Customers would come to eat at the Seaside Grill and, if they noticed the blank expression on Rose Culumber’s face – “It was like she was in a trance,” her husband, Dan, said – they didn’t say so.
Maybe they didn’t notice. Maybe they noticed and didn’t know what to say. Maybe they noticed and wanted to say something, but they were too polite to mention it, especially since the episodes usually lasted only 30 seconds.
“When I had the seizures,” Rose said, “the customers didn’t know.”
Or so she thought.
“She had them at work but doesn’t remember most of them,” said Dan, who, along with his wife of 23 years, has co-owned the oceanfront restaurant at Jaycee Park for the past 22 years. “She’d have them riding in the car. She’d have them on the tennis court. She’d have them in the gym.
“But, for a long time, she was in denial,” he added. “I’d tell her, ‘You just had a seizure,’ and she’d say, ‘No, I didn’t.’ She’d get very defensive about it. Eventually, I learned how to handle it.”
Once, when Rose had a seizure while riding in their car, Dan grabbed her smart phone and snapped a photo – to offer proof.
There also were incidents when she would be playing tennis with friends, only to experience a seizure in the middle of a point.
“They’d hit a ball and she wouldn’t even swing at it,” Dan said. “She’d just stop, and you could see she wasn’t really there.”
Not that Rose didn’t know she had epilepsy.
“Apparently, I’ve had this my whole life,” said Rose, who turned 45 last month. “I had a grand mal seizure when I was 4 years old and spent four days in the hospital. They checked me out, said I was fine and I didn’t have another one until 10 years ago.
“So I went to the hospital, underwent all the scans and tests, and that’s when they started me on the medications. I went through a lot of them.”
The meds, however, weren’t as effective as doctors had hoped, and she continued to have lesser episodes, later diagnosed as complex partial seizures that she said made her feel as if she “had left the building for 30 or 40 seconds.” In recent years, the seizures worsened and became more frequent.
Then, two summers ago, came a seizure that convinced her she no longer could go on living with such unpredictability.
“That night,” she said, “changed everything.”
It was that night – July 5, 2012 – when a “girls night out” ended with a frightening car wreck that could’ve been so much worse.
Rose and her friends decided to go to a movie, then grab something to eat. She was driving south on U.S. 1, alone in her car, when she attempted to turn left into the Chili’s parking lot.
“That’s the last thing I remember,” Rose said.
As she blacked out, her foot must’ve pressed down on the accelerator and the car rolled over the concrete parking curb, just missing her friend’s vehicle before crashing into a tree.
Her car was totaled, but she wasn’t injured. Nor was anyone else.
“Thank God nobody was walking in the parking lot,” Rose said. “Dan later told me that my girlfriend ran over to my window and asked if I was OK, and I told her I didn’t even realize I had an accident.
“Then I got out of the car, saw all the damage and broke down in tears when I realized the seizure had caused the accident.”
Dan said he “knew it was coming,” because the seizures had been getting stronger and were coming more frequent.
“They weren’t grand mal seizures, but they were getting worse,” Dan said. “In fact, we had just gone to the doctor and they said, ‘Let’s up the meds.’ Two days later, she had the accident.”
There wouldn’t be another one.
Rose hasn’t driven since that fateful night, instead relying on family and friends to provide rides to wherever she needed to go – and that included the Moffitt Cancer Center in Tampa.
In addition to battling epilepsy, Rose also overcame a bout with breast cancer, undergoing a lumpectomy in October 2012.
“People think I’m crazy when I say it, but I couldn’t care less about the cancer,” Rose said. “I was more concerned about the seizures. I was having them every day, at least once a day.”
So while seeking help from four local neurologists and trying 10 different medications in two years, only to learn that she suffers from drug-resistant epilepsy, she did what many people now do when they’re searching for cures: She went to Google.
There, in March, she found the Cleveland Clinic, which has facilities in Palm Beach Gardens and Weston.
“The meds weren’t working and I needed to try something else,” Rose said. “I wanted to know what I can do, where I can go, see if there was something I could try to stop the seizures.
“I had never heard of the Cleveland Clinic, but when I found it on the internet, I called them, told them my history and they asked when I could come in,” she continued. “First, I saw a doctor in Palm Beach Gardens. Then I went down to Weston and spent the night for an EEG (electroencephalogoraphy) scan, so they could monitor my brain and find the source of the seizures.
“Finally, on July 23, the day after my birthday, I had the surgery.”
For her, the decision to undergo brain surgery was easy. She had reached a point where the reward – this type of surgery has an 80 percent success rate, she said – was worth the risk.
“I was gung-ho to get it done,” Rose said. “When we met with the doctor before the surgery, I had a long list of questions. And he answered every one of them to my satisfaction. So I was ready.”
Her husband was more reluctant.
“I was the one pulling back the reins,” Dan said. “I didn’t want there to be a mistake and she’d suffer brain damage, maybe become incapacitated. But she wanted it.
“She just got tired of having to rely on other people to drive her everywhere,” he added. “Even when your friends say they’ll drive you to the store or the tennis club or wherever, you get to a point where you want to be able to do it alone.”
Barring a setback, Rose will be legally permitted to drive again on Jan. 23 – six months from the date of her surgery.
Though she must continue taking her medications and return for follow-up tests in six weeks, all early indications are that the surgery was successful. Her short-term memory is slowly but steadily returning. As of this past weekend, she had not experienced a seizure.
“It’s been a rough couple of years, with the cancer and the brain surgery and now having two boys off to college out of state, but the surgery went well and she seems to be coming along,” Dan said. “Before the surgery, the longest she had gone without a seizure was three weeks, and that was a while ago. We’re at four weeks now, so things are looking good.”
Rose has returned to work, resumed her walking regimen and begun hitting tennis balls, though she hasn’t yet played matches. There has been an unexpected bonus, too: The headaches she has experienced throughout her adult life are gone.
“I feel really good,” Rose said. “I’m just hoping this is it.”
So are her customers.
“Most of my regular customers knew about my surgery, and I believe they’re as grateful as I am that it was successful,” Rose said. “I got lots of cards and goodies, emails and texts after the surgery. Some of them knew the issues I was suffering with.”
Even if they didn’t say anything.
