by Kate Greene
This surgery lasted fourteen hours and required twenty-four units of blood, my mother says. When it was over, Asher came out to the waiting room to update my parents, to tell them that Mark was alive, but that he’d lost so much blood. Blood had been everywhere, he’d said, he had been standing in blood. But Mark was alive.
Two weeks later, my brother, whose spine was now only curved at a 45-degree angle, was back on the table for the second surgery. This time, Asher opened him from the top of his thoracic vertebrae to his sacrum and inserted a set of two Harrington rods, one for each side of the vertebrae, with wires wrapped around them, connecting to the metal components installed in the first operation. With a kind of needle-nose pliers, he twisted the wires and straightened Mark’s back to a curve of just 19 degrees, finally lifting the weight from his heart and lungs.
My brother’s recovery began at a rehab facility in St. Louis, and by mid-July, he’d be coming home. My father drove the maroon 1976 Oldsmobile, spacious enough to load in Mark on a backboard, driving him across Missouri back home on July 17, 1981.
It was the same day 114 people were killed, and 216 were injured at the Hyatt Regency Kansas City when four suspended walkways, each one crashing through the one below it, collapsed to the lobby floor. The rescue operation took fourteen hours as people were trapped under sixty tons of steel, concrete, and glass. Cranes were called in to dislodge the rubble. There were loud pops seconds before it happened, survivors said. An investigation revealed a subtle, last-minute design change in the connections between walkways: support beams could barely hold the load of the bridges, let alone anyone who might be standing or dancing on them. The Hyatt Regency walkway collapse remains one of the deadliest engineering failures in U.S. history. There were no spare gurneys anywhere in Kansas City for my parents to bring my brother into the house, but there were neighbors who helped carry him on the backboard and into his own room for the remainder of his recovery.
* * *
One day, about a month into the mission, Yajaira told me that she couldn’t stop thinking of a vision she’d had—it wasn’t quite a dream—that we were all inside a round-bottomed flask, the skin of the habitat dome partially covering it, and we were being swirled and swirled until we produced a desired reaction. Recent mission support communications had been strained: we needed help troubleshooting some technical issues, but the support people who knew the most about our facilities responded to questions about particulars of the solar panels and other power systems in confusing and, we thought, possibly purposely antagonistic ways. Was this a test? NASA scientists are fairly confident in the factors that can make a good team break down, Binsted had said, but they weren’t as sure about the traits that helped a good team maintain its resilience. Our data might clarify that. Might difficult interactions with mission support be part of the experiment? We learned later it wasn’t.
Early in the mission, Jean Hunter asked us to set up some cameras in the kitchen. The food study required data on time spent cooking and cleaning, measured in minutes, captured by video. We noticed, though, that there was another camera, already installed and pointed toward the dining table. What was this one for? No one could say. We later learned it was installed by an engineer on the construction team who, innocently enough, wanted an audio-free live feed for the school-age students who took classes on sustainability he taught. Even though it wasn’t used, no one had asked our permission. Sensitive to our privacy in a space where so much of what we did and felt was already monitored and recorded, we immediately removed it.
* * *
All crewmembers brought their own projects to the mission. Sian’s main project was to film a cooking show where she demonstrated recipes that people had sent in as part of a contest. That meant she was sometimes filming in the kitchen and often editing in her room and that when a contest-recipe meal was made, all of us had to fill out further surveys to rate it. She also took pictures during the mission, of us eating, working, getting dressed in our mock space suits to go outside, of the food, of the equipment, anything, really. I was planning to write a long story about HI-SEAS for Discover magazine, and she agreed to provide the photos. She also took photos outside—inside lava tubes, over red-rock fields, of the night sky—the Milky Way unimpeded by city lights—and of our dome, lit up from the inside.
Angelo, who was working on a second Ph.D. (his first was in biology) at Delft University of Technology on concepts for interstellar travel, was interested in HI-SEAS for how it might inform future space-travel design. Specifically, he was curious about ecological and social systems in space and how they intertwine with technological systems. In practical terms this means asking complex social questions around topics like space gardens or, in Angelo’s case, growing sprouts. How might tending plants in space (an ecological system) affect the people who work with the plants and the people who eat the plants (sociological systems)? And what infrastructure might a garden require or alleviate (technological systems)? He worked on a remote robot farming prototype with Simon and a University of Hawai‘i engineering student named Ileana Argyris. He also conducted weekly conversations with us, the crew, about our ideas of resilience in isolated environments and the challenges they tend to bring—the disrupted sleep, the busy schedules, the frustrations with sometimes unpredictable equipment, communication issues with mission support and loved ones.
Oleg collected rocks around the habitat and performed spectroscopy studies to determine composition, just as astronauts would likely do on Mars, a way of telling the story of the planet’s formation and thus the solar system’s origins. He also brought a thermal camera and made a heat map of the habitat for part of his experiment on modeling temperature variation throughout the dome. We found Simon’s room was the hottest spot, possibly because it was right over the kitchen. But also, I’ve never seen anyone sweat as much when using a treadmill.
