Tony Dorsett is not dead

Tony Dorsett – all those years ago

The public debate about football and its effects on cognitive health — that is to say, how all those years of head trauma can really screw you up, years later — is heating up even more. PBS ran the special “League of Denial” about the NFL’s cover-up of the brain-damaging effects of their brand of football, and now Tony Dorsett and several other former pro players have been diagnosed with early signs of CTE – chronic traumatic encephalopathy. Bleacher Report has a good write-up on it here, and ESPN has their own, which I read yesterday.

I was really encouraged to read that there’s actually a way to detect CTE in living people. Up to recently, the word was that it can only be definitively identified in the brains of dead folks. But apparently now UCLA has a fix for that. So, that’s encouraging.

But it’s never good when anyone has CTE, and both Joe DeLamielleure and Leonard Marshall were also diagnosed, but Tony Dorsett…? That was a pretty emotional discovery for me. He was one of the players who got me really excited about the game when I was a kid. I always loved football, but there was something about his performance that was even more compelling — and it almost made me a Cowboys fan, for a while. Almost.

The article over at Bleacher Report has a writeup and includes the full gamut of responses from readers — everything from “the players knew the risks, and they did it anyway,” or “they just want to milk the system” to “they’re upset because they’re not in the limelight anymore and they’re just a bunch of cry-babies looking for attention,” to “you’re an idiot – the NFL covered this up for 15 years,” to well-informed responses based on science, to flat-out denial that anyone other than linemen could sustain repeated head trauma. And here and there are counter-arguments to refute ignorance-based “rationale.”

There’s a lot of back-and-forth talk, some more useful than others, but the most important thing is, people are talking about it, and more awareness is building around the whole issue. It would be nice if folks could share information and keep an open mind without calling names, but this is the internet, after all. I do find it hopeful that people are quoting actual scientifically based facts. And what I find most interesting is how many readers are reporting that parents are not letting their kids play football.

One of the questions that comes to my mind is whether all the talk might be doing more harm than good. There’s a lot of knee-jerk reaction going on, and brain injury is such an emotionally loaded subject which hits so close to each of us, that a lot of people just stop listening as soon as they hear “brain injury”. It’s not that they don’t want to learn or understand — we’re wired to shut down our higher reasoning, when we feel threatened at a deep level, and brain injury hits a lot of us in our most vulnerable spot.

A broken bone you can see and set and watch heal on the x-rays. A broken nose you can push back into place, tape up, and wait to get better. But a broken brain? It’s invisible. It’s mysterious. You can’t even see the real issues on imaging results — at least, not those that are widely available at a reasonable cost. And you don’t have a clear-cut route to recovery. Plus, we have this really bizarre expectation (based, I’m sure on decades of science that told us it’s so) that you only have so many brain cells, that once you damage the brain, you’re done, and there’s no turning back.

Only in the past years has science amended its views — and it’s done so silently, without so much as a hint of an apology for training us all to give up on ourselves.

What’s more, I think we’re not helped by the sensationalistic (if true) focus that’s being brought to CTE and the long-term effects of repeat head trauma. All the press focusing in detail on the horrible things that happen to you after head trauma might be cementing the public perception that once you’re brain-injured, that’s it. Tony Dorsett says he’s being proactive and is going to fight this and live his life to the fullest. But given how little is generally known in the public about brain injury in general, who knows how seriously anyone is taking this? I read one article where the writer referred to his condition as his “demise” — a freudian slip, if ever I heard one.

Frankly, I’d be surprised if anyone gave him the time of day after his revelation. Yes, he is Tony Dorsett — that is, he was. Once people find out that you’ve got “brain issues,” they have a way of distancing themselves from you. It’s something they don’t want to think about. They can’t help but imagine what it would be like for them — and it scares the bejesus out of them. So, they choose not to talk about it. They’d much rather talk to Sidney Crosby, who apparently has no more head/neck trauma issues to speak of.

