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.

What I’ve left behind

Somewhere, someone cares about your loss

I’ve been thinking a lot, lately, about the things I’ve left behind over the years. The people, the places, the things… as well as the abilities and interests that have gone away, due in large part to TBI. With Thanks-giving fast approaching, here in the U.S., and travels to old haunts and family activities on the horizon, I have been thinking a lot about how things are different now than they were before — as well as how things might have been different, had I not fallen in 2004 and gotten screwed up with that head injury.

I’ve also been thinking a lot about how I handle my life now, compared with before, due to my TBI recovery work, and my discussions with my neuropsych. The professional I see for rehab work is not very big on acknowledging or dealing with the losses I’ve experienced — in part because my perception of those things has been pretty heavily skewed, and it isn’t always accurate. And my NP is there to get me to move forward, not stay stuck in the past.

In any case, they don’t seem to believe me when I tell them about how things were before my injury. Like so many people, they make up their minds about who and how I am, and they use that as a reference point for dealing with me. Their reference point isn’t always accurate — but then, my own reference points are not always accurate, either. So, between all these different reference points, without having any confidence in specific details about Who I Really Am and How I Used To Be, I just keep moving forward, keep living my life, and I don’t try not to worry about.

But aside from the general haziness of who I really am and how I really am, I have been dealing with a lot of sense of loss, lately. I have immediate family members who have either passed on, or are in their late-late golden years and may not be around much longer. I also have family members who make what I consider really un-healthy decisions and are locked in a constant struggle with drama they have invented with their own personal choices. All in all, it’s pretty depressing to go visit my family, because there is so much unhappiness — due in large part to people making decisions that are not healthy or helpful for them and those around them. The worst part is, they can’t seem to see any way out of their decisions, as though they “have” to do those things that hurt them.

Am I being vague? Here are some examples of choices by loved-ones that depress me:

  • Moving in with someone and then marrying them, despite the fact that they have a drinking problem… then being stuck in a marriage that looks great on the outside to everyone who cannot see that your spouse is structuring their entire life schedule around getting drunk — and you’re stuck in that schedule, too. For years. Till you leave them and start living with someone else who doesn’t seem like a much better choice.
  • Losing your spouse to cancer at a relatively young age, when you have two young kids, and never getting those kids proper counseling help for their loss… and marrying someone who looks exactly like the spouse you lost and you don’t really love, but is a good parent for your kids… and burying yourself in a very extreme religion to dull the pain of your choices.
  • Having a lot of health issues that are directly related to lifestyle — eating foods that are bad for you, keeping a schedule that is unhealthy, and ignoring the warning signs your body is giving you — and being progressively more crippled each year from the foods you eat and the way you live your life.
  • Spending your life in a profession that is combative and antagonistic, and bringing that combativeness and antagonism into the home where you verbally attack anyone who disagrees with you, hurting and pushing people away “on principle”.
  • Choosing to marry for practical, popular reasons instead of love, then spending the rest of your adult life pining for a deep emotional connection with your spouse that has never been there, and never will be… refusing to accept responsibility for your choice in partners… and being on heavy-duty meds to dull the pain of your choices and your refusal to make different choices in your life that would suit you better but be less popular with others… Basically medicating yourself to avoid taking any responsibility for your life.

I don’t mean to be cold or unkind — my frustration comes from knowing just how much better life can be, and feeling great pain for the individuals I love and care for, who seem so stuck in the ruts they’ve grooved into their lives. We don’t have to be victims! I want to pick them up and shake them and let them know there is a better way. But it’s like we’re living in parallel universes and speaking in a different language, and they cannot hear or understand what I’m saying.

Now, I know life is never going to be perfect, for sure, and there is much pain and struggle for all of us. Most people struggle with inner demons that no one else can see, but we fight with daily. But the fight doesn’t have to be miserable. We can see it as a regular part of life that can bring us some freedom and relief — and help to define and refine our characters.

