The loneliness of PCS

Recovery can be a lonely experience

I’ve been spending some time over at the Neurotalk – Traumatic Brain Injury and Post Concussion Syndrome forum at PsychCentral, and it never ceases to amaze me, how hard it can be to find help after concussion or TBI. Especially for kids who are concussed in high school sports, this is a tough one. So much of your identity can be wrapped up in being an athlete, being part of a team, playing your role in a specific way that clearly tells you whether you have succeeded or not. Sports are a great way for kids to gain confidence, find a place where they “belong”, and teach them important skills for working with others.

But take that away, thanks to concussion, and you’ve got problems. They can cut so deep that you can end up intensely depressed, even suicidal, and turning to drugs and/or alcohol to numb the pain and dull the confusion.

Here’s what I wrote in response to a parent to talked about their son’s slide into depression:

As a former high school athlete, I experienced a number of concussions, none of which were diagnosed, but in retrospect, they were definite mild traumatic brain injuries. My senior year in high school, after sustaining several concussions over the past years, I was unable to compete as part of the team I had been captain of, for two years running. I just couldn’t do it. Thinking back, it’s clear to me that my PCS had gotten the better of me — I was un-coordinated, I had trouble concentrating, I was emotionally volatile and explosive, and I was getting into trouble at work and at school. So, I took myself out of my favorite and best sport, that fall, and I really suffered as a result.

In retrospect, it was good that I “sat it out”, but it was really painful and depressing, and I spent a lot of time drinking and taking drugs to cover up the pain.

One of the things that makes concussion recovery so hard for high school athletes is that so much of their/our identity comes from being part of a team and playing with the team. The isolation of losing that and needing to recover (as well as the judgment from other kids that you’re “faking it” or making more of it than need be), can be extremely difficult and depressing in itself. Add to that the loss of identity that comes when you are no longer a team member, and that’s a double-whammy. With all the talk about recovery from concussion, it surprises me there is not more talk about the loss that comes from being cut out of sports just like that.

It really can be a crippling loss. It’s not just the PCS, it’s like losing a limb. You lose one of the biggest and most important parts of your identity.

… Unless you can replace that sense of belonging to a team with something that’s safer and has actual meaning, that will continue to be a dark void in his life. For players of team sports, especially, being able to transcend your individuality for the sake of the greater good, is critical, so focusing all your attention on your own recovery goes directly against that deeply felt value system — and that’s a problem.

I really wish this were talked about more. Concussion management isn’t just about managing the conditions that come with a mild traumatic brain injury – it’s also about managing expectations and working with the identity of the individual involved. In one fell swoop, the things that made your life worth living — a clearly defined role in a group of kindred spirits, regular exercise (which is good for the mood anyway), structure, direction from coaches and the rules of the game, and the ability to publicly achieve something and gain recognition — that’s all taken away.

And nobody seems to think that’s a problem that needs to be addressed… at least, not from what I’ve seen in the sports concussion literature.

Concussion can be a tough one, especially with youth, because so much is changing with them all the time, and it’s hard to know if they’re suffering from PCS, or if they’re just being teenagers. It’s hard to know what the deal really is, and so much can be amplified, just because they are teenagers. They don’t have the long-term view to put things into larger perspective, they don’t have the life experience to tell them there IS life after sports, and everything feels so intense.

In many ways, I think the situation with concussed athletes also relates to that of veterans with TBI, who are also removed from their respective teams and have the things that made their lives worth living, simply taken away because of brain injury.

Recovering from TBI can be a terribly lonely thing, even if you do have a regular job and friends and family around you. But remove all those things, and it can really turn into hell.

So, what do we do and were do we go from there?

