From Brain Injury and Football — No Place to Run — on CRAIN’S COMMENTS

concussion_nutrition

The latest evidence is pretty hard to ignore. The research leader is Dr. Ann McKee, chief of neuropathology at the VA Boston Healthcare System and director of the CTE Center at Boston University. She examined the brains of 111 deceased NFL players. Of these, 110 had CTE, the degenerative disease caused by repeated blows to […]

via Brain Injury and Football — No Place to Run — CRAIN’S COMMENTS

96% Of Deceased NFL Players Test Positive For Chronic Brain Condition

In case you hadn’t heard…

New studies show 87 out of 91 deceased NFL players have tested positive for brain disease due to concussions and head trauma

Source: 96% Of Deceased NFL Players Test Positive For Chronic Brain Condition

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.

Just keep trying…

So, I’ve been noticing a couple of things lately —

Keep on keepin’ on…

First, how I can never seem to wake up feeling really rested, and I usually feel hungover when I get up in the morning, even though I’ve not done anything to warrant that.

Second, I sometimes completely forget where I am and what I’m doing for a few seconds, then I “come back” and I know where I am and what I’m doing again.

Each of these, in themselves, have the potential to trouble me. Greatly. In fact, they have really bothered me before, and I have seriously wondered if that circling specter of dementia that is often hanging over my head, is finally coming home to roost.

What I’ve realized, is that if I just keep going, I manage to find some resolution to them.

It has been a long, long time, since I woke up feeling really rested. I generally feel hungover, foggy, and not really great. I feel like I mixed cheap wine, light beer, and three different kinds of liquor, and it’s a hell of a way to wake up in the morning, every day.

It’s been bothering me that I can never seem to get on the good foot, and I feel so crappy. I try getting to bed at a decent time, then I can’t sleep through the night. Or I try to sleep in, but that’s never a guarantee. On days when I can’t sleep in, I over-sleep. On days when I can sleep in, I can’t. It’s incredibly frustrating.

I try to take a nap when I can, but it doesn’t always happen. Sometimes I literally can’t get to a place where I can lie down. Other times, I can get to a quiet place, but then I get a second wind when I’m about to step away, and before you know it, it’s the end of the day, and I’ve pushed through and kept myself going – to my own detriment.

What I have realized, after a whole lot of trial and error, is that if I can just get going in the morning, eventually I don’t feel so terrible. Especially if I can focus my attention on something that makes me feel good, like exercise and a healthy breakfast and the things I plan to do for the day, I can get myself going and get out of my funk. It’s not permanent.  And even if I feel wiped out and exhausted, if I promise myself I will rest if I need to later, that makes me feel better.

As for resting during the day, I do what I can, and if I can’t get a nap in, I don’t break my head over it. It’s bad enough being tired, without being all tweaked about it, too. Sometimes I’ll just step away to catch my breath, and that helps. Or I’ll take a brisk walk and that will make me feel better. In any case, breaking up the monotony of a dronelike day usually makes me feel better, even if I don’t get any additional rest.

It’s a fine line. It’s all a fine line. I just have to keep going.

As for losing my way and forgetting where I am, I periodically lose track of where I am when I am walking or driving. It can be very disconcerting for me to have no idea where I am, and not know what to do. Visions of “On Golden Pond” come to mind, and my head starts to race  with all my fears about Alzheimer’s and dementia and CTE. I wonder if this is the beginning of the end for me, and I can’t help but think about all the stories from friends and acquaintances about their aging parents “losing it”. I also start thinking about what I’m going to do, if I ever get to the point where my mind is completely gone, but my body is still in good shape. I think about going skydiving and not opening my chute. I think about getting a wing suit and flying into a cliff face at full speed. I think about going to see and letting myself just fall into the ocean during a storm.

The last thing I want, is to live out the rest of my days in a diaper with someone spoon feeding me. Where’s the point in that? I’ve watched elderly relatives end up in homes, nursed back to health at very advanced ages, and then lingering on, with ever-decreasing quality of life.