So, there is hope. At the same time, there is so much grief and loss and pain. This time of year is very hard for me, because I lost some important people around this time of year, and the autumn-time experience of loss still stays with me to this day. It’s like it’s in my cells — and I re-live it each year, even decades after those losses.

So, the theme for my life during this time of year is mourning. If I don’t do something constructive, the grief just takes over. I know I have many, many reasons to be thankful — and maybe that’s the thing that will save me — Thanks-giving — yet I cannot seem to shake this grief, this sense of having lost so much over the years of my life, thanks to TBI and the results of it, starting in childhood and on into my adult life. I cannot help but wonder, what might have been possible, had I never gotten hurt like that… had I gotten help… had people known about TBI when I was a kid, and given me half a chance. I cannot help but wonder, what might have happened, had I told someone about my head injury when it actually happened in 2004, instead of lying about it and then watching as my whole life went to hell for no apparent reason.

But no, it didn’t happen that way. And I am bereft.

This is something that I think many people fail to see and address — the losses of TBI, the importance of recognizing and mourning of those losses, and dealing with the deep grief that comes from knowing that once upon a time you could do better… that once upon a time, you took certain things for granted… that once upon a time, so much was possible… but now it’s all different. It’s not like that anymore. Maybe somewhat, somehow, but not exactly. And you have to start from scratch in many ways, and fight your way back to where you want to be — if you can ever get there at all.

Sometimes, you can’t get there as quickly as you’d like, or not at all, and then you have to let it go. You have to just cut your losses and move on.

But “cutting losses” doesn’t factor in the pain that comes from those losses, and that’s what I want to talk about today.

When I try to explain to people what it was like for me before I fell in 2004, I get blank stares.

When I try to tell them how I used to be able to just pick things up — new programming techniques, new ideas, new information, they just look at me like it’s no big deal. When I tell them how I used to be in the thick of craziness on the job, day in and day out, without any real negative side-effects, they almost don’t believe me, and they cringe if I tell them what it’s like for me now (if I even do – because nowadays, I don’t).

When I try to tell them how fluid my approach used to be, before I fell — I would see a challenge and I would rise to it without giving it a second thought — they almost don’t believe me, either.

And when I tell them how much money I used to make and how much money I was worth, the flat-out disbelieve me. Because that would be impossible for someone my age without a college degree, doing the kind of work I used to do.

This is partly because they didn’t really know me before. They didn’t know the line of work I was in, and they didn’t know what it was like to work for my employer. They don’t come from the world where I work, each day, and they have no idea just how good things were for me, and how well I could function in those circumstances, and how rewarding it all was. For people who know me now but didn’t know me before, my accounts of how things used to be just sounds like confabulation — or me making things up. Because the difference between now and then is so dramatic and so extreme, that they probably could not begin to imagine me as I once was.

As I believe I once was.

See, there’s the rub — maybe I was that way, or maybe it was my perception of how I was. Maybe I was “all that”, and maybe I wasn’t. I may never know. My memory plays tricks on me all the time, and the best that I can do, some days, is muster a “feeling” about the past that seems true.

I know things used to be different for me. I know I used to be different. Looking at my bank account, and considering the kind of work I do today, compared with 10 years ago, there is a radical difference. Like night and day. And the fact that I am struggling terribly with money these days, just maddens me. It was never like this before. Never. Ever. But now it’s a daily challenge to keep my finances in order and keep myself on track. I manage, but it’s not nearly as easy as it once was.

Money doesn’t lie. That’s the bottom line. And what my money says, is that I’m a very different person than I was before.

Hence the sense of loss. A profound and sometimes debilitating sense of loss. And I am pretty much alone in this sense, because either nobody understands what it’s like to have so much, and lose it. Or they don’t believe I ever had what I once had, in the first place. Or (even worse) they think that nobody deserves to have what I had before, so it was a kind of karmic justice that now I have such troubles.

Loss. Lonely, lonely loss.

But I cannot stay tied down in my depression. I am working my way out of a hole, and I have to handle this alone, so I have developed ways to deal with this whole grief thing.

