I’ve heard it said that it takes about seven years of recovery for a person to start feeling “like themself” again after traumatic brain injury. That sounds about right to me. And now that I’ve been at it (actively) since 2007, I’m coming up on seven years — next year.
What a long, strange trip it’s been. From nearly losing everything, to sabotaging job after job, to watching my friends go away, to the relationship/marriage troubles and health issues, to slowly building myself back… it has been a trip. But it’s finally starting to feel like things are stabilizing for me.
When I say “things” I mean internal things. Not external things. Learning to live with TBI is like going to sea and learning to walk across the deck of a ship that’s rolling through all sorts of seas. Between the sensory issues, the focusing issues, the distraction problems, the mood swings, the irrational and literal and rigid thinking issues… if it’s not one thing, it’s another, and just getting used to the idea that this is just how things are, has been a battle in itself.
But that’s the deal. This is how things are. And there’s no sense in trying to tamp it all down and get things to chill, because no sooner does one wave pass, than another comes along.
Walking across the deck… yeah. That’s about the best metaphor I can think of. And it puts me in the mood to read some seafaring adventure stories – Captains Courageous, Treasure Island, Two Years Before The Mast… stories I remember from when I was younger, that I really loved and enjoyed. It kinda puts me in the mood to tie knots with heavy rope… 🙂
And that’s one thing that the seafaring metaphor does for me — it raises dealing with TBI issues from a hindrance and an inconvenience and a problem, to being just part of what I have to deal with on the “high seas” of life. Rather than turning the issues into problems and vexations, it turns my ability to deal with them into strengths and abilities that I didn’t have before. I’ve been deep sea fishing a few times, and I know from personal experience that “sea legs” don’t just happen overnight. It takes time. You have to learn to roll with it. I’ve never been out to sea long enough for this to “take” with me, but I would imagine that I could learn to do just about anything, given the opportunity and time.
And opportunity and time are just what I have, with regard to this stuff.
Today, I’m pretty dizzy and off-balance. I’m also having trouble keeping focused on one thing at a time. I’m working from home today, giving myself one more day to recoup before I go back into the office, and I still don’t have my full strength back. No surprises there – I was flat on my back for a week, and this won’t fix itself overnight. I just feel “off” today — spacey and tired and weakened. I’ll see how it goes, with getting my work done. And I’ll see how it goes, taking frequent breaks to just get my head settled again.
It’s not so very different from some days when I wake up after days and weeks of not getting enough sleep, and I have to work at my peak level. It’s not so very different from some days when I’m off balance and foggy for no reason that I can tell at all. It’s not so very different from dealing with the light and noise sensitivities, the headaches, the malaise… it’s not very different from that at all. And the emotional impact it has — the frustration, the short temper, the anger, the temper flashes from a very short fuse — that’s very similar, as well.
It’s all part of life on the high seas.
Of course, it’s easy for me to say all this, years on down the line after my latest concussion injury in 2004. At the very start, when nothing made sense and I was dealing with so many, many issues that I didn’t recognize and didn’t realize were a problem, the whole business made me sick. Literally. Like being out at sea for the first time, I was in a constant state of nausea and disequilibrium. I felt stupid, I felt like an idiot, and I felt so incredibly defective because I couldn’t regulate my emotions or my behavior. Everything was falling apart around me, and I didn’t know why. And not knowing made it even worse. Not knowing that I didn’t know… that was the worst thing of all.
So many times, I look at the stats for this blog and I see people searching for “concussion now I’m dumb” or “does concussion make you stupid”. And I remember so well what it was like to feel so stupid, all of a sudden, and not know why nothing was working for me anymore. I seriously didn’t have a clue. I knew I had hit my head. I knew I had gotten hurt. But I had no idea the effects could be as big and impactful as they turned out to be. I thought it would all clear up in a matter of a few days.
How wrong I was.
What I didn’t realize was that each time my head bounced off those stairs, connections in my brain got twisted and frayed, possibly even severed. What I didn’t realize was that those connections had taken a lifetime to put in place, and now that they were disrupted, I was going to need to practice and practice and practice, rehearse and rehearse and rehearse… doing many of the things I used to do so easily, but now had to learn to do in a slightly different way. I almost wish that the differences had been obvious — things like walking and talking. But it was really the little things, like learning and managing emotions and remembering details, that had been disrupted. And those disruptions were even more upsetting, because they weren’t something that others could see or often even detect. The only one who could tell a real difference was me… And inside, I was a torn-up mess.
