Learning to live again. After TBI

We need better ideas about TBI / concussion recovery

I wrote this  Thursday morning… then I got busy. I’ll post it now.

It’s cold today. It’s a beautiful clear day, and I am off to an early start. I have an appointment with a counselor, who is helping me sort through my day today logistics. I really like this counselor, because they are not focusing on a lot of emotional stuff, rather on what I need to do from day to day to live my life well.

This works for me. TBI can make a person overly emotional in ways that do not make any logical sense. Every little thing can throw you off, for no apparent reason, so taking the usual emotional approaches to therapy is not as effective as a lot of psychotherapists think. In fact, if anything, it can actually be counter-productive in the worst ways ever. Trying to address neurologically-based emotional issues with psychotherapeutic techniques can actually make things harder to understand, emotionally speaking… which is exactly what happened to me, about 10 years ago when I was first actively recovering from my TBI issues.

Not many of my psychotherapists actually knew this, which strikes me as odd, even dangerous. I know it was dangerous for me. And I wish that my neuropsychologist had been more detailed and vocal in their reservations about me seeing a psychotherapist while I was in recovery for traumatic brain injury.

Anyway, that’s neither here nor there, and my life is back on track. And that’s what I want to talk about today.

I’d rather talk about How I got my life back on track.

I have talked a good deal in the past about Sense of Self, and how that impacts your life after brain injury. To me, this is by far the most critical issue in terms of recovering after concussion or brain injury. In fact, I would go so far as to say that it is the main issue in recovery from concussion or TBI. But at the same time, it is one of the least understood and and most underestimated.

Losing your sense of self sets the stage for all manner of behaviors and experiences that impede your recovery. The neuroscience is there, and it states very clearly that added stress impedes learning. And if TBI recovery is anything, it is learning to live again along different lines. If getting your brain back in working order isn’t about learning, I don’t know what it is about.

When the frontal lobe is injured, which is so very common in traumatic brain injury, it causes us to manage our emotions less well, and that can certainly interact with the limbic system. Other individuals, like Ken Collins, stress the importance of managing the limbic system, the part of the brain that is hyper emotional. I totally concur with his assessment. He should know. He’s a long-term survivor, himself.

When we get worked up over things, all of our energy is going into our emotional reactions, rather than figuring out what is really going on, and dealing with what is right in front of us. We can get so caught up in our interpretations of the fleeting meanings of different things, taking things personally, getting insulted and outraged over every little thing, and also being frustrated and embarrassed, that we have no energy left for regular functioning.

And that is a huge problem. Because the brain uses a lot of energy, and that is only for every day regular things, let alone extraordinary and novel situations that demand more of our resources to process.

So cutting down on environmental stress is very important, and that environmental stress also includes our internal reactions to it. Our internal reactions – at least mine – can make everything worse, and if you don’t have a clear sense of yourself,you were not secure in who you are, and you don’t trust yourself… well, that’s a problem.

Not being able to trust yourself, not knowing what to expect, and not having a clear view of where you fit in the world, is incredibly stressful. Self-familiarity, self-trust is so central and fundamental to us, that we don’t even know it’s there, half the time. We just take it for granted, and when it is removed, we can fall into an abyss of severe self doubt and crisis.

To me, the changes that take place in our brain, the abilities that we once had that are different now or maybe completely gone, the different reactions to our situations, and the deficits that we develop are far less less of an issue than the experiences we have as a result. The experience is what turns our situation into a tragedy, a comedy, or just another aspect of life that we need to adjust to.

Think about how much you have changed in the course of your life, even without a brain injury. You are not the same person that you were when you were five years old , 10 years old, 15, 20, or beyond. We change all the time. We change in reaction to the world around us. Our physical and mental abilities shift over time, and it is not catastrophic, but it’s part of a normal and regular development cycle.

But when brain injury shows up, that changes the patterns that we expect in our lives, and it makes it hard for us to know how to live.

Anyone who is alive is going to know what it’s like to be taken by surprise by unforeseen circumstances. Brain injury is no different, although it is on a much larger and more pervasive scale and of a higher order, than – say – a change in the weather, or change and scheduled activities at work or in your social life. Brain injury changes are deeply altering, even if they come from a supposedly “mild” injury. That is an inescapable fact of the injury.

