This past Sunday night, the CBC’s investigative news program, The Fifth Estate, broadcast a report in which the wives of three former NHL enforcers shared moving stories of their experiences with the long-term consequences of brain injury. The half-hour segment, titled “Hockey Fight: Wives Reveal the Cost of Concussions,” was hosted by Bob McKeown and was also accompanied by a written piece for CBC.ca published by Virginia Smart and Lisa Ellenwood.

The CBC reports were focused around interviews with Jennifer Belak Liang (wife of the late Wade Belak), Kelli Ewen (wife of the late Todd Ewen) and Ela Bulawa (wife of Daniel Carcillo). Belak Liang and Ewen both explain how they witnessed severe changes in their husbands’ behaviour and cognitive capacities over time, providing harrowing accounts of the aftermath of their husbands’ suicides and describing the emotional journey tied to the post-mortem diagnosis of Chronic Traumatic Encephalopathy (CTE) in their husband’s brains. Bulawa, as well Carcillo himself, speak openly about the day-to-day challenges of their family life as Daniel navigates the ongoing effects of brain trauma. The stories are heart-wrenching, but also provide an important window into how partners and families are often at the centre of efforts to hold sports organizations like the NHL accountable for the struggles faced by so many former players.

Dr. Deana Simonetto, an assistant professor of Sociology at the University of British Columbia Okanagan has also heard plenty of these types of stories. Through her current research project, Dr. Simonetto has interviewed dozens of athletes and their family members about how brain injury has shaped their lives. I had a chance to chat with Deana about her research and her reactions to the Fifth Estate report. Here is an excerpt from our conversation (which has been edited for length and clarity):

Matt: For starters, can you tell us a little bit about your research into TBI and athletes’ families? What are you hoping to find out? What methods are you using? Who are your participants?

Deana: When I was conducting interviews for my dissertation research on women’s involvement in their husband’s professional sport careers, a participant told me a story about her husband coming home from a game and not remembering that she was pregnant. He had suffered a concussion in the game. When I asked how long the concussion kept him out of the lineup, she turned and said to me, “oh, he never stopped playing. He played the entire time.” This was in 2013 and at that time people were more hesitant to talk about concussions in sport than they are now. It was still considered a taboo topic at the time. I learned how families are incredibly impacted by an athlete’s injuries, especially concussions. When I realized how deeply families are affected by concussions, I decided I would examine what happens to families faced with the aftermath of these injuries.

The research has four key objectives: 1. Document the experiences of the families of professional athletes who have sustained concussions or other types of traumatic brain injury (TBI) through sport 2. Explore the impact of these injuries on marriages, relationships, and family dynamics. 3. Consider how families adapt and negotiate their relationships in response to the effects of TBI. 4. Identify the long-term consequences of TBI for families.

It is a qualitative study and I’m interviewing families of men who have experienced multiple concussions/traumatic brain injuries throughout their professional sports careers. I have been interviewing anyone from the family – from the athlete himself, to his spouse, his parents, and even his children. To date, I’ve interviewed members of 28 different families (for a total of 46 participants) of athletes from sports such as football, hockey, rugby, boxing and bull riding who have played in either professional or semi-professional leagues.

M: Given the nature of your research, what were your initial reactions to the Fifth Estate report?

D: It confirmed so much for me. I’ve listened to many stories like the ones from Kelli Ewen, Jennifer Belak, and Ela Bulawa (Carcillo). I’m happy to see that these women are raising awareness of what families go through – and this is especially important for hockey because based on my research hockey players tend to be the least likely to share their experiences. I’m not sure why, it may be because hockey plays a large role in Canadian Identity or that there have been fewer CTE diagnoses in hockey players compared to football. Either way, there appears to be a culture of silence among hockey players when it comes to talking about their experiences of concussion.

I hope that many of the participants I’ve interview watched the Fifth Estate episode because many of them have described how they feel so alone and don’t know what to do. Knowing that they are not alone could really help. Many of them are looking for support, advice on what symptoms to look for, and advice on what other families are doing to navigate these struggles…As you have written about, we are learning a lot about the neurobiology of concussion, sub-concussive hits, and CTE, but the lack of agreed upon evidence suggests there is still a great deal of uncertainty surrounding the science and there is very little consensus about what the science tells us or how we might diagnose CTE in the living (Author’s Note: As Deana alluded to, I have indeed written about the different ways uncertainty around CTE gets produced here and here).

Screenshot from “Hockey Fight” – Host Bob McKeown in conversation with Jennifer Belak Liang

M: Why is it important to foreground the voices of the partners and families of athletes who have experienced brain trauma?

D: The families are the people who know what is happening to an athlete on a day-to-day basis and have first-hand knowledge of problems or incidents that have occurred. Much of my research has highlighted how athletes suffer memory loss. On the Fifth Estate, Kelli Ewen recalls a situation where Todd called her from the car because he couldn’t figure out where he was and couldn’t remember how to get home. For families I have spoken with, this type of experience is very real for them. It can start as little things at first – like an athlete forgetting what groceries to buy by the time he got to the store, which can certainly frustrate spouses! But many of my participants have described how these types of incidents can gradually get worse to the point where family members have spoken to me about how much they fear when their husband/dad is driving and can’t remember where he is.