Of course, years on down the line, I can look back with some perspective and understand what was going on. But at the time, before I learned all I have in the past 6-7 years, I had no perspective. I had no information. And I was going nowhere fast. No, correction — I was going somewhere fast — down, down, down. I’m just lucky that I noticed something was wrong before I went over the edge and lost everything.
Not everyone is as fortunate as I am. Not everyone manages to get it as quickly as I did. A whole lot of people struggle in silence and tell themselves to just push on through… never getting the help they need. And that’s a terrible, awful waste. Not everyone understands that the high seas they are on, are going to always be there… that once you’re on the TBI / PCS ship, you’re not getting off. You may have some calm days, you may have some serene days, but you’ll also have fog and shoals and doldrums… and the storms will always come up again — you can bank on that.
Not everyone is stuck for all time with post-concussive issues, and thank God for that. But for those of us who are, probably the best thing to do is just settle into the daily routine of sailing the high seas… get your sea legs… and get ready for adventure. You never know, you might just come across some treasure, along the way.
Ahoy….
Broken Brain - Brilliant Mind 
Reblogged this on ADD . . . and-so-much-more and commented:
I KNOW – I said I didn’t like WordPress’s “reblog” function – and I don’t – but its mostly lousy with graphics and this article is mostly words. And it is so GOOD – and so hopefully realistic about how an atypical brain (ADD-TBI-EFD-BPII- whatever!) is like sailing the high seas — you just can’t walk around on deck the same way you might on land.
Read it in their own words – in the reblog below, or jump over to their site and read it with intentional formatting.
xx,
mgh
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Another great post, thank you for writing it. I feel that my situation has been very similar to yours, the difference is that I’m ONLY 13 months into the ordeal.
But today I wanted to share something that has occupied my mind a lot lately . What type of brain did we have BEFORE the TBI? I have come to the conclusion that this is a crucial element that can determine how things unfold after the injury. Given the same exact level of injury, two different people will have very different outcomes. One might go in perennial short circuit, another will still have lingering effects but recover pretty well after all. Our inner attitudes towards life, destiny, fear, faith, death, disability, moral instances (which by the way all reside in our brains), along with our quantity and quality of intellectual development, are the things that will make it or break it.
If for instance people dealing with the new issues of sudden outbursts of anger, short temper and mood swings pay close attention or even manage to remember how they were before, could they notice that some of those seeds were there all along? These are not issues that can be created anew. If it wasn’t there to begin with, it simply CAN’T be put there! Not even an accident can put it there.
I don’t believe a TBI changes our brain completely! I believe that, according to the areas of the brain involved, we will see paradoxical exacerbations of elements/issues that resided there before. Now if only we knew HOW to reduce those paradoxical reactions to smaller, manageable bits!
There are many more considerations I’d be tempted to add, but I feel I ought to stop here.
I’m curious to know what you think on this and if anyone of your followers/commentators would like to ‘chip in’, that would be awesome.
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Thanks for your kind words – it certainly does hold true for anyone with “non-standard wiring” – especially those who can’t avoid adapting, anymore. A lot of folks talk about a “new normal” in ways that sorta kinda depress me. But once you get past the idea that there might be a “normal” at all, for me it simplifies things and takes a lot of the pressure off.
Thanks again
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Excellent points – I agree with you that TBI doesn’t necessarily completely change the brain, but exacerbates things that were already there. That’s actually an ongoing discussion I’ve been having with my neuropsychologist — they occasionally ask me how things were before my TBI(s), and when I think back, I have to say that I wasn’t exactly sweetness and light all the time. But then, I think I’m not the best “test case” because I’ve had a bunch of TBIs, and I can barely remember a time when I wasn’t affected by them.
The thing that changes, I think, is our ability to self-regulate in ways that are familiar to us and others, as well as in ways that make us socially skillful. Say someone has a lot of anger, but they figure out ways to keep that under wraps, for the most part (except when they’re drinking, or they’re in bad traffic, say). Then they get hit on the head and their ability to self-regulate gets hosed, and they “become another person”. They’re not really another person – they just have a hard time “editing” their behavior.
