By Andrea L. Brown, Special to the Tribune
May 11, 2011
Chef Rob Macey was at the pinnacle of a successful career and in top physical health when he suffered his first grand mal seizure.
"I started to feel sick, nothing major," Macey said. "It was a little high stress. ... I finished a sauce in a large sauce pot. I just started to feel dizzy. I passed out and landed hard on the floor."
Then an executive chef for Macy's department store, Macey was orchestrating a fundraiser for more than 600 guests when he collapsed in the kitchen.
That day in February 2009 marked the onset of a series of seizures that eventually led to a diagnosis of epilepsy, which became so debilitating that Macey opted for a surgical remedy last March.
That Macey, then a healthy, 45-year-old with no underlying disease, should suddenly suffer convulsions is "exceedingly uncommon," said his neurologist, Dr. Stephan Schuele of the Northwestern University Comprehensive Epilepsy Center at Northwestern Memorial Hospital.
The exact cause of Macey's epilepsy remains a mystery. The only unusual marker was a slightly elevated white blood cell count in his spinal fluid, which might indicate a virus. But that test result could also have been caused by his seizure, Schuele said.
Although Schuele characterized Macey's case as unusual, the neurologist noted that epilepsy, a relatively common disorder affecting 1 percent to 2 percent of the population, can start at any age.
"We attribute epilepsy often as a childhood disease," Schuele said. "Epilepsy has two peaks: at the beginning and the end of life." Seizures are typically associated with dementia and stroke in older patients.
Though most patients opt to control epilepsy with drugs, that was not a remedy for Macey, who continued to have seizures about once a month.
"He was maxed out on four different medications, and was still having issues," said Macey's wife, Kim. "The surgery seemed like the only option at this point."
Preliminary electrode surgery pinpointed the suspected source of his seizures: a 2.5-centimeter spot in the left temporal lobe of Macey's brain. The piece was removed in a subsequent procedure.
Macey said he has not suffered any seizures since the operation in early March. But because the procedure was done in an area of the brain that affects memory, Macey sometimes struggles to remember words.
"I think he has made a remarkable development," Schuele said. "The medical world thinks temporal lobe surgery is one of the most underutilized and curative procedures."
Although some of Macey's medical bills are covered by health insurance, expenses are mounting. Unable to work for more than a year, Macey said he reluctantly agreed to allow colleagues and friends to hold a fundraiser later this month at Ambrosia Euro American Patisserie in Barrington.
"It's a hard thing to accept. You're trying to be successful all your life," Macey said. "Having people have a fundraiser, it makes you feel a little weak, I guess."
From his start as a self-described "clumsy little kid" at Le Titi de Paris in Arlington Heights to a stint at Charlie Trotter's in Chicago to a career as a corporate chef and instructor at several culinary schools in the area, Macey, who lives in Port Barrington, has accumulated many fans, said Debbie Rivera, who is organizing the buffet fundraiser at Ambrosia, her gourmet bakery and pastry shop.
"We meet so many chefs that are egotistical," Rivera said. "Rob is just one of these guys that is so humble."
Also organizing the fundraiser is Bill Kopanda. He met Macey through Macey's work as a chef, including at Macey's now-defunct restaurant, Harvest Moon in Woodstock. The award-winning establishment was known for its hearty Midwestern fare prepared with French techniques.
Kopanda bonded with Macey through mutual athletic pursuits. Both are avid cross-country skiers and cyclists. Macey has several times completed the American Birkebeiner 50-kilometer ski marathon, held annually in northern Wisconsin.
"They are just wonderful people, and they have two great kids," Kopanda said, referring the Maceys' 9- and 4-year-old daughters. "This is something I really strongly believe in."
Macey said he is overwhelmed by the support he is receiving.
"What the heck did I do in my life to have so many friends and people to offer to help?" he said.
The Sweet Relief fundraiser and silent auction for Macey will be held from 5 to 9 p.m. May 21 at Ambrosia Euro American Patisserie, 710 W. Northwest Highway, Barrington. Tickets are $20 in advance and $25 at the door. For more information, call the patisserie at 847-304-8278 or go to the Sweet Relief Fundraiser and Silent Auction event page on Facebook, http://on.fb.me/l6fNaY.
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