CTE: Mary Seau and Jo Cornell Look to Save Lives by Speaking Hard Truth
Mary Seau, Jo Cornell, and their families live with the pain of having lost a family member from suicide attributed to chronic traumatic encephalopathy (CTE). The two are coping by joining forces in finding ways to give back to their community and educate parents and the public about traumatic related brain injuries through the Mary Seau CTE Foundation.
Mary’s loss was high-profile and public as imaginable. When her brother Junior Seau shot himself in the heart in 2012, it sent shock waves that reverberated throughout their hometown of San Diego and the entire football world.
Seau, who was inducted into the Pro Football Hall of Fame in 2015, remains a sports icon. He grew up in Oceanside in the north county of San Diego. Seau played three seasons at USC before entering the draft where the San Diego Chargers selected him fifth overall in 1990. After his rookie season, he made the Pro-Bowl for 12 straight years with the Bolts before being traded to the Miami Dolphins.
In 1994, Seau recorded 5.5 sacks, 124 tackles and a career-high 31 assists in playing an integral role in Chargers making their only Super Bowl appearance.
For the New England Patriot in 2009, in his next to last game, Seau kept the Chargers from the Super Bowl with a key play near the end zone in the AFC Championship game which sent the famed 16-0 Patriot team to the NFL’s championship game.
Seau never won a Super Bowl. He finished a 20 season career having amassed 56.5 sacks, an astounding 1,522 tackles, and 324 assists.
There was a horrific price to pay for all of those hits.
Seau died just three short years after his career ended.
Before his death, there were signs something was wrong including emotional swings, but Junior hid his pain from family members. “The behavioral problem was there, but I didn’t see it,” Mary said. “I didn’t see because he is always goofy. Junior always made everybody laugh. Every time he walks into the house, he just ignites the home with his laughter and his loud voice. Very positive so you wouldn’t have known.”
At the time of Junior’s death, Mary knew little about traumatic brain injuries or CTE. She did not blame football, and the thousands of hits Junior’s brain had endured for her family’s loss. She blamed herself for not being more responsive to a request Junior had made of her.
“We were all in the garage,” Mary described the events of the day of her brother’s death. “The whole entire family. And then I felt coldness. The door was right here, and I was against the wall in the garage. I felt really cold, and I looked at the door, and I felt colder and colder.
They opened the door. It was the corpse. His feet came down first because it was only two steps. His feet came down. He was on the gurney in the sack. They bought him down this way, and his head was right in front of me, and I can hear him say,
‘The youth brain, the youth brain. Be strong. Be strong. Don’t cry’.
Then mom unzipped the bag. He had a little dot here from the zipper. And then I touched his shoulder. I could feel the electricity. All I could keep hearing was about the brain, but I ignored it. Then I kissed him and said you look so happy. Then I kissed from here (his cheek) all the way to his ear, and he said,
‘Be strong’. He said, ‘take care of the kid’s brain’ and I felt his spirit going back up the stairs.
I had to shake it off. But I didn’t know what happened. That’s when I heard the whole family crying and everything. Mom was trying to jump on Junior, but they stopped here.
I kept staring at Junior like this is the second time you have asked me to do this.
If I had done what he has asked we could have worked together. But I didn’t.
Pastor Shawn’s (Mitchell) wife was in the garage, and I turned around, and I said it was my fault. She said, ‘It’s not your fault. It’s not your fault.’ And I said, ‘Yes. It is my fault,’ and I just looked at her. I didn’t say anything.
You just don’t understand, Junior asked me to do something and that why I said, ‘it’s my fault.‘”
Junior Seau didn’t leave a suicide note.
By shooting himself in the heart, Junior had persevered his brain. In search of answers, the Seau family agreed to have an autopsy performed on his brain.
“They believe that through allowing this procedure, it will allow the betterment of other individuals and athletes in the years ahead,” pastor Shawn Mitchell said in speaking for the family. “Their thought is, if it can benefit others, then it’s probably worth going forward with.”
The results of brain autopsy revealed Junior Seau had a diseased brain which is caused by hits to the head. “What was found in Junior Seau’s brain was cellular changes consistent with CTE,” Dr. Russell Lonser told ABC News. Lonser is chairman of the Department of Neurological Surgery at Ohio State University, who led the study of Seau’s brain.
The finding of CTE in Junior Seau’s brain was a national story that had far-reaching implications.
More than 4,500 former players Including Hall of Famer Tony Dorsett, Super Bowl-winning QB Jim McMahon, and joined by the family of Junior Seau had sued the league for brain-related injuries related to football. They had suffered from an array of symptoms that included dementia, depression, and Alzheimer’s.
The league settled for $765 million in August of 2013 rather than continue a lengthily legal process that would likely have required the NFL to handle over internal information on the topic, according to NFL.com.
The terms of the settlement allowed for any of the approximant 18,000 former players to be eligible for damages.
The NFL has also made several rule changes that are aimed at limiting blows to head and implementation of concussion protocol which restricts a player’s return to the field after an injury.
The cause of CTE had primarily been focused on the hits NFL players endure, and some minimal focus on the college athlete.
