This Chef Won’t Let His Diagnosis Cripple His Career
All photos by the author.


This story is over 5 years old.


This Chef Won’t Let His Diagnosis Cripple His Career

Chef Dan Jacobs' frightening symptoms began less than a year ago, as he prepared to open his new restaurant in Milwaukee.

Over glasses of cava, in a 20-seat room tucked between the bar and the kitchen, guests gather for a culinary experience offered three times a week. It's a trick restaurant groupies are seeing more frequently as the market for fine dining decreases yet chefs' desire to offer plates of progressive food remains. Open a casual concept to pay the bills—in this case, DanDan, with veggie momo dumplings, schmaltz fried rice, and Peking duck—plus an elevated operation to feed creativity. That's EsterEv.


The eight-course meal starts with a trio of bites—pickled mustard tart with saffron mouse and cumin-lime foam, kimchi cracklins topped with egg salad as well as chicken skin slathered with chicken liver mousse and fried capers. Hours ago, those capers set Dan Jacobs, one of DanDan's owners, apart from the other cooks in the kitchen. "I should be able to do simple tasks like opening jars, but the strength is just not there," he says, passing the jar behind him for his sous chef to open. "It wants to be there, but it's not there."


Chef Dan Jacobs. All photos by the author.

The 38-year-old chef's symptoms started less than a year ago with difficulty walking up and down the stairs. A visit to a physical therapist led to another with his sister-in-law, a neurologist at the University of Chicago. There, he underwent a battery of painful tests, including having needles inserted into every major muscle group on the right side of his body, from his hand to his chef's knife tattoo-covered calf, and then getting shocked. "Everyone was talking about it in excited voices, but not good excited, and not telling me what the fuck's going on."

In February, a blood test confirmed a diagnosis of Kennedy's Disease, an inherited motor neuron disease that disrupts nerve cell transmission signals from the brain to the brain stem and spinal cord. Due to its rarity—about one in 40,000 people have it, according to the Kennedy's Disease Association—it's a difficult disease to peg and is often misdiagnosed as amyotrophic lateral sclerosis, or ALS. Unlike the latter, there is no treatment for Kennedy's Disease, aside from pain management for the muscle cramps that are an early and continuous symptom. His brother and niece were tested shortly later and also diagnosed. Women, however, are typically only carriers and rarely symptomatic.


"This sealed the deal on me and my wife not having kids," Jacobs says.


Jacobs (right) in the kitchen at DanDan.

Back in Milwaukee, Jacobs had a restaurant to open. He and his co-chef Dan Van Rite continued with a business-as-usual attitude. Jacobs rarely asks for help, but Van Rite—a quiet workhorse—is always ready to give it. "There are days when my hands don't open and close," Jacobs says. "I'm in so much pain that I can't open and close my hands, and he picks up the slack." Six months after his diagnosis, DanDan is now open and Jacobs has returned to his doctor. The cramping in his hands has turned into constant pain. He hopes for carpal tunnel, but no luck. It is, in fact, another progression of Kennedy's.

"That's when it really hit me, because it directly affects the thing I love to do most," Jacobs says. "More than anything else, I like cooking food—I was lucky enough to fall in love with something at an early age and know that's what I want to do for the rest of my life."

Jacobs began cooking after high school, while spending a summer in Door County, Wisconsin. Jacobs was hired in a restaurant that he describes like a scene out of Anthony Bourdain's Kitchen Confidential: A coked-out, pan-throwing executive chef and line cooks fucking women in the walk-in. (Well, maybe not in the walk-in, but either way, Jacobs was sold.) He went to culinary school and worked through some of the best restaurants in Chicago: TRU, North Pond, NAHA and Spring are all on his 20-year-long résumé. In 2011, he and his wife Kate Riley moved to Milwaukee, where he met three-time James Beard Award nominee Van Rite. The mutual lovers of Chinese takeout decided to open a restaurant dedicated to just that.


Pickled mustard tart, kimchi cracklins, and chicken skin slathered with chicken liver mousse at EsterEv.

Initial reception to DanDan was mixed. Critics praised the chefs' ability to reinterpret Chinese-American dishes with gourmet ingredients like housemade sausage and hoisin sauce. Reviews on Yelp were less generous with praise, criticizing the saltiness, spiciness, portion size, and price point of dishes. (Don't be surprised when the inside of a fortune cookie at DanDan reads, "Yelp sucks.") But that hasn't curtailed the restaurant's success; DanDan recently added lunch service, which means the inlaid wood tables illuminated by lacquered red lights are almost constantly buzzing.

"One of the hardest things I had to do was tell everyone about this," Jacobs says of his condition. It was only a matter of months before he could no longer hide the pain or disguise his increasingly raspy voice as a cold. He isn't t much of a crier, with the exception of the Chicago Cubs' recent World Series win and the day he told his staff that the most difficult part of his year was not opening a restaurant. He wasn't the only one shedding tears that day, but according to Jacobs, "Being a chef is many things, and one of those is being a teacher."


Jacobs' daily regimen.

As Jacobs accepts that his role will evolve from a cooking one into an advising one, he vows not to let the disease take away one thing: pasta-making. Back in the pastry kitchen, which does double duty as the kitchen for EsterEv, he rolls out thin sheets of dough. Dollops of housemade ricotta are placed in equal intervals. A quail egg yolk marks the center of each. Jacobs uses a paring knife to slice the top off each speckled shells, separating the yolk from the white in his hand—until a slight slip, or maybe a tremor, crushes the shell, sending yolk and white into the trash. He picks up another egg and places the yolk on the last unadorned spot of ricotta. Another layer of dough seals them into pasta pillows.


While guests dine on the delicate ravioli in brown butter, Jacobs pops a handful of pills: vitamins, keto replacement supplements, and cannabis-derived painkillers. The most common pain management for Kennedy's is barbiturate-based, a course of treatment Jacobs refuses due to his susceptibility to addiction. Rather than start down a slippery slope of painkiller dependency, he turns to cannabis supplements and hash oil for relief.


Jacobs carefully assembles ravioli filled with ricotta and quail egg yolks.

Dessert at EsterEv, one of the most finessed in Milwaukee, punctuates the meal: roasted pear with honey and vanilla that has the texture of silk and a flavor like the first day of fall. Pastry chef Jaceleen Latin-Kasper, like all of the members of the DanDan and EsterEv team, works to support Jacobs both physically and mentally. On days when his legs won't support him through service, he jokes about rolling around the kitchen on a Rascal or doing expo on a barstool. One day, another chef fired back, comparing him to the famously overweight Paul Prudhomme—and, suddenly, the joke went too far. "I was like, 'fuck you.' I was mad," he recalls. His contagious sense of humor is not as strong as the disease. "There's a 75-percent chance that is my future, but I'm never going to give up. I refuse to use a cane, even though I probably should some days." Those are the days he grapples with what the finality of his diagnosis means for his life and career.


In the DanDan kitchen.

"It's more than likely I'm going to lose my ability to walk. It's more than likely I am going to lose my ability to talk. It constantly sounds like I'm losing my voice, because I'm literally losing my voice. I have trouble swallowing. I wake up sometimes gasping for breath, because my muscles relax so much that saliva goes into my lungs and I'm choking." For all of those times, and the more difficult ones to come, he has Riley, his wife of eight years.

More doctors' appointments and a sleep study are on the horizon for Jacobs, as well as multiple fundraisers supporting Kennedy's Disease research, including a gala in March followed by an outdoor event during Summerfest. Otherwise, his plans are simple: Cook as long as his hands will let him, move forward as long as his legs will carry him, and teach others his passion as long as his voice can speak the words.