From personal experience, I can tell you, repeat head trauma — even mild traumatic brain injuries — can do a number on you. It can turn your emotions upside-down, trash your impulse-control, wreck your judgment, saddle you with a bunch of unpredictable and seemingly insurmountable physical sensitivities, put you in a state of constant headache and general pain… in the process destroying your relationships, costing you your job, turning your financial decision-making inside-out, and generally doing the same thing to your life that a frat party does to a frat house. And it can all happen without you ever intending it to — and never actually wanting it to.

Now, I know a lot of folks are going to say it’s a character issue, or it’s an issue of self-control or what-not. It’s not about character. It’s about how the brain works, and how our lives are ordered as a result. And when you’re brain-injured (and unaware that you’re dealing with brain injury), the very thing that’s supposed to keep everything in order is what’s the problem.

And because it’s your brain that’s impacted, you can never even realize till it’s way late in the game — for some, too late.

The thing is — if we can all get past the terribleness of it, please — there is a way out. Brain injury, even CTE, doesn’t need to be the end. The brain is an incredibly “plastic” organism that by nature re-routes its wiring and recruits other parts to take on functionality that the original parts may have lost. There have been cases of people with advanced brain degeneration never ever showing any signs of that condition — the book Aging with Grace talks about that. And you can’t tell me that all the people who have lived full lives to a ripe old age have never had any organic brain issues. The brain is a mysterious and amazing organism. Our limited understanding doesn’t change its infinite possibilities.

If there’s one thing that I hope comes out of all this — even if it’s long-term — it’s the knowledge and experience that recovery from brain injury is possible. It is NOT a death sentence. I hope someone out there gets a clue — and publishes widely on it — about how possible (even probable) it is that a person can restore quality to their life and continue to live with meaning and purpose and a sense of usefulness, even after repeat head traumas.

Making a huge issue out of football being a cause of a brain-wasting condition is only part of the story. Saying that repeat concussions is a recipe for madness and early-onset brain degeneration is not the whole truth.And focusing only on the awfulness (to raise awareness and funding) leaves me with the feeling that this terribleness is permanent and irreversible. Logically I know it’s not 100% accurate, but part of me fears might be.

Tony Dorsett is not dead. Not yet, anyway. Who knows what will take him out in the end? He says he’s got issues. He says it’s wrecking his life. He says he’s considered suicide. And he says he’s being proactive and is going to fight this thing. There is still a whole lot we don’t know about the brain, CTE, tau, and how we might be able to clear the junk out of the brain.

Personally, my money’s on exercise, sleep, a positive attitude, staying active both mentally and physically, keeping connected to a community, and solid nutrition without a ton of artificial crap crammed in between the real ingredients. But that’s just me.

Whatever other folks may choose, I hope they do choose it, and I hope they don’t give up just because things look a little grim, right now. Things always look grim, before you have a chance to do something about them. But once you get going… you never know where it’s going to take you.

In any case, the day is waiting. I have a lot that I want to accomplish today — this whole weekend, in fact.  So, speaking of staying active, it’s time for a morning walk before I get into the rest of my day. That should get things moving…

Onward.

Ignoring the symptoms to stay on the field

I’ve been watching the video of Malcolm Gladwell that I found on The Concussion Blog a few days ago. I had some time to watch the second half (I started the first half a few days back), and it is good — well worth the hour it takes to watch.

As a point of entertainment — and also a telling view into the landscape at U of Penn, which continues its football program, even after the inexplicable suicide of one of their football players who had no history of depression, but did have CTE, as evidenced in a biopsy of his brain after death — at 43:00 watch the academic try to figure out what to do at the end of Gladwell’s talk. At first he walks up to the podium and sort of stands there. Then at 43:12, he looks around and realizes he’d better start clapping with his peers (who are standing up to clap), while also stepping away from Gladwell, and not making eye contact. My vivid imagination tells me he’s clearly worried about the flak he’s going to take with his administration for having invited this upstart (from NYU, no less) who is publicly taking the university to task for their negligence in addressing football-related injuries, including CTE.  Who knows, maybe he’s seeing his whole career flash before his eyes…? He looks around a little bit, as though seeking some sort of direction from someone in the audience, then stops clapping and steps up to take control of the podium.