That should have changed when Tyler Cornell, 25, committed suicide in April of 2014. Soon after graduating from Rancho Bernardo High in San Diego, Tyler began suffering severe anxiety and depression which lead to being hospitalized multiple times.
Tyler’s playing days ended in high school, but he had still played every year from the age of 8 to 17. Tyler’s mother Jo Cornell believes that when including practices, Tyler’s brains endured thousands of hits playing tackle football.
An autopsy of Tyler’s brain revealed that he had CTE. “It gave the family some rational reasons for what happened to Tyler,” said Jo. “His journey, and why his life unraveled.”
Tyler is among nine high school players who have been diagnosed with CTE after death. There have also been nine college players diagnosed.
A 2017 study showed the frequency of CTE to be high for all levels of play.
“In a convenience sample of 202 deceased players of American football from a brain donation program, CTE was neuropathologically diagnosed in 177 players across all levels of play (87%), including 110 of 111 former National Football League players (99%),” according to a study published in the medical journal JAMA.
“There’s no question that there’s a problem in football. That people who play football are at risk for this disease,” Dr. Ann McKee, director of Boston University’s CTE Center and coauthor of the study, told CNN. “And we urgently need to find answers for not just football players, but veterans and other individuals exposed to head trauma.”
Jo had once cheered on her son as his Bernardo Raptors went undefeated and reached the Pop Warner Super Bowl in 2001. Now Jo has joined forces with Mary to educate the public about CTE and give back to the community.
While it’s painful to revisit the death of her son continually, Jo welcomes the chance to educate. “The opportunity to be in the community and to tell Tyler’s story, even one person at a time, that makes a difference for me,” Jo Said. “That’s making something good happen from something that is so tragic and terrible. I find strength in doing that. It doesn’t happen every day to be out and discussing, bringing awareness to traumatic brain injury, but when I have the opportunity I want to step up.”
By creating the Mary Seau CTE Foundation and working with Jo, Mary has fulfilled her brother Junior’s request to look after the youth brain.
Parents of football players and other contact sports have become more aware of CTE and will reach out to Mary and Jo when they are concerned their child may be demonstrating symptoms. “I get phone calls to go to people’s home to give them a one-on-one interview with them,” Mary said. “To give them the education of what they are going through, or what their loved members are going through.”
The process starts with education. “The thing that people don’t understand is the detail of the injury. What does it mean? What does brain injury mean? What does brain Trauma mean? To break it down into plain English is where I come in. Then I show them my PowerPoint or video on exactly how the brain functions and why you would lose your memory and your behavior is abnormal.”
Since CTE can only be diagnosed after death, one difficulty in determining if a young person is suffering from CTE is that the symptom of emotional mood swings associated with the disease is similar to that of a teenager going through puberty.
“Yeah, kids go through rambunctious periods, but erratic behavior, emotional outbursts that are above and beyond should be looked at,” Jo said. “Now that we know what we know, which is the brain is being moved in the skull as it takes a hit. As it hits another player. Helmet to helmet, or helmet to the turf. The kids are being exposed to a trauma.”
Mary pointed out these hits children are experiencing in contact sports on coming at a time with their brains are still developing. “It’s really hard for young kids because they are still growing up. When they are going through all these hormone changes, you don’t know if they have had a brain injury or a brain trauma, or they go through their hormone teenage stage. The frontal lobe is not working correctly, and parents don’t know the difference.”
Mary’s message to parents is it’s best to be cautious and just stop playing, especially if their child has already experienced head trauma.
“I tell them, ‘Pull your son out. Pull your son out now.’ They can find something else for their activity to get that full ride scholarship. And that’s what I tell them. Pull them out. You came to me, and you asked questions, and I told you what is going on and what stages he is at right now, and it’s going to get worse. It’s going to worse because once you have that brain injury the older you get, you are going to get new symptoms.”
Mary admits that her message of not playing is not always well received or even accepted by those that know the ramifications. “My family can tell the awkwardness when I attend their football games. I think they know that I’m not there to support their son when I fell that I am. But when I look at it, and I think about it, I’m actually not there to support their sons. I’m counting the hits.”
Mary once loved the game of football. Now when she watches a game, she finds herself battling her inner thoughts to reach out to parents of the players.
“I say to myself, ‘Mom dad you don’t realize. You guys are all cheering nice hit son, nice hit. When the reality is your son is running around with brain injury out on the football field.’
All I can think about is their future.
In my mind in my heart, I’m like WAKE UP MOM AND DAD! THIS IS NOT FAIR! YOUR KILLING KIDS!
But I cannot tell a parent or parents what to do with their kids. It’s their decision. My thing is, I have to bring out the education and the awareness. To make sure they understand what’s going on with their son.”
Mary doesn’t know if her brother Junior had the knowledge about CTE that is available today whether or not he would still have made the decision to play. “Going back to his senior year, Junior was trying to figure out if he wanted to play basketball or football. Junior picked football. So, the question is: If he knew of the injuries (would he still played)? I would have to say that he would have continued on playing football. I would have to say that he loved to play football.”