Simon had been earning a master’s degree in robotics at the time of the mission. One of his projects, which extended to other HI-SEAS missions, was to analyze trends in water and power use in the habitat. His other main project was the robot pet study. This was motivated by the question that since live-animal pets wouldn’t be allowed on Mars, might astronauts benefit in some way from a robot pet? The thinking is that there could be calming, mental-health benefits to interacting with a cute, possibly cuddly creature that communicates in a nonverbal way. We all agreed to hang out with and fill out surveys about two robot pets. One was PLEO, the walking, cooing toy dinosaur that responds to light, motion, touch, and sounds. The other was immobile, about the size and shape of a paint can but covered in blue fur, and it beeped. Its name was Romibo. I, personally, was not impressed by either.
The experiment I brought to HI-SEAS was a sleep study. I knew astronauts struggled with sleep on the ISS, and I also knew that blue-white light tended to wake up our circadian systems, and so I wondered if a bright dose of it in the mornings might make sleep the following night better or more restful. Everyone agreed to have their sleep monitored with headbands and armbands at night, take surveys in the morning, and light baths on various days throughout the mission.
Yajaira brought with her a number of microbial studies, making bacterial maps of the habitat—the refrigerator handle and the wall next to the toilet were teeming—and testing antimicrobial textiles like socks, sheets, and sleeping shirts from various companies that NASA uses or is considering using. For one, we wore antimicrobial socks, woven with copper threads. Yajaira swabbed our feet before and after and smeared a petri film with the swab. After a few days, the bacteria flourished in all cases but mine, giving me an outsize sense of pride over my naturally very clean feet.
In another bacteria study, we wore pajamas until we could no longer. Rewearable garments are of interest to NASA since there’s no laundry in space—once you’re done with clothes, you throw them away, which is basically out the hatch into a used, purposely expendable resupply pod, which then burns up in the atmosphere. The Canadian astronaut Chris Ha
dfield once said on a late-night show that when you see motes of dust floating in a sunbeam, that’s his underwear.
I fell in love with one of the antimicrobial sleeping shirts. I loved its heavy cotton, its navy blue, the length of its long sleeves, its neckline, the fit around my shoulders, and how it never seemed to pick up my body odor. I figured I’d wear it until the end of the mission, and take it home if they’d let me, but around week three, I noticed that when I put it on, it felt ever so slightly heavier and cooler to the touch. My skin oils and dead cells had been accruing. After a month, disgusted, I retired it.
* * *
Currently there are likely at least three people lying in bed for NASA. Their beds are tilted at a six-degree decline so that blood and other fluids pool headward. Their sinuses swell. Their hearts change shape. The blood vessels in their legs contract. It’s all to mimic the insults of weightlessness in space, and then, of course, to figure out how to mitigate those insults.
The facility that NASA now uses for these experiments is in Cologne, Germany, but during our mission, the bed-bound were housed in a facility in the Gulf Coast city of Galveston, Texas, where, just blocks away, families spend sunny summer days at beautiful beaches or the nearby water park. Those who agreed to participate in a so-called bed-rest study did so for as long as one hundred days, depending on the needs of the experiment and the subject’s ability to endure psychological and physiological tests as well as a marked decrease in day-to-day autonomy.
Subjects must be prepared for the possibility that they may not be chosen to exercise much during their stay, which means a longer and more painful period of post-study physical therapy. If they are chosen to exercise, they can expect, for instance, to be suspended, still supine, on a platform that hangs them in place so that they can “run” on a treadmill whose belt is oriented at a 90-degree angle to the ground, literally crawling the walls. Further indignities include, for instance, the use of bedpans, showers on waterproof gurneys also tilted at six degrees, and required eating of all their calorie-calibrated meals so as to maintain their initial weight to within three percent.
Strange exercise, lack of privacy, forced feedings, no direct sunlight, a schedule dictated by researchers interested in the particular way that your body deteriorates over the course of months. Who signs up for this?
“Some of these guys really need the money,” says Bryan Caldwell, the former Cornell postdoctoral researcher in charge of the bed-rest studies in Galveston. NASA offered about $18,000 for seventy days in bed, room and board covered. “They pay off their debts. We have people who want to come in now so they get out just before Christmas.”
Only two of the fourteen subjects Caldwell worked with—all subjects were men between their midtwenties and midfifties—had any actual interest in space, he says, or what the data’s being used for.
And what do they do with themselves while in bed? According to Caldwell, some of them end up just watching TV. Usually these are the subjects who didn’t come in with a specific project or goal in mind. Those who bring a project they’ve already started tend to be more productive, he says. Then there are others who treat the experience like a resort where they just lie around. These are the ones, Caldwell says, who tend to get grumpy when they’re taken for testing.
Ethically, the researchers must follow certain rules. For instance, they can’t interrupt a subject taking a toilet break—beds are wheeled into bathrooms where subjects use their bedpan with some privacy—but Caldwell says there are those who seem to always need to go just before a test and then stay in the bathroom as long as possible. Other small rebellions occur when subjects grow bored with the food choices and try to hide their mashed potatoes under their plates.
