Epilepsy community lauds revelation by Bears’ Fields
Quarterback detailing his condition hailed as landmark moment
Among the most striking facts about epilepsy is the combination of how common it is and how it has not previously had a very high-profile personality who is public about having the condition.
Indeed, when Landis Wiedner was diagnosed with the neurological disorder after first having seizures four years ago, one of her responses was to search for role models.
“I Googled to find, like, celebrities, anyone I could find who had epilepsy, just as a see-you-cando-it sort of thing,” said Wiedner, a 36-year-old North Side project manager for a law firm. “It is very hard to find people open about it.”
That changed in recent weeks as the Chicago Bears traded up in the National Football League draft to select Justin Fields of Ohio State, one of the top-rated quarterbacks in college football, with the No. 11 pick.
Fields, ahead of the draft, revealed that he has been managing epilepsy through medication
for years, news that reverberated through the epilepsy community perhaps even more strongly than it did through the sports world.
“It was a huge thing,” said Beth Lewin Dean, CEO of CURE Epilepsy, a Chicago not-for-profit dedicated to finding an epilepsy cure and, along the way, overcoming its stigma. “It kind of lives in the shadows. With Justin being open and talking about the fact that you can live a full life, you can play sports and do these things, it’s huge for the community.
“It starts a conversation that we’ve been trying to have. And when you have somebody who’s high-profile, like Michael J. Fox did for Parkinson’s, it moves the disease forward immensely,” Dean said.
The degree to which Fields will want to be a spokesman or a standard-bearer like the actor Fox has been for Parkinson’s disease is unknown. Asked if the player or the team would comment, the Bears pointed to what was said about epilepsy as Fields first met Chicago media.
“We were very comfortable with that in how he handles that,” General Manager Ryan Pace said on draft night, explaining that the team’s medical evaluators were in touch with peers at Ohio State. “We dealt with something similar in the past with different players over the years, and we’re completely fine with it.”
Fields, who is 22, explained that it started in 9th grade when he had a seizure while at school and “I just woke up in an ambulance.”
But since the epilepsy diagnosis, “It has had zero effect on football. I haven’t missed any practices, any games because of it, and it’s pretty simple for me to manage it. I just have to take three or four pills a night, every night,” he said.
“So it’s nothing crazy. It’s kind of a thing that’s been there for the past seven or eight or so years. So I’m used to it, and I’m just going to continue to deal with it and play the game I love.”
As his first season in Chicago progresses this fall Fields will surely face more opportunities and more pressure to talk about his condition in detail. Athletes overcoming medical challenges is a staple of contemporary sports coverage.
The reaction to his epilepsy, made public a week before the draft, suggests such a discussion is necessary. Some of the public commentary was immediately negative, some was well-intentioned but ill-informed, and both schools of reaction speak to the issues those living with, treating and fighting epilepsy hope to see addressed.
Wiedner, who is also an editor and writer for the Living Well With Epilepsy website, was disappointed in the reaction and felt moved to write something different, about how people were ignoring “the epilepsy elephant in the room” when talking about how Fields had gone from being a likely Top 5 pick to a point where the Bears could grab him at No. 11.
“While not discussing Fields’ neurological disorder in the context of his falling draft stock may seem like the unprejudiced approach, it’s ultimately dismissive of just how remarkable Fields is,” she wrote in a piece for the NBC News opinion pages. “And it deprives other athletes (and nonathletes) with similar challenges of an inspirational and stigma-busting success story.”
There are different types of epilepsy, a neurological condition typically diagnosed after a person experiences recurrent and unprovoked seizures. Caused by electrical surges in the brain, seizures too have a range, including the bodily convulsions most laypeople think of and a less obvious state of impaired consciousness that can look like staring or being under a spell.
Many among the roughly two-thirds of epilepsy patients who are able to manage the condition with medication say it can be physically draining, which is all the more reason to be impressed by Fields’ achievements, said Wiedner, who is working with her doctor to adjust her medication regimen as her seizure frequency, diminished during the low stimulus of the pandemic, has increased again recently.
“I have just so much admiration for him because I’ve gone most of my life without epilepsy, and then the past four years with it, and it’s just much more difficult day-to-day living,” she said, noting that the energy drain has made it harder for her to enjoy her lifelong love of running. “So to play a sport at that level...”
In Downers Grove, Andrew Sterr saw the Fields news and was thrilled. Sterr, now 27, played three sports in high school at Downers Grove North while taking medication for seizures, a situation that became an epilepsy diagnosis in his senior year, he said.
“It never kept me out of sports,” he said of the condition, and he ran cross-country, track and field and swam for the school. But he would have to monitor his sleep and rest schedule, he said, because being physically “drained” could bring on a severe headache and a seizure, which in his case tend to be of the “spell” variety.
As an adult, he has been able to continue with occasional running, including completing a half marathon for epilepsy awareness. A real breakthrough came a few years ago when his neurologist essentially split his medication, from taking it all in the morning to half in the morning and half in the evening.
“So the most recent seizure I’ve had, we’re approaching three years now, you know, cross my fingers, knock on wood,” he said.
Sterr, who works in forestry, is public about his condition and makes himself available through the Epilepsy Foundation to talk about it. He would be happy to be eclipsed by Fields’ star power, he said.
“We as people with epilepsy needed this extremely,” said Sterr. “It aggravates me more than I am stigmatized, you know? So I enjoy coming out and sharing with people, ‘Yes, I do have epilepsy, and there’s not enough that’s being done to help.’ ... Having celebrities do that, a lot more people are going to listen.”
