“It’s difficult waking up every morning not knowing what you’re going to feel like. I used to be somebody who could work 18 hours a day and not even blink an eye. Now I’m somebody whose brain wants to work 18 hours a day, but my body can’t do it. It’s enough to make you crazy.”
Gerry Hayden is much more than the chef at the North Fork Table & Inn, the Southold restaurant he’s helped make a regional dining destination. He’s also more than a twice-nominated James Beard finalist for the Northeast’s best chef.
He’s a fighter, now battling amyotrophic lateral sclerosis, the fatal illness known most commonly as Lou Gehrig’s disease.
Restaurant industry friends of Mr. Hayden have organized an event packed with star chefs at Manhattan’s Colicchio & Sons at 7 p.m. on Sunday. Proceeds will go to Mr. Hayden’s foundation, Hayden’s Heroes, which benefits Mr. Hayden and other ALS patients while furthering research on the disease through the organization Project A.L.S.
“They’re making big strides, getting people involved in research and getting research facilities to communicate with one another,” Mr. Hayden said.
Restaurateur Tom Colicchio will host Sunday’s event, where kitchen kings like Charlie Palmer and David Burke, who Mr. Hayden calls his mentors, will join chefs Alfred Portale, Rick Moonen, Bobby Flay, Paul Del Favero, Wylie Dufresne, Marco Canora, Bryan Voltaggio, Sherry Yard, Michael Mina and Dante Boccuzzi — each making 300 dish portions for the $250 walk-around dinner.
Mr. Hayden, 47, was diagnosed with the disease in January of last year, after he went to an occupational therapist because muscles in his hands had begun to atrophy. The therapist started the process that led to his diagnosis, referring him to Mattituck neurologist Dr. Caroline Gatewood for tests.
“I just thought it was going to be some sort of rheumatoid arthritis from using my hands my whole life,” Mr. Hayden said. “I just figured I was getting to that stage a little bit earlier than I should be.”
Dr. Gatewood diagnosed him with motor neuron disease, affecting lower motor neurons, cells that connect the brain and spinal cord to muscles in the body. That diagnosis was reaffirmed by Dr. Hiroshi Mitsumoto at Columbia University and upgraded to ALS, which affects both the lower and upper neurons. Upper motor neurons are responsible for carrying motor information down from the brain to the body but not directly to the muscles themselves, as lower motor neurons do. With ALS, the person’s reflexes will eventually shut down completely.
Mr. Hayden said the average person lives with ALS for three to five years after diagnosis.
“There’s some people who live longer, like Stephen Hawking, and eventually everyone with ALS gets to his stage,” he said. “He’s hooked up to breathing and voice machines; he’s just a brain being pushed around.
“The most heinous part about this is it’s already taken my ability to work in the kitchen, work with my hands, but it will eventually take my ability to eat and breathe,” he continued. “I use a breathing machine at night and I have to go home during the day to use it in order to pump up my lungs, just to keep them going in and out. My swallowing is getting to the point where I had to have a feeding tube put in a few weeks ago because we don’t know when I’ll have the inability to eat.”
Mr. Hayden’s protege is Cutchogue’s Stephan Bogardus, who under his tutelage has been learning the ins and outs of running a fine-dining restaurant.
“School teaches a cook the fundamentals of basic cookery, but Gerry taught me how to refine those fundamentals into complex components you’d see in highly rated restaurants in New York City,” Mr. Bogardus said of his mentor.
“He taught me how to cook at a premiere level, manage a kitchen and go from a kid who knew very little to a good cook and, finally, to a chef. I owe everything I have to Gerry and I wouldn’t be even close to the position I am today without his mentoring me.”
Mr. Hayden said that as long as he is able to speak, he will continue to mentor Mr. Bogardus “and even after that, I’ll figure it out. It’s difficult because I don’t know where I’ll be. I have to stay out of the future because that’s not a good place to be, but it’s hard to stay out of the future.”
For more information about the event, or to donate money to Mr. Hayden’s foundation, visit giveforward.com/haydensheroes.