The first thing I do, is to acknowledge it. Not minimize it. Recognize the experience of loss and grief and mourning as very, very real. And very, very important.

The next thing I do, is understand what it is that I am mourning the loss of.

I recently realized that I can group my losses into two different categories:

  • Invented Loss – the “loss” of things that I once-upon-a-time decided that I wanted and needed, but I never really did want or need. These are losses like:
    • false friends (who I once thought were my real friends) who ditched me when I stopped having so much money
    • possessions that other people told me mattered, but I just didn’t care about
    • 100% devotion and dedication to employers who were more than happy to pull the rug out from under me when I ran into trouble, and
    • public approval and a sterling reputation, regardless of how sleazy the people were whom I wanted to respect me, regardless of what I needed to do to uphold that reputation
  • Genuine Loss – the true loss of things that I really did want and need, but couldn’t hang onto, like:
    • being able to read things and understand them immediately
    • constant abundant energy
    • clear, quick thinking and definite decisions
    • my ability to earn top dollar almost without thinking about it
    • my ability to learn new things quickly and use what I learned quickly
    • confidence in my memory – things didn’t used to seem this foggy before (I’m not sure if this is a genuine or invented loss, however, because it could be that my memory was always spotty, I just wasn’t aware of it)

In some cases, it’s hard for me to tell whether my losses are genuine or invented. My memory is a classic case — it really wasn’t until I started working with my neuropsychologist that I realized how spotty my memory was. And in fact, when I think back, there are big parts of my past that I don’t remember — people always assumed that it was because I had been traumatized as a child and I blocked a lot of things out, but more and more I think it was a lot of other things, including a spotty memory during childhood, thanks to repeated head injuries.

Furthermore, human memory is notoriously unreliable, even with people who have no history of TBI. Just ask the cops. People who see the same thing will have different interpretations, and each person will be convinced that they’re right. That’s just how we’re built. It’s just how we are. TBI or no, memory is a tricky thing, so it doesn’t make that much sense for me to be upset over the crappiness of my memory. Who’s to say that anyone’s is any good?

But still — I think the thing that gets me the most is the loss of my old confidence about who I was and what I was all about. So much changed, so much has altered with me in the past years — 8 years, since my fall down the stairs a day or two after Thanksgiving in 2004 — that some days I don’t know who the hell I am, where I’m going, or what even matters to me.

Some days, I wake up a complete blank — I have no point of reference, I don’t know what day it is, what I should be doing, what I want to do… anything. It’s like everything has been wiped clean. Then I’ll sit for a little bit, re-orient myself, look at my lists, and it will come back to me. Some days, it feels like I’m starting from scratch. Completely. With no experiences from before to guide me.

And I miss that old feeling of knowing who I am and what I’m about and what matters most to me. The things that used to drive me — reading and writing and studying and grasping the secrets of my universe… the subjects that used to absolutely drive me are just not there anymore. What’s left? Other things. New interests. Different subjects that draw me in… if I can remember them.

Ultimately, that’s probably the biggest loss I deal with — losing my sense of self, who I am vs. who I think I was — and losing my confidence about who that “self” once was, and now is. The second-guessing, the not-knowing… it’s a lot to learn to handle, and it’s a lot to learn to manage. I will manage, somehow — I AM managing somehow — and do that keeps my mind off my troubles. But some days, it just gets to me.

Like today. Like right now. I have this deep and abiding sense that I have lost something very important to me, but I’m not exactly sure what that is. I’m not sure if it’s one big thing, or if it’s a lot of little things, and as much as I am determined to build back my life, I just don’t know if/how/when I will be able to do that to my satisfaction.

Because building “back” is a point of confusion, to begin with. My memory of how things once were is not great, so where’s my point of reference? My memory of how I once was, is also not great, so how do I know if I’ve even gotten “back”? I think the thing for me is having the old feeling again — having a sense of who I am and where I am and how my life is… getting that old sense back. If it’s even possible.

