Chef Ed Scarpone can fix what’s wrong in any kitchen. What happens when he’s diagnosed with a disease with no real cure?
By Laura Hayes
“It felt like there was a rubber band around my arm,” Ed Scarpone remembers. The 32-year-old culinary director of Schlow Restaurant Group was back at the doctor’s office in March 2018 following a harrowing episode the month before when he had trouble walking. He couldn’t get up the stairs or put on socks. His left foot started to drag. An aggressive course of steroids helped, but then his arm went numb.
A neurologist examined him. “He’s like, ‘Look up,’” Scarpone recalls. “I’m staring at the ceiling. Then he’s like, ‘Look down.’ There was a needle stuck in my leg. I hadn’t felt it. He had a pin and was dragging it up my leg and the bottom of my foot. It wasn’t until that moment that I realized I couldn’t feel my leg at all. I was also having trouble speaking. My tongue was asleep. The doctor said, ‘We’re going to bring you in for an MRI now.’”
Scarpone’s culinary career started in Connecticut, when he chose an after school job at a bakery over one at Circuit City. “My dad kept telling me if you work at the bakery you’re going to wash dishes and clean pans,” Scarpone says. “I ended up baking, decorating cakes, waiting on customers, filling cannolis, the whole nine yards. I loved it.”
His parents had a difficult marriage and Scarpone eventually moved in with his Italian grandmother at age 16. She helped solidify his love of cooking.
After high school, he didn’t know if he could afford to attend culinary school and questioned whether it was the right path. “I always wanted to be a doctor or a social worker—something where I’d be helping people,” he says. “But my dad always told me you should do what you love and anything you do, you can find something that makes people happy. That stuck with me.”
Scarpone graduated from Johnson & Wales’ College of Culinary Arts. After a short stint cooking abroad, he moved to New York to work for restaurateur Daniel Boulud. Scarpone had interned with the French chef at DB Bistro during school and landed a full-time sous chef gig at another one of his restaurants, Café Boulud. That’s where he first met Alex Levin, a pastry cook who would eventually become his best friend. The two spent five intense months in the kitchen together.
“When I first met Ed, he was super talented and a little aggressive,” Levin says. “He was studious and at the same time, very much the teacher. It was clear he was a star in a way because he was so young and had so much responsibility.”
After five months at Cafe Boulud, Boulud promoted Scarpone into an executive sous chef position at DB Bistro, where the kitchen had lost its head chef. “I was the pinch-hitter,” Scarpone explains. “That’s always been my specialty—being able to fix problems very quickly.”
Any time a big job opened up in Boulud’s company, Scarpone sought it out, including when Boulud opened a restaurant in D.C. In 2014, the restaurateur named Scarpone, then 26, executive chef of DBGB Kitchen + Bar in CityCenterDC. “I had only been to D.C. for an eighth grade field trip,” he says. “All I remember is sneaking out of our hotel room and eating at the Hard Rock Cafe.”
Scarpone quickly gained the respect of other D.C. chefs while working at DBGB. But something was missing. “I always wanted a Michelin star,” he says. “That was a dream. That’s something that can drive you to do just about anything crazy.” Boulud’s company didn’t have any open positions with star-earning potential, so after almost a decade of working for the company, Scarpone gave six months notice and left DBGB in January 2017.
Scarpone then spent a year as executive chef of Fiola, Fabio Trabocchi’s Italian fine dining restaurant that earned its first Michelin star in 2016. It wasn’t the right fit, but it did lead to a fortuitous meeting.
Before Scarpone left, restaurateur Michael Schlow dined at Fiola at a time when Scarpone wasn’t in the kitchen. “The first thing I came away with was this team has a very good chef,” Schlow says. “The food was executed at a super high level without him being present. That’s always impressive to me.”
Schlow hired Scarpone in January 2018. “They were having issues at The Riggsby and wanted that restaurant to be reinvigorated and come back to where it was,” Scarpone explains. He successfully played the role of fixer again. The Riggsby landed the 56th spot on Washingtonian’s 2019 “100 Very Best Restaurants” list. Schlow also deployed Scarpone to up the quality at Tico and tapped him to open sushi restaurant Nama.
“He’s the guy that you want to send into battle, whether it’s a restaurant opening or ongoing operations,” Schlow says. “He’ll jump into whatever it is, head first, and won’t come up for air until it’s fixed.”
Scarpone likes rotating through restaurants. “You get to see a lot more people learn things and that’s always been my favorite part of the job,” he says. “Watching someone learn something whether with you or on their own is a pretty good feeling. In cooking, you get to do that every day.”
When the doctor returned with his MRI results, Scarpone learned he would face a challenge he’d never be able to fully conquer. He has multiple sclerosis (MS), a disease of the central nervous system that impacts the brain, spinal cord, and optic nerves. It can be unpredictable and debilitating. “I wanted to throw up,” he says. “I sat in this room with a doctor I didn’t know telling me this diagnosis I didn’t want to hear.”
