Even her fiancé, Jeremy, faced uncertainty about how to connect with her. A few weeks earlier, at a surprise party at the Fox Sports Grill, where they’d first met, he had fallen to one knee and proposed to her in front of all their friends. Now he was faced with the possibility of, at best, taking care of a severely disabled woman for the rest of her life. He found himself in the most difficult situation of his life, and he wouldn’t have been human if he hadn’t considered turning around and leaving.
Amanda isn’t alone in her experience of diminishing social support. Decades of research have documented a complex dance between sufferers and helpers following tragedy. The first step goes something like this: Shortly after a disaster, people line up to offer support in a great outpouring of empathy and assistance. This can be seen clearly in almost every natural disaster of the last century. In the aftermath of the 2010 earthquake that killed more than two hundred thousand people in Haiti and displaced more than a million others, people and organizations around the globe reacted generously and heroically. Governments pledged more than five billion dollars in aid, and humanitarian workers poured into the beleaguered country.
Psychologists Krzysztof Kaniasty of Georgia State University and Fran Norris of Indiana University of Pennsylvania have spent more than two decades exploring how the help that people offer in the aftermath of tragedies impacts victims. Writing in the journal Current Directions in Psychological Science, they have called this the “heroic phase” of disaster support, and it seems to happen following virtually every collective tragedy.
But organizations and individuals simply don’t have the energy or resources to keep up such heroics forever. After a time, people cut back on the amount of assistance they give, whether it’s monetary, practical, or emotional. When the need is great, this can leave important jobs undone. According to CBS News, six months after the Haitian earthquake, 98 percent of the rubble remained uncleared. With little transitional housing built, the number of people living in tents and makeshift shelters in relief camps had risen to a shocking 1.6 million. Even a year later, a report published by Oxfam noted, “Despite the success of emergency lifesaving aid after last year’s earthquake, long-term recovery from the disaster has barely begun.” And, infamously, the cholera outbreak that was likely inadvertently carried to Haiti by UN peacekeepers in October of 2010 remains difficult to stem, despite continued efforts years later.
The reality is that victims received a lot of support in the immediate aftermath of the earthquake. Billions of dollars were disbursed. Thousands of good people traveled to Haiti to lend a hand, some of whom remained there for years. As the Oxfam report mentioned, this support saved countless lives in the immediate aftermath of the quake. There certainly were problems: help was sometimes slow to arrive, was misdirected, or was not offered in the ways needed. But almost no amount of support could keep pace with the level of need the Haitian people were experiencing, a disheartening and frustrating reality for victims and aid workers alike. One aid worker, Quinn Zimmerman, expressed these feelings on NPR’s Talk of the Nation. Commenting on the source of his frustration, he said, “I think the combination for me was the realization that no matter how much I tried to help here, or I’ve tried to help here, and continue to try to help here, there’s no way that I can fix this place.”
This drawing down of social support isn’t unique to Haiti. It’s a predictable stage in most disaster-relief scenarios, according to Norris and Kaniasty. “The initial period of intense affiliation, heroic sacrifice, and altruism eventually gives rise to the harsh reality of grief, loss, and destruction,” they wrote in the Journal of Personality and Social Psychology in 1996, years before the Haitian quake. Good Samaritans are only human. Despite the best of intentions, there is only so much they are capable of doing, and there is only so much emotional energy available to invest. It’s hard to be heroic all the time.
So, despite the enormous level of support they’ve actually received, survivors can be left with the perception that nobody cares. These two predictable stages of social support led Kaniasty and Norris, among others, to question the findings showing that social support was psychologically helpful. They wondered if earlier research had conflated received social support with perceptions that social support would be available in the future, if needed. Disaster victims may perceive that future support will not be available, even though they have already received enormous amounts of support. If these two aspects of social support could be teased apart, the researchers wondered, which one would really be helpful for victims?
To help answer this question, Norris and Kaniasty interviewed 498 adult survivors of Hurricane Hugo six months after the category-four storm devastated large areas of North and South Carolina in 1989, killing 33 and forcing tens of thousands of people into temporary shelters. The U.S. Federal Emergency Management Agency, or FEMA, was famously criticized for its slow response to this disaster. Nonetheless, helpers from across the country showed up en masse to lend a hand. The Red Cross and the Salvation Army both offered funds and aid workers to assist victims of the storm. Two hundred million dollars in federal aid and other disaster-response measures, such as temporary housing assistance, were mobilized in the region.
Six months after the disaster, in addition to asking questions about the degree to which victims’ lives were concretely impacted by the trauma through losses and injuries, the researchers asked the victims about the kinds of support they had actually received from others, and their perceptions that such support would be available in the future should they need it. The results seem discouraging: the more severe the victims’ losses and injuries, the less support they perceived would be available to them in the future. Kaniasty and Norris have dubbed this the perceived social support deterioration effect. Strangely, aid organizations say that the situation is just the opposite: their policy is to offer the people with the greatest need more help than those who haven’t been as severely impacted. But that’s not what the victims perceived.
