What it’s like to live with – and lose – a loved one with CTE

Maura Horton read the latest stories, the ones detailing the startling research that as many as one in four NFL players could end up with CTE, and she knew what would happen next. People would talk about chronic traumatic encephalopathy that day and for a few days after. They’d debate whether kids should play the sport. They’d posit about what could be done and try to reconcile this country’s love affair with football with the mounting evidence that the cumulative hits throughout a career can shatter lives. And then inevitably and invariably, they’d move on to whatever came next in the news cycle. She didn’t blame them. It’s the nature of humanity, especially when something feels far removed from your everyday life. Only .023% of high school players get even a snap in the NFL. CTE is, thereby, a tragedy that happens to other people. Except it happened to Maura’s family, to her 58-year-old husband, Don, the father of her two daughters, Hadley and Libby. CTE was and is the “earthquake” that came into Maura’s life and upended the road map she had planned, that they all had planned. The long marriage, modeled after her parents’ 60-plus years of connection, and days in the stands watching Hadley play soccer and seeing Libby turn her analytical math brain into a successful career; the anticipated extraordinary walks down the aisle and the ordinary walks around the block; the chance to get old and creaky together. The simple yet profound opportunity to create a life all rerouted and ultimately destroyed. And Don Horton didn’t play in the NFL. He was an offensive lineman at Wittenberg University, a Division III school that has had its share of glory (five national titles and 799 wins) but so far off-Broadway that only true football loyalists would know of it. He is, then, not a number in the most recent study, and yet he died in May 2016, a postmortem study of his brain confirming the cause of death that his family accepted long before his passing. It is that gap – the chasm between everyday athletes and NFL stars, between cause and effect, between assistance and diagnosis – that Maura wants closed. “I’m always thankful that the reports are published and the research is ongoing,” Maura told CNN Sports. “But there is still so much missing. I want to be a conduit that helps open a dialogue to understanding. No one sees the aftermath. No one understands what it’s like on a day-to-day basis. You see these studies and then no one talks about it again until someone dies. “But this is an earthquake that shattered my family, and no one understands how shattering it is. I’m 10 years past and it’s still shattering us.” An identity shaped by football They told Don, a committed fitness buff who suddenly struggled to lift weights, that he had Parkinson’s Disease. Maura laughs as she remembers the diagnosis, how people told her that of all the neurological disorders to have, this one was the most manageable. “Michael J. Fox,” she said. “Everyone brought up Michael J. Fox.” Yet Don’s health declined rapidly, and in ways that made Maura question the diagnosis. One day he’d be in the gym working out; and the next day he’d fall down for no reason. He had mood swings and fitful nights sleeping, bouts of paranoia and even hallucinations. Maura thought maybe it was the medications, and so she became her husband’s self-appointed pit bull, going to doctor’s visits to pepper the physicians with questions. She also researched on the side and as Don’s condition continued to deteriorate, she wondered if maybe he had CTE. Finally, she direct messaged Chris Nowinski, the co-founder of the Boston-based Concussion Legacy Foundation. Maura then spoke to Don about donating his brain to science after he died. He balked. Here was a man who devoted his life to healthy living. He eschewed junk food and regularly hit the gym, and yet his wife was suggesting to him that there was nothing he could do or have done, that a decision he made as a kid put him on a path he couldn’t prevent. That football did this to him. The game was as much who Don was as what he did. He jumped right into coaching after his playing career ended, beginning the sojourner football life that took him from various stops in Ohio to New Mexico and Virginia. In 1997, he hit the big time, landing a gig as the offensive line coach at Boston College. He’d spend 10 years with the Eagles before finishing his career at N.C. State. Considering – let alone accepting – that the sport that gave him purpose and direction, the one he used as a foundational guide for the hundreds of young men he coached, was his undoing felt impossible. Like he was not only betraying football, but the men he recruited to play it as well. But as his condition deteriorated, he reluctantly agreed. “Mostly,” Maura says, “because he wanted to prove me wrong.” ‘Parented by a ghost’ Hadley Horton is only 18 and she’s already made a TED Talk. Crafted via TEDEd, her “Grief, Joy and the Magic in Between” talks about her beloved Elf on the Shelf, Tommy, who she used to write to as a child. The conversations used to be silly, targeted entirely around the holidays, but Tommy eventually became a pen pal and even a therapy chair, Hadley often sending notes off to the North Pole long after Santa’s work for the season was done. Eventually she discovered, via the Notes app on Maura’s phone, that her mom was Tommy. “Through letters and tiny acts of care, she taught me that love doesn’t always announce itself; sometimes it quietly anchors you,” Hadley says in the talk. “When I reflect on Tommy’s impact on my life, I understand that that belief in something bigger than yourself can often times get you through difficult times.” This is half of what Maura wants people to understand; that there are people behind the statistics, that there are children who have grown up without a father and spouses who saw their life upended, never to be righted again. And it is not just NFL players. It is kids whose dads played college ball or even stopped in high school after having their bell rung one too many times. “It’s like they’re still being parented by a ghost,” she said. Yet as Maura navigated her new normal, she realized quickly that the resources available to families faced with similarly grim diagnoses weren’t there for her. CTE, instead, is always about the after, about the postmortem brain study that confirms the presence of the disease. Except, it’s in the during that people need help. When Don was intitally diagnosed with Parkinson’s, he and Maura immediately scrolled to the Michael J. Fox Foundation. They found scads of information about medication and care, and research for a cure. In a powerless situation, it felt empowering to grab hold of something that could better their lives. But when Maura began to suspect CTE, she found considerably less information. There is the organization that Nowinski founded and one other, Concussion to Empowerment. She attended one family summit and struggled to find any advice about medication or treatment. She even questioned why, when Don first went in with his symptoms, no one thought to ask if he played football, to at least put CTE into the equation. More, she realized, he was one of thousands – countless college football players and guys who stopped after high school; military members and soccer players – who used their heads as battering rams. Her own daughter, Hadley, played soccer and continues to play at the collegiate level. Ten months after her husband’s death, the CTE Center and Concussion Legacy Foundation confirmed what Maura already knew; Don had CTE. The disease is graded for severity, with four being the worst. Don was somewhere between a three and four. “He didn’t play in the NFL; he didn’t have a pension plan,” she said. “It wasn’t like he had protection or resources or a community around us to help navigate. It always felt like I was in fight mode. There is so much room for growth. It’s like if you compare it to Mothers Against Drunk Driving, there’s no education component. It’s just, ‘go play flag football.’” ‘It happened to us’ Maura still loves football. She still watches it, still supports the former players and other coaches Don worked with. It is, as it always was, part of her fall schedule. But when she’s asked what she would say to a young mother who was weighing to let her child play, she pauses. She talks about parental motivation, about the hope that one’s child can find the value of teamwork and enjoy the camaraderie and life lessons of sport and wonders out loud if maybe it’s not worth considering another sport instead. “There are so many choices,” she says. “Because that’s the problem. So much of the conversation centers around the NFL; people can’t conceptualize that it can happen to their family. That’s what really needs to change. “People think that because they’re not part of that world, it’s not about them. Well, we weren’t either, and it happened to us.”