After discovering his own rare disease, alum unites others through virtual ensemble

During his sophomore year at Yale, while talking with a group of friends, Jordan Plotner ’17 B.A. felt overcome by a brain fog. A membrane surrounding his spine and brain had ruptured, causing cerebrospinal fluid to leak and his brainstem to compress against his skull. At the time, he assumed it was dehydration, but in the months that followed Plotner could hardly stand upright or leave his dorm room bed. As the school year wound to a close, he had to postpone two of his finals. Countless inconclusive medical tests followed, and the next semester Plotner signed up for courses that relied more on papers than exams so that he would not have to take a test on a day when his memory and speech failed him.

It wasn’t the first time Plotner had encountered physical difficulties. The once-athletic youngster from London had been forced to abandon sports in high school after a soccer-ball kick led to a dislocated knee, or when pinched nerves in his shoulder and elbow prevented him from pitching a baseball, but he had taken it in stride and adjusted, turning his passion to music. This was different.

“I knew from the beginning there was going to be a level of difficulty in figuring this thing out,” Plotner says. “I had seen many doctors and most of them attributed my pain to my workload and stress. It became my mission to prove that something was physically wrong with me.”

Plotner began researching, reading scientific papers online, emailing his doctors whenever he discovered a promising lead. He zeroed in on disorders related to the spine and brain. When he wasn’t researching, he immersed himself in his music, composing in a mini studio he had set up in his dorm room that featured a keyboard, speakers, microphone, guitars, and toy instruments — a train whistle, a slide whistle, and clappers. He made spreadsheets of various markets for commercial composing and sent mass emails to hundreds of prospective clients across Europe, Japan, and Dubai. A few responded, and Plotner began building his portfolio. He has since composed music for numerous Hollywood films and commercial projects for artists ranging from Marco Beltrami ’91 YSM to Hans Zimmer to Angelina Jolie to Daft Punk.

“Whenever I was not feeling well or feeling anxious, I used work to get myself out of it,” Plotner says. “That is my coping mechanism.”

Plotner also pushed his creative limits in his Yale classes. He experimented with form and style in Alina Simone’s English class. He discovered his love for screenwriting in another class, and for his thesis in American Studies wrote a feature-length screenplay called “Sammy’s Field,” which explores memories of the Holocaust and Little League baseball using magical realism. “It’s the first time I felt like I was living in the world of the story I was creating,” Plotner says. He also became engaged in courses at the Yale Center for Engineering, Innovation and Design, where he won accolades for an instrument he designed from beer bottles, valves, arcade buttons, and a computer battery called “Helmholtz’s Harmonious Homebrew.” And he worked with a team in partnership with Yale-New Haven Hospital for a “Medical Device Design and Innovation” course to improve pediatric blood draws inspired by the sucking mechanisms of leeches. “I became fascinated with how they suck blood, and their Y-shaped bite pattern,” Plotner said.

Making art from pain

During a medical appointment in Los Angeles, a physical therapist told Plotner that his head seemed to bend more than was typical. It was an important clue. He began looking into craniocervical and atlantoaxial instability which led him to an online lecture called “Differential Diagnosis of Headaches in Ehlers Danlos Syndrome [EDS],” delivered by a renowned neurosurgeon. EDS is a disease that weakens the body’s connective tissue and can impact the joints, organs, and skin. After analyzing his MRI and CT scans, and comparing the measurements to those outlined in the lecture, Plotner found the evidence he’d been seeking. The neurosurgeon confirmed that he had EDS and would need spine and skull surgery to correct its impact on his brain.

Plotner dove back into his creative pursuits to combat his anxiety, using a GoPro camera to film his daily experiences for a documentary on chronic disability. He also processed his experiences into a new piece of music he wrote for orchestra and voice — a virtual musical ensemble he called The Resonance Project — that would become the centerpiece of the film. Through his website, he has invited other musicians with chronic disease and disability to contribute to this virtual ensemble, with downloadable sheet music for instruments ranging from piano, to tuba, to piccolo and double bass, as well as lyrics, and directions for uploading their video clips. “With this project, all of my emotions and what I am feeling physically and emotionally is part of what I’m creating,” Plotner says. “And if I can help someone find a diagnosis and be spared what I went through, it will be worth it. This is about raising awareness not just for EDS, but all rare diseases.”

He says The Resonance Project draws inspiration from, among other things, a cognitive science class he took in his first year at Yale in which he was assigned the book “Gödel, Escher, Bach: An Eternal Golden Braid” by Douglas Hofstadter. “I never read it until after the surgery,” Plotner admits, “but it blew my mind, revealing new ways of encoding messages and communicating ideas on different levels. In Resonance, I tried to ensure that the music was supporting and advancing certain concepts introduced in the lyrics. For example, utilizing the Fibonacci sequence in the music to further emphasize the lyrical concept that I am formed from everything that came before me.”

His lyrics read in part: “Hidden in the pain, like the breath within the rain, lives the poem we can’t explain, the silence we don’t know. But in us harmonic limbs resonate the divine, sing me your fractal hymns and I will sing you mine.”

Plotner provides a metronome for musicians to record by. Already he has received submissions from Los Angeles to Tokyo, and he is in touch with orchestras for disabled musicians and ensemble musicians with mental health issues. “I’m more of a private person,” Plotner says, “so all of this has been a bit new. But this is about raising awareness for rare diseases. A patient is not crazy just because a doctor can’t identify what’s wrong.”

Find more information on The Resonance Project and directions for how to submit a recording on the project’s website. View the official trailer for Plotner’s forthcoming documentary about The Resonance Project below: