Alumnus with rare neurological disorder wants to help others

It starts innocently enough. Without warning the walls of the room around you stretch out and away. The room doubles in size. The bed beneath you grows, too. Your arms stretch before you like Marvel’s Mister Fantastic.

Joel Greenup, who graduated this spring with a B.A. in psychology, has experienced these symptoms on and off since he was 6.

Greenup is no Reed Richards, these aren’t dreams, and he hasn’t been anywhere near a rabbit hole.

“All that I really understood was this wasn’t normal and something was wrong,” Greenup said.

Greenup has Alice in Wonderland Syndrome, a rare neurological disorder named for the Lewis Carroll novel, Alice’s Adventures in Wonderland. As an undergraduate, he’s researched neurological conditions and ultimately wants to continue this work while studying in a neuroscience Ph.D. program.

Joel Greenup

People who are diagnosed with this disorder experience something akin to what Alice does in the book. They have a diminished ability to appreciate the size of objects and perceive that objects either grow or are farther away. Objects may appear flattened or elongated. Colors might become exceptionally bright. Time may speed up or slow down. But unlike Alice, no cakes or fancy potions are needed.

Greenup remembers his first episode of Alice in Wonderland Syndrome as clear as day. It started while he was lying on a hospital bed recovering from surgery for an unrelated condition. His mom had gone to the bathroom just a few steps away.

Without warning, the room started to grow. His arms stretched out. Greenup felt a sense of paranoia.

“I became frantic and wanted to uncover my legs for some reason, so I start unfolding my blankets and I can’t find my legs. I’m removing fold after fold of blankets and I’m getting progressively more scared,” he said.

“Finally, my mom finished in the bathroom and she goes to walk across in front of my bed but I perceive that she’s running in front of me,” Greenup added. “It took her walking at a turtle’s pace for me to perceive she was walking normally.”

All this lasted no more than two minutes.

The doctors gave Greenup’s mom a diagnosis that night. Then the doctors told them something jarring – they knew almost nothing about the disorder.

In fact, Alice in Wonderland Syndrome is so rare that the experiences of people with the disorder have been referenced in scientific papers on no more than 169 separate occasions, according to the National Institutes of Health. Contrast that with breast cancer, which has been studied in almost 300,000 scientific papers.

At 6 years of age, Greenup didn’t think much about the disorder. Born with spina bifida, Joel was unable to walk. Now 21, he’s undergone more than 60 surgeries to address a variety of health concerns including broken bones and issues with his bladder and kidneys, to name a few. He’s also had a cerebrospinal fluid shunt inserted in his brain and a tube going down to his torso to help circulate spinal fluid. Greenup hoped to one day master the use of crutches to help with his mobility but his hopes were dashed following a surgery to treat scoliosis in the fifth grade.

But as Greenup grew older, he became curious about Alice in Wonderland Syndrome. He wondered why it kept affecting him as many as three times a year. By the time he entered college, it was one of the only things he could think about.

As an undergraduate, Greenup wanted to make a difference in the lives of other people like him. He looked for a professor who could mentor him and guide him on a quest to help document the commonalities of people who have Alice in Wonderland Syndrome.

“Maybe I’ll have the opportunity to figure out what this is,” Greenup said.

Through the Honors College, he was paired with Bennett Schwartz, a professor of psychology in the School of Integrated Science and Humanity. Greenup also began collaborating with a neurosurgeon at a local hospital, where he is surveying 50 patients with brain tumors or with cerebrospinal fluid shunts.

“Coincidentally to my favor, brain tumors are one of the things associated with the syndrome,” Greenup said. “If there’s some sort of disruption to those areas of the brain, you can assume on some level that the symptoms of AIWS may show up at some point.

“It’s almost like a symbiotic relationship, Alice in Wonderland Syndrome is always paired with something because we don’t always know what alone causes it,” he added.

Now that Greenup has graduated from FIU, he’s taking stock in what he’s accomplished and what’s next.

“I don’t want to drop what I’ve been working on for two years,” Greenup said. “My long-term goal is to take this body of work and shine a light on Alice in Wonderland Syndrome, which has been shrouded in so many other ailments. I want to help make it its own thing by finding out what are the things in common across the board for people with the disorder and to find its own unique cause.”