Profiles

The Kid Who Couldn’t Eat

A year without eating only made John Capecelatro a better chef... and a better friend.

Still boy-faced despite his luxuriant beard, John Capecelatro will tell anyone who listens he has two passions: coding and cooking.

As a product engineer for PillPack, the home pharmacy healthcare startup, John spends his days serenely lost in a cathode maze of code, usually with headphones on to shutout the world outside. (Disclaimer: Folks is owned by PillPack.) But it’s when you watch him in the kitchen, whisking sauces and flipping sautés with flair, that you suspect that maybe John was really born to cook, not code…. a theory borne out by the fact that he is the son of a classically-trained chef.

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John practices his knife skills.

Ask John, though, and he says that both cooking and coding satisfy the same part of his brain. Whether programming a new feature for PillPack customers, or grilling some barbecue for his friends, “there’s a very real relationship between how hard you work and what you get in the end,” John says. “They’re both really very meditative to me.”

Still, even John has to admit that cooking, not coding, is slightly more precious to him. Programming’s a solitary act – just you, a workstation window, and the cold binary logic of the machine. Cooking, though, is inherently social, and you only need to hear John’s laugh to know he’s a social guy.

“There’s just nothing I like more than cooking a big dinner and having beers with some friends,” John says.

That’s something most of us value, but in John’s case, there’s a special reason why he put so much stock in the sensuality and sociability of food. Throughout his life, there have been months at a time when John couldn’t eat food at all.

Getting Crohn’s

John has Crohn’s Disease, an inflammatory bowel disease that can cause abdominal pain, acute diarrhea, fever, and even skin rashes and arthritis. It’s more common than you’d think. About 3 people out of every thousand have Crohn’s Disease, with a surprisingly strong political representation including President Dwight D. Eisenhower, House representative Dennis Kucinich, and former mayor of Boston, Thomas Menino. Despite this, and his natural likability, John says he’s never really thought about a career in politics. But he has spent a long time dreaming about food, especially when his Crohn’s diagnosis required him to subsist without food for weeks on end.

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Glasses-off.

It was a blissful summer of wake boarding and water skiing when John first showed symptoms of Crohn’s Disease. Only nine at the time, John was spending the months between third and fourth grade at his family’s lakeside cabin near the Adirondacks when he started having searing stomach pains. “It was very different from the typical third grader’s self-diagnosis of ‘I don’t feel good!’” remembers John. “I was spending a lot of time in pain on the toilet. And it was scary. As a kid, you have just so little context. You don’t know: is this just a stomach flu, or is something systemically wrong with you?”

A doctor soon confirmed the latter. Along with having Crohn’s Disease, John had a raging abscess infection that required surgery, and loads of pills. And then, for quite a few years, John’s Crohn’s Disease lay dormant. It didn’t really affect his life too much: he wasn’t known, for example, as the kid with Crohn’s Disease. “My friends knew, I think, but I never had this internal debate about whether I should tell people,” he says. “It had no physical symptoms, so it just never came up.”

A month before he started his junior year of high school, though–during yet another blissful lakeside summer in the Adirondacks–John’s Crohn’s Disease stopped being so considerate.

“I’d just learned to barefoot water ski, which involves the boat going extremely fast… people break bones all the time because that’s just how fast you’re going,” John recalls. Flying through the air and slamming hard against the water on his side, John didn’t break any bones, but he seemingly ruptured something. He had to be dragged back onto the boat; the agony almost made him pass out.

Even John's bike gear is covered in food references.

Even John’s bike gear is covered in food references.

A Year Without Eating

John’s never been quite sure if that incident caused, or merely exacerbated, the Crohn’s flare-up that he spent most of the next year fighting. At the very least, it wasn’t clear right away what was wrong. As the pain grew, and John grew weaker, his doctors spent the next few months trying to treat his Crohn’s with what had worked before: mostly Prednisone. John started shedding weight: between summer and winter, he lost 55 pounds. “There were times when I’d get on the scale at night, and see I’d lost a pound or two since the morning,” he says. “It was that rapid.”

By December, John and his family were so desperate for some kind of improvement, they flew out to visit a doctor in Cleveland who’d had some experimental success treating Crohn’s with bacteria. “He took one look at me, and said: ‘Bad news, this isn’t treatable by any course of medication.’”

Surgery followed surgery. The doctors removed a small infected loop of John’s bowel. One consequence of the surgery was that while his bowel healed, John couldn’t eat food. He got all of his nourishment delivered directly to his veins through TPN, a sort of nutrient slurry that he carried around in huge backpacks and which was pumped directly into his body through a PIC line. (On his arm, John still has a small constellation of scars, showing where the PIC line ran to his heart.)

Flipping some vegetables in the kitchen.

Flipping some vegetables in the kitchen.

Between his multiple surgeries, John went the better part of a year never eating anything at all. His longest streak was 74 days in a row: an eternity for a teenager. “Physically, you’re not hungry at all, so technically you’re fine,” he remembers. “But emotionally, you’re constantly starving, because there’s that dopamine-addled part of your brain, crying out for a hit of your favorite food.”

More than just the physical pleasure of eating, though, John says the hardest part of his year spent not being able to eat wasn’t the starvation… it was the loneliness. “If you think about it, so much of our life is structured around food: it just has a huge social component,” John says. “And that’s doubly true when you’re a teenager. So much of a high schooler’s social life is eating pizza, or pounding down wings.” And while John was lucky enough to have friends who didn’t ostracize him for being different, every empty plate set for him at a restaurant or at a family dinner was a reminder that he was missing out on something. That he “couldn’t participate in something that is just an intrinsic part of the human experience.”

Savoring Food Again

These days, John’s Crohn’s Disease is well managed. Asked if he has any dietary restrictions, he laughs. “I eat whatever the fuck I want!” (That said, he has a particular fondness for Sour Straws and Sour Patch Kids.)

John relaxes with a friend.

John relaxes with a beer and a friend.

But even so, John has never forgotten how intertwined food and friends are in the tapestry of his life. Which is why, when John’s not coding, he’s usually found in his kitchen or the backyard grill, surrounded by friends, frying up a plate of Nashville style hot chicken, smoking some pork shoulder, or whipping up some Utica style greens.

 With Crohn’s Disease, there’s always the possibility that, sometime in the near future, John might again be staring at an empty plate with every meal. To John, that just makes every meal cooked and shared with his friends all the more savory.

All photos by Jess Benjamin.