Brain Injuries and Free Agency

By: Mormon Heretic
August 18, 2014

Robin Williams

Nearly everyone has been heart-broken over the news of Robin Williams. In recent days, we have discovered that Williams not only had been suffering with depression for years, but also was recently diagnosed with Parkinsons Disease. Because of Williams death, physicians are being advised to more aggressively treat patients for depression that have been diagnosed with Parkinson’s Disease.

How much free agency do people with brain disorders have? Mormons generally believe that people born with mental retardation or Down’s Syndrome are not in need of baptism. (A teenage girl with Downs Syndrome on my old ward, daughter of a member of the bishopric, recently elected to become baptized herself so that she could participate in baptisms for the dead with the young women of the ward.) But when brain injuries, such as stroke, Alzheimer’s, Dementia, depression, etc., hit someone later in life, how much free agency do they really have?

I was fascinated recently with the PBS documentary League of Denial. In short, the National Football League is facing a crisis of lawsuits concerning head injuries of players. It is becoming alarmingly apparent players have an increased problem with dementia and Alzheimer’s, and a recently discovered brain disorder, Chronic Traumatic Encephalopathy (CTE) has been discovered in the past 15 years or so. The discovery of the disease was quite interesting. Mike Webster, the Hall of Fame center for the Pittsburgh Steelers had been a great husband and player, but became so erratic late in life that his wife divorced him and he became nearly homeless due to his erratic behavior, drug addiction, and diagnosed depression. The NFL initially declared that Mike had been mentally disabled due to his career, and made an undisclosed settlement. Mike died of a heart attack in 2002 at age 50. His family asked for an autopsy, and Dr. Bennet Amalu was surprised to learn that Mike’s brain did not have the classic look of Alzheimers. Amalu became the first to discover CTE. Currently, the only way to diagnose CTE is after death. Many other football players have been discovered with CTE.

  1. Junior Seau, a Hall of Fame player with the San Diego Chargers and New England Patriots, recently commit suicide at age 43 by shooting himself in the chest, and left a note that he wanted his brain studied.
  2. Chris Henry, just 26 years old, was involved in a domestic dispute with his girlfriend. She fled in a truck, he jumped in the back and either fell out or jumped out to his death.
  3. The most shocking case involved 21-year old Owen Thomas, a University of Pennsylvania football player. He hung himself in his dorm room. He had no history of head injuries or concussions.

How many football players drug and alcohol addictions, domestic violence, and other erratic behavior can be attributed to CTE? Leigh Steinberg, a sports agent for Hall of Fame quarterbacks Troy Aikman and Steve Young, both of whom left the game due to concussions, told a situation in which Troy was knocked out of a game. (You can watch Leigh’s interview here.)

So Dallas vs. San Francisco was a game where I had large numbers of clients on both sides, and also both quarterbacks, both number 8s. And I happened to be sitting for that game next to former President Bush in [Cowboys owner] Jerry Jones’ box.

So Dallas wins, and they were exultant. So my first job was going to the losing locker room to console Steve Young and Brent Jones and Tim McDonald and all those clients. Then I went to visit Troy, who was at Baylor Med Center in downtown Dallas. Now, Dallas was awash in celebration, as only Dallas can be — horns honking, fireworks. The air was filled with celebration and shouting, and Troy was sitting in a darkened hospital room all alone.

As I went in his face brightened, and he looked at me, and he said, “Leigh, where am I?” I said, “Well, you’re in the hospital.” He said, “Well, why am I here?” I said, “Because you suffered a concussion today.” He said, “Well, who did we play?” I said, “The 49ers.” And he said, “Did we win?” “Yes, you won.” “Did I play well?” “Yes, you played well.” “So what’s that mean?” “It means you’re going to the Super Bowl, and you really only have a week here to prepare.” “That’s great. That’s great.” His face brightened.

So we celebrated for a moment. Then maybe three or four minutes passed, and he looked back at me, and his face was troubled again, and he said, “Leigh, why am I here?” For a minute I thought he was joking, and I said, “You had a concussion.” And he said, “Did I play today?” “Yes.” “Who’d we play?” And I went through the same sequence of answers again. And his face brightened, and we celebrated again.