I’m not sure I’d ever want that. And talking to others about this, we agree — it’s better to take matters into your own hands and put an end to things that are never going to get better, than live out the rest of your days in a “twilight state” where the only ones benefiting are the retirement home coffers.

Yeah, no thanks.

Those times when I forget where I am and don’t know what’s happening are — thankfully — brief. And I find that if I just keep going, I can always find my way again. All I have to do is trust that if I’m headed in a certain direction, it’s for a reason, and that will become clear to me… eventually. I haven’t lost my marbles yet. So, I just keep going. I just keep trying. I just keep looking, keep thinking, keep engaged. And things work out. Either I find a new way, or I figure out how to make the old way work again. It’s never a clear-cut one or the other. But if I just keep trying, I can always find a way.

Of course, a day may come when things don’t work out, but that’s not here yet.

So, for today — for the moment — I will focus on what I have, the good that is in my life, and I’ll do what I can to make the most of it. Right here. Right now.

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.

If this test can detect Alzheimers, can it detect CTE?

I came across this a while back, and I was prompted to recall it by a recent commenter:

Blood test can unveil Alzheimer’s

November 2, 2011 – 11:09

A Danish biotech firm has developed a new test which can detect, from a bog standard blood sample, whether the person concerned has Alzheimer’s disease. The test can even reveal the disease in its early stages.

Alzheimer’s is a disease that creeps up on you, and until now it has not been possible to diagnose it until is already pretty advanced. The new test can discover the disease before its symptoms are pronounced, to facilitate intervention with treatment and support. (Photo: Colourbox).

Researchers at the Danish biotech firm Nordic Bioscience have developed a new test for early diagnosis of Alzheimer’s disease.

The test can measure whether the blood contains fragments of a special protein, known as tau, of which Alzheimer’s sufferers have larger quantities than people without the disease.

Read the whole article here >>

Now, I’m not sure how similarly CTE interacts with tau protein, but the common piece of it caught my eye. Tau is the hallmark of CTE, so if it can be detected via a blood test for some scenarios, maybe it could be expanded…?

Wouldn’t it be nice, if we could detect the presence of CTE before all the years of anguish get rolling?

TBI Heroes – ‘Cause that’s how everyone wants it

Junior went too soon. Buddy, you are missed.

As I sit here in bed, surrounded by my flu meds and fluids, I have plenty of time to think about things I normally don’t, in the course of my busy everyday life. The (not unexpected) news that Junior Seau had CTE at the time he shot himself in the chest, last May, has been on my mind. A lot.

And as I’ve been weighing the pros and cons of going back to work in time to work a professional conference (we’re talking about 5 solid days of being on my feet, running and working and also doing a presentation for a colleague who can’t make it), I have to wonder what in hell’s name makes me think I should even consider doing this?!

Seriously, it would be madness for me to dive right into that. See, the whole conference thing also includes air travel. In an enclosed aircraft. During one of the worst flu outbreaks in something like 10 years. And it includes being surrounded by thousands of people from all over the country, some of whom may be sick, themselves. And it includes going-going-going for 12-14 hours a day, for 5 days straight. I’ve worked this event twice before, and even when I was hale and hearty and feeling fine, I was completely wiped out by the end. If I push it, this time, then what? I end up back in the hospital?

For what?

Am I insane?

Actually, no. I’m just in the habit of pushing myself. Because unless I push, nothing gets done. See, this is what most people don’t get about me and my situation. I cover things up really well. I mean really well.

Who would ever guess that on any given day I could wake up being so wobbly and off-balance, that if I don’t maintain some contact with an upright surface, such as a wall or a piece of furniture, I’m going to fall over? I’ve learned to mask that extremely well, being ultra nonchalant as I stroll along at a “leisurely” pace. I’ve learned, over the years, how to keep myself upright by keeping a very straight posture – which is probably why some people assume I have a military background – I don’t, they just seem to assume that if I stand up straight I must have been trained. Actually, I have been trained – by life. Because I’ve learned the consequences of not keeping my posture aligned, and it’s no damn’ fun.