The thing is, this is the sort of change that we can – and should – learn how to navigate. And we do that through adjusting and adapting and getting to know who we are after the injury. People talk about there being a “new normal” after a brain injury and that can be very true. I know it’s been true for me. The thing is, the “new” normal does not have to be dramatically less successful or lower quality than the “old”. If we learn how to adapt, and we learn how to learn our way back to recognizing ourselves, this can all simply be another aspect of her of our lifetime of developments, just as adolescence and early adulthood, and even aging are parts of the normal process.

So, how do you do that? How do you learn your way back yourself? For me, the secret has been all about routine. Predictability. Establishing set ways of living my life on a daily basis, so that I can and do learn to recognize my reactions and my experiences experiences, familiarizing myself with this new person I have become. There are certain things I cannot do the way I used to. I cannot program with the same complexity that I used to. I cannot simply jump in and learn new computer programming languages like I used to. I cannot push myself for hours upon hours upon hours of sitting in front of a computer, without paying the price four days after. I have to more actively manage my temper, I have to more actively manage my energy levels, and I cannot under any circumstances deviate from my eating plan for extended periods of time. Maybe a couple of days of eating more junk… but I cannot go longer than a few days off my diet without really feeling it.

I also cannot spend as many hours doing One Single Thing as I used to. I have to pace myself. But that’s not necessarily a bad thing. In fact, if anything I would say that it’s been long overdue. So, not all of the changes are bad, and not all of the adaptations are worse than my life originally was. It’s just change to me now, just like changing my job, or moving to another location.

In some ways, adapting to a brain injury can be easier than adapting to a new job, a new place of residence, or other life changes. I think that brain injury offers that those other changes don’t, is steadiness. It offers a new kind of predictability, if I watch carefully and study my situations. And it gives me the opportunity to really shape the outcomes with my own choices and my own behaviors.

In terms of other kinds of changes, I have to adapt to other outside shifts, whereas with brain injury it’s very much an internal process. And while the motivations and choices of other people may sometimes mystify me, inside my own head I have plenty of opportunity to get to know myself, learn about how my system works now, and adjust. I don’t always get that same opportunity with other people and outside situations, but I do have that with myself.

In the end, brain injury recovery is not a simple, straightforward thing. It’s complicated, and it’s different for each person. At the same time, it does have certain benefits and advantages that I probably never would have realized, had I not gotten hurt. I’ve had a number of concussions in the course of my life, and each one taught me something different. I’m not saying I’m glad they all happened, but if it has to happen, I might as well get something out of it. And I have.

Ultimately, we all need to make our own choices, and we all need to find out that’s our own paths. It’s not necessarily for me to tell you how to live your life, but I can tell you what works for me. And I can tell you what I have learned to be essentially true about the nature and experience of brain injury and recovery.

The main thing I’ve learned is: brain injury recovery is not 100% impossible, the way people have said for many years. It also isn’t what people seem to think it is. We might not regain every single faculty and ability that our brains used to have, but we can still develop other skills and other abilities that will help us to recover our quality-of-life, and bring genuine happiness — even where we were miserable before. It’s not about making the brain do exactly what it used to do. It’s about recovering your dignity, recovering your independence of thought, and regaining your self-respect. There’s more to that than brain function, and there are more ways to achieve it then by making your brain do exactly what it used to do in exactly the ways it once functioned.

I can’t say this often enough or stress it strongly enough – brain injury recovery is possible. I am doing it. I have done it. It is an ongoing process, and I will probably never stop doing it. But I have made more progress in the last 10 years than my old neuropsychologist had ever seen in 40 years of brain injury rehab work. I’m living proof – walking, talking, working proof – that it is possible to put your life back together and regain your sense of self, even if everything you once had feels like it has been taken away.

Anyone who says differently – that brain injury recovery is impossible – has not been looking in the right places, or hasn’t been talking to the right people.

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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.

7 thoughts on “Learning to live again. After TBI”

  1. Absolutely! Recovery is possible with hard work, support, resilience, acceptance, curiosity, and never giving up! It’s TBI awareness month – I’ve got my green on!

    Liked by 1 person

  2. Somehow, I am not having as many issues with coping with my emotions as what was expected. Sure, I can get worked up over trivial things but I can also calm myself down to a point where I can think logically about whatever the situation is and deal with it accordingly. I do get help from an antidepressant that is more for anxiety, though. Still, even without it, I know when my thinking is off and, with effort, can adjust it.

    Liked by 1 person

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