Fourteen Years Later, Someone Finally Got It…

 

Pat LaFontaine shares about his experience at BrainLine

 

I’ve been watching the video on BrainLine – NHL Hockey Hall of Famer Pat LaFontaine Shares His Story

Hear hockey great Pat LaFontaine recount his story and the steps he took during his recovery after several brain injuries.

It’s a great retelling of a story about how he sustained multiple concussions and could never get answers from anyone… until he was so impacted, it was obvious to everyone that something wasn’t right. It’s also a very telling look into an often hidden world of athletes who know something is wrong, but are told time and time again by doctors and trainers and other expert folks, that they just have a psychological issue and if they just suck it up, they can get back in there and get back to regular play.

Around 19:10 in the video, LaFontaine talks about how he had to keep calling his doctor (the new one who actually had a clue what was going on) to reassure him that the source of his emotions and depression and headaches and not feeling right was physiological. He thought that the doctor was just being nice, because he felt like he was losing his mind.

How true it is.

When you’re going through the disruption of a TBI, you can genuinely feel like you’re going crazy. Things are strange, you don’t feel like yourself, your emotions may be off the charts or completely changed, and nothing seems to be clicking. And trying to get help can be next to impossible, if the doctors you see are not familiar with brain injury/concussion.

This is so important — I wish more doctors and trainers and coaches of student athletes would pay attention to this and keep up to date with the most current research and best practices, so they can not only help people  understand what’s happened to them, but they can also take steps to prevent repeat injuries before healing is complete. Concussions among student athletes is much higher than most guess (and former studies showed), and second subsequent injuries before the brain has healed can be devastating. Second impact can complicate concussion symptoms, and if doctors and coaches and trainers are all pressuring the players to get back in the game and/or telling them that they’re really fine, they can get hurt again — and have even worse problems to deal with after the fact.

I was one of those student athletes who went back in the game after the concussions I sustained, but I’m different from many, in that my coaches and trainers had an eye out for me and kept me out of play (against my will). I was very luck. Lots of student athletes don’t have that same level of vigilance and care.

The one problem was that I’m also one of those folks who never got proper medical care until about three years ago. This was long after the period in which I could file for any sort of assistance or get accurate medical records documenting my injuries — so the chance of me getting any help from any organized sources is slim to none.

I’m on my own.  And even though I have doctors who know about my TBI history, I’m still on my own when it comes to advocating for my own care and well-being. They mean well, I’m sure, but when they tell me that I don’t need to worry about how much sleep I’m getting, because I may not need at least 8 hours a night, it’s not particularly helpful. And when they look you over, plying you with questions about your mood in search of clues about psychologically based depression, completely ignoring the physiological aspects of mood and emotion, well, that’s even more depressing.

I can tell you from personal experience that dealing with post-concussion syndrome is a real bitch, when you have no idea what it is, you think you’re losing your mind, everyone around you is telling you to just “shake it off” — or they have no idea you have anything to shake off, and all they can do is give you a hard time about struggling the way you do. And then you go to the doctor, and they tell you to take a meditation class or relax more or go on vacation to get your mood back in order… this is not helpful, in the case of TBI.

According to the medical/mental health system, without proper medical documentation of my injuries, in the eyes of others, I’m probably mentally ill. All that emotional volatility, the perseveration, the rumination, the difficulties getting started and stopping what I’m doing, the extreme swings in energy levels… Even some of my friends who are psychotherapists have written me off as mentally ill and refusing treatment. These are the same people who have flatly discounted the effect of TBI in my life and claim that all I need is to deal with my difficult childhood to get on with my life.

They’re wrong on so many different levels. Especially about me  refusing treatment — I’m not. I’m actually getting treatment at the level I need — on the neurological level, not on their preferred level. I know that I’m not mentally ill, and so does my neuropsych. And so does every other person who is intimately familiar with TBI and understands the nature of the issues I face on a daily basis. To say it’s maddening to watch the mental health field have a heyday with folks who have been neurologically impacted, would be an understatement. And hearing stories of doctors playing psychotherapist is equally irritating. But at the same time, I can’t let the shortcomings of our “modern” mental health industry impact my own peace of mind and my own mental health.

There’s no sense in that.

So, I seek out answers for myself.  And I share what I find, in hopes that others like me may realize that someone out there actually gets it. They’re are not alone, and there is hope.

Where there is good information and good communication, there is a chance for change.

Do all the concussions need to wreck us?

Source: diamondduste

I’ve been giving a bit of thought to all the reports of concussions in the news, lately. Football players, ice hockey players, soccer players… not to mention all the reports of kids heading to the ER. Conflicting as those reports may be — some say more pre-teens are being treated, some say more high-school age teens are being treated — the picture is still pretty significant. And the concern is increasingly palpable.