I’m not sure. I think that connecting with people online can be a huge help, especially for folks who don’t have a lot of mobility and can’t be up and around. There’s really nothing like face-to-face contact to help, but for many of us — including me — that tends to be limited due to fatigue, sensitivities to light and noise (and sometimes touch), and difficulties with hearing and speaking and other communication, which isolate us in the midst of others. For me, the effort required to interact with people at my day job pretty much exhausts me, so I don’t have much left for extra-curricular activities. On the weekends, I just want to hide myself away and be left alone.

In any case, it’s lonely. It’s tiring. It’s frustrating. And these things add stress to our systems, which actually makes it harder for us to recover. It can become a vicious circle that turns our deepest fears into a self-fulfilling prophecy.

But at the very core of it all, we need to find ways to make peace with where we are at — and also learn to self-regulate. Knowing that concussion recovery can be isolating and lonely, allows us to take steps to avoid that becoming a problem in itself. And actually, having some time to yourself can be a really valuable opportunity to get to know yourself and learn skills at self-regulation that you wouldn’t normally get, were you in the midst of all your friends and teammates, 18 hours a day.

The world we live in right now is an extremely social one. Social media. Social sharing. Social this, social that… I worry that today’s young people are not learning how to think and act independently, and they’re missing that important piece of becoming a whole human being, in the process.

Taking time away from all of the social interaction to recover from concussion need not be a bad thing. Being alone doesn’t have to mean you’re lonely. It can mean you’ve got time and space to listen to what’s going on inside you, and get clear on what you want for your life… not just the latest distractions from the crowd.

Far from being the worst thing that ever happened to you, taking a break from the crowd might turn out to be a good thing, after all.

Onward.

Good TBI help shouldn’t be this hard to find

Update: Give Back Orlando is back! But the post below addresses a larger issue which remains problematic.

June 6, 2009 – Give Back Orlando’s Site is Gone

At least, when I go to http://www.givebackorlando.com/, I get the following message:

Directory Listing Denied

This Virtual Directory does not allow contents to be listed.

The message shows up on the other pages of theirs I’ve bookmarked. And I’m crestfallen. Because I really really wanted to have them as a regular resource. And now they’re gone.

Any of these could have happened:

  • they got so much traffic (from bots or from real people) that their server complained and went down and the person in charge hasn’t noticed yet and rebooted
  • they attracted attention from people who didn’t like what they had to say, who made them take it all down
  • they attracted attention from people who had ownership and copyright of some of the content there, who made them take the site down
  • they started getting all sorts of questions and comments and flood of info requests from outsiders that it got to be an overwhelming PITA
  • the folks who belong to the group didn’t want the rest of the world privy to their stuff, so they had someone hide it from outsiders
  • they aren’t in the assistance business beyond Orlando, and they got too much outsider input/feedback for the site to make any sense, or
  • some other thing we’ll never know about.

Whatever the reasons, it’s a pity that the site is gone. I’m still using the material, and I do find it helpful (so far). But it’s a shame that I can’t get to them anymore.

This disappearance is really emblematic/symptomatic of a lot of the head injury help resources I’ve seen around – they start out strong, then they get overwhelmed/-ing, and their work is just not sustainable. Either they get too big too quickly, or they don’t plan for expansion, or they just don’t have the bandwidth for the mounting tasks, or they are using tools that make the job harder than it has to be (like starting a whole website with rich media and interactivity and snazzy design, instead of a humble blog) … or, it turns out to be a very different effort, in the long run, than they envisioned it at the start.

I see this all the time with TBI blogs. No judgment on TBI bloggers, to be sure. Heck, it happened to me, when I first started this blog. If you look at my posting history, you see a flurry of activity for the first month or so, then silence for nearly a year, before the motivation started kicking in again.

It’s wild, doing the TBI blogging. You start out all fired up and wanting to make a difference in the world by sharing your amazing story, then you get hammered with all this info overload — from within and without. Not only do you get completely swamped by the many varieties of information out there and trying to parse it all out and make sense of it all, but you also get overwhelmed by all this internal self-realization that comes up, and you realize more and more how less and less capable you are in respects you once thought were ironclad, and you start to wonder if maybe you’ve revealed too much about yourself too soon and maybe that might prevent you from finding and keeping a job… and/or friends… and/or your hard-won position in society… and you have to drop back to find out where you really stand. You have to figure out who your audience really is, and why you want to talk to them in the first place.