Maybe 10 minutes passed, and he looked at me with the same puzzled expression and asked the same sequence of questions. It terrified me to see how tender the bond was between sentient consciousness and potential dementia and confusion was. I finally wrote down on a piece of paper the 10 most commonly asked championship-night questions and answers so we could hold them in front of him and stare at them.

But I, at that moment, became absolutely convinced that I could not any longer represent people that I cared for and loved, and had a fiduciary responsibility, without doing everything in my power to discover the causation and work on the ways of prevention and cure for this problem.

Steve Young of the SF 49ers, and former BYU Cougar.

Leigh goes on to discuss Steve Young’s last game against the Arizona Cardinals. Steve had been blindsided by a hit and was lying on the ground.

I thought he had a concussion. And then I remember he came out after the game, and they asked him if he had a concussion, and he said no. And I thought at that point that was a lot like asking a drunk driver if he was drunk, because if the issue was whether or not he was impaired, asking an impaired person to evaluate his own condition was hardly the point.

It became clear to me at that point that players didn’t know enough about what constituted a concussion to be able to self-diagnose.

Let’s talk a little bit about Steve Young, because we talked to him the other day. … You sit down at one point in ’97, maybe before that, where you sat down with Young and talked about concussions, the dinner in San Francisco after a Sunday game, and you ask how many concussions he had had. Tell me that story.

I recall asking Steve how many concussions he’d had, and his response was, “You mean official ones?” I said, “What’s an official concussion?” He said, “Well, an official one is when you’re knocked out and carted off the field. But,” he said, “I get dinged all the time and just continue to play.” He said, “We might dumb down the playbook a little bit, but,” he said, “I couldn’t count those.”

A number of those, in other words, was impossible. So he was getting his bell rung, as the saying goes, constantly. What were you thinking when he said that?

It started me thinking about the issue of subconcussive hits, because there had to be damage occurring every time the head was hit. And if the definition of a concussion is not being knocked out but a blow to the head or body occasioning a change in brain function, then it meant that there was damage occurring every single time that he got dazed. And that meant that there was potentially a cumulative effect, an aggregate of all those undiagnosed hits that could be consequential. And it started me thinking about the fact that 99 percent of the players in a game were suffering subconcussive hits in every game. And an offensive lineman — and [defensive] linemen were certainly suffering them on every play, so that all of a sudden what we had was a ticking time bomb. We really had a health epidemic that was undiagnosed, because what was clear to me was we did not have older players that were overtly talking about having this symptomatology, so they weren’t aware of it. One or two things was happening. Either the older players were unaware of it or in denial, or the problem was going to get much worse, or both.

Leigh even notes that players who “head” the ball in soccer have problems with brain injuries, so football is not the only sport with the problem. Football has an astonishing number of players with CTE, but other sports like wrestling, baseball, soccer, hockey, and rugby have players with CTE as well. Steinberg is now a strong advocate to helping avoid CTE.

There were quite a few of you that took exception to my post discussing President Monson’s possible dementia a few weeks ago. My issue is not with his age, but rather is Monson acting like Steve Young where “We might dumb down the playbook a little bit” in order to give the appearance that Monson is functioning, but in reality, should he be taken out of the game for his own health? Are we denying his brain injury just as Steve Young, the coaches, and the players around him?

Finally, I had an interaction with my father last week, and I realized my father might be showing signs of dementia as well. (Incidentally, my father did play football as a youth, but basically prohibited all his sons from playing.) He has always been really good with computers, but had an astonishingly difficult time remembering and changing his password. My sister in law is a nurse, and she said she had noted problems with my father for a while. I asked her, “What does one do with a parent suffering from dementia?” She said early intervention is the best, but getting a parent to go to the doctor can be a very difficult process. Parents resist, just as Steve Young did. Sometimes an indirect approach from the spouse is beneficial. All I know is that this is a conversation that I do not want to have, but I know I need to have.

Some questions for you.

  • How do you deal with a parent with dementia?
  • How much free agency does a brain-injured person really have?
  • How can we de-stigmatize depression, Alzheimers, and other brain disorders?
  • If you were diagnosed with a brain disorder, do you think that assisted suicide is acceptable?

