After concussion… then what?

Taking one -- and another -- and another -- for the team

I’ve been thinking a lot about concussions, as they are getting more and more airplay… and the first “wave” of pro athletes who have gotten some serious press about being concussed (Sidney Crosby, expecially) are headed back to the game. Plenty of folks are talking about concussions – how to prevent them, how to enact and enforce rules that prohibit concussive hits, how to build better equipment to prevent injury (or at least reduce the risk), and what to do about the people who run things, who seem to have a vested interest in keeping sports as dangerous and edgy as possible, all for the sake of “entertainment” dollars.

All this conversation is great – it really helps raise awareness. And one of the things that’s becoming painfully clear is that concussions are pretty much unavoidable — on the playing field, and in life.

Which brings me to my most compelling question: Once you’re concussed / sustain a mild traumatic brain injury, then what?

I hear people talking about awful things happening to repeatedly concussed individuals on down the line, and believe you me, it’s no comfort whatsoever to contemplate the dangers of Parkinson’s or early onset dementia, accelerated cognitive decline, etc.  CTE, protein in the brain, mood disorders, depression, suicide… good God, what have I gotten myself into?

All the talk about the very real dangers of professional football, the lawsuits against the NFL, the news stories about retired athletes taking their lives and dedicating their brains to the BU brain bank, and the accounts of student athletes who had their high school playing days cut short by concussion, certainly raises the stakes in this arena. It’s important to get people to pay attention, and in these modern times, just getting people to sit up and take notice can be such a challenge. So, we almost have to shock people into noticing that there is a danger, and they should take the danger seriously.

But again Once you’re concussed / sustain a mild traumatic brain injury, then what?

Does that mean your life is over? Does that mean you’re destined to be a simpleton someday (soon)? Does that mean — on a personal note — that I’m going to be left to my own devices later in life, when my resources are dwindling unnaturally early, due to the many TBIs I’ve sustained? Does that mean I’m going to be living out of a cardboard box in another 10-20 years, talking to myself and eating scraps I dig out of a dumpster behind a TGI Fridays? Everyone keeps talking about how concussion can silently accelerate cognitive decline, sneaking up on you and systematically destroying all you hold dear.

Is this what I have to look forward to? Geez. What a thing to look forward to.

And I think of all the young people today who are struggling with concussion — the post-concussive symptoms, brain injury issues, mood disorders, cognitive-behavioral challenges — pretty much by themselves, their friends all ditching them one by one, without a lot of support from teachers or coaches, or even access to answers about their situation, for that matter. I think of their parents, their families, and all the people who care about them, who are also not getting a lot of answers or help. I think of the student athletes who have their whole lives ahead of them, only to have the one thing that makes them feel alive, taken from them by injury — an injury that no one seems to understand, and people are so busy raising alarms about, that they don’t look for guideposts to help them find their way.

I would never imply that people are using scare tactics to further their own agendas — some might, but it’s not for me to point fingers. My big concern is that in all the urgency around proving that concussions are a problem to take seriously, there seems to be precious little information how to handle a concussion, and how to come back as a fully functional human being. This is something that really needs to be addressed. Because in my opinion — and my experience — one of the biggest tolls that concussion takes is mental and emotional — not knowing what’s wrong with you, and not knowing how to make it better.

… And starting to think that you’ll never get better.

There are a lot of people who have a fair amount invested in helping people in need, and I believe that their orientation can become so focused on the need, that they lose sight of the ultimate goal of freeing people from the specific kind of help they offer. It can be so hard to get people “into the system,” so once you have them there, there may be a certain (unconscious) impetus to keep them there somehow, or to keep doing what you’ve been doing, because it’s familiar (and the insurance company pays for it).

