Wearing a black shirt with “Fight for your happiness” on the front and “Sick not weak” on the back, Daniel Carcillo eats an apple as his wife makes a cappuccino nearby and their oldest daughter scampers around the kitchen.
This is the family he always wanted, just not the life he expected.
Carcillo is hurting inside and out after seven documented concussions in the National Hockey League and what he believes could be literally hundreds of traumatic brain injuries. Once his wife Ela, son Austin, daughters Laila and Scarlett and dog Bubba left the house, Carcillo explained where his head is at. It has been nearly a year since his last round of neurological treatment and right now the bad days outnumberthe good. Darkness has returned.
This is a bad day.
“I’m going to choose when I’m going to go,” Carcillo said. “I’ll make that decision of how much pain I’m going to put my loved ones through that are around me.”
He is just 34, hung up his skates in 2015 and wants to be known as Daniel Carcillo who used to play hockey, not Daniel Carcillo the hockey player. He spends his days now trying to manage the damage the sport did to him while also crusading against the concussions crisis that has hit the NHL over the past decade-plus. The league has taken steps to address the topic, but it has not faded from view by any means as the Stanley Cup Final opens Monday.
The league last fall settled a lawsuit for $18.9 million with more than 300 retired players after winning a key victory against class-action status. It included $22,000 for each player and provisions for testing but no acknowledgement of liability for the players’ claims the NHL failed to protect them from head injuries or warn them of the risks involved with playing. Commissioner Gary Bettman has consistently denied there is a conclusive link between repeated blows to the head and the degenerative brain disease chronic traumatic encephalopathy.
Carcillo calls the concussions issue an epidemic, though even the players’ union and attorneys involved in lawsuits against the league cannot or will not provide an estimate of just how many former players might be suffering the same problems as Carcillo – the kind of problems loved ones of players like Todd Ewen and Wade Belak noticed before their suicides.
Various studies have tried to determine how many concussions there are in any given season in the NHL. There’s little doubt to retired players that the total among 700-plus players over nearly 1,300 regular-season games, whatever it may be, is too much.
“It’s definitely a problem that players are suffering from,” said Reed Larson, who played 936 NHL games and was among the first to sue the NHL over head injuries. “It’s a real threat.”
Carcillo isn’t fine and he knows it.
He doesn’t remember any of his first five concussions but can’t seem to escape the anxiety, depression, lack of impulse control and suicidal thoughts that creep in. He feels better in the immediate aftermath of functional neurology therapy with Dr. Matt Antonucci, but that only helps Carcillo get back to his “new normal.” It also costs $10,000 each time.
“My greatest fear moving forward is that I will contract some sort of neurodegenerative disease like early-onset dementia, Alzheimer’s, Parkinson’s, CTE,” Carcillo said. “And then my wife and my two daughters and my son will have to watch me deteriorate and die.”
Carcillo spends his days now speaking out about the dangers of brain injuries in hockey and other sports. He frequently takes to social media, hoping to use the platform for the greater good.
But time is running out for the journeyman forward who played most recently for the Chicago Blackhawks. Carcillo doesn’t have a full-time job and estimates he has two years until he goes bankrupt. He considers selling his two Stanley Cup rings to pay for treatment and support his family.
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“I won’t let him,” Ela says from across the kitchen. Memorabilia from his career all sits in the basement of their recently renovated home in the Chicago suburbs – framed jerseys still in bubble wrap sit next to countless pictures in a dimly lit room, all of which used to be in Carcillo’s grandfather’s house.
Carcillo sometimes gets angry talking about his situation, how he feels like generations of players were lied to about what was happening to their brains. He has come a long way since his darkest days. But last year, Ela, while pregnant, took their two other kids to her parent’s place in Florida to get away.
“I was like: ‘I need to get out of here. It’s not healthy. I’m pregnant. It’s just not fair to me,”‘ Ela said. “I went and it was probably the best decision I ever made just for the sake of him figuring his stuff out.”
Carcillo wants his day in court with the Blackhawks and the NHL, to chart a path for the rest of his life and to save others. It is also a battle just to save himself after those 429 NHL games over nine seasons.
“I keep up with my treatment,” Carcillo said. “I describe it as when you’re losing your quality of life. Good days and bad days are normal, all good days aren’t normal and all bad days aren’t normal but you just have to weigh it. I’ve been in really, really bad places, like on the edge of killing myself. I just kind of weigh it against that – not waiting until I get to that place.”
Dennis Maruk is fine for now.
Three decades removed from a 922-game NHL career, he is 63 and knows all about his counterparts who died between 60 and 65 – if not younger.
“Everything’s going good,” Maruk said. “I worry about myself in the future. What am I going to be like in two years down the road?”
Maruk, who joined the concussion lawsuit, hears about former players developing dementia and wonders about the day when his brain might desert him. All the hits to the head absorbed from hockey were worth it then.
Now? He doesn’t know.
“I have grandkids and I’m concerned about that and me losing my mind,” Maruk said. “I’m not a very good sleeper and I think a lot has to do with being concussed.”
Chris Nowinski, a former college football player and pro wrestler who is now CEO of the Concussion Legacy Foundation , is 40 and worries about his own future. When he talks to retired hockey players, he hears a wide range of things – from no concern at all to some who fear the worst.
