Day Calendar as a visual reminder and reward system to help users keep at it.
After all, habits produce “neurological cravings,” as Pulitzer prize-winning journalist Charles Duhigg writes in The Power of Habit. “Most of the time, these cravings emerge so gradually that we’re not really aware they exist, so we’re often blind to their influence. But as we associate cues with certain rewards, a subconscious craving emerges in our brains that starts the habit loop spinning.”
Giertz set up a Kickstarter in October to help fund the project, asking, “What is one small thing that would improve your life if you just did it every day?” It’s a brilliantly simple view of wellness and Giertz doesn’t think it has to be any more complicated than that. As she told me, “We’re all just battling this question, of how do we take care of ourselves? How do we manage life?”
Unlike her previous, shitty robots, which mostly exist in prototype form (albeit immortalized on YouTube), Giertz plans to make the Every Day Calendar a commercial reality. In just the first month of the Kickstarter campaign (which has since ended) over 2,000 backers had pledged $593,352, far surpassing the $35,000 goal Giertz originally set for the project.
There is a clear demand for products in the wellness space. An explosion of CBD oil, gravity blankets, and meditation apps have emerged to meet the growing collective interest in self-care. In the wake of a personally harrowing year, Giertz is once again building something that makes her happy. She’s not thinking about online metrics or potential criticisms that this new project isn’t, well, shitty. “For me before, making shitty robots was breaking free,” she explained. “Now breaking free is getting to do stuff like the Every Day Calendar.”
“If you’ve found something that’s a successful concept, like I did with shitty robots, it’s really hard to feel like you’re allowed to do other things,” Giertz said. “That’s one of the things that the brain tumor has kind of helped me with. Of course I can do other things.”