And who would ever guess that the “cool shades” I wear are not at all for style’s sake, but to keep myself from losing it over the bright lights all around me? I wear sunglasses in the winter as well as the summer, because the snow is even more glaring on me than summer sunlight. Some days, when I am really tired, any variation in light – a sudden flash or a bright piercing sunbeam – can set off klaxon alarms in my head.

Noise, too — there’s nothing like having the voices of your loved ones turned into spikes driven into your brain, because you’ve reached just the right level of fatigue and sensory overload. Not being able to listen to the songs sung by one of your sibling’s kids, when they just put something on YouTube and they want to sing it for you in person… that’s a pretty lousy way to spend a Christmas afternoon.  Of course, you can’t let on that you’re baked, you can’t tolerate any more noise, and if anyone says one more thing to you, your head is going to implode. You just suck it up and move on. You think of other things. You put on a happy face. You keep going and keep smiling.

Because that’s what everyone needs.

They don’t need to know the gory details of how you haven’t been able to sleep a full night for months, now…. and how everything that touches your skin feels like it’s burning through to the bone… and how the ringing in your ears is drowning out everything, which is why you have to keep asking people to repeat themselves… and how you haven’t actually understood much of what anyone has said to you for the past two hours, and most of the stuff you did understand, you’ve since forgotten. People don’t want to know about that. They don’t want to know about the increasingly frequent memory lapses, the flawed judgment calls, the time management issues, the distractability. They don’t want to hear about how bone-tired you are, how confused you are, how frustrated you are with every damn thing that comes across your path.

They don’t want to know you’ve been simmering at a near-boil for days on end, now, blowing up at the people closest to you, because you’re so fried by all the sensory overload and the fatigue and the defeat of never being able to out-run or out-maneuver these things. They don’t want to know that as much as you might get a bit of relief, now and then, the issues will still be back later, and you can count on that. They don’t want to know about the jumpiness, the hair trigger temper, the flashes of rage that tear through your insides like fire across a dry prairie. They don’t want to know about how you’ve used just about every “tool in your toolbox” to keep it together, but things are raveling just a little bit thin, these days.

Nope. They don’t want to hear about that — any of it. Especially if they know you as a can-do type of person who always manages to figure things out. If you’re the go-to person in their life, they depend on you NOT being any of the things you actually feel like, day in and day out. And God forbid you should ever speak up and ask for some help.

Because when you do that, they either laugh at you, or they get freaked out, because nobody — but nobody — can seem to hear anything about TBI or concussion or any other sort of brain issue, without thinking about themself and questioning themself and confronting the bare-ass fact that deep down inside, the heroes are still human.

I’ve been a hero for a long, long time. At work, I’ve often had a sort of “folk hero” reputation for having accomplished the things I did. Because I never gave up. Because I looked the beast in the eye and still moved forward. Because I took on projects that others ran from, and I made it all work in the end. I’ve been a champion for as long as I can remember, and I’ve been rewarded for it, too.

So, when I fell in 2004, and that all started to unravel, the hammer came down pretty hard. I was failing. I was coming up short. I was not living up to expectations. And that was unacceptable. People talk about how you shouldn’t be afraid to fail, how you shouldn’t be afraid to come up short sometimes. Those people write books for a living, clearly, and they obviously don’t have their level of compensation and their family’s welfare on the line, every time they are tested. Those people piss me off. Because the ones who write our paychecks (and often have us by the short-n-curlies) attach a price to our performance.

Not only that, but the whole world around us attaches a price to our performance. And this is the thing that makes me absolutely nuts about the people who go on and on about how “formative” failure can be. Yeah, homelessness is formative, too. As is long-term unemployment. The price of failure in today’s world is NOT just popularity — is is your very way of life. It can even be your life. Period.

And how much moreso for someone like Junior Seau? Someone on whose shoulders so much rested — the restaurant, the foundation, the reputation…. Someone who had flown so high, and was never going to fly that high again, as far as he could tell. To grapple with the things I’ve got going on, in my low-profile life as just-about-nobody, is hard enough. But to do it in the glare of the public eye? How the hell do you do that?

Maybe, you just don’t.