Some of Kaniasty and Norris’s additional findings may shed light on this alarming disconnect. They found that the actual level of support received by victims in the aftermath of the disaster didn’t seem related to those victims’ emotional well-being. Instead, the victims’ subjective perception that support was available strongly predicted their emotional well-being. So, even if people actually once received a lot of support, they might perceive that it is not now available or that it would not be in the future, and this perception is what really seems to matter in terms of victims’ emotions.
These results point to an intriguing truth that cuts across many areas of psychological research: reality and perception are two separate things, and they’re not always as related as you’d think. It’s not that they’re not related at all. It’s just that, in this case, the relationship isn’t very strong. Depending on how these two things are measured in different studies, the relationship ranges from moderate to virtually nonexistent.
As we’ve mentioned, Good Samaritans’ efforts tend to fade with time. So even though victims have actually gotten a lot of support, they’re sometimes left with the very realistic perception that it won’t be available in the long term. Other times, support is in fact still available even though people might not perceive that it is. Science can’t yet provide a firm explanation for why this disconnect between reality and perception occurs. But one of the most intriguing hypotheses is a kind of contrast effect: no matter how much actual support is offered, it’s often outstripped by the amount of support needed. This certainly was the case in Haiti. So even if support is continuously available, the gap between what aid workers are capable of doing and the amount of need that is still present seems huge, leaving victims to perceive that real help simply isn’t available.
To be clear, we aren’t saying that people’s heroic support efforts in the aftermath of tragedy are useless. These efforts often literally save people’s lives by providing needed medical care, food, shelter, and services. We�
�re also not saying that victims are ungrateful for the help they receive or are overly needy, or that aid organizations shouldn’t try harder to meet victims’ needs. The victims are in legitimate need because they’ve suffered unthinkable events. But this legitimate need can be so large that no supportive efforts could ever fully meet it. This isn’t the victims’ fault; it’s the result of a set of horrific circumstances. The concrete support efforts offered in the aftermath of tragedy, however, don’t seem as effective as one might expect at buffering victims from the emotional impact of the trauma. Instead, what seems more effective in this regard is victims’ perception that support will continue to be accessible when it is needed.
So survivors often face a double challenge. First, they must confront the stress associated with living through a horrific event. But second, and perhaps equally as difficult to stomach, they must face the perceptions of estrangement and isolation that so often slowly creep up afterward.
Amanda encountered many of the same obstacles that disaster victims face: her friends distanced themselves after their initial outpouring of support; her needs seemed just too great for them to bear. Despite this situation, it may seem odd that Amanda never felt the sense of estrangement we’ve been discussing. When you ask her how she survived, how she bounced forward and ended up becoming more than she thought she ever could be before the accident, she claims it was due to unwavering social support. She remained confident that social support would always be available. Of all of the many disconnects that now made up Amanda’s world, this divide was the widest and the most perplexing to bridge.
Though it seemed innocuous to her at the moment, the mishap with the desk drawer would confront Jane McGonigal with many of the same challenges that Amanda faced.
For the past decade, McGonigal had immersed herself in researching virtual game play. A doctoral student at the University of California, Berkeley, her focus was on the real skills and abilities that gamers were building that could transfer to real-life contexts and real-world problem solving.
McGonigal, a brilliant researcher and game designer who doesn’t look or act like the stereotype of a Silicon Valley tech geek, manages to project intellectual sophistication without stuffy pretense. She wears a lot of sparkles, glitter, flashy boots, lightning bolt earrings, and other superhero jewelry. Combining the looks of a pixie with the mind of Einstein, she’s disarmingly direct, quietly thoughtful, and deeply curious about people.
Her doctoral studies concerned the cross section of computer science and psychology. The work required her to spend a lot of time in her own head, which was fine because, despite her spunky appearance, she’s a natural introvert. “I don’t hang out with people very long before reaching my limit,” she admits from underneath ringlets of blond hair. “I wouldn’t normally answer my phone for friends. I’ve always lived in my own head. I could be jogging and pass my own mother without registering her.” This isn’t hyperbole. Jane often jogged through the streets of her home in San Francisco, removed from people and distractions, her thoughts singularly focused.
She jogged so much that her leg muscles became more powerful than she realized. So one day, when she bent down to refill her printer’s paper tray, she stood up fast, and with full explosive force catapulted her head into an open cabinet. The impact propelled her brain against the top of her skull. An hour later, she was laid out, nauseated, dizzy, and disoriented. She’d given herself a concussion, usually a mild and temporary brain injury. The doctors told her the symptoms would last for up to three weeks. Until then, she would need to take it easy and give her brain the chance to heal.
But it didn’t heal. A month passed, and she was not getting any better. “I knew something was wrong,” she remembers. “I could read and write and speak, but my thinking felt compressed, and pretty soon my head would hurt to the point that I’d start to black out. I couldn’t think about complex things anymore, and I’m a cerebral person.”
