Jordan Plotner’s brain damage cured his fear of darkness

When Jordan Plotner (’12) was young, he slept with the lights on. For him, the unknown was just too terrifying.

“I could create many monsters in my head very quickly,” he said. “Being alone in silence and darkness with myself was not just unappealing, but it was— it was horrifying.”

Now, he spends hours every day meditating blindfolded with earplugs in. Being alone in a dark silence is the way he escapes from his stressors, accessing himself and seeking answers to his biggest unanswered questions, of which he has many. Instead of horrifying, it’s comforting.

How Plotner thinks

Plotner often detaches from the outside world. His phone has been shut down since New Year’s. He heard former President Donald Trump was impeached and that there’s a new president – but that’s about it. Separating from others allows him to spend time alone with his thoughts; a place without boundaries where no one can tell him he’s wrong.

Plotner said he has always thought differently from others. English Teacher Stephan Pochatek was the first to notice. The first time Plotner could “get weird” in his thinking was in Potchatek’s First Classical Thought elective.

That was Plotner’s first English class in which silence was encouraged. He specifically remembers one uncomfortable silence during a first-period class. Interrupting the stillness, Potchatek took a mug full of his morning coffee and poured it out onto the Harkness table, leaving Plotner utterly confused. Potchatek told the class, “I just wanted to see what would happen.”

Potchatek showed Plotner a way of thinking that has led him to many places in his life, physical and otherwise. After graduating from ASL, Plotner took a gap year.

Life after ASL 

Among his many adventures that year, he worked as an avocado farmer on a kibbutz in Israel at the same time conflict erupted with Palestine. Plotner lived 15km from the Gaza Strip, and while he may have been there to farm avocados, he ended up spending more time in a bomb shelter than he would have thought. 

Plotner said one weekend, somewhere between 700 to 1,000 missiles were launched in his general direction. For most, that would be the only life-threatening story of their 20s. Plotner has another, but it came at least a year later.

Plotner decided one thrill-filled gap year wasn’t enough, so he begged his parents to let him take another. They agreed under two conditions: one, he had to get his driver’s license; two, he had to pay for half of the year’s expenses. He passed his driver’s test and drove cross country to the one place that might have more avocados than Israel: California. There, he found work as an assistant music composer.

He began university at Yale the following fall. During his sophomore year, he said while talking with friends on an ordinary Sunday evening, a “fog” came over him – the only way he knows how to describe the feeling. Baffled, he tried to figure out what was happening. He concluded that dehydration was giving him a headache, so he chugged a bottle of Gatorade and went to sleep.

The next morning, he couldn’t sit upright. It was clear he was dealing with more than a headache. He felt the “most excruciating pain” he had ever experienced. 

Living with a neurological condition

Over the next four years, Plotner would see 60 doctors in two countries, none of whom knew what was wrong with him. Or worse, some told him it was all in his head. 

“Doctors are not necessarily the ones to say ‘I don’t know,’” he said. “So I was a guinea pig for all sorts of medication combinations.”

His symptoms and their intensity came in waves. He experienced dementia, and the “hazy brain fog” ebbed and flowed since that Sunday night. Physically, he was often bedridden. On good days, he could get up and walk around for short periods of time.

Nothing was working, so Plotner found ways to cope. As a second-semester sophomore, Plotner took essay-based courses so that he could take things more at his own pace. That way, he had less chance of his memory completely escaping him when he showed up on test day. Plotner explained that his condition only impairs short-term memory, hence he can remember vivid details about that random first period English class in high school but not what he studied only the night before a test.

After he graduated from university, as he was learning how to live with his disease, he moved to Los Angeles to start a career in film and video composing. He facetiously remarked that it was a great time to go into music, a “safe and secure” profession when he was facing the reality of lifelong brain damage.

“It was kind of struggling to, to make ends meet as a composer while also struggling to like stay on my feet as a human,” he said.

Plotner said the ordeal was exhausting not only because of his condition, but also because he constantly needed to muster the energy to face frustrating challenges. At times, that begged a weighing question.

“Do I need to go to this doctor’s appointment?” he said. “Because likely, my insurance won’t cover it. And it’ll be, it’ll be like more medical debt. Or do I want to just like, stay on my couch and hang out for a bit?”

He said he reached a point where he felt like the traditional medical route had failed him. After one particular appointment with a spine specialist, he decided to search for the answer himself.

“I was like, f*** it, I’m, I’m figuring this out,” he said.

He read medical journals, learned how to read his own MRI scans and took neuroradiology courses online. He said he’s stubborn and loves to solve puzzles – two traits that all of a sudden proved essential. 

After years of wondering what was causing his insufferable symptoms, he discovered he had Ehlers-Danlos Syndrome, which, according to the NHS website, “encompasses a set of rare inherited conditions that affect connective tissue.” In Plotner’s case, it effectively means his head is not screwed on tight enough.

Not only did this discovery unlock the secret to his current pain, but Plotner said it elucidated unexplained events from his childhood. 

In middle school, the day before pre-season tryouts for football, one year he was kicking the ball around with his dad. When he went to kick, his knee partially dislocated and he collapsed. This continued to happen. 

Plotner only now understands it was because of his EDS. Being unable to play sports forced an identity shift away from athletics and into music, a discipline he now relishes. Although he may not play in the Premier League, he has worked on projects with big names such as Hans Zimmer and Daft Punk.

Plotner underwent cervical fusion surgery to treat his EDS, where surgeons drilled, as Plotner frankly put it, “some legit Home Depot screws” into his spine. The surgeon was also able to confirm Plotner’s unofficial self-diagnosis of EDS, meaning his stubbornness had indeed paid off.

He recovered from surgery in Connecticut, mostly alone. He went on a lot of walks and watched a lot of TV, all the while wearing what he refers to as his “cone,” a neck brace that supported his head. He calls himself an “OG self-isolator,” before social distancing and quarantining were commonplace.

“I never really enjoyed walking before,” he said. “It was always just like a means to an end. I had to walk to get to a place. But this was the first time I genuinely found inspiration in walking and just observing.

“It was the first time in my life where I felt like I had, in some ways, I had space to explore in my head,” he said.

Even a saga as eventful as Plotner’s found its way to somewhat of a fairy-tale ending, fit with romance and all the trappings you’d expect.

“That Sunday night, … if I was to say, like, ‘Howdy, I’m Jordan from the future, in five minutes, s***’s gonna hit the fan, but then don’t worry, in like five years you’ll be living in LA, in a band, with the woman you love making music,’ I would have been like, ‘Who are you?’” he said.

But that’s not to say it was smooth sailing. He felt dejected, depressed and hopeless along the way – all his words.

Even after successful surgery, his condition still affects him, and he has many analogies to describe what it feels like to be Jordan. His body is a Rubik’s cube. When he wakes up some mornings, his hip will be dislocated, and in order to relocate it, he has to move his shoulder.

Inside Plotner’s mind, on the other hand, is like dealing with Apple earphones once they’ve been in your pocket for too long. It’s a little tangled.