Mary and Jo believe a good starting point for protecting children’s brains is for parents withhold their children from contact sports form at least the age of 13 and pull them out entirely if they have a head injury at any level.
Jo is particularly concerned that a Pop Warner there are no universal equipment safety standards and that hasn’t changed with the new awareness about CTE. “We didn’t know what we didn’t know back in 1997,” Jo said. “For the six years that my son played Pop Warner football we didn’t know the extent of the trauma or the fact that the helmets don’t have any child safety standards. They didn’t in ’97, and they don’t in 2018. That’s a bitter, a bitter pill and that’s an outrage that families would be aware of.”
Jo stressed helmets should be designed, manufactured, tested for children. Even if manufacturers meet that standard, she doesn’t think it’s possible to protect the brain adequately.
“The reality as I understand it is there isn’t a helmet that would be able to be designed, I believe, that can save the brain from its movement from within the skull’s cavity. As a kid is taking a hit, giving a hit, that brain is sloshing. This is a new term that I learned this week. That is a horrible thing to think about. Your little boy, your little eight-year-old is doing something that the brain is sloshing around and hitting the inside of their skull.”
Jo has recently started to engage families that have lost someone believed to be a brain-related suicide to secure the lost one’s brain for medical research.
“I’m fairly new to reaching out, and I’m learning as I go from that end. For right now, that goes through the medical examiner’s office to make that connection. But the medical examiner is very aware of what’s going on. They are very much in favor of that and able to provide our information to grieving families. I share with them my story, yes. I sympathize and share that I’m not just some random person that isn’t intimately connected with this.”
Jo and Mary are making progress in their effort to educate. On October 12th, the Boston University’s Chronic Traumatic Encephalopathy (CTE) Center will hold a presentation and conduct a Q&A on the topic of tackle football and children’s brain safety.
The two are also enjoying the success and therapeutic rewards of giving back. The duo recently hosted the 1st Annual Junior Seau Blood Drive/CTE. The event was at Oceanside High School where Junior Seau attended. The drive collected 88 pints of blood. (See video link below) “I felt like I should pursue the blood drive because junior had started it. In San Diego County we need the blood, and it will benefit Rady Children’s Hospital.”
Mary and Jo are also have a focus on getting help for those who have symptoms of CTE or other related brain injuries.
Jo warned against treating a brain injury as a mental health problem that may include psychotropic drugs which affect the brain in treatment.
“My biggest recommendation for a family is that they don’t go the mental health route,” Jo said “I do think that treating a brain injury as a brain injury and not a mental health diagnosis even though their symptoms manifest as a mental health disorder. It really is a brain that is inflamed, and there is another course of treatment that is a better course”.
Kyle Turley, a San Diego native who played eight years in the NFL as an offensive lineman, has experienced the negative ramifications of psychotropic drugs. He recently described his experience as being terrifying and included disabling vertigo, migraines, rage episodes, and suicidal thoughts. Turley said an interview with TheStreet about why he now uses Nero XPF, a CBD (shorthand for cannabidiol) product.
Turley believes he is symptomatic of CTE and CBD has offered him relief from those symptoms while drugs did not.
“The things I did under those drugs were insane, and it wasn’t because I abused them,” he recalled. “Cannabis was the thing that worked, and the one thing I always knew helped.”
The FDA does not certify CBD oils in treating any disease, but stories like Turley’s are familiar and are evidence that there is a need for more research.
CV Sciences, the leader in CB oils and a San Diego based company, recently added Dr. Joseph Maroon to their board. Maroon has experience NFL physician who is a world-renowned neurosurgeon with extensive experience in neurosurgery. He is the co-developer of ImPACT™ (Immediate Post-Concussion Assessment and Cognitive Testing), the only FDA approved test for concussion assessment.
“You can read the various therapeutic benefits that have been well documented in terms of CBDs,” Dr. Maroon said in a Cannabis Medicine Webinar. “It was patented as a Nero-protective by the scientist at the NIH (National Institute of Health).”
Mary advocates that anyone who has a brain injury should live a healthy lifestyle and seek medical assistance.
“My advice is to seek counseling. Go through all of the tests. The Neurologist. Physiological testing. Eat a healthy diet. A high vitamin D diet will help your brain function. It’s not going to heal, but it will help a little bit.
Even though you are doing all of these treatments, there is going to be another symptom. You could have Alzheimer’s. You could have a low appetite. Then you keep on forgetting (which is) your memory loss. That’s another thing that will come up in your tests in years. This is why it’s important that once you have that brain injury to stop playing.
That’s my suggestion, stop playing. Even though you have that injury and you stop playing, you got it. It’s like cancer. You are just going to get all of these stages and all of these diagnoses. Paralysis. You are going to get it all.
It may be hard to hear my words. I don’t sugar coat anything because I don’t want no one to go through what my family went through. I will not sugar coat it.”
If you are thinking about suicide, please call The National Suicide Prevention Hotline: 1-800-273-8255
Disclaimer: The author holds a position in CV Sciences (CVSI).