Melanie Carlson, 23, deals with her voices and unusual experiences with the help of EASA

By Anna Griffin, The Oregonian, Oct. 4, 2013

Melanie Carlson, 23

Melanie Carlson, 23

Melanie Carlson understands how the recent mass shooting at the Washington, D.C., Navy Yard happened. Same with the rampage at Sandy Hook Elementary School last year, and the one at an Aurora, Colo., movie theater two summers ago.

Carlson, a pretty 23-year-old with long blonde hair and twin rings in her lower lip, understands the seemingly uncontrollable forces – the literal voices – that can prompt a mentally ill person to lash out. She hears them all the time.

As she waits in line at a coffee shop or bobs to the music at a rock concert, unseen people tell her where to stand and where to look. While waiting for the bus or shopping at the grocery store, her fellow customers arrange themselves in precise geometric patterns, forming pyramids or squares. Green lines of what she guesses must be energy connect them.

“Whenever I notice it, they stop,” she said. “Everyone stops talking or moving. Everyone looks at me.”

These psychotic episodes are uncomfortable and incredibly isolating. They make Carlson want to scream or run away. Anything to feel some semblance of control and let the rest of us know that she knows what we’re doing.

In the cases of Newtown shooter Adam Lanza and, it seems, accused Navy Yard killer Aaron Alexis, failure to control mental illness had deadly consequences.

Carlson has learned to manage her schizophrenia, at least enough to talk about what psychosis feels like. In her case, finding the right mix of drugs and therapy to turn down the sound of those voices, and the coping skills to tune them out, will mean the difference between living a productive, happy life and one on the margins.

Doctors say that, like most of the more than 50 million Americans who lived with a mental illness last year, the only person Carlson poses a danger to is herself.

Hidden messages everywhere

Melanie Carlson saw a hidden message in her Wendy's cup. It turned out there was one -- the letters "MOM."

Melanie Carlson saw a hidden message in her Wendy’s cup. It turned out there was one — the letters “MOM.”

Maybe, she sometimes thinks, it’s because of what happened to her mom.

Carlson was 8 when her mother was diagnosed with terminal breast cancer and 15 when she died. She spent her childhood watching her mom waste away, try new treatments and suffer horrific side effects.

Her two siblings were older and better equipped to handle emotional trauma. She experimented with her appearance, going through phases as a hippie, a punk rocker, a rave girl. She suffered from what she views now, with a few years’ distance and more experience in the terminology of mental health, as anxiety. She was in sixth grade when she first heard the term “depression” and thought, “Oh, yeah, that’s me.”

“I was always sad,” she said. “I was sick all the time. I was always changing my look, never satisfied with anything. I think now that a lot of it was mental, not wanting to go to school, wanting to stay with my mom, wanting to avoid other people.”

After her mother died, Carlson started drinking. Not drinking as in one or two drinks, but drinking until she lost all control over her mind, until she would pass out and wake up not remembering what she’d done or how she had gottenwhere she landed.

“I was averaging half gallon of rum a day, a half gallon of vodka,” she said. “I didn’t want to be alive.”

She lived in a series of crowded apartments with friends, then in her car for a while. Through it all, she kept animals, mostly dogs. They were the only creatures who seemed to understand or whose company brought her peace.

The world had always felt a little … off … to Carlson. Strange things happened to her. Her drinking helped explain away how friends at parties seemed to suddenly align themselves in geometric patterns or march through the room at a weird, synchronized pace.

She thinks she was 18 or so when she suffered her first full-blown psychotic episode. They’ve grown worse and more frequent. She’ll walk into a shop, and think everyone has turned to look at her. At every concert she attends, she says, there comes a moment when the crowd suddenly parts, and she finds a solitary dancer gyrating an arm’s length away, or when everyone in the audience seems to be dancing the exact same steps in the exact same way. Everyone except her.

She’ll be watching TV or eating dinner, and notice a symbol that seems meant for her alone. “I see messages in everything,” she said.

A few months ago, for example, she was eating a meal from Wendy’s with her boyfriend when she nearly dropped her soda cup.

Carlson's recovery practices include writing about her thoughts and feelings.

Carlson’s recovery practices include writing about her thoughts and feelings.

“I freaked out,” she said. “There’s no other way to put it.”

When Wendy’s debuted its new logo last year, journalists and bloggers devoted to the art and science of marketing noticed a nifty bit of subliminal messaging that the fast-food chain has said was unintentional: Look closely on cups and take-out bags; the breezy script that forms Wendy’s ruffled collar appears to spell out the word “mom.”

Something in Carlson’s mind took this a step further: Her mother had red hair. She loved Carlson and worried about her. This was meant just for her.

“My boyfriend was like, ‘Melanie, not everything in the world is about you.’ But it made perfect sense that my mom would talk to me that way,” Carlson said. “Things like that happen to me every single day. I just see things that other people don’t. I don’t know why.

The brain’s mysteries

Medical experts aren’t entirely sure either. Neuroscience has shown that human brains are hard-wired to see patterns. It’s how we process our sometimes cacophonous, often confusing world.

