In 2014, Sarah Swenson caught the flu. Or so she thought. She just couldn’t shake it. One evening, the 42-year-old, who lives in Monmouth, just outside of Salem, went upstairs for a shower. When she got out she was delirious, asking her husband, Alan, the same question over and over: “What’s your birthday? What’s your birthday? What’s your birthday?” Alarmed, he called her mother and her best friend, and the three of them took her to Salem Hospital.
By the time she got to the emergency room, she had lost 20 years of her life. “[In triage], they asked her for her address, and she gave them her address from when she was 16 years old,” recalls her mother, Deborah Gately. “I couldn’t even tell you that!”
Doctors also asked her who the president was. “She became very childlike,” says Gately. “She would say, ‘George Bush.’ And then she would do a wink-wink, nod-nod and go, ‘And he’s not very good.’” Swenson, who had left the Church of Latter Day Saints 10 years previously, kept asking for a Mormon blessing. She was easily disturbed: “We’re not supposed to be here,” she mumbled over and over again. It was as if she’d time-traveled back to 1992.
Something was very wrong. But test after test came back clear. It wasn’t until a spinal tap, two days into her hospital stay, that doctors discovered what Swenson says they called “low grade meningitis.” By then her memories had begun to return. All, that is, except the last five years: everything that happened to her from Christmas 2009 to her emergency room visit in September 2014 was gone.
Meningitis is an inflammation of the meninges—stretchy, transparent membranes that protect the brain and spinal cord—as a result of a bacterial or viral infection. It affects tens of thousands of Americans each year—and can be deadly. Long-term effects can include headaches, balance problems, even deafness. Discharge notes from Swenson’s hospital stay indicate she was diagnosed with viral meningitis “because that fit more closely than any other diagnosis.”
She was also told she had retrograde amnesia; a loss of memory of things that happened before injury to the brain—a rare side effect of viral meningitis. “Head trauma, that’s the most common time that we see it,” says Dr. Joseph Quinn, professor of neurology at Oregon Health & Science University. (OHSU is a nationally recognized neuro treatment and study center, but Swenson has never been treated there.) “[But] even with a relatively severe head trauma, we don’t usually see people lose years at the time. [That’s] pretty rare.”
Yet Swenson lost five years, a realization that dawned as she was recovering, six days into her hospital stay. “There are those big white boards in your hospital room, you know?” she says. “And I remember looking up and seeing the date and thinking, ‘Well, this isn’t right. There’s no way this is real. I’m the sane one and you’re all just clearly nuts.’”
Looking in the mirror, she found more surprises: her hair had grayed in the five years she was missing, and she had cut it short. Who was she looking at?
But the most damning proof of her memory loss arrived at her bedside in the form of her two daughters. As far as she was concerned, they were ages 1 and 12. Instead, she met a rambunctious 6-year-old and a shy high school senior.
Her baby was suddenly talking in full sentences about her first-grade classmates. “That was probably the hardest of all. I would just want to hold her and hug, squeeze her as hard as I loved her,” she recalls. “And then at the same time it was like, this isn’t really my kid, you know?”
Swenson was released from the hospital after seven days and went home to a scene she barely recognized—a redecorated bedroom, new houses outside her window, and kids who were a mystery to her. Even her own underwear drawer felt like a minefield: She couldn’t bring herself to wear what she saw as someone else’s panties. And she became fixated on what had happened between her and Alan during what she calls “the dark years.”
“Did she do something that broke his trust? Did he break my trust?” says Swenson. “Did they become really boring people who only have sex on Sunday mornings at 10 o’clock—what kind of things happened in this relationship? It felt like I was intruding on another woman’s house and another woman’s family.
“[But] I was expected to wear her clothes and take care of her kids.”
There’s still much we don’t know about how the brain works, particularly when it comes to memories, but some things are clear.
“Memories are made by the hippocampus, a very small part of that area,” says Quinn. “But old memories are stored diffusely. The literature says that the thalamus, another central structure in the brain, is sometimes associated with retrograde amnesia.” Yet even Quinn is not convinced the evidence is conclusive on this point. In a case like Swenson’s, “It’s not like you’d do a scan, and say, ‘Oh yeah, it’s the thalamus....’”
An MRI of Swenson’s brain showed no injuries. Doctors were stumped, but seemed confident her memories would return within a six-month period. In the meantime, she had to find some ways to cope with what she’d lost. She ordered a whole new wardrobe and gave away
everything that belonged to her former self—including designer purses and everything they contained. She archived all of her social media posts in books—one per year lost—and stored them in her attic for a time when she was able to process them. (She still hasn’t looked at them, she says.) With the help of a therapist, she developed a response—“The Spiel,” she calls it—to former acquaintances who would approach her in the grocery store or at a concert: “I’m really sorry, I don’t remember you. I’ve had viral meningitis. It gave me amnesia. Can you please explain to me what our relationship is?”
She also invited her friend Joanne Fuhrman over for what she called, “The Day of the Dead.” “She made out a list of all the people that were important to me that had died, and we just went through them one by one,” Swenson recalls. “Joanne explained: ‘Here’s how this person died, here’s their picture, and here’s how you helped.’”