The news came on the heels of several heartbreaking years for Scarpone. His mother was diagnosed with breast cancer, which she’s still fighting; the grandmother who taught him how to cook died; and a close friend suffered a fatal heroin overdose.
According to the National Multiple Sclerosis Society, the disease impacts about a million Americans. There are four different types of MS. Scarpone has the most common version, relapsing-remitting, which is characterized by episodic attacks followed by remissions. “Every time it comes it takes a little piece of you away that you can never get back,” he explains.
Scarpone’s doctors told him to avoid the internet. “The first thing I did was Google ‘Chefs with MS,’” he says. “I started reading about everybody and anybody that had this problem because I wanted to know if it’s possible to still be ‘regular.’”
He also turned to online support groups, where he says he encountered some strange people. “People will reach out to you and say, ‘I cured my MS by eating vegan,’” he says. “I’m like, ‘That’s not going to happen. Even if that’s the cure, I’m not eating vegan. Next.’”
Despite the pain, Scarpone hardly missed work. “When my right leg started to heal, the nerves started to fix themselves a little bit and it felt like my leg was in a pot of boiling water,” he says. “You can’t think, you can’t have a conversation, because all you’re thinking about is how much it hurts.”
Scarpone says his team at The Riggsby picked up whatever slack they needed to as the symptoms from his first major attack subsided. “Mollie was there every step of it,” Scarpone says. Mollie Moore, who’s now employed at Little Pearl, was the chef de cuisine at The Riggsby. She was one of the first to notice that Scarpone was frequently fatigued in February 2018 and seemed to have near constant doctor’s appointments.
Eventually Scarpone told Moore he had MS. Moore could empathize; she has an aunt with the disease. “There were some days that were harder than others,” she says. “I’d look at him at 9 p.m. and say, ‘You can go home. You don’t need to be here suffering in silence.’”
She remembers one particularly difficult day, when Scarpone was on the computer, hitting the refresh button waiting to hear back about lab results. He was hoping he didn’t have a specific type of bacteria present in his brain that would preclude him from taking a medication for MS that many patients find helpful. The drug safeguards myelin sheaths, sleeves of fatty tissue that protect nerve cells. A friend of Scarpone’s with MS called it a miracle drug. The results came back. He wasn’t eligible to take it.
“I put my arms around him and hugged him,” Moore says. “He started to tear up and I did too.” She tried to offer words of encouragement. “He is probably the strongest chef mentally and physically that I have ever met,” Moore says. “He’s like, ‘I’m going to persevere. I’m going to beat this. I am a chef. I use my hands. I use my feet. This disease isn’t going to take away who I am.’ He refuses to let it.”
While Scarpone busied himself in the kitchen, he couldn’t quiet his mind: “Could you be in a wheelchair in a kitchen? What if you needed crutches or a cane? Could you expedite without being able to hold a marker? You go deep down the rabbit hole.”
Two-thirds of people with MS can walk, though some need a cane or crutches. Others use a scooter or wheelchair. Possible symptoms, according to the NMSS, include fatigue, numbness, blurred vision, weakness, poor coordination, pain, depression, memory problems, tremors, paralysis, and blindness. “I remember having a conversation with Michael,” Scarpone says. “I was like, ‘How do you be a chef with no hands?’ He was like, ‘You could be a chef with no hands.’”
“There’s an intensity and a fire to be successful and that goes for anything Ed touches, including his illness,” Schlow says. “When I first found out it was devastating, but his tenacity, his positive approach, he was like ‘I’m going to be fine.’”
At Scarpone’s lowest moment, his emotions shifted from panic to jealousy. “You start looking at people asking, ‘Why is that guy normal?’ Then I have to remember that I look normal. No one can tell. Why am I jealous of everyone in the world because they’re normal? Everyone’s got something they’re fighting.”
Within a matter of months, Scarpone’s confidants began to notice a change. He and Levin were working at Tico during the 2018 Pride Parade when Levin started seeing shades of his old friend instead of the person he sat next to in the hospital. When they were back in New York in the fall, the pair traversed the city like old times.
“As fearful as he ever was, I never saw him feeling like this was going to be the end of him,” Levin says. “I see a lot of very tender moments, but I never saw a moment of true desperation save for a few in the initial moments.”
For a year, only Schlow, Levin, a handful of coworkers, Scarpone’s family, and his then-girlfriend knew he had MS. “I didn’t want to be looked at differently,” Scarpone explains. “What if in 10 years I go to get a job and someone digs up some article that was written about this and they say, ‘I’m not investing in him?’”
But he had a change of heart last month. Scarpone posted the image from his MRI on Facebook that showed large brain lesions, along with a raw account of what had transpired. “Take a moment to realize that tomorrow is not promised,” he wrote in conclusion. “Spend time with the people you love. Call your friends and catch up. Eat good food and drink good wine. Smile at the red light. Go out of your way to do something nice for someone.”
Now Scarpone cooks and waits, hoping the next attack doesn’t come at an inopportune time and doesn’t cause lasting damage. He celebrates the days that pass where he doesn’t even consider his disease. CP
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