The message, like in a recent blog post of the Chicago Times Union, frames the issue from a concerned parent’s point of view. This isn’t an isolated case, either. Soccer/hockey moms/dads are becoming increasingly vocal about concussion risks in youth sports, and plenty of times there’s an accompanying dismay at the apparent cluelessness of the coaches regarding the risks of unsafe return to play.

Here’s the thing, from where I’m sitting — as a multiple concussion survivor and a former student athlete myself: If we funnel all our energy into fear and avoidance and attempted prevention of injuries like concussions, aren’t we possibly missing a big lesson that sports can teach us, in the first place — namely, that it’s part of human experience to get hurt… and it’s vital that we learn to pick ourselves up, dust ourselves off, and head back into the fray, facing our fears and dealing with what is.

Getting bent out of shape over concussions is understandable, but does it need to derail the very important process of learning from screwing up that often comes from childhood and youth? Since when did we start believing that all the lessons we can learn should be framed in positive terms, with no harm or danger involved? I would argue that by avoiding and trying to prevent risks, we are depriving the next generation of really critical lessons they need to learn, in order to deal effectively in the world.

If they don’t learn how to handle injury and adversity now, when they are relatively safe within the fold of their parents’ house, how will they handle it when the shit really hits the fan?

It inevitably does, you know. No parent can prevent that, hard as they  may try.

Now, I’m sure that there are plenty of parents who will take issue with this attitude. And coming from a multiple mild traumatic brain injury survivor, I realize that credibility is an issue. How can someone who’s gotten clunked on the head as often as I have be a trusted source for judgment about how to deal with sports concussions? I’ve talked about my judgment around risk being a bit impaired in the past, so why listen to me now?

Here’s the thing — it’s not that I’m advocating that we put our kids in harm’s way and not give a damn about their safety. Far from it. But at some point, the helicoptering starts to genuinely prevent the most valuable part about childhood and youth — the learning gained from trying and failing and trying again. That includes the learning gained from falling down, getting hurt, getting up and assessing the severity of your injury, letting yourself heal, and then getting back into the game when it is genuinely safe to do so.

Granted, with concussion, the threshold of safe return to play is often elusive and unpredictable.  But the opportunity — indeed, the teachable moments — that healing from an injury provides, can be invaluable in later life.

Concussions happen. They happen a lot. And I suspect they’ve been happening since the beginning of time — we just haven’t always had emergency departments at the ready to accept the steady stream of kids whose parents have good enough insurance and the level of understanding and concern to get them there.  I’m not sure there are more concussions happening today than before — we’re just more keenly aware of them. And this increased awareness means we’ve got a shining opportunity to learn all about the injury — as well as how to heal.

And learn we must. It’s not enough to wring our hands over all those mild traumatic brain injuries. It’s not enough to rush the kids to the ER and lecture the coach about their insensitivity and putting our kids in danger. It’s not enough to turn our heads away from danger and injury and/or do everything in our power to prevent it. We must learn to deal directly with this in a way that actually works, so that it doesn’t get the best of us. We need to learn to face up to the danger, the risk, the harm, the inevitable hurt, and master our skills in overcoming it.

After all, if concussions are endemic to the human experience and people have been experiencing them since the beginning of time (which I believe is accurate), and we’re all still here (more or less) and we haven’t all died off due to chronic traumatic encephalopathy and our societies haven’t completely disintegrated into a dust cloud of demented violence (or maybe we have?), isn’t that at least some evidence that concussions can and do heal — and that we can probably find a better, more effective way to heal than we’ve seen in the past 50 years or so?

Rest alone won’t always do it.  Concussion and TBI experts tend to agree that resting (and doing nothing else) doesn’t always fix the problems that come from post-concussive syndrome. Exercise, on the other hand, has been shown to clear issues with people with remarkable success — as SUNY’s University at Buffalo Concussion Clinic has found. Even professional ice hockey players are turning to them for help, and it appears to be helping. After decades of partial solutions, we’re getting to a point where we’re learning new ways of dealing with the somewhat staggering numbers of head injuries, and we should use them.

Let’s use them. Let’s deal with the issues around concussion — both the prevention of needless injury, and the healing from the hurt. Short-term recovery should be actively evolved and pursued and talked about in every public forum, from youth/amateur sports to professional circles. And long-term recovery should be addressed as well. Nobody who’s sustained a concussion (or more) should have to live under the dark cloud of the depression, the mood disorders, the behavioral issues, and the cognitive problems… not to mention the public stigma that comes from being considered “brain damaged”.

Concussions happen. But they shouldn’t have the last word.

At least, that’s what I think.