And in all the talk about Junior Seau’s death and CTE and changes that need to be made to football, the thing that’s been missing for me — the big, big thing that seems like it might actually make a substantive difference in all this — is how people with brain injuries are treated… How anybody who doesn’t “measure up” is treated by once-adoring fans.  Once you set the bar high, it’s your job to keep out-doing yourself and keep it moving ever upwards, ever onwards. But that’s a fantasy and a myth born of Hollywood and personal improvement gurus. And it puts the onus of keeping your shit together on the person who might actually need the most help.

If the truth be told, we live in an exacting and unforgiving society. I have no idea how we got to this place, where everyone seems to need to believe they are invincible — or could be. And I have no idea how we have created a culture where it is perfectly okay to punish those who don’t live up to our expectations, as though they were homicidal criminals. Life is full of disappointments. And yet we carry on as though we should never, ever be disappointed, and we should always get exactly what we want, because we “deserve” it.

What exactly do we “deserve” anyway? That others meet our fantastical expectations in every way, until the end of time? Who says anyone owes us that? Who says we are entitled? The thing of it is, most of us structure our lives around the roles we play and the ways we fit into each others’ lives, within those roles. So, when our abilities change and we need to adjust our roles, it can be terribly frightening for others to deal with us. Because a change to us is a change to them. And if they’re not ready to shoulder more of the “load” of making sense of life with their own resources (rather than ours), then the loss of our presence in their lives in that certain role, can be terribly frightening, disorienting, almost incapacitating.

How very human of us.

I guess in the end, there are no easy answers, and it’s simple enough to get upset and pissed off over sad things that should never have happened, but did.

When all is said and done, the fact of the matter is, some of us are hero material. For one reason or another, we have learned how to push ourselves through thick and thin… and come out victorious on the other side. Some of us know how to put aside our own personal safety and well-being for the sake of others. And some of us are in the habit of doing that on a regular basis. Now, I’m no firefighter or first responder or doctor without borders, but I am in the habit of putting the needs of the many over my own individual wishes and needs. And it’s served others well over the years.

Now, with this flu still raging, I’m doing a reality check and seeing quite clearly that this is no time to be a hero. If can’t do the job at the conference next week, someone else is going to have to take my place. There may be others working the event who are also sick and choose to work it, anyway, but this one I’m going to have to sit out. I hate the idea and it goes against everything in me, but I’ve just got to do it, this time.

It’s not what I want. And it’s not what the folks I’m working with want. But it’s what’s got to be done. This one time, I don’t have to be a hero.

Reblog: Sports discourse in the aftermath of Junior Seau’s suicide

This is an awesome piece on the death of Junior Seau and what it means for the current sports concussion dialogue. Nice work!

Forget despair – I’m going to exercise

This dog isn’t going down easily

I have to admit, writing about the traumatic / PTSD aspects of TBI has got me a little bummed out. Additionally, thinking about CTE and the NFL players’ suit(s) against the NFL, and pondering the shortened anticipated lifespan of TBI survivors, hasn’t helped my mood at all.

No surprises there.

I did happen upon something interesting today, however — and it both appears to confirm what I have suspected, as well as adds a little more information to my “store”. It also lit a fire under me with regards to my exercise routine.

Check out this recently published paper from Brain – A Journal of Neurology:

Stimulation of autophagy reduces neurodegeneration in a mouse model of human tauopathy

Okay, now that I’ve got your attention 😉 what does it mean? Basically, autophagy is the process by which cells digest parts of themselves by breaking down the bits they don’t need or are trying to get rid of, and using them as “food” for other processes. A good example of autophagy is dieting — where your body consumes the fat in some places to fuel its activities. It sounds a bit strange and creepy at first look, but when you think about it, it makes perfect sense — if there’s energy or some other ingredient that’s taking up space in a cell, and it can be used for other purposes, such as energy, then it only makes sense for the cell to break it down and use it up for something else. Our cells do this all the time – and in the case of trying to lose weight, that’s exactly what we want them to do.