“If they come at me and they don’t have any current symptoms, I invite them to get involved with research just in case they develop something or do it on behalf of their former teammates,” Nowinski said. “And if they are symptomatic, I tell them that the symptoms they have may be treatable and to not think about worst-case scenario and instead focus on getting treatment for the symptoms you have so you can live a better life.”
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Eric Lindros is fine most days.
The jarring Scott Stevens shoulder-to-head hit on Lindros in Game 7 of the 2000 Eastern Conference final that was applauded and legal at the time is cringe-worthy now. It came two years after Lindros took another devastating hit from Darius Kasparaitis.
Lindros was concussed at least five times during a dominant but injury-shortened career that landed him a spot in the Hockey Hall of Fame. Now a 46-year-old husband and father, he isn’t sure what the benchmark should be for how he should be feeling. He is his own baseline.
“I’d like to think I’m pretty normal,” Lindros said. “I think so. We all have our moments. We all have our moments with a few things. Overall I feel pretty good.”
Lindros could easily be the poster boy for concussions in the NHL given his experience as a star whose career was cut short. He was aware of the lawsuit and “didn’t reciprocate communication” when contacted about joining. He advocated for and contributed to the 2016 passing of a concussion safety law in Ontario designed to protect amateur athletes and educate coaches about the dangers of head injuries.
Lindros doesn’t want the threat of concussions to deter kids – even his own – from playing hockey. Still, he ponders an uncertain future.
“You’d be a fool not to,” he said. “After getting to know unfortunately as much as I do about CTE, we’d be foolish not to think about it from time to time. Certainly not something you want to dwell on.”
Glenn Healy has no choice but to dwell on the subject sometimes. As executive director of the 3,800-member NHL Alumni Association, he fields countless calls from retired players’ family members and for so long could only say, “I’m sorry.”
“It’s from the wives, it’s from the kids saying, ‘I want dad back, so how do we get dad back?”‘ Healy said. “We’re trying to find some answers.”
The alumni association recently launched a research project with NEEKA Health Canada and Canopy Growth Corp. that will test 100 former players on the potential benefits of cannabinoids as treatment for post-concussion neurological diseases. Healy just wants to give guys “some help and hope.”
T.J. Oshie said he is fine and tries not to think about it.
After his fifth documented concussion and his longest absence from the game yet, the Washington Capitals winger said he doesn’t put much thought into the subject.
“While you’re in it here, when it happens, you just want to get back on the ice,” Oshie said. “You just want to play. You want to be back in your normal routine, and you want to feel normal.”
Oshie is 32, a Stanley Cup champion and two seasons into a $46 million, eight-year contract that sets his family up for life. But he also has a father who six years ago was diagnosed with Alzheimer’s disease. On the ice last June, moments after winning the Stanley Cup, Oshie said to a huge audience: “My dad, he doesn’t remember a lot of stuff these days.”
Carcillo said his own family history should force him to get checked for a gene associated with Alzheimer’s and thinks Oshie should get looked at, too.
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Oshie isn’t reckless by any means and has embraced an abundance of caution. He doesn’t necessarily think his concussions have gotten progressively worse as they’ve piled up, still confident his second from going head first into the net in 2014 was the most severe and still battling with himself about sitting out.
“It’s kind of a tug of war with, ‘Do I want to get back and play or do I want to be 100 per cent?”‘ Oshie said. “Here they do a really good job of kind of taking that out of your hands, the trainers and doctors.”
Carcillo calls the pressure to rush back from head injuries “toxic masculinity” and something he had as a player.
Bettman said eliminating the culture of “playing through” it has been at the forefront of the NHL’s approach to reduce concussions, along with rule changes to legislate against head contact.
“(We wanted) to educate the players and everybody associated with the game on the nature of concussions to the extent we understood it so that it was OK to say, ‘I don’t feel well,”‘ Bettman said. “It was OK for one player to say to a trainer, ‘You better look at him.’ It was OK for an official to say, ‘He’s got to go in for an evaluation.”‘
Belak. Ewen. Steve Montador, Rick Rypien, Bob Probert, Jeff Parker, Derek Boogaard. All are dead.
Many of them were enforcers tasked with delivering and taking punches for teammates and all took many blows to the head. Montador, Ewen, Probert, Parker and Boogaard were posthumously diagnosed with CTE.
Montador’s 2015 death hit Carcillo hard because he saw his close friend struggle for so long even after seeking help. Christmas, New Year’s and the months of January and February are still a struggle.
On the eighth anniversary of Boogaard’s death, his mother put a note in their local paper written to him and signed by the entire family.
“Donating your brain has helped in so many ways, as painful as it was for us,” Joanne Boogaard wrote. “NHL still has a lot of work to do at acknowledging and accepting responsibility for players who have passed and those who are out there with CTE and don’t even know it. You did help in getting more awareness out there.”
That is Carcillo’s mission now. He can’t change the punch to the head that gave him his seventh concussion but wants to document every step of his journey so that if he can’t save himself, maybe he can save others.
“It’s been pretty, pretty miserable: a lot of searching, a lot of treatment and a lot of money spent, a lot of friends lost,” he said. “I need to get it figured out, or else I don’t think I’ll be here that long. If I continue to feel this way, it doesn’t bode well for my future.”