With the matinee-idol good looks of a young Clooney, Carlos Gimenez sits listening to his guest in the subtly appointed conference room of the public advocacy firm where he spends most days he’s not kiting around the country and the world for his clients and his city. His penetrating but affable eyes narrow and widen to indicate that he indeed understands the nuances of the subject at hand, his nod is knowing, not eager. Carlos J., or “CJ,” as his friends call him, has seen many things. He’s the son of a Cuban immigrant (one of them being the current mayor of Miami-Dade County); a first-generation American, which in these days of presidential campaign immigration discussion, is something that’s not lost on him.
Gimenez has become an indispensable consultant in local, state, and federal elections as the firm at which he’s employed consults for the candidate and issue-based campaigns. In fact, during both our interviews and our photo-shoot Gimenez was pulled away to consult with one of the candidates. Gimenez has indeed been blessed with an abundance of opportunities in life. He’s an accomplished attorney, a father of two young girls with his wife Tania, also an attorney, he travels the world and rubs shoulders with heads of state, celebrities, and kingmakers. But while he can do many things that others cannot, Carlos cannot take a shower by himself. He also can’t drive a car. He limits the time that he is alone with his daughters, who are still very young. All because Carlos suffers the adverse effects of Epilepsy.
While Gimenez does take medication that helps suppress his epileptic seizures, he feels for the approximately one million Americans who suffer from epilepsy that cannot be controlled by medication. “A good two-thirds of epileptics can keep from having seizures by getting on neuro blocker,” explains epilepsy specialist Dr. Michael Privatera, the Founder and Director of the University of Cincinnati Neuroscience Institute.
“I tore the poor guy’s sleeve right off his shirt,” recalls a still slightly horrified Gimenez six years later imagining how that must have not only looked to bystanders but to the client himself who was not aware of Carlos’ malady.
Dr. Privatera has been studying neurology and epilepsy for more than 25 years and says that the disease is still one that we don’t really have a great handle on.
“The ability to diagnose epilepsy has been around since the 30s,” says Dr. Privatera, but not until the early 80s did we have the ability to even begin treating it with any success.”
It was during that time that many involved in the industry thought that a breakthrough was on the horizon. “We had been studying the effects of neurotransmitters and we all felt that we were looking at a big breakthrough in medications being developed to treat the disease. Unfortunately, the medicines that were developed weren’t really that effective when they were finally rolled out,” says Dr. Privatera. And while Gimenez suffers from epileptic seizures, his initial diagnosis was that he didn’t have epilepsy at all.
In the summer of 2003, Gimenez was attending a “celebrity” promotional event for the Miami Grand Prix, in Coral Gables on behalf of his then firm’s client, International Speedway Corp., the operator of the Homestead-Miami International Speedway. He had his dog with him at the time and a few small kids had come over to pet the animal. Carlos knelt down to help the kids pet his dog and the next thing he remembers is waking up in the hospital. “I had a seizure that day, and I will never forget it, especially since it was my first,” says Gimenez, thinking back to that day.
The problem was that Gimenez was diagnosed with vasovagal syncope, a very different affliction than epilepsy. In fact, according to Dr. Privatera, vasovagal syncope could have been easily ruled out if the right questions had been asked at the time of Carlos’ arrival for examination.
“Vasovagal doesn’t come with a fuzziness after the seizure. Epileptics, post-seizure, take a few minutes to get their bearings. Their mind is engulfed in a fog, and this includes having the feelings of Deja Vue, something that never accompanies vasovagal. The examining physicians just didn’t ask the right questions because if Carlos had been brought within 20 feet of a neurologist, epilepsy would have been one of the first things we would have wanted to rule out,” says Dr. Privatera.
So for the next three years, Carlos would have his bi-monthly seizures that included passing out, convulsions, and his shoulder typically popping out during said seizures (a dead giveaway of epilepsy**), all while taking medication for a disease he did not have. At this time, since vasovagal didn’t require a ban on activity, Carlos regularly drove himself, showered without backup supervision, and carried on as an unknowing epileptic.
From 2006 to 2009 the seizures stopped. Then, one sunny day in Coral Gables, he was with a client in front of his then offices on Alhambra Plaza. Suddenly Carlos felt lightheaded and began convulsing. In a now-blind attempt to remain upright Carlos grasped for anything he could, his eyes rolling to the back of his head, his voice becoming louder in a frightening wail. “I tore the poor guy’s sleeve right off his shirt,” recalls a still slightly horrified Gimenez six years later imagining how that must have not only looked to bystanders but to the client himself who was not aware of Carlos’ malady. As luck would have it, then Florida State Legislator (now Lieutenant Governor of Florida) Carlos Lopez-Cantera saw the entire thing from his window in the office building he was working in, and called an ambulance. <<CANTERA QUOTE>> “Carlos took it upon himself to reach out to my father as the incident was unfolding. I will never forget that. He is just good people, and I am happy to call him a friend.”
Gimenez now makes sure everyone, including his clients, are aware of his situation. “I never wanted to talk about it because I didn’t want people to look at me ‘that way’. But I now realize it’s not a character flaw, it’s just something I have that needs to be dealt with and to be lived with and it’s important that those I spend time around, including my clients, are aware of it.”