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7 Responses to Brain Injuries and Free Agency

  1. Randy B on August 18, 2014 at 6:58 AM

    What a great read. Eye opening. Thank you

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  2. New Iconoclast on August 18, 2014 at 7:26 AM

    Minnesota Vikings great Wally Hilgenberg, originally diagnosed with ALS, is now thought to have died of complications of CTE. His brain seems to be a perfect research specimen, and the above article also indicates some of the political problems with criticizing football as a cause of CTE.

    I think it’s hard to answer your question about agency, given the fact that brain injury and mental illness can run along a spectrum from slightly to severely impaired. Clearly, there are some impairments that do affect agency, and they’re most clearly seen in people who have distinct injuries to specific parts of the brain that cause obvious changes in personality, affecting impulse control and so on. There’s a pretty large body of case research on that kind of thing. But those of us who deal with depression and anxiety? Addictive disorders? Autism or Aspergers Syndrome? Other organic issues not caused by measurable injury? That’s a lot more difficult to judge.

    My sisters and I have had the discussion with my dad about how it should be handled if/when we believe he’s gotten to the point where we think he’s a danger to himself. We expect pushback and resistance, and he knows it, but we’ll deal with it. I think being up-front about it while everyone is still competent is key to helping things work out.

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  3. Dexter on August 18, 2014 at 4:59 PM

    I enjoyed the article and I think more awareness about brain injuries is important. I have been saying for years that in 50 years we will look back at how rampant tackle football was in America and shake our heads at the barbaric nature of the sport. Football, as we know it, will not exist in 50 years, nor should it. Flag football might be around, but the head injuries are too dangerous.

    Regarding your question about free agency, you presuppose that we have free will to begin with, with or without brain injuries, which is a much more difficult question than most people are willing to appreciate. But putting that aside, those with brain injuries do not have the same free agency a healthy person does. I don’t know how this can be argued. Healthy Junior Seau never seriously considered suicide. CTE Junior Seau killed himself. He even asked to have his brain studied. CTE altered the way he thought completely.

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  4. Alo on August 18, 2014 at 6:36 PM

    My mother in law has schizophrenia, which in the past has caused her to steal and break things she believed were “evil”

    One of my best friends has severe ocd, one compulsion he has developed is to watch pornography to stop his mind from thinking deeply disturbing thoughts (sadly the pornography makes his ocd better at being disturbing).

    My father died of a brian tumer, it effected his ability to understand his and other’s actions. One example, he pushed me into a display at a grocery store, and laughed.

    I know many more people who suffer from depression and anxiety(one with aspergers syndrome). I guess you could say, I’m as well versed in mental illness as someone that doesn’t suffer from it can be.

    In my opinion, God would not be perfect if they didn’t take all things into consideration. A persons mental capacity will absolutely be a facter in the sins they commit, and how responsible they will be of them.

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  5. Mormon Heretic on August 18, 2014 at 10:03 PM

    I agree with all the commenters. It was easy to blame someone for suicide when we didn’t really understand depression or other factors very well. I know that many football players have been addicted to pain killers and other drugs (alcohol, cocaine, etc), and now I wonder how many are addicted due to CTE or other factors.

    The Chris Henry case was one that really astonished me. I remember the news reports that happened, and he just seemed like another crazy football player doing domestic violence. But then to discover that he had CTE, I just wonder how God will judge these situations. How many other players involved in domestic violence can be attributed to brain injuries? I mean it really make judging these people very difficult–I’m glad it’s God not me doing the judging.

    I’m really worried about Steve Young. He appears fine now, but my bet is that he will have problems with memory as he ages. I know that another BYU quarterback, Jim McMahon, (who also played for the Chicago Bears), is really struggling with memory problems and dementia. He had quite a few concussions as well.

    I watched a documentary on Mohummad Ali, and his trainers knew he was in trouble before his last fight with Larry Holmes, but they all knew how much money he would make in the fight. Now Ali can’t even speak. It is really sad.

    I just hope we can better understand brain disorders and lose the stigmatization of them.

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  6. A Happy Hubbie on August 19, 2014 at 3:06 PM

    Thought provoking article.

    The one thing that I find surprising that anybody would judge someone harshly that takes their life. I have never done that and to me that feels odd to do so. I always have been the the empathetic type and not very judgmental.