M: The CBC program was specific to men’s professional hockey, but you’ve spoken with family members of athletes from several different sports. Have you encountered any interesting differences across sports or do experiences tend to be very similar? 

D: I have not found too many differences in the difficulties families experience across sports. One thing I have noticed is a difference in how my participants talk about their sport compared to other sports. They’ll say things like, “The concussion problem is more serious in football than in rugby or it is worse in football than in hockey. And it seems like this is a way of trying to defend their sport, even when their career in sport could be responsible for their current ailments. Many of the families I have talked to are struggling in a lot of different ways, but they allow their children to play the same sports they did. In some cases, they still value what they have gained from that sport (e.g. opportunities to travel, financial benefits, friendships, or active lifestyles) and believe there are positives to playing that sport that outweigh potential risks for their kids.

Screenshot from “Hockey Fight” – Kelli Ewen

M: One the most moving scenes of the report for me was Kelli Ewen’s description of the emotional release and vindication she felt when Dr. Ann McKee at Boston University diagnosed her husband with CTE. What have you learned from your interviews about how these families engage with scientific research and medical diagnoses?

D: Many of my participants have told me that a medical diagnosis can bring a sense of relief. And this makes sense in a lot of ways. Imagine that you are in a relationship with someone who you probably have been with for a very long time. I can say that in my dissertation work I found that the majority of couples had known each other before the husband started his pro sports career (Author’s note: You can read Deana’s published work on this topic here). And then imagine that they transform into someone you no longer recognize and you can’t explain their behaviour, moods, and emotions. This is a person you know so well and now you are at a loss. When the athlete dies, a CTE diagnosis helps explain that erratic or uncharacteristic behaviour. It can ease the guilt that many wives feel and may help them come to terms with what happened. Being able to say “that wasn’t him, it was the CTE” is something that I believe can help families make peace with what has happened.

And there is the fear! There is so much fear. Participants have told me about their fear around what is happening to their family member and whether symptoms are getting worse: Does he have CTE? What is going to happen next?

We need to discuss how many families talked about their fear, even when the athlete is not suffering in these ways. It’s important to note that many of the families I spoke with are not currently experiencing serious problems. I’ve talked to a group of people who mention minor issues like memory problems, but do not have experience with mood changes, or depression and anxiety or erratic behaviour. Yet even for this group, participants have described how they read into every little issue an athlete faces and ask themselves “Does this mean he is going to develop CTE?”  Since there are no tests to diagnose CTE in the living, it becomes a guessing game where athletes and their families just have to wait and see. I’ve asked participants if they would get tested for CTE if such a diagnosis was possible in living people, and almost all of the players I’ve spoken with across different sports have said they would. Yet surprisingly, a lot of the spouses I’ve talked to said they wouldn’t want to know. I remember one participant said that she wouldn’t want her husband to get tested because, in the event of a positive diagnosis, she didn’t want to “sit around and wait for it [the symptoms] to get worse.”

M: What do you hope will be some of the main outcomes of your project?

D: A few things. I want to tell these families’ stories so they can have their voices heard. I can’t tell you how many times my participants have thanked me for doing this research and taking the time to listen to their stories and lived experiences. So many families feel like they’re in this alone. There is a lot of power in knowing that others are going through the same thing and having opportunities to find support from other. In the one of scenes on the Fifth Estate, they bring Jennifer Belak and Ela Bulawa (Carcillo) together and they share their experiences. This is the key. So many of my participants have explained that they really want to be able to connect with someone who is going through the same thing. So I hope my research will help us develop better support systems for these families. It shouldn’t require the death of an athlete for a family to receive community support. At the conclusion of my research, I plan on writing a report for the families with a list of supports and recommendations that they could use to help improve their lives going forward.

I want to emphasize how the media and science play a large role in how these families get their information about the effects of brain injury. Families are forced to interpret what is said in the media about the science of TBI and the reports about CTE or suicides can make them feel hopeless. I’ve talked to athletes who say they believe they have only five years left to live based on findings from a single scientific study they read or others who read a story about an athlete’s suicide and believe that they are destined to do the same. I really want to bring awareness to how people’s lives are impacted by the ways we share research and represent it in the media.

And most importantly, I want to give families hope. I’ve heard stories that inspire hope and remind us that not everyone who experiences brain injury dies at 35. Some men live a lot longer before they start to exhibit any long-term effects of brain injury. But we’re less likely to see those stories covered by the media. There needs to be hope. We also need to listen to stories about how families are successfully managing the aftermath of brain injury and living their lives. It’s important to have that well-rounded understanding of the different types of experiences and I hope this research will contribute to that.