Three months after meningitis erased a chunk of her life, she went back to work, to what she found out was a whole new job. In 2009, she had been the IT manager at a nonprofit that works with adults with developmental disabilities. Somewhere in the dark years, she had been promoted. She read back on all the documents saved on her network drive for the previous year, and learned that her role was now completely different, and she had to relearn it. She also found out she’d won an award during that time. Did it make her proud?
“There was a little bit of jealousy to be honest,” she recalls. “Like, ‘Oh jeez, I wanted to be there.’”
Her coworkers were supportive, with one even going so far as to tell her that they preferred the “new” Sarah to her predecessor, who was constantly busy and didn’t listen. (“She said, ‘Before your meningitis, I would’ve hated for you to be my supervisor.’”) She wasn’t the only one. Brandt Booth had been a close friend of the old Sarah, before an off-color comment mushroomed into a falling out. Nervous and uncomfortable, Booth explained to Swenson that they were no longer friends, laying out the whole story. But the new Sarah would have none of it. “Why did I get upset about that?” she asked Brandt.
“She’s way different,” says Booth of the woman he now counts as one of his best friends. “It’s night and day. Her hair is completely different. Her wardrobe is completely different. She has a much more laid-back, relaxed outlook on life now....She’s gone back to being open and goofy and fun.”
Swenson waited the expected six months for her memories to return. Then the doctor who had given her that original timeline told her to give it two years. After two years, Swenson realized those five years were probably never coming back. Her favorite doctor, a neurologist at Kaiser, pulled the fewest punches about her prognosis:
“She was so kind and very upfront by saying, ‘I don’t know what to do for you. None of us have ever experienced this before,’” Swenson says. “At that point it was a relief, because for two years I had been so hopeful and just like hanging on for it. Having someone say the chances [of memories returning] are basically zero gave me the permission to just move on.”
Other explanations for seemingly permanent memory loss do exist. Larry Squire is a professor of psychiatry, neurosciences, and psychology at the University of California, San Diego, and is considered one of the leading national experts on memory.
“There are two kinds of memory impairment,” Squire explains. “One kind belongs to the realm of psychiatry. It doesn’t involve any MRI injury or neurological change. And the other kind belongs to the realm of neurology, which involves brain injury and disease or lesions. It’s extremely unusual to have retrograde amnesia without any anterograde amnesia,” he says, referring to the inability to create new memories.
Translation: Typically, severe cases of memory loss involve a visible brain injury and problems making new memories, too. Otherwise? The memory loss may be “functional amnesia,” rooted in psychological issues.
“Those who have worked with such patients [with functional amnesia] have not believed that the patients were consciously simulating their condition,” says Squire. “At the same time, it is not well understood when or how or to what degree behavior can be controlled unconsciously.” In other words, people with psychological-based amnesia are very rarely “faking it.”
Swenson has never heard the term “functional amnesia” from any of her doctors: when she was first admitted to the hospital, her friends were asked about her stress levels, which she says were nothing outside the scope of her usual busy work and family life. She can’t point to any past trauma that could have contributed to her case. Medical reports confirm she was diagnosed with retrograde amnesia, and has been given various neuropsychological tests to determine cognitive function. Her doctors, who did not respond to requests to be interviewed for this story, are treating her memory loss as a neurological issue. They just can’t seem to fix it.
Meningitis also left Swenson with other curious complications: since the illness, she no longer sweats and says the virus attacked her hypothalamus, the part of her brain that regulates body temperature. If it’s over 70 degrees out, she suffers what seem like seizures—sometimes so severe she blacks out. After she comes to, she feels disoriented and often can’t immediately remember where she is. “Every time it happens, I’m terrified [my memory] is not going to come back,” she says. She has to wear an ice pack vest when she leaves the house and carries a homemade swamp cooler with her to work.
“The temperature regulation piece impacts my life so much more greatly [than the memory loss],” she says. “And I have found no doctor who will help.”
Still, it’s not all bad. There was one gain from her memory loss: it rewound the clock on the seven-year itch.
“When I first came home [my husband and I] had only been married for two years in my mind [instead of nearly seven],”
Swenson recalls. “We were having sex all the time. So that part was really fun.”
And she’s making new memories.
“She stores a lot of things,” her friend Jill Goold remarks, noting Swenson is now the one who remembers everything. “Strange that it was her memory [she lost], because that is the best thing about her.”
Today, Swenson’s focus is on finding someone who will really take an interest in her case. (She needs a referral to be treated at OHSU: so far, it hasn’t come.) She doesn’t expect to shed light on the dark years anymore: Her younger daughter’s first day of kindergarten, that trip the family took to New York City, her older daughter’s high school years? They’re gone. But she does have hope someone somewhere can help her with the temperature regulation issue.
“Doesn’t this have to be interesting to some neurologists somewhere?” she asks. “I would just really like to take a warm shower.” She laughs, aware of the irony: in some ways, all her problems began with a shower. Still, that’s her dream after all the things she’s lost: “I just want to do it again.”