At first, he scoffed when his wife suggested that he donate his brain for C.T.E. testing, saying “‘I’m going to donate my brain just to prove you wrong,’” Maura Horton said.
Affliction, and Opportunity
Over time, however, as more neurological functions began to fail, Horton, in quiet moments at home, accepted that he could have C.T.E. and that it might even present an opportunity.
Much is unknown about the disease, including why, for instance, some players get it and some don’t. Nearly 100 former N.F.L. players have been found to have the disease, including Hall of Famers like Ken Stabler and Junior Seau, but research on college players who did not play professionally is not extensive.
By donating his brain, Horton believed he could aid the science and, ultimately, perhaps help people evaluate whether to play, or continue playing, the game.
“He wanted to make a difference if he could,” said Maura Horton, 47. “Don would never tell someone not to play the game, because he loved football and wouldn’t betray it. But he wanted them to see a full picture to make a full decision.”
She added: “Don said, ‘If they would be more reflective and be more upfront about things that were happening to them, they might get out of the game earlier if they needed to. Kids try to hide so much about what’s really happening.’”
By 2013, Horton had left North Carolina State, but he felt the pull of the game. He became an assistant coach at a high school a few miles from his home in Raleigh. Despite his inner conflict, Maura Horton figured, the game and coaching were too ingrained for him to turn away. He did preach lessening contact at practices.
“Don never perceived the benefit of lining up and just knocking into each other, especially for a lineman who gets hit on every play,” Maura said.
After two seasons at the high school, however, his unstable mobility forced him to leave the position. He stopped driving after a minor auto accident.
Horton still worked out for hours at the gym, believing that exercise would combat his infirmities, but neurological irregularities were sabotaging his body, including his blood pressure. Maura would get a call from the gym because Don had passed out.
On Sunday, May 15, 2016, Horton fell again, opening a gash on his head that required stitches. An ambulance took him to a hospital, and then he entered hospice care. As his family left the facility that night, he turned to say: “Bring home a win.”
Said Maura: “I think he thought we were going to a soccer game or something.”
By the next morning, Horton was no longer speaking. He died two weeks later.
Maura signed the paperwork to have his brain tested and told almost no one about it.
In March, representatives from the Boston University C.T.E. Center and the Concussion Legacy Foundation informed Maura Horton that the examination of her husband’s brain had revealed the presence of C.T.E.
Doctors grade the severity of the disease on a scale from 0 to 4, with 4 being the highest. Horton’s C.T.E. was at stage 3 or 4, according to Dr. Ann McKee, chief of neuropathology at the V.A. Boston Healthcare System and a professor of neurology and pathology at the Boston University School of Medicine.
Dr. McKee, who conducted the examination, also noted that Horton had a “pretty severe” case of Parkinson’s disease, adding that C.T.E. can accelerate the progression of Parkinson’s.
“It is likely that he had C.T.E. originally and that it may have contributed to the early onset of Parkinson’s,” Dr. McKee said.
Maura Horton was not surprised by the diagnosis, and neither was she startled by the overarching question posed afterward by her daughters. They asked: What does it mean?
In the interview, Maura Horton explained the many ways she has interpreted the C.T.E. finding for her daughters, but most often she came back to one point.
While N.F.L. players have become the face of C.T.E. in football, she said, it is just as serious a threat to lesser known ex-players like Horton.
“People read the C.T.E. stories on the N.F.L. level because it’s been so highly publicized, but I don’t think people see it as something the average person gets,” Maura Horton said. “But there are more people who are going to be affected who played in the N.C.A.A. than played in the N.F.L. That’s what I told our girls: It’s going to be average guys like your dad.”
Don Horton never discussed how many concussions he had as a player.
“He would say: ‘We didn’t call them concussions. We called them getting your bell rung,’” Maura Horton said. “And I’d ask him how often that happened, and he said: ‘Probably like 15 times. We just played through them.’”
“But as I’ve told our kids, the number doesn’t matter. It was obviously too many, because he’s no longer with us.”
Numerous former players and colleagues said Horton had not raised the issue of C.T.E. with them. At the same time, they were not surprised he was worried for them.
“When I heard about his C.T.E. diagnosis, my first thought was that Coach Horton was probably more concerned about us and feeling guilty about pushing guys into the game,” Scott Dragos said. “I figured he’d be thinking of others first.”
The Hortons are still big fans of college football and watch the sport almost every Saturday in the fall. At the end of games, Maura Horton gathers her daughters to watch postgame interviews with the coaches.
“I still believe the lessons learned in football are really good,” she said, mentioning things like teamwork, work ethic and learning how to win and lose. “And if it’s something their dad would have said, I want them to hear it. The message is still right even if their dad isn’t there to deliver it.”
At the same time, she wants more former football players, and other athletes, to donate their brains for research.
“Clearly, we don’t know enough about C.T.E., and we need more brains to study,” she said. “We need to continue to do the research to make the game as safe as it can be.”
In the hours after Don Horton died, doctors informed Maura that because Don was only 58, an autopsy would be performed.
When Maura Horton received her husband’s death certificate last year, her eyes were drawn immediately to the cause of death: blunt force trauma to the head.
She was upset because Parkinson’s, which she believed had caused the fall that preceded his death, was not listed on the death certificate.
“Then one night I thought: Maybe that’s poetic justice,” Maura Horton said this month at home, where pictures and reminders of Don are in nearly every room.
“Nobody said when the blunt force trauma happened,” she added. “Maybe that’s what this was all about.”