But “making better” is the order of the day. And “making better” is the work that I have been doing with my neuropsych for the past two years. It’s been pretty amazing, phenomenal, actually — to a point nobody really expected. But it’s time to move on. And part of me feels like I should have done this six months ago. I didn’t, because that regular meeting time was a valued part of my weekly schedule, and I thought I still needed it. Maybe I did, because it helped calm me down and let me feel like there was somebody in my corner on a regular basis. I think I stuck with them, because there truly are so few real resources for people with TBI — and the resources that are out there are created by a lot of people who haven’t experienced it, or who have some ve$ted intere$t, or who are driven to get grant money or some other form of public recognition. Sure, there are some really well-meaning people doing this work, but too often, they are just battling for their very existence, and between insurance problems and legal issues and just the piss-poor availability of good information that’s easy to find, those of use who need their help — and other kinds of it — are just left out in the cold.

For real. Hassling with headaches and balance issues and overwhelming fatigue, as well as all the behavioral issues that come along with it, is not the stuff of glory. The mood swings, the anger outbursts, the impulse control problems, the pain of all kinds, the fractured relationships, the confusion with basic everyday activities — that “should not” be there… it’s all a “fluid” mess, sometimes, without any predictability or pattern. And the anxiety and agitation. Always the anxiety and agitation… The downward spiral of stuff that makes no sense, chipping, chipping, eroding away from our relationships, our sense of self, our everyday competence that people think they should take for granted.

Welcome to the world of TBI. Oh, and get used to not having anyone believe or understand you when you talk about your issues. Sorry for the sarcasm, but I’m a little tired of this being the “default state” for people with TBI.

So, where does that leave us? (And by “us” I mean those of us who are willing and able to step in and help others who have the same neurological problems as we do.)

It leaves us with a lot of work to do, to raise awareness about TBI and its after-effects… And a lot of work to do, to reassure suffering, struggling people that what is happening to them happens to thousands upon thousands of people every single day — they often just don’t know now NOT alone they are, because they’re so busy trying to figure stuff out, it’s hard to get out of their own heads. And nobody WANTS to chat about neuro issues at the bus stop or while waiting in line to fill out some paperwork.

The good thing is, it is very possible for us to make connections, when we try. Especially thanks to the internet. Don’t have your own computer and an internet connection? Your local library probably has one you can use. The TBI Survivor Network is one of my favorite forums. And there is a bit of good information out there about TBI, including the Traumatic Brain Injury Survival Guide by Glen Johnson and information from Give Back. Online forums make it easier than ever to connect with people who have similar issues — and if I hadn’t had my neuropsych, I would have probably spent a lot more time online than I have. And now that I’m leaving my neuropsych, I will probably spend a lot more time in forums.

And I hope to get back to doing more direct research about my own experiences, finding out what the underlying issues are. My neuropsych has been so focused on getting me “back to normal” and not letting me develop a self-image as a victim or even a survivor, I think I’ve lost a lot of opportunity to learn about the inner workings of my brain. It’s like they didn’t even want to talk about it, at times. I needed to know, but I didn’t know how to ask. And they didn’t volunteer.

So, I’ll find out for myself, from websites and books and people who are willing to share that information with me. And I’ll pass it along to others. I’m getting on with my regular life, but I can’t just ditch everyone else in the process. I know from personal experience, TBI is a real bitch, and those of us dealing with it need regular support from others who have a friggin’ clue.

But I’m getting pissed off, and that’s not good. I must be hungry.

So, I’ll get myself something to eat. And just keep at this blog thing, trying to spread some info out there about how you deal with a concussion after it’s happened. It’s one thing to prevent. It’s one thing to advocate. It’s one thing to penalize those who intentionally cause harm to others. But after the injury? What then?

Well, we need to do the following:

1. Educate ourselves about how the brain and its functions work
2. Learn how TBI impacts the brain and those functions
3. Learn about the chain reactions of TBI difficulties — for example, how the constant restlesness contributes to agitation, which then contributes to anger outbursts and behavior problems
4. Explain to people (and ourselves) that we are not alone, that what we’re experiencing is very normal, considering the circumstances… and this is what others have done to help deal with that exact thing

I’m not sure that the established medical or rehab community  will ever be able to offer all that to people. They are so controlled, so regulated, and TBI is so individual and variable, it’s hard to come up with a hard-and-fast set of comprehensive resources to do just that. Ultimately, I think it’s about making a wide array of resources available to people and teaching them how to use them.

And letting them know they are not alone.

That’s probably the most important thing of all.

Now, to get my lunch…