It was this incident, that included a grand mal seizure, six years after he had been diagnosed with vasovagal, that finally put him on the road to knowing what was really affecting his life. Carlos was hooked up to a 30-minute EEG (still the best way to arrive at an epilepsy diagnosis) and then was fitted with a brain monitor for a 24-hour period. How did he feel when he got the correct diagnosis? “I’m more analytical than emotional, so I just took it in stride and started to plan what I was going to do about it. Everyone has their issues. This one is mine,” he says with his preternaturally sunny disposition.
Carlos has then prescribed a series of medications but none of them were effective in controlling his seizures, which to this day clock in every five to seven months. He says that his seizures consist of him becoming “very, very loud from what I am told,” and then entering a “dream state,” as he describes it. He’s had the seizures at home and he’s had them in the office, so now Gimenez makes sure that his co-workers and his clients are aware of his issues. “Everyone in the office is aware and knows what to do when I have a seizure and the majority of my clients know about my issue,” he says matter-of-factly as if discussing what he takes in his coffee.
Florida law requires those with epilepsy to refrain from driving for six months after a seizure. Until he finds a medication that can take him out of the “uncontrollable” category, however, Gimenez has no plans to drive. “There are times when the six-month moratorium on being able to drive has passed, but I still don’t do it. I don’t want to risk it. There’s more at stake than just my life,” he says, reflecting the attitude of someone very much aware of the responsibilities of someone with a potentially deadly affliction that can also affect others. When on the subject of how his illness affects others, specifically his wife of 8 years Tania, he says, “It’s definitely been tough for her. I can’t do the things that 99% of husbands can do, like chauffeur the kids around to their activities. I try to make up for it by doing more where I can. She is an amazing woman and I thank God for her.” She also has to remind her active husband to stay on top of his illness. “She’s also good at keeping on top of me to make sure I’m taking my medication, don’t get too stressed, and get enough sleep. I’m a guy and so sometimes I think I can just pretend I don’t have it and then I get into trouble. She’s great at keeping me grounded in reality,” Carlos admits of his better half.
For Carlos as well as most epilepsy sufferers, stress is the magic ingredient to seizures, especially the stress caused by lack of sleep. In fact, stress has been pinpointed as such a contributing factor in seizures that Gimenez’s current physician, world-renowned epilepsy physician from the University of Miami Dr. Andres Kanner, recently traveled to Dr. Privatera’s University of Cincinnati Neuroscience Institute to help establish the first stress-focused epilepsy department in the country.
“You don’t want to put anything in someone’s mouth who is having a seizure. We’re really good biters when we aren’t in control and if you put one thing in our mouth it will almost always become two.”
And since there is still much academic study needed into the causes of epilepsy and the accompanying seizures, it is no surprise that the lay population is largely unaware of the disease. “You know, there’s the common misconception that you should stick something in the mouth of a seizure victim to protect them from biting their tongue off,” starts Gimenez, a slow smile spreading across his face with the memory that is spurring this recollection, “but I tell you what, someone once stuck a thick plastic toothbrush in my mouth and I bit it clean in half. Snap!” He continues, “You don’t want to put anything in someone’s mouth who is having a seizure. We’re really good biters when we aren’t in control and if you put one thing in our mouth it will almost always become two.”
Sufferers are counseled to simply take care of the basics and hope for the best. Gimenez lives close to work so he can walk. Otherwise, he takes Uber, public transport, or his wife, co-workers or clients drive. He doesn’t consume alcohol very often, and he tries to get as much sleep as he can with his busy schedule. Despite all the precautions, the life he has been dealt with is never far away. During a Labor Day barbecue this year Carlos was in the pool playing with his kids (and of course doing a back-flip) when his arm popped out of its socket- a little gift from all the times it has happened during seizures. He is now well versed in the art of getting it back in all by himself; “I do it Lethal Weapon-style (a reference to the character in the movie played by Mel Gibson whose shoulder repeatedly pops out)…just find a hard surface and jam it back in.” And it doesn’t even have to be as dramatic as a back-flip. Gimenez will often pop his shoulder out removing a suit from his closet. “If popping your arm in and out was a superpower Marvel would have surely made a movie about me by now,” he smiles.
Today Carlos sits on the board of the Epilepsy Foundation of Florida which he says is probably the first place people should go when they need information on the subject. “It’s a great clearinghouse for information about the illness. And if you’ve just been diagnosed or know someone who has, it’s very important to seek out someone who has been dealing with it for a while. The information they can provide, and their family can provide, is priceless.” He also cautions those same people to be wary of just wading around online for information. “If it’s a new subject to you I would not recommend just logging on for your first experience. Speak to someone at the Foundation. It can be a scary illness, not only for the sufferer but almost more so for the family that has to watch you turn into something they never could have imagined,” counsels Carlos.
Carlos is also a big proponent of keeping everything in perspective and while having epilepsy leads to life complications, he does what he can to make it manageable, without obsessing about it. It’s important to keep things in perspective, especially if you have kids,” says Gimenez. “I have a blessed life.”
There’s an old adage that God will never give you more than you can handle. For CJ’s sake, I hope that’s not the case. He seems capable of overcoming anything that comes his way, and while his arm may be hanging at an odd angle in the process, the smile will seemingly never be wiped from his face.