In the spring of 2017, Giertz started to notice that her right eyelid was swollen. A fan on Twitter even commented on it: “What happened to your right eye? It’s like a bump above the eyelid.” A year later, in April 2018, the eye started to ache. MRI scans revealed a noncancerous meningioma growing on the front of her brain. The tumor, which she nicknamed Brian, was remarkable chiefly because of its size: 4.6 centimeters across.
“Plot twist,” Giertz says in a subdued voice during a YouTube dispatch about the golf-ball-sized growth at the time. “I don’t even like golf. But I like my brain a lot.” Her face crumbles on camera, and she starts to cry, faced with the reality of potentially losing sight in one eye, being paralyzed on one side of her face, or suffering a stroke. By the end of the video, Giertz is joking about eye patch designs and ponders sending the excavated tumor into space.
When I ask Giertz about the decision to go public with her diagnosis, she says she’s “very external” in how she processes things. “I wanted to tell absolutely everyone. Friends, colleagues, Lyft drivers, waitresses—absolutely everyone,” she says. “Seeing how other people reacted to it became a way for me to navigate the situation when I didn’t really trust my own thoughts and feelings.” Her mother echoes this: “I think that was the best thing she could do. Why should you hide something like that? Her audience likes her.” But an internet audience is not the same as a group of real-life friends, something Giertz would become more aware of as her treatment went on.
Also, Giertz might not have anticipated how drawn out the process would become. On the day of her surgery, she chronicled her pre-op jitters, posting a 59-second video just before having her skull cut open, closing out with “I hope you’re having a good day” and her signature “Byeee.” After a nine-hour surgery (“Shortest day of my life,” she says), Giertz began her recovery process.
Doctors weren’t able to remove the entirety of the tumor, due to its proximity to other critical structures in her head. What remained of Brian grew, and much more quickly than anyone anticipated. Eight months after the surgery, in January 2019, Giertz announced that her brain tumor was back. She had T-shirts made with an imprint of her holey brain and began selling them in an online Teespring store. But it’s clear in the video announcing the tumor’s resurgence that Giertz is crestfallen.
If the campaign for 2018 was to evict Brian, Giertz says, the goal of 2019 was to burn Brian through radiation therapy. This required rounds of treatment that would sap her of energy, making it difficult for the typically healthy, yoga-practicing, meditating, mostly vegan Giertz to even get out of bed. In her non-vlogging moments, Giertz felt vulnerable and alone, despite her many fans expressing support. Her family had flown in for her surgery, and her mother returned for her radiation treatments, but at some point they all went back to Sweden. Giertz had to ask her Bay Area friends, like her main collaborator, Marcos Ramirez, for help.
Giertz’s prognosis is good. But Brian has already altered her life deeply. “When you’re young and reckless, you think you’re never going to need people,” Giertz tells me at the wine-country workshop on that warm day in June. “But that was the first time in my life I’ve really, genuinely needed people.”
In a lot of ways, this required Giertz to embrace a role reversal. “She looks out for everyone on set,” says Laura Kampf, the YouTuber who collaborated with Giertz on the Pussy Grabs Back robot. “She’s always worried that someone is hungry or didn’t sleep enough.” I see this instinct as well. As I continue to meet with Giertz over a period of six months, she starts probing into how I’m doing and at one point says with a straight face that she’s writing a magazine profile on me too.
“There’ve been times when I was working with people, and she’s called me up and said, ‘Hey, when you weren’t looking that person was kind of shitty to someone else on the crew, and I thought you should know that,’ ” Savage says. “Her values are just never not present in all the things that she’s doing.”
Giertz lets me sit in on one of her many doctor’s visits, provided that I agree not to record audio, take photos, or share the name of her ophthalmologist. (At one point, she texts me, “Asking for a friend: Is it really naive to let a journalist come along to a doctor’s appointment?”) Most people in the waiting room are octogenarians, and the still-youthful Giertz, in her faded black jeans, blue denim jacket, and ponytail, won’t sit unless everyone else has a seat.
After she is moved into an examination room, a doctor comes in and goes over Giertz’s most recent scans. Her optical nerve doesn’t look stressed, which is good, he says. The internal swelling has gone down, and he doesn’t see evidence of persistent pressure on the nerve. The bigger concern is long-term damage, something Giertz has mentioned before. She doesn’t know, and might not know for a decade, whether the tumor and subsequent radiation will have a lasting effect on her hormones and pituitary gland.
The doctor says he’s going to run through some additional procedures today, to determine if Giertz’s eye might offer up other subtle indicators of what her long-term recovery will look like. While the doctor and a nurse are examining the scans, Giertz turns to me and says, “Did I tell you that my brain has filled out?” as casually as if she had told me she was thinking of taking next Friday off, or that her neighbor had adopted a puppy. Recent scans show that there’s been regrowth in the chunk of her brain that had been pushed aside when the giant tumor had taken up residence in her eye vault. “One side is still a little floofy,” she says. “But I was so, so happy.”
Following radiation treatment for her brain tumor, Giertz turned her custom-fit radiation mask into a wall lamp, with LEDs shining through the translucent resin. The video of her making the mask has been viewed over a million times.