Good theater…

But also a telling look into the sorts of behaviors that perpetuate the prevalence of football in this country. Granted, I grew up loving football and playing it when I could (though I was more interested in track and cross country than football as a team sport). And up until I realized that my significant life/money/relationship issues I was dealing with were related to the concussion I sustained 8 years ago, I loved watching players run into each other and rough each other up on a regular basis.

I just loved it.

Just like I loved playing it when I was a kid, and I played rough when I did. For the record, I also played rough in lacrosse and soccer, when I participated in them, and I had no qualms about making physical contact, even in sports where that wasn’t supposed to happen. I admit it. I was a bruiser. And it turns out, I bruised myself, too.

A lot.

What strikes me about the Gladwell talk is how he describes Owen Thomas, the Penn player who hung himself after “a sudden and uncharacteristic emotional collapse (at 39:16)” was never diagnosed with a concussion, and was “the kind of player who might have ignored the symptoms to stay on the field” (at 39:40 of the video). Who knows – maybe it cost him his life, to ignore the symptoms he should have paid attention to. Maybe it contributed to his CTE. The evidence isn’t as clear as people demand, but it’s still a pretty compelling correlation. Somebody who obviously sustained a ton of hits (sub-concussive or more serious — to the tune of about 1,000 each season), kept quiet about any pain or discomfort he might have experienced… and he never lived long enough to tell the truth about what more he may have been experiencing. That knowledge went to the grave with him.

But still there’s the CTE.

This statement, quoted from the New York Times, haunts me. Because on so many levels, that same kind of behavior is well evident in me. I don’t like to complain. I don’t like to draw attention to my aches and pains and difficulties. I don’t like to make much of my discomforts, which are myriad and seem to never end. That’s just how my life is. That’s just how things are. It’s all background noise to the rest of my life, and while I do try at times to mitigate the issues and head them off at the pass, after a certain point, I just quit trying to fix them and try to focus on other things which are more productive (and more interesting) to me.

I’m not the kind of person who loves to dwell on their misfortune. I’d rather do something about it. And if I can’t do something to stop it, then I just accept it, do my best to ignore it, and move on.

But what if that’s part of the problem? I know that when I fell in 2004 and smashed my head on those stairs – bam! bam! bam! bam! – the last thing I wanted to do, was draw attention to my injury. I knew, deep down inside, that I was hurt. But I also didn’t know how to describe it, I didn’t know how to communicate it to others, I didn’t know how to put what I was feeling and sensing into words, and I didn’t know if I should even be worried.

I just sat down for a little bit to recover, gathered my wits about me, then picked myself up and got on with my work. Like I’ve done countless other times while playing sports, after car accidents, after multiple falls (one off the back of a truck I was packing — I stepped back and misjudged the height and fell back (I didn’t hit my head, but I was definitely jarred and out of it for a little bit), after clunking my head on something or other. Just sit down for a little bit, wait till I can see/hear/thinking again, and then get up and get moving again — often at a more brisk pace than I’d been working at before.

The mechanics of this fascinate me. No way have I sustained as many impacts as long-term football players, but I have had my share of rough-ups, and each time I was knocked for a loop, I stopped, composed myself, then went on without mentioning the incidents or how I was feeling afterwards to anyone.

To anyone. Not my parents, not my coaches, not my teammates, not my spouse, not my coworkers. Nobody.

Because who would understand? Who would get it? They’d all thing I was wrong in the head and get worried, and then I’d have to navigate their worry and concern, which was even more disorienting and frustrating and confusing than the injury itself. And there was a very good chance they’d take me out of the “game”, be it life or a sports contest, when all I wanted was to be in the midst of it, playing my part.

I figured I was better off just dealing with it myself.

So, I kept it quiet. Until I couldn’t anymore.