The bed-rest subjects in Galveston and our HI-SEAS crew were linked like fraternal twins. We shared a conception and raison d’être: both our groups were solicited to study menu fatigue and were funded under the same NASA grant. But we presented very different faces to the outside world.
While both groups got the same mood surveys and the same odor-identification tests and the same test to measure how well our noses worked, HI-SEAS got much more media attention. My crew and I helped design some of the experiments we participated in. We had the potential to be coauthors on papers published with the data our bodies and experiences provided. And we even devised our own schedule and mission rules. Unlike our brothers in beds, we had a fair amount of day-to-day autonomy, a voice in the specifics of the experiments that would be conducted on us, and, publicly, something that almost edged toward esteem.
* * *
Late one August night in 2016, my brother Mark called me. “I’m worried that Trump will get elected,” he said, “and that there will be an apocalypse. I want you and Jill to know I love you, and I want you to be okay.”
Mark was staying in a rehab facility in Kansas City where he had been for many months enduring daily dialysis, a failing heart, fluid on the lung, and CNN’s political coverage. He wasn’t prone to exaggeration or grand statements, and so I wondered if the isolation and the constant stream of pundit forecasts were unsettling his mental health.
Around the same time my brother called, I talked to an acquaintance who spent a lot of free time reading articles on Facebook. Some of her political inclinations were different from Mark’s, yet she too was becoming a strong believer that the end was near. Articles about unprecedented natural disasters portending doom had her in a frequent state of worry.
Mark’s news intake was extreme, as was this acquaintance’s, but they couldn’t have been the only levelheaded people having these kinds of deep fears. And what of those more prone to suggestion? What kinds of effects was all the election coverage in various forms having on our collective psyches?
In the years after Donald Trump was elected president, the world learned that Facebook, in particular, did play a role in distributing false and misleading news coverage, though the company claimed contradictory messages about its ability to affect people’s voting behavior. Mark Zuckerberg initially dismissed criticism that Facebook could have played a part in the election outcome even as investigations showed targeted, sensationalist, false news reports were flowing at great volume through its platform.
It’s almost as if the company’s 2012 voting study, an experiment with sixty-one million people who randomly received politically mobilizing messages, published in the journal Nature, never happened. “The results show that the messages directly influenced political self-expression, information seeking and real-world voting behavior of millions of people,” the study’s authors wrote.
And it’s almost as if the company’s 2014 “social contagion” study, in which researchers at Cornell and Facebook manipulated news feeds of 700,000 users with more or less “positive” or “negative” language, resulting in users responding with correspondingly more or less positive or negative posts themselves, never happened. The sweeping conclusion of the social contagion test was that not only did these news-feed modifications influence people’s language choices on the platform, but they influenced their real-life emotions as well.
Published in the Proceedings of the National Academy of Sciences, the study raised ethical concerns at the time. Cornell’s institutional review board deemed it inappropriate to mandate oversight from its human-subjects panel since the university’s researchers hadn’t participated in the data collection—that was all on Facebook, which did not seek consent or in any way notify those users that they had participated in a study.
“When entities feel entitled to experiment on human beings without informed consent, without accountability to anyone but themselves, that’s when bad things happen to research subjects,” wrote bioethicist Arthur L. Caplan, with journalism professor Charles Seife, both at NYU, in a response to the paper. “And it’s now clear that if we don’t insist on greater regulatory oversight of their ‘research,’ you are likely to be next.”
Tech companies are conducting psychological and social experiments o
n a global scale, and in private, without transparent oversight or broadly agreed-upon standards. It’s unprecedented, and it’s not being done to cure cancer or in any other way promote a measurably healthier society—the economic incentives simply don’t exist for this to be the case.
Technology companies have also enabled outside organizations—Cambridge Analytica is the infamous example—to collect data on people in order to influence what they see, to drive some kind of emotional response, to produce a desired real-life behavioral outcome. Facebook doesn’t operate with the ethical oversight imposed on research by government-funded institutions or universities. There are no IRBs dictating informed consent, and there appears to be little to no concern for the consequences these kinds of actions have on people individually or, in aggregate, on society.
Even if you don’t use Facebook or Twitter or Instagram or any of the other social media sites that have existed or will exist in the future, you are still living in a world where billions of people do, a world in which our digital and real-life behaviors, at least in the eyes of large tech companies, are available to be sold and manipulated, where the language we use and the way we feel is being guided by organizations whose only motivation is profit. In this way, and by default it seems, we’ve all become unwitting guinea pigs.
Because of my brother’s life and my own interest in science, I was aware of human research. But until HI-SEAS, I didn’t really know. Or rather, I hadn’t truly understood. It is so easy not to think about the willing and the forced donation of human bodies and psyches to science, to not wonder about how we know what we know about ourselves, to forget about the continuity of (and gaps in) bodies and knowledge. What would it look like if it wasn’t so easy to ignore the boundaries between us, to refuse to see what we owe each other, what is given, and what has been taken?