In Chicago after the draft, Alan Goldsher, a 54-yearold Lakeview resident, tweeted that “Chicago is lucky to have Justin Fields. Not only does he have a ton of potential, but he’s willing to discuss his epilepsy.
Few public figures reveal that they, like me, have the disease, and even fewer use their platform to raise awareness. Bet @justnfields’ll make a difference.”
“It’s not a sexy disease,” Goldsher, who was first diagnosed in 1989, said over a web call. “There aren’t going to be any Lifetime movies about someone that has epilepsy because there’s no arc to it. … Your goal is to control it without negatively impacting your quality of life. And it’s hard to strike that medical balance.”
He said he looks forward to seeing how Fields handles both football and his condition. “I don’t know if this is going to be his mindset or his priority,” said Goldsher. “But if he’s out there raising awareness, that’s going to help a lot. And maybe it’ll compel other celebrities and public figures to come out and discuss it because there are a lot of epileptics out there.”
CURE Epilepsy — founded in 1998 by Susan Axelrod and other parents frustrated by the treatments available for their children who have epilepsy — and the Epilepsy Foundation agree that there are some 3.4 million Americans living with epilepsy and that one in 26 Americans will be diagnosed with it at some point in their lifetimes. It trails only migraines, stroke and Alzheimer’s on the list of most common neurological diseases, and affects more people than Parkinson’s, multiple sclerosis, cerebral palsy, and ALS combined.
There are other athletes in that number. Jeremy Jeffress, a Chicago Cubs reliever during the 2020 season, has epilepsy that he has spoken about publicly, although it wasn’t a focus during his time with the team.
“The epilepsy thing, it’s a disease that I have,” he told the Sporting News in a 2019 conversation after his 2018 All Star season for the Milwaukee Brewers. “I’ve got to understand that I have it, you know? There’s nothing that I can do to get it to go away. All I can do is maintain it.”
Justice Bartley played Division 1 college basketball, for the University of Virginia, while managing epilepsy. Now 25, he began working for the NBA’s Milwaukee Bucks as a video coordinator last fall.
He had his first seizure in 8th grade, he said, and was able to manage the condition medically, but it did affect his stamina at times. As challenging as it was to pull back in the competitive environment of a sports team, he said he would sometimes have to not participate in a drill or in sprints or the like.
“I was hesitant at first to tell my teammates and the rest of the staff about my condition,” he said. But his college coaches “encouraged me to just be open and vulnerable with the guys. And once I did, they didn’t look at me any differently. If anything, they just tried to make sure that I was always in good hands, and to not push myself to the point where, you know, I would lose myself into another seizure.”
He said he “embraced” having epilepsy and began sharing his story after his second year at UVA. His message: “These things are possible. With the right medicine, with listening to your body and just doing all the things and checking all the boxes, you know, there’s no telling what you can be able to accomplish.”
He said he wished there had been a Justin Fields at the time of his diagnosis because although he was interested in football, his doctors were against the contact sport, which meant his mom was, too. “I really hope that he uses that platform well,” Bartley said. “I definitely think that he influenced and impacted so many kids just by the announcement alone.”
Fields may be a rarity as a high-profile athlete whose epilepsy is public knowledge, but it really should not come as a surprise, according to medical professionals.
“Given the fact that it is a relatively common diagnosis … I don’t think it is surprising that he has epilepsy, number one,” said Dr. Mian Urfy, medical director of neuro critical care and the epilepsy monitoring unit at Advocate Lutheran General Hospital in Park Ridge. “And I don’t think it is surprising that he has epilepsy and is still playing football.”
For Bears fans who might fret about the health of their potential franchise player, “They should not be worried at all. It should not be a matter of discussion,” Urfy said. “As a fan, I will not be worried about it. … This is an opportunity to tell people that epilepsy patients are just like other individuals. They live normal lives, and we expect them to live normal lives.”
Urfy spoke of the advances in medications that have led to more limited side effects than their predecessors produced.
His colleague in the field, Dr. S. Kathleen Bandt, a neurosurgeon and assistant professor at Northwestern’s Feinberg School of Medicine, said there have been strong recent advances, too, in surgery to potentially treat the approximately 30% of patients who are unable to control their epileptic seizures through medication.
“What has proven to be the most challenging, medically speaking, in the domain of epilepsy is that we just can’t move the needle on that 70% of people achieving seizure freedom with medication,” she said.
If people’s understanding of the disease increases, there would certainly seem to be increased opportunities for fundraising to try to shift that statistic.
“I think epilepsy to some degree is still living in the shadows. And I wish that that were not the case,” Bandt said. “I think the stigma around epilepsy is evolving as people kind of understand that, you know, everyone’s a little different and differences aren’t necessarily bad.
“But it takes conversations like these, it takes somebody like Justin Fields being an NFL quarterback and doing quite well in that arena, to really change that conversation — to realize that patients can be superstars with epilepsy, and there’s no reason to assume that they can’t be. So I look forward to him, if he’s willing to wear that hat, to be an agent of change in that way.”
“It kind of lives in the shadows. With Justin being open and talking about the fact that you can live a full life, you can play sports and do these things, it’s huge for the community.”
— Beth Lewin Dean, CEO of CURE Epilepsy, a Chicago not-for-profit dedicated to finding an epilepsy cure and, along the way, overcoming its stigma