Of all the issues that come with TBI, the grief business is probably the most difficult to handle, because it is so hidden, it is so personal, and it’s hard to find others who understand the extent of your loss. Everyone wants you to move on. Everyone wants you to focus on the positives. Everyone wants you to get back to normal and quit feeling sorry for yourself. But TBI can take from us the very things that make us who “we” are — and when you lose that… even if it’s just for a while… it can be vastly unsettling, and it can linger at the back of your mind, like a jabbering monkey, making it hard to just get on with your life — and do the things that will bring you back to where you want to be.

I’m not saying it’s the end. But grief and mourning for the things we have lost — especially realizing that the loss does matter — is an important part of recovery. And until we really look at it and find a way to deal with it constructively, it can overtake us and run our lives without our even knowing.

That’s what I think about it, anyway. And now, it’s time for me to stave off this depression and get my circulation moving. Time for a walk — perhaps in the woods.

Onward. To the future.

Geez – I have GOT to get out of my head

Source: images.wellcome.ac.uk

I am slowly but surely driving myself crazy. I am feeling depressed and low and forlorn. All the world feels like it’s pitted against me, and I feel like I’m slipping farther and farther into an abyss. I feel like I’m behind at work, I’m not meeting my deadlines, I’m saying/doing things that make people uneasy, and I’ve been ultra-edgy, the past few days.

This really sucks. I’m glad my spouse wasn’t around this evening — I had a little breakdown about the time I woke up from my nap. Over what, I can’t quite remember. Something about career disaster.

Now, I know I’m tired, and I know my mood takes a nosedive when I’m fatigued. I also know that the past three days — no, wait, the past week — has been extremely full — with change, new faces, new information, etc.

Despite needing to take it easy this weekend, I burned the candle at both ends. And now I am seriously overloaded, and I feel like I’m coming down with a cold or something. Ugh. I’m drinking my nasty “cold season tea” to head it off at the pass.

All the work was for good reason, mind you. I’m on deadline, and tomorrow is a hard-and-fast date I have to meet. No alternatives. I’ve missed a number of deadlines already, and it’s turning into a pattern I need to turn around. I must deliver the goods by tomorrow — but since I did so by this afternoon at 12:30 or so, I should be good. Have this nagging sense of “what’s missing?” however. I hate this.

Regardless of my best intentions on Saturday morning, the weekend ended up taking a big bite out of me.

And my head has been nudging at me, whipping me into a neurotic frenzy. It’s telling me I’m a screw-up and a slacker and I’ll never amount to anything, and if I have any sense, I’ll run away to Uruguay, which I read about over the weekend. Apparently, you can live there for very cheap. And you don’t even need to know Spanish. It’s getting cold here. I think the summer is starting there. Uruguay might be just the ticket for me, actually. Hmmm…

What is this world inside my head coming to? I had the house to myself this weekend, and I isolated with my work, didn’t get out much, and now I’m feeling both wired and weird. Good grief.

I want to run away. Seriously. The new job scares the crap out of me, and I’m convinced that everyone hates and resents me and they are out to get me. This is not good. I’m being silly and I know it, but I’ll be damned if I can stop these little “tapes” in my head that keep reinforcing all the crap that’s accumulated over the years.

This is not me.

These are feelings, not facts.

I'm being ridiculous.

Stop it.

Hey – wasn’t I supposed to have fun this weekend and kick back and relax? In a way, I did — I took care ofย  all that programming for my work, which is something I enjoy doing. But even fun in large amounts puts a strain on the system. And I was really haulin’ ass there, for a while. Now I’m feeling the effects.

I’m feeling positive, though, about what I got done. I just hope my coworkers don’t hold it against me that I worked over the weekend. They say it makes them look bad, and they give me crap. But I had to get the stuff done. Sometimes working weekends is the best way to go. Especially when you have a highly sensitive deadline… in another 15 hours.

I think the only sensible thing I can do at this point is head off to bed shortly.

So I shall.

And now for something that will make just about anyone feel more normal (or at least less abnormal) — http://hyperboleandahalf.blogspot.com/

Read it and weep — while you’re rolling on the floor laughing your ass off ๐Ÿ™‚