Fundraiser aims to help local chef recover
Rob Macey had always been a healthy guy — he didn't drink or smoke, and was an avid cyclist and cross-country skier who had run the Chicago Marathon.
So when the Port Barrington resident started having seizures in February 2009 and later was diagnosed with epilepsy, presumably caused by encephalitis, he was angry.
“The rest of my family drinks, smokes, they don't watch their health. And this happens to me?” he said. “It's aggravating.”
But almost in the same breath, Macey also said he's really lucky.
Lucky because he wasn't born with epilepsy like some kids who struggle with it all their lives, he said. His first seizure happened while he was working on a catering event for 650 people as the executive chef for Macy's department store in Chicago.
“I fell back and hit my head against the hard kitchen floor, and split my head open. It was a big, bloody mess. All my cooks thought the chef was dead,” he said.
Lucky because his complex brain surgery in March — to relieve the seizures because medication wasn't working — was successful, he said.
And very lucky, he added, because of the support he has received from his friends, who are organizing a fundraiser May 21 at Ambrosia Euro American Patisserie in Barrington to help Macey and his wife, Kim, pay for their enormous medical bills.
Macey hasn't worked in more than a year, and his wife has a part-time job. His health insurance doesn't cover all the costs associated with his surgery at Northwestern Memorial Hospital in Chicago, he said.
“It is pretty emotional for me,” Macey said of the fundraiser. “People in food service, we know how hard we work, and I am really lucky at all they are doing to help.”
Debby Rivera, who with her husband Richard co-owns Ambrosia, said Macey was at first reluctant to give the go-ahead for the fundraiser. But she and friends Danny Warner and Bill Kopanda persisted and eventually got the Maceys on board.
“Rob has been through a lot, and he is a guy who does not back down from a challenge. We are seeing that strong spirit and that beautiful can-do attitude,” Debby Rivera said. “The guy is as humble as can be, and I think that's what makes it easy to do this for him.”
The Riveras and the Maceys met more than 15 years ago, when the Maceys owned the now-closed Harvest Moon Cafe in Woodstock.
“We always really admired Rob's style of cooking. He is probably one of the top three chefs we could ever dream of cooking for us,” Debby Rivera said. “He loves the Midwestern Americana fare; he celebrates our region. He also is really into fresh food.”
Macey also worked at Le Titi de Paris in Arlington Heights, Montarra Grill in Algonquin and Charlie Trotter's in Chicago.
Most recently, he was the corporate executive chef at Quantum Foods, based in Bolingbrook, until he was fired in February 2010 because of his seizures, he said.
“We had a little lawyer dispute at first, but at the end of the day I understand their decision,” he said.
Dr. Joshua Rosenow, Macey's surgeon and director of functional neurosurgery at Northwestern Memorial Hospital, said Macey opted to go through a two-stage operation that can be very difficult for patients.
“The people like Rob that agreed to go through this to me are some of the bravest people I have met. I have the utmost respect for them,” he said.
First, Rosenow and his team opened Macey's skull and put in about 100 electrodes. For a week, Macey stayed in a hospital bed, with wires protruding from his scalp and his skull stitched together as he was being monitored by video and EEG machines.
Once the hippocampus was identified as the origin of the seizures, Rosenow operated again a week later to remove part of it.
This type of epilepsy surgery has a 70 percent success rate, and the chances of never having seizures again increase exponentially if patients are seizure-free in the first two years, Rosenow said. “Epilepsy surgery is probably one of most underutilized but therapeutically successful procedures around,” he said.
Macey has been seizure-free since the surgery but will be taking anti-seizure medication through November to make sure he remains stable while recovering.
Side effects from the surgery include a faulty short-term memory and difficulty remembering words, Macey said. Some of that damage, however, might have been caused by the seizures, Rosenow pointed out.
Macey said he often gets frustrated with himself but hopes he will be able to retrain his brain over time.
“I am feeling stronger. I am more confident in myself,” he said, adding that his wife has been tremendously supportive.
His doctors ordered him to stay away from physical exercise for now, but Macey admits to doing a little bicycling along the quiet roads near his house.
Doctors also recommended cognitive therapy, but he'd have to take a train and a taxi to get to Chicago, and insurance doesn't cover it anyway, he said.
In the meantime, he relishes the one positive in all this — more time with his daughters Emily, 9, and Helen, 4.
“A lot of guys work 12 hours a day and never take their kids to the bus stop,” he said. “I have a lot of time with my kids now.”