Our writer straps on the schizophrenia machine
You enter a pharmacy to have a prescription filled—you’ve lost your medication and need to get a refill. You’re a week out from when your next refill is due. Your insurance and doctor have to be called. The pharmacy is housed inside a typical supermarket.
Looks like a typical errand. Then you hear that voice in your ear: “Loser!”
You quickly turn toward the voice, though no one is there. Another voice berates you: “You’ll never get it together!” And another growls, “Where are you going?! You never should have come here!” And so it goes, angry voices, up and down the produce aisle, all the way back to the pharmacy.
That scene, from a “virtual hallucinations” simulator, is just a taste of what awaits visitors to Turning Point Community Programs’ Health & Wellness Fair on Thursday, September 28. The symptoms simulator takes the viewer into two scenarios—a bus ride and a visit to a pharmacy to refill a prescription—as a person with untreated schizophrenia, whose symptoms include auditory and visual hallucinations. Both experiences elicit feelings of hyper-sensory confusion, immense frustration and fear in the participant. The goal, fair organizers say, is to increase understanding of the illness and empathy toward people who live with its symptoms, as well as raise awareness about the effectiveness of symptom management through certain medications.
In addition to the symptom simulator, the fair will feature free health screenings (hearing tests, blood pressure, body fat and breast health); information booths; resources for children, teens and adults; and music, arts and crafts. Lunch will be sold.
Translators fluent in Hmong, Russian, Cantonese, Vietnamese and Spanish will be on hand to discuss health services.
“Traditionally, there’s been a huge cultural stigma about mental illness” among those in the Asian communities, said Judy Fong Heary, executive director of Asian Pacific Community Counseling. “Health fairs like this—bringing services and providers out into the open allows people to feel safe. Having people speak their language helps demystify things, and there’s more likelihood they’ll take the chance and get services.”
The Virtual Hallucinations experience was designed by Janssen Pharmaceutica.
“It’s as close to symptoms as I’ve seen simulated,” said Sylvia Carleton, personal service coordinator for Turning Point’s Homeless Intervention Program. “The first time I tried it, I had to stop it because it was eerily real to me.”
At 52, with a master’s degree in marriage and family therapy from the University of Phoenix, Carleton has personal experience with both auditory and visual hallucinations. Both are a result of her schizoaffective disorder, which Carleton describes as combining the mood swings of bipolar disorder with the paranoia that accompanies schizophrenia.
Although she takes a cocktail of medications now that controls her symptoms, Carleton said that in the past when she has been unmedicated, she’s heard voices telling her to hurt herself, heard her name called out and heard other “disconcerting sounds.”
The simulator uses wrap-around video goggles and stereo headphones to immerse the wearer in a world experienced by someone suffering from schizophrenia. Sounds, words, lights and images come fast, often with no rhyme or reason. In both the supermarket and bus-ride scenarios, the sheer volume of sounds and words competing for your attention is cacophonous. The voices aren’t just loud and fast; they’re hurtful, judgmental, fearful and negative. The television set in the pharmacy waiting area is scrambled and screaming, “They’re coming to get you!” while voices behind you tell you the pharmacist who is filling your prescription is actually working to poison you.
On the virtual bus, a nurse appears out of nowhere, asking mockingly if the ride is “nice for Your Highness,” while the bus driver’s routine call to his dispatchers sends you off on a flight of reasoning that he’s radioing ahead to the FBI to let them know your whereabouts. Another voice cackles, “How do you expect to work? You can’t even keep track of your medication!” A motorcyclist pulls up alongside the bus, yelling, “Dude! Off the bus now!” and for the entire ride, the words “loser” play over and over in your head.
At the conclusion of the virtual bus ride, the driver tells you your stop has arrived. All is quiet now, but you’re unable to respond. Or move. It’s as if you’re frozen in fear now. The bus driver questions you again about this being your stop and then says, “Hey, you don’t look so good. Maybe you should’ve gone to the pharmacy sooner, huh?”
The experiment ends; the wearer feels drained, but there’s a measure of sadness, too. After all, you just wanted to get to the pharmacy.
Carleton says she understands the feeling. “Unmedicated, experiencing those types of symptoms, trying to get tasks done is almost impossible. And that’s how people lose everything they have and end up on the street. They’re literally tilting at windmills.”
Through this virtual tool, Carleton hopes family members and others in the community will be able to see how extreme symptoms can be, “so they’ll understand how their loved one’s behavior can be so extreme at times and begin to look past the behaviors and get to where they nurture that person to health.”
This story has been corrected from its original print version.