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.

Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

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