I think that’s where the difficulty arises — for me, at least. Before my 2004 TBI, I didn’t have the most idyllic marriage. We had our arguments, our fights, our fallings-out, and at times it was pretty rocky going. But that’s just how it was, and we kept going in spite of it all. In 2004 when I fell, everything got that much more intense, I didn’t just shout and find fault — now uncontrollable weeping was added to the mix, along with a lot more volatility — not only at home, but at work as well. For someone who *hates* to cry, and who always prided themself on keeping it together at work, this was a really hard thing for me. I didn’t recognize myself anymore, because my ability to edit out the parts I didn’t want people to see/experience was pretty much shot.
In the grand scheme of things, my injury (compared to others) was not severe. But the net result was. And even though my marriage has never exactly been Paradise (what marriage is, actually?), the unpredictability and extremes made it that much more difficult.
And then the insecurity and perpetual not-knowing and the anxiety set in after a while, and I slid downwards pretty quickly, relatively speaking. It didn’t take long for my self-image and my relationship with the world and my work to get pretty dinged up.
But was I so different than I was before? In essence, no. But in how I perceived and managed myself, yes.
I think that self-awareness and ability to self-edit is a big part of the mix. The vast majority of people walk around feeling like nobody really knows them — I think because they edit themselves so well to meet the social needs of the moment, that they manage to conceal much of what makes them “them”. When TBI shows up, however, suddenly that filter doesn’t work so great — and maybe what people are actually seeing and reacting to, is actually closer to who we really are… without the stops and brakes and filters and controls that we learn to use in the course of our lives.
That’s to say, of course, that not only the bad stuff can emerge after TBI. I’ve heard a number of stories about people who discover talents they never had before, or whose personalities actually become easier to deal with after TBI. But even if we’re discovering a lot of new good things about ourselves, it’s still a change — a change that most people around us don’t want to navigate and don’t have the time or energy to get into very deeply. It can be very isolating, which can be very stressful — and stress taxes the brain in ways that make it difficult to learn and adapt — and “I can’t” becomes a self-fulfilling prophecy, even if we actually can do what we think we can’t.
Anyway, that’s my take on it. TBI is notorious for making people more rigid and anxious — two things that work against us learning how to live differently. That stress, that pressure to be the way we were before, to restore the old glory of our “once upon a time” lives, actually keeps us from moving on, I think. But when we loosen up on ourselves and look for what else we can discover about ourselves, our abilities, our likes/dislikes, and the things that trip us up, I think that opens up a whole new world to explore.
Some days I wish I could know what my brain would function like *without* TBI. But I’ll never know. I’m working with what I’ve got, and that’s keeping me plenty busy.
Cheers
BB
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My favorite things to think about “new normal” nonsense are these:
My own reminder to clients and students:
“NORMAL is not the goal. Extraordinary is the goal. Extraordinary people are *never* “normal.”
A favorite line from a play:
“Please God, don’t let me be NORMAL!”
xx,
mgh
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That’s a great attitude. It’s funny, how much “normal” is glorified, when it’s really the extraordinary parts of life that truly make a difference.
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When you mentioned the “stairs”. One of, if not the most damaging happened to me after being thrown down stairs. I felt something that was not just a re-experienced buried trauma, but a sense of hope. thanks for your story. J.
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BB, I was not much of a student. But after my TBI, I learned Spanish in months. And I’m talking at a fairly high fluency level. I also had some personality changes that were not all “bad”. But I was definitely like the child you explained in a blog (or someone did) I had to grow up again.
People say I speak fine, but I still have to think some when I am forming words. And I still have to reach down deep to figure out what to do in higher stress situations. Even potentially fun ones, like dating. I remember how to act but I feel that the experience does not belong to me. I stay home. Not worth all the hassle. Saying one large coffe please can seem like work. I got the instant home stuff now.
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Forming words in Spanish is much easier!!
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You’re very welcome. I hope it helps.
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Very cool. Sounds like language-wise, that “rearrangement” in your head did some good.
As for the interactions, I hear you – the same is true for me. Everyone says I’m “fine”, but the experience seems foreign and not like it belongs to me. It’s like I’m going along with someone else’s script. If they’re happy, that’s fine because then I don’t need to deal with the judgement and lack of consideration. But it still feels distant, like I’m watching the whole thing from the other side of the room.
Ordering food and drink is very stressful for me. First, I have a hard time figuring out what I want, then I sometimes can’t organize myself exactly the way I want, and the conversation can get confusing. Then, on top of it, when things get overwhelming (like, in every eating establishment known to mankind, pretty much), I can get so disorganized, I start to panic or — even worse — get teary and shaky and just fall apart.
Not fun.
Staying home with my own brew is my idea of a great time.
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