Some fundamental miscue in Carlson’s brain chemistry gives her a heightened sense of these patterns and connections. Researchers don’t yet understand precisely why; they are years from being able to pinpoint which chemical imbalance or synaptic misfiring causes disorders such as schizophrenia or bipolar disorder.

“Any mental illness is just an exaggeration of an existing condition,” said Dr. Neil Falk, a psychiatrist with Multnomah County and Cascadia Behavioral Healthcare. “We all get sad, but not all of us are depressed. A severe mental illness is a severe exaggeration. And we’re not quite sure yet why that happens.”

The brain remains a mystery with intense, expensive and occasionally deadly consequences.

Melanie Carlson

Melanie Carlson

Two years ago, Carlson checked herself into Providence St. Vincent Medical Center after her paranoia and hallucinations made it impossible to even climb out of bed in the morning.

“I guess I came across as being really suicidal,” she said. “I guess I probably was.”

Even as she was being honest with her new health-care team about how she felt and what she perceived, Carlson still experienced the symptoms of what would eventually be diagnosed as paranoid schizophrenia.

“I felt like I was the only real patient,” she said. “Everybody else in there was an actor, the patients, the doctors, everyone.”

Doctors recommended therapy and medication, including Valium, which can deaden her voice to a sleepy monotone, and Risperdal, which lessens the intensity and frequency of her hallucinations but has other odd side effects, such lactation.

Large crowds, such as the one at a recent celebrate of the Multnomah County EASA program, make Carlson more likely to hallucinate and feel paranoid. She becomes very quiet and withdrawn when she feels reality slipping away.Beth Nakamura/The Oregonian

They also referred Carlson to doctors and social workers at Early Assessment and Support Alliance, a state-funded program administered locally in 19 Oregon counties that helps people ages 15 to 25 who suffer from psychosis. EASA clients work with a team of mental-health professionals on an outpatient basis for two years.

“We try to provide a soft landing into the mental-health system,” said Keri Ault, a mental-health consultant with EASA, which state lawmakers are working to take statewide. “We try to make that first experience a positive one.”

With EASA’s help, Carlson has focused on figuring out what kind of situations help calm her – she’s learned to meditate, started acupuncture and conducts biweekly meetings with her social worker while walking her three dogs – and avoiding those likely to to stress her out and conjure the sharpest hallucinations.

“Crowds,” she said, groaning. “Crowds still freak me out.”

Slow progress

Around EASA’s county offices, Carlson is considered a poster child for how the system is supposed to work. Her counselors talk about her successes: She lives independently, she stays busy with her pets and her hobbies, she works a part-time job, and she’s been sober for three years.

“She has developed these ways of understanding what is happening to her,” Ault said. “I see her as a survivor.”

Melanie Carlson (L) walks her dogs, with therapist Kari Ault .

Melanie Carlson (L) walks her dogs, with therapist Kari Ault .

Carlson doesn’t feel quite at that point.

“My boyfriend sometimes tells me I have a gift, but it’s definitely a curse,” she said. “Even when I feel like I understand the world in a way other people don’t, I’d give it up. I’d trade it in a minute to have a normal life.”

“A normal life” means a career, a college education, a full-time job. She dreams about living far out in the country, with lots of animals and space separating her from other people and the tension they cause. Right now, she has a mountain of debt and a vague desire to go back to school, but that’s tempered by knowledge that just walking across the campus of PCC Sylvania, a quick bus ride from her Southwest Portland apartment, would be overwhelming.

She’s already nervous about what happens next year, when her time as an EASA client ends. “I know I’m not going to be done with this in a year,” she said.

Strange things still happen, and still seem significant: One day recently, she was crocheting on the bus and noticed that she was sitting directly behind someone else who was crocheting, and that this person was also sitting behind someone crocheting. Three people, in a row, all doing the same thing. You might see it as a coincidence. She sees it as a sign, even if she’s not sure of what.

“It’s like living in a cross between the Truman Show and the Matrix, with maybe some Twin Peaks thrown in,” she said. “Everything everybody else says and does is scripted. I am in this false reality, and I can’t get out.”

Survival isn’t ending her hallucinations so much as learning to live with them. She’s training herself to ignore the noises in her head, or do the opposite of whatever the crowd tells her. She’s taken to calling the voices “my paparazzi.” And they’ve started saying different things.

“I was at a concert a couple of weeks ago, and what they were saying was positive,” she said. “It was cool. They were telling me, ‘Keep doing what you’re doing. You’re an artist. Keep trying.'”

Animals are Melanie Carlson’s closest and most trusted companions. She tries to walk her three dogs as often as possible. Beth Nakamura/The Oregonian

She wants to put the strange currents at work in her mind to constructive use. Carlson’s thoughts often come in rhyme – “Like Dr. Seuss or something,” she said.

Recently, she began typing these rhythmic reflections of her mental illness into her phone so she’ll have them later. She’s playing with putting her words to a beat, to music.

“I feel like I have some things that other people might be interested in hearing expressed,” she said. “I could record them. I might even be able to perform, because something about that makes being in a crowd seem manageable. I could do a spoken-word thing, or it could be like rap.”

These aren’t hallucinations, but daydreams. The kind all of us have.