    I guess I can think of a situation where someone really is not in pain, but wants attention so they make a show of an attempt.

    In my life all the individuals that have taken their life, they were struggling for years with depression.

    Having had a bout of depression once myself, I have nothing but empathy for the pain they must be in.

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  7. forgetting on August 23, 2014 at 10:53 PM

    MH:

    It was discouraging to see the pushback
    you received when you posed the question about President Monson and dementia. I think part of the negative reaction comes from a misunderstanding of the term dementia. Dementia is not a mental illness itself but a describes a group of symptoms. For whatever reasons it seems our church culture, overall, still perceives illnesses and suffering as related to sin; like prosperity gospel in reverse. Having suffered from dementia in the course of my brain damage, I appreciate someone voicing some hard thoughts. It is a valid question, with hindsight I know just how dysfunctional I was. I was hard to live with. It was hard on the marriage. It wasn’t just the trial of extra care I needed. Living with some that has memory loss and other symptoms of dementia is a unique and tiring challenge of itself, and that doesn’t include living with and caring for someone with seizures. It was hard on her to watch my life slowly be taken away. So I have to wonder at how much pressure and emotional strain is being placed on his loved ones and the Brethren close to him.

    I also can't imagine that the pressure of having to offer the appearance of functionality, if that is happening, makes his life easy or a joy. It sounds like the nightmare I was trapped in.

    How do you deal with a parent with dementia?

    I don't know yet, and we are having to figure that out. My father has always been difficult, and that with a temper. He was raised by an alcoholic and abusive parent. He also played football and wrestled up through college (state champ in college even), and I think this article applies to him and his condition. He started showing signs a long time ago, and is slowly getting worse. I really haven't found an answer yet.

    How much free agency does a brain-injured person really have?

    Not much agency or will is expressed. There is a great sense or illusion of agency at that time however, and many thoughts and choices seemed rational as they were made (they were not). Some still do, even when seen from this view. When I ponder back, or while working with returning memories, I can definitively see the illusion of agency, but that is all it was. It is hard to express, and it wasn't just the big choices, it was also day to day life, I did things so out of character for me that it would have seen like insanity to those that knew me.

    How can we de-stigmatize depression, Alzheimers, and other brain disorders?

    The only way I have found to do this in our families is to be open and frank about it. Oh, and lots of education. I swear we must get our knowledge of psychology from skimming Reader's Digest. I spent over a decade hiding it from family and friends when I should have been seeking their support and help. In our church culture we still commonly misunderstand brain disorders as resulting from sin. I thought it was from something I did wrong or believed wrong . To be sure, it has been that way in the Judaeo-Christian tradition probably from the start, our scriptures are filled with examples as disease as sin. Even when we do see it as just a condition, or part of mortality, there is still a stigma attached to speaking about it. We all look away from the guy without legs, an no one talks about him. We don't like what makes us feel uncomfortable.

    If you were diagnosed with a brain disorder, do you think that assisted suicide is acceptable?

    There was a period of time that I thought that suicide was acceptable, not from depression, but from frustration and despair (an absence of hope). This just made me angry and despondent. For a time I spent a lot of mental energy over that question – “Was my current life worth continuing?”. It was a matter, in those moments, of if it was better to end it now while I still had some of my past to hold on to and cherish, or to try to hold on to just living and accept the continued loss of who I was. Either way, I was loosing my life. That, I am pretty sure, was me being rational too (with the brain damage and all who knows though, maybe I wasn't).

    I was fortunate in an unfortunate way. I found myself one night in a position to help prevent a suicide jump, although there was still a fall (I held on until she just slipped) and traumatic injury. That snapped me out my own worrisome thoughts. I still have a “do not resuscitate” and “no extreme measures” in place medically though.

    I think that my pharmaceutical regime didn't help. It is my experience that medicine aimed at the functions of the brain, and especially the seizure meds (like topiramate or depakote), and SSRI/SNRIs make it very hard to feel the Spirit. SNRIs are also used for depression and anxiety, the times one would think when you need to feel the Spirit the most.

    To everyone that challenges a person's suicide, or thoughts of suicide, I ask them to remove both the mote and the beam from their own eyes; in regards to mental disease, until you experience it, you will always be doubly blind.

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