After soul-searching and plumbing the depths of your experience, you end up either totally fed up and just wanting to quit … or… committed and motivated and eager to just move forward, even if it’s not perfect, even if you don’t have all the answers, even if it means that you’re going to have to make it a huge priority in your life and bump it to the top of your to-do list, each and every day, sometimes at the expense of other things that need to be done but will just have to wait.

A lot of people never get to that committed point. I suspect it’s because they get into it too soon. A lot of TBI survivors, from what I’ve heard, have a tendency to over-reach in the first months of their recoveries, and take on things that they don’t yet realize they cannot do. That happened to me, after my last TBI — I was taking on way too much, but at the same time, I was getting next to nothing done. I thought I was moving and shaking, but I was spinning my wheels in place, and it took losing several jobs and a lot of money to get me to pay attention to what was going on with me… and that was without the benefit of any formal rehab.

I would imagine that people who get formal rehab may consider themselves capable in different ways — having been shown tools and been given training, they may overestimate their autonomous capabilities… and end up either flaming out or getting into jams that are demoralizing and/or embarrassing and are in any case real disincentives to keep going.

It’s always unfortunate when this dropping out happens, but I think it goes with the territory of TBI. Especially MTBI, which is one of those pesky hidden disabilities that can depress the living hell out of you, if you dwell on it too much. If the focus of your online work is to educate people about the kinds of problems that accompany mild traumatic brain injury and you want to talk about solutions, it can be mighty difficult, because there are so many confusing problems to talk about…  and MTBI makes finding workable solutions to sticky problems difficult, because in order to figure out solutions, you have to know what the problem is, and your mildly TBI’ed brain isn’t always up to that task — and when it thinks it is, sometimes it’s not.

And then there’s the existential angst… If you’ve got an injured (okay, let’s be honest, damaged) brain, what right do you have to talk about anything? Especially with any level of expertise? Isn’t one of the requirements of expertise and authority, having a fully functional brain? Who are you to talk about it? Aren’t you a patient, after all? A victim? A survivor? Someone who is at a disadvantage, cognitively, who can’t even get through the day, sometimes, without making a mess of everything? Who are you to talk about TBI? Shouldn’t that be left to the experts?

But the experts are either few and far between, or they are otherwise occupied — especially with TBI, where the moderate and severe forms are a lot more interesting and dramatic than the “mild” kind, and they can get actual numbers and data on the impacts and effects. So, unless you talk about your (M)TBI, who’s going to? Who’s going to speak to the millions of people out there who suffer supposedly mild injuries to their brains, but find themselves increasingly incapacitated through the course of their lives and are so utterly, totally alone in a world that is far more interested in money-making injuries that render quantifiable data? Who’s going to speak to them? You?

So, there’s the quandary and conundrum. You want to help. And you want to share. But the more you try to share, the more keenly aware you are of your limitations and difficulties, and if you dwell on them too deeply (even if for the sake of helping others see that they’re not alone), you can end up in this TBI vortex of criticsm and self-doubt and self-assessment that goes nowhere, because in the process of examining yourself with a fine-tooth comb, you’re seriously wearing yourself out and making yourself even less cognitively viable.

So, the downward cycle continues. And some people never pull out of it. Just check online. Inactive TBI blogs abound. And now you know (part of the reason) why.

That being said, I’m collecting links to information from trusted sources which are funded and organized and whose purpose is to educate the outside world. I’m going to start with the Brain Injury Associations of different states. I’ll start at Alabama and end up at Wyoming, to make it easy on myself.

Because good help for TBI shouldn’t be this hard to find.