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.