Since this breaking-down function is available in cells that want to get rid of extra “baggage” — and tau, the protein which is linked to CTE and other dementia-like brain degeneration like Alzheimers is definitely extra baggage that isn’t doing anyone any good, then wouldn’t it make sense for this breaking down process to be useful when it comes to clearing out tau from brain cells? Apparently, yes. Here’s the summary from the article I found (bold emphasis is mine):

Summary

The accumulation of insoluble proteins is a pathological hallmark of several neurodegenerative disorders. Tauopathies are caused by the dysfunction and aggregation of tau protein and an impairment of cellular protein degradation pathways may contribute to their pathogenesis. Thus, a deficiency in autophagy can cause neurodegeneration, while activation of autophagy is protective against some proteinopathies. Little is known about the role of autophagy in animal models of human tauopathy. In the present report, we assessed the effects of autophagy stimulation by trehalose in a transgenic mouse model of tauopathy, the human mutant P301S tau mouse, using biochemical and immunohistochemical analyses. Neuronal survival was evaluated by stereology. Autophagy was activated in the brain, where the number of neurons containing tau inclusions was significantly reduced, as was the amount of insoluble tau protein. This reduction in tau aggregates was associated with improved neuronal survival in the cerebral cortex and the brainstem. We also observed a decrease of p62 protein, suggesting that it may contribute to the removal of tau inclusions. Trehalose failed to activate autophagy in the spinal cord, where it had no impact on the level of sarkosyl-insoluble tau. Accordingly, trehalose had no effect on the motor impairment of human mutant P301S tau transgenic mice. Our findings provide direct evidence in favour of the degradation of tau aggregates by autophagy. Activation of autophagy may be worth investigating in the context of therapies for human tauopathies.

So, yeah – you’ve got extra proteins gunking up your brain cells after a traumatic brain injury/concussion, and that extra protein isn’t doing anyone any good. Wouldn’t it make sense to use the cells’ own activity of breaking down portions of themselves and flushing them out, to help clear out the tau?

In the study, they used trehalose to stimulate the process in mice, which may or may not be all that useful for my purposes. Trehalose is used in processing a lot of foods, and it’s not uncommon. I’m not sure how therapeutic it would be for me to consume mass quantities of “confectionery, bread, vegetables side dishes, animal-derived deli foods, pouch-packed foods, frozen foods, and beverages, as well as foods for lunches, eating out, or prepared at home,” especially if my body has its own natural processes to move things along. What natural processes, you ask? Exercise. Acute exercise. Researchers have found that acute exercise stimulates autophagy in the skeletons and muscles of mice, and I don’t think it’s a stretch to deduce that it can have the same effects on cells of the brain.

Why not? Okay, I’m probably being markedly unscientific here by drawing conclusions from reading a few articles (scholarly as they may be), but let’s use common sense for a moment. The human body is constantly renewing itself — every 7 years, we get a new body, because the cells have all renewed themselves. If acute exercise is worked into the routine on a regular basis, then wouldn’t it make sense that the autophagy induced by exercise would help the body rebuild itself with new materials, and with less tau?

As a TBI survivor who has a nagging concern about tau-induced dementia later in life, this gives me hope. And while “hope is not a strategy” and my scientific method leaves a lot to be desired, nonetheless, it does help me get past the pernicious, creeping depression that sets in sometimes when I get tired and start to think, “After all those TBIs, what’s the use?”

So, I’m throwing myself a bone, here, and I’m gnawing on it with all my might. I have known for several years, now, that exercise makes me feel and think better when I do it first thing in the morning. And I’ve known for decades that a good hard workout makes me feel like a new person. Researchers seem to be confirming scientifically what I have experienced, and they’re explaining it in ways that make sense to me and my systems-oriented conceptual brain (all the biochemical-speak notwithstanding).

So rather than getting hung up on the idea that I’ve gotten clunked in the head too many times, and that’s that, I’m going to amp up my exercise and really push myself to do more with it. It’s the acute stuff that apparently helps the most, so I need to do more of that. Not to the point of injuring myself, but definitely more than the easy-peasy warmups I’ve fallen into doing over the past six months or so.

Screw despair. I’m going outside to get some serious exercise.