Photograph: Joe PuglieseIn July 2019, Giertz shared a blog post on Patreon explaining why she was no longer making shitty robot videos. Her energy had been limited since her surgery, she wrote, “so I have tried my best to only spend it on things I really want to do. And for now, that has not been shitty robots.” I ask her whether Brian helped mark this turning point for her. The answer is yes, but also no. Even before the brain tumor, Giertz says, she was starting to feel like “it was harder and harder to come up with ideas. I was always concerned that it was eventually going to be like beating a dead horse, and that the joke was going to be over and I didn’t have anywhere else to go.”
Abandoning shitty robots was definitely detrimental to the success of her channel, she says, as beneficial as it may be for her well-being. Giertz has never really succumbed to the pressures of the internet content machine. She publishes her YouTube videos weeks, sometimes even months, apart from each other. A video with millions of views is sometimes followed by one with a few hundred thousand. Her Patreon dispatches are slightly more consistent but take different forms. Sometimes they’re videos. Sometimes they’re simply blog posts, like the one explaining why she wasn’t building shitty robots anymore.
“She’s doing it exactly right,” Kampf says. “I think the brain tumor slowed her down, but it made the community around her so much stronger, and I think she’s completely unattached from the pressure of uploading on a regular basis.”
Giertz acknowledges that there are plenty of creators who produce more than she does, and that she may be sacrificing views in exchange for what she calls a healthier relationship with YouTube. Basically, by not producing as many videos, YouTube’s system may not be bubbling her videos to the top of watch lists as much as it would for creators who post a video every week, or even every day. “The algorithm, it’s a black hole,” she says.
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She won’t say much else about YouTube, even as the platform faces continuing scrutiny for facilitating the spread of misinformation, toxic content, and harmful videos, and for its management (or mismanagement) of all of the above. “I think social media platforms are trying to be responsible, but there are also definitely instances where they try to make it seem like they’re being responsible, and for revenue or profit they’re doing another thing,” Giertz says cryptically.
In the car on the way back to San Francisco from her doctor’s appointment, Giertz asks me if she can read aloud a draft of something she’s been working on. She’s nervous about it, she says, and later she’ll corner a top newspaper executive at a media confab to try to convince him to print it. It’s an open letter to YouTube creators, urging them to reconsider taking sponsor money from fossil fuel companies. Giertz won’t call out the YouTubers by name, but she’ll speak candidly about what she sees as hypocrisy at a systemic level. “Oil companies trying to convince us that they’re green is the gaslighting effort of the century,” Giertz tweeted in November.
Every time I talk to Giertz, she’s hatching plans. One day over lunch in San Francisco, she is forlorn because the shipments of her Every Day Calendar—a habit-tracking wall calendar that raised more than half-a-million dollars on Kickstarter—arrived at her workshop damaged. She plans to ship them to customers in December, and her old fear of failure has let itself in again. A few weeks later she tells me she’s going to build a coffee table made of matchsticks. (When it reaches the end of its useful life, you can just light it on fire.) When I call her again in October to ask about her post-Truckla plans, Giertz head fakes and tells me about her puzzle project. She’s building a solid white puzzle with one piece missing, which she wants to ship to provoke the cringey feeling creators have when something is incomplete. The puzzle box reads, “499/500 pieces included.”
All of these embody what Giertz calls exploratory building—a grown-up version of playtime. I get the sense that they’re important to her, fulfilling that inner drive. I also get the sense that they’re projects to fill time while she’s incubating bigger ideas. Like Truckla.
Her Truckla project has been, by almost all metrics, a success. At over 10 million views, it’s her most popular video to date. More important, it proved that a new formula was feasible for Giertz; that she could invest as long as a year on a project and people would respond to it all the more. Even Elon Musk, who has trailed Giertz in his efforts to launch an EV pickup truck, took note of the video. He invited her to his own “Cybertruck” unveiling in late November.
It was all so encouraging that for a while last summer, Giertz flirted with the idea of moving to Los Angeles to launch a video series about building cars, almost ditching her San Francisco workshop for a much larger space in Tinseltown. Later, she scrapped that idea as she set her sights on something even bigger. Now she’s in contract negotiations with a media company—she refuses to say which one—to make a TV show in space.
Or … at least a TV show about space. Giertz alternates between saying “about” and “in” when she’s talking about the show she wants to make. I point out that the preposition matters. Will she film this TV series from orbit? Or would the videos just chronicle what it might take to get there? Hopefully both, she says.
This thread of space exploration has been running through her work for years: the DIY astronaut training, the zero-gravity flight, locking herself in confined spaces for days, publicly fantasizing about blasting her brain tumor into orbit. I ask her why going to space captivates her so much. “Because it’s such a worthy goal,” she says. “I started studying physics because I wanted to be an astronaut. Now I want to show a flawed human going to space.”
For the new Simone Giertz, accepting her own flaws and embracing grand, non-shitty designs are of a piece. “There are so many things that are amazing that are not perfect. And there are so many things that are perfect that are fucking boring,” she says. “Perfect is a corset. It doesn’t let you breathe. It doesn’t let you roll around. It’s a small pen to be in.”
Space is pretty much the opposite of all that (notwithstanding all those confined capsules). For Giertz, getting there is more a matter of when than if. When I ask if she has a planned timeline for liftoff, she replies, “I mean, I have time next weekend.”
Hair and makeup by Amy Lawson and Miranda Gulaysh
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