Of course, it catches up with you. It always does. You think you can just keep pushing, keep going, keep moving, and nothing bad will happen. You think something bad will happen if you don’t keep up your pace. And to some extent, it’s true. You can get benched. You can get marginalized. You can get sidelined in a thousand different ways, perceived as “unreliable” by those who depend on you for Important Things. And then you’re not worth quite as much to the team as you were before. And you become expendable. And you can get cut. Fired. Disposed of. Because you’re damaged goods who just can’t keep up.

Retard. (sorry for the “r” word, it’s for illustrative purposes — it’s what people may say/think about you)

And today, I find myself in similar straits. I am exhausted from my business trip, and I haven’t gotten my strength back. I haven’t been sleeping, and work has been chaotic and stressful with so much going on. It’s good to be back in my own bed again and back to my regular routine, but I am wiped. Beat. And I still need to keep going. I have to catch up with a lot of things that have been waiting for me. I have to do my chores, take care of business, keep the joint running — and then some, as I make up for lost time.

I don’t feel like I can afford to take time off, to recover, to relax. There is simply too much to do. And so I put my head down, push forward, keep myself going with adrenaline and resolve and steely willpower…  and I am rewarded. I am rewarded by those who depend on me, who look at me and think, “Wow – they are unstoppable.” I am respected by those who look up to this sort of self-sacrifice, who admire this sort of lack of self-regard. And I get to keep my coveted position as a team member of a group that relies on me putting everything ahead of myself — and who know nothing of my daily sensory, neurological, and metabolic issues.

Yeah, I keep going. While I can. And then I crash. When I can. I try to get some extra sleep. I try to take time out. I try to catch up with myself as best I know how… but there’s always that element of self-disregard that comes into play, that willingness — eagerness — to ignore the less than attractive aspects of my life, so I can keep up my resolve and productivity.

In the face of this, the best I can do is be honest with myself and recognize when I’m upping my risk of injury. I can pause for a moment and check in about my state of mind and body, and see if I’m tense and uptight… then take a slow, measured breath and just relax and let the tension go.

This is something I’m working on each day, to improve — just being clued in to my state of mind and body, so I don’t get too intensely stressed and start acting out and losing impulse control (like I did yesterday in conversation with my team and a former co-worker, when I said some things about my current employer in the heat of emotion that I never should have said out loud). It’s the kind of awareness I need to strengthen and hone, because the alternative is not that attractive. And the nice thing, too, is that this practice of just checking in, now and then, to see “where I’m at” really does help me relax and feel more together, which is a great feeling to have when I’m in the midst of a sh*tstorm.

So, while I realize that I push the envelope and I tend to overextend myself, each and every day, I also have some tools I can use to mitigate the effects of that constant stress — I have an understanding of how my central nervous system works, that really helps me develop good strategies for coping. I have things I can practice in the course of the day to check in with myself and see if I’m starting to fray. I have an understanding of what constantly high levels of stress can — and will — do to your body and your brain. And I have the internet to read and study and develop my knowledge further, so I can keep myself on track with more strategies and tools based on recent research.

I need to stay in the game. I have to stay in the game. I can’t just sit out and not participate. I have too much riding on me, and I have too much to lose. So, I have to keep myself going… =I know it’s not good to ignore symptoms and stay on the field despite serious injury, but I also can’t let my injury stop me from living my life. So, I do my best to not ignore what’s going on with me — and with the knowledge I have, manage my issues and not let them stop me. It’s an ongoing process, learning to pace myself, and I’m discovering and developing new ways to do that so that can keep moving and keep engaged, not bail from the situation.

Stepping away for a moment to do something different, then coming back fresh.

Pausing a moment to see how I’m breathing, and take a relaxing breath if I need it.

Stopping the momentum for just a moment, so I can catch up with things and not lose myself in that momentum.

Really focusing on developing resilience and hardiness, and accepting challenges as a part of my everyday that are evidence of my strength, not my weakness.

These are all things I can do. These are all things I try to do on a daily basis.

Because I don’t just want to live. I want to live well.

So far, so good.

GREAT reading about defending the “purity” of sports

Ken Dryden on hockey violence: How could we be so stupid?

Good reading – great food for thought. From a former NHL goaltender.