Normally a happy and upbeat woman, McGonigal was now met with crippling depression. She had always been a super-high-achieving person. In the first half of 2009, at age thirty-one, she had launched two games and was writing a book. Productivity was crucial to her, and her mind was accustomed to working fast. After the accident, her functioning plummeted.
McGonigal found herself experiencing unexpected feelings of isolation. She looked completely normal from the outside, so friends treated her the same as always. Nobody seemed to get what was happening inside her skull. For the first time, aloneness didn’t feel good to her because it meant she couldn’t find the support she needed. She wondered if anyone could understand what she was going through, if anyone would ever truly be there for her in her growing fear and uncertainty.
Even more frightening, she was beginning to experience suicidal thoughts. The top of her building, forty-three stories above the city, offered a spectacular view, but McGonigal stopped going to the roof because she was afraid she would jump. It was day thirty-four since her concussion when she realized she had to do something about her suffering.
She needed people to bring her out of her head. The problem was she had groomed all her friends to be hands-off. “I needed people to connect with me in a different way,” she says. “When someone’s had a trauma, people don’t know what to do or how to act.” For instance, friends brought her bottles of wine, but she wasn’t allowed to drink. They’d take her out of the apartment for coffee, but she wasn’t supposed to have caffeine. She couldn’t leave the apartment anyway without getting nauseated and feeling as though she would black out. It wasn’t their fault. Most people wouldn’t know what to do for someone in this situation. “I’d have to retrain them to be what I needed,” she says.
In response to her pain, McGonigal began drafting the concept for a video game she called SuperBetter. It worked on a now-familiar premise. The science demonstrates that positive changes can occur in our lives as a direct result of our facing an extreme challenge, she explains. “Instead of being weakened by our obstacles, we could grow stronger.” McGonigal believed that, with the right tools, people could use these obstacles as a springboard to unleash their best qualities and lead happier lives.
Players are trauma survivors. After signing in, the game prompts them to choose from a series of real-world quests designed to build what McGonigal calls social resilience. The quests are purposely easy and achievable, such as shaking someone’s hand for a couple of seconds or sending someone a quick text message. SuperBetter encourages players to invite real-world allies (friends and family members) to the game, and these allies in turn send the players on more reality-based quests. For every successful quest, SuperBetter rewards players by increasing their resilience score, which measures physical, social, mental, and emotional resilience. The game also provides a forum for players to reach out and make new virtual allies—other players across the globe fighting the same foes, such as posttraumatic stress disorder, chronic illness, and severe abuse.
McGonigal had come to much the same conclusions that Kaniasty and Norris did in their research. Examining life after her head injury, she noted her tendency to feel alone, even when she had the full support of her husband and friends. On a personal level, she was noticing the social support deterioration effect, and it was impacting her well-being in profound ways. She yearned for a community of supportive people—people who really understood what she was going through and who would be there for her through thick and thin. For this, she would need to help her friends and family feel more comfortable with what she was going through and provide them with a concrete way to help her.
When SuperBetter first came online, it was slow to develop. But as people populated its virtual community, they began to connect and care for one another in real life. A player with acute myeloid leukemia used the game to maximize his quality of life through quests that made sure he got up, got dressed, and left his apartment every day to make one new memory. After playing the game for several weeks, a computer programmer in San Francisc
o revealed to a few friends and family members that he was suffering from depression and invited them to be allies, making him feel closer to and better understood by them.
McGonigal, too, was a SuperBetter player. “I had a notebook, and my husband kept a rudimentary scoring system and a list I wanted my day to include: creativity, showering, eating. I’d get three points for walking around the block. I called people to give them a concrete thing to do. It was better than saying, ‘I’m messed up and I need your support.’ Most people wouldn’t know what to do in that situation. ‘Just call me at night, for five minutes and ask how I’m doing.’ My sister would say, ‘Sit by window and see what you see.’ ”
With dozens of such interactions and tasks, even as small as many of them were, she began to realize that she in fact was not alone. Through the game, she began to perceive that support was available when she needed it.
Her experiences again echo Kaniasty and Norris’s observations. In Current Directions in Psychological Science, they write that “beliefs of being reliably connected to other people will shield victims from experiencing intense distress.” McGonigal discovered that a virtual sea of support was available for her to dip into, even though she previously perceived that she was in the midst of a desert. She found a way to prove to herself that people were there for her and would reliably continue to be.
There are important differences between Kaniasty and Norris’s work and McGonigal’s efforts. Kaniasty and Norris study large-scale communal disasters, whereas McGonigal is primarily concerned with how individuals cope with personal traumas. Also, Kaniasty and Norris simply observe how victims perceive the availability of social support in the aftermath of tragedy; McGonigal was trying to change those perceptions. Either way, it appears that the divide between reality and perception can be bridged.
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