Stacy Skolnik: The Ginny Suite (excerpt)
The Ginny Suite from Montez Press (2024)
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‘Controlled by an unknown force’:
What it feels like to have Sunnyvale syndrome
BY AMANDA WEISMAN
Barbara Greene, a former elementary school teacher in San Jose, California, was folding laundry when she knew that something was terribly wrong.
“My body shutting down inside me,” she said. “Seeing stars. Nausea and dizziness like nothing I’d ever....” Conversations with Greene are punctuated with frequent long pauses and forgetfulness typical of her condition.
At the time, she wanted to call to the other room for help, but she couldn’t think of the words, and she couldn’t move. She said it was as if she were being “controlled by an unknown force.” Greene wouldn’t learn this until later, but she was among the first victims of a still-inexplicable phenomenon. That phenomenon has come to be known as Sunnyvale syndrome, a mysterious set of symptoms ranging from amnesia to language loss to out-of-body experiences and catatonia, which are often linked to mutations in the brain. By now, Sunnyvale syndrome has afflicted thousands of women globally.
Without any avenues for information Greene felt confused and alone. Now, she says she wants the world to know what happened to her in order to help other women get one step closer to understanding an illness with far-reaching effects. She also wants to raise awareness about the real suffering and injuries behind her condition and says that those who claim this is a case of “girls crying wolf,” or who assert that she must be a victim of mass psychosis, are disregarding a real illness with grave repercussions.
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In November of last year, Greene gave birth to her first child, and her symptoms started soon after. Initially, she brushed her symptoms off as normal postpartum hormonal changes. She knows now that nothing about it was typical, and her condition continues to worsen nearly one year later. “This is supposed to be the most special time of my life,” she said. “But I can’t even take care of my child. My child doesn’t even know me.” Mrs. Greene’s husband, Todd Greene, has since hired live-in help to assist with the care of their child and Greene herself.
Though officially diagnosed with an acquired brain in- jury, the root of the problem remains unidentified. Mrs. Greene expressed frustration at the dearth of information available, as well as her inability to be her own advocate. “The way the doctor explained it to me, he said, it’s like I, I, you know....” Without the ability to describe her illness and experience, Mr. Greene facilitated much of our conversation, and Mrs. Greene often echoed his words in the third person: “He said it’s as if she has several different parts of her brain blocked out at once.” Still, Mrs. Greene feels a sense of urgency in getting her story out to the world despite the challenges she may face in doing so, and explained her desire to speak out about it now because she’s “not sure what comes next.”
Medical officials have not gathered enough information to state with any confidence what is causing the injuries or what is to blame for their onset, but a report by the National Institute of Health suggested that surgical procedures or the use of anesthesia might trigger chromosomal mutations in those who are predisposed. Others suspect it could be brought on by stress. The U.S. government, which previously referred to Sunnyvale syndrome as an “anomaly,” has been subject to criticism from victims who sense a lack of urgency on a national level.
While public anxiety continues to grow, so does the budding trend of online content creators claiming to be victims of the syndrome. Many have drawn scrutiny as attention-seekers whose misrepresentations of the illness can have serious consequences, creating a culture where actual sufferers are met with disbelief and judgment. Still, while it may be easy to dismiss this niche community as chasing fame or followers, the popularity of this sub- culture hints at an anxiety much more widely felt and experienced. And while the vast array of potential symptoms leaves a lot of room for misdiagnosis, health officials caution that not everyone who displays such symptoms falls under the umbrella of Sunnyvale syndrome.
Social media is also a hotbed for conspiracy theories, ranging from speculations about 5G to bioweaponry to artificial intelligence, all of which seem to be driven by the same sense of social vulnerability and lack of control over world events. However, regardless of how outlandish some of these beliefs may seem, a few experts agree that they don’t think this outbreak has manifested naturally. According to Jan Carraway, a spokesperson for the Bureau of Medical Sciences, “There’s a lot of literature that indicates that factors such as electromagnetic radiation released by mobile and other communication devices can cause some of these symptoms and signs and brain injuries.” Carraway even suggested that there are international and domestic actors who might have the resources “to instrumentalize radiofrequency technology like this in today’s world.”
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When asked about these theories and trends, Mr. Greene said, “People say, you know, it isn’t real, it isn’t that serious. People tell her, ‘Oh, but you look fine.’” To which Mrs. Greene added, “She’s not.” And a lot of women like her are not.
Another victim, Annabelle Hopkins, served as a speech pathologist until her diagnosis led her to retire early on medical disability. She credits expertise in the field as the reason she has overcome some of the language impairments she has been dealing with since being diagnosed, and has developed strategies for coping, such as keeping a notebook and calendar in each room of the house.
On her day-to-day experience of living with the condition, Mrs. Hopkins says she suffers from blinding head- aches, balance issues that lead to nausea, and a fogginess that makes basic tasks difficult, and stated that “Some days I can’t get out of bed.” It’s a struggle for Mrs. Hop- kins to remember even the simplest, most basic information, but she acknowledged the support of her husband, who has quit his job to be her full time caretaker.
Mrs. Hopkins, Mrs. Greene, and many others are speak- ing out against the critics who believe their illnesses re- sult from mass hysteria, citing the confirmable injuries visible on brain scans.
Though Mrs. Hopkins struggled on the phone when asked for a statement, she and her husband subsequent- ly reached out with a joint written statement cautioning against skepticism and urging the public to demand more information from local and state agencies. “We need to humanize this condition so we can stop the spread and start finding a cure. We wouldn’t wish this on anyone.”
This week, the Los Angeles Times stated that there have been suspected cases in Rio de Janeiro, Brazil.
Purchase link: The Ginny Suite from Montez Press
