Debunking Ten Myths of (TBI) “Recovery”? – Myth #1

Activation of Brain Region Predicts Altruism.
What do the experts have to say?

I recently was sent a comment by a reader who referenced the following 10 myths of Head-Injury in their comment. I wasn’t able to publish the comment, but I’ll share what they sent along to me. I’m not sure how I feel about the 10 myths which are discussed. The first one, for starters, is full of things I don’t really agree with. And I’ll tell you exactly why in this post. It’s only fair, since the book/writing in question is by some very famous and authoritative experts who (as far as I can tell) aren’t actually brain injury survivors. I’m sure they have their reasons for saying what they do, but I’d like to weigh in with a different perspective

DEBUNKING TEN MYTHS OF “RECOVERY”
~from CH2 “The Nature of Head Injury” by Thomas Kay, Ph.D. and Muriel Lezak, Ph.D., the book is entitled “Traumatic Brain Injury and Vocational Rehabilitation”, Published by The Research and Training Center, University of Wisconsin-Stout.

Myth #1: The Concept of “Recovery”
Throughout this chapter we avoid such phrases as “recovery after head injury,” There is a reason for this. Most people’s experience, and therefore expectations, regarding illness and injury is one of temporary reduction in functioning, followed by a gradual return to normalcy. People get sick, go to hospital, and get better. Bones are broken, casts applied for a period, muscle strength regained over several months, and scars fade.

BB: The refusal to use the word “recovery” in terms of brain injury is, in my opinion, a huge mistake. It deprives us of hope, and it gets us thinking that we’ll never, ever be able to regain our lives as functioning human beings. It strips us of our humanity — and for what? Semantics? Some overblown sense of self-importance that certain “qualified” people can (and are allowed to) decide what words others should and should not use to describe their journey back to functioning?

I think that clinicians and other experts are using it in the narrow sense — regaining the full use of every single faculty that was impacted by brain injury exactly the same way it was before. And that narrowness does us a disservice, in a number of ways.

First, as we grow and change and mature, our brains are constantly changing, anyway, so the idea that any person — after a significant experience — would be the same after the event, as they were before doesn’t hold up, either with or without brain injury. We are constantly changing, constantly growing. We move forward, and we slip back. That’s just the human condition, and we are built to overcome setbacks. Implying it’s impossible for us to regain our ability to function after brain injury is one of the dumbest things I’ve ever heard. If that were true, I’d be a vegetable by now.

When commonplace notion of recovery is applied to head injury, however, considerable harm can be done. Almost never does a patient “recover;” the residual deficits are usually significant and permanent. The continual expectation of recovery can lead clients and families into denial, frustration, disappointment, and even worse, extremely unrealistic expectations and planning.

BB: Yes, I get that people get their hopes up about being able to get back to where they were before, and sometimes it doesn’t happen. But it seems to me the real harm is in people who are supposed to be helping and caring, not bothering to help people move on. “Almost never does a patient ‘recover’?!” WTF?! That’s ridiculous. Maybe they’re talking about moderate or severe brain injury, where large portions of the brain are destroyed. Okay, then… but still, it’s possible for the brain to reorganize itself. If this is true all across the board, then how about Paul Bach y Rita’s father, who had something like 75% of the motor ability section of his brain destroyed by stroke, yet recovered and went on to take up mountain climbing? Please. Significant and permanent residual deficits are not going to be helped by people giving up and saying, “Oh, well… you’re brain injured, so I guess you’re screwed.”

A continual expectation of recovery is NOT bad. You just have to define what kind of recovery you want. Okay, so maybe you can’t keep your balance as well as you once did. Maybe your coordination isn’t as great. But we know much more about brains and neuroplasticity now, than ever before, and who’s to say it couldn’t happen in the future, with the right approach and the right dedication? I’m really convinced that it is possible to restore functioning in ways that these experts think is impossible — largely because I’m doing it.

Four years ago, I was putting myself directly in harm’s way, hiking down deer paths in camouflage during deer hunting season (no kidding). I was spending money like there was no tomorrow. Six years ago, I would sit in front of my computer at work and just stare at it for hours. I would flip out on people who came into my cubicle. I would try to pick fights with on-duty policemen. I don’t do that anymore. I am recovering.

Moreover, the successful rehabilitation of the head injured person cannot take place until they and their family are aware of the new limitations, accept them, and formulate new goals based on changed expectations.

To speak of, and implicitly believe in and hold out the hope for recovery as defined in the first paragraph can severely impede this process. Of course, this process of awareness and acceptance, on the part of the family, is a process that takes time. Certainly families, especially in the early stages, must hold out hope. However, we prefer to speak in terms of hope for as much improvement as possible, to build in realistic expectations from the beginning.

This is crap, if you expect this to apply to everyone all across the board. There are so many exceptions to this, I can’t even begin to say — starting with myself. I do implicitly believe and hold out hope for my own recovery — precisely as it is defined in the first paragraph. I don’t care what they say. It has NOT impeded my progress. If anything, it’s improved it. Holding out hope for “as much improvement as possible” is beneath us — as human beings and as survivors of brain injury. And “realistic expectations”, as far as I’m concerned, are just ways for experts to help caregivers who are totally tweaked by the experience of having a loved one sustain a brain injury, to shield themselves from the rigors of building back what you’ve lost.

Seriously, the big myth of this first point, from where I’m sitting, is that there can be no recovery. That’s crap. My neuropsych says so, and so do I.

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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.

20 thoughts on “Debunking Ten Myths of (TBI) “Recovery”? – Myth #1”

  1. BB –

    Saying there is no such thing as recovery is not the same thing as saying there is no hope, that a person cannot have a full, productive and satisfying life, that one cannot do things -some the same as before. But it is important to know that there isn’t an end goal called recovery where one goes on as if nothing had happened. A dead brain cell is a dead brain cell and it doesn’t come back to life. The number and location of those neurons will reflect the changes that may occur.

    I agree with you that many rehab programs take an attitude of passive acceptance which almost borders on encouraging people to think of themselves as incapable and I also agree with you that one can accomplish a great deal and that hope is a valuable and necessary part of healing but …I do not use the word recovery, I don’t like it because I think it is misleading. The goal is NOT to return to what was (whatever that was) but rather to rebuild with what is, to improve, to keep at it, to adapt and innovate etc. For some folks it is possible to return to their life path in many ways – jobs and family and friends – but even then they often have to make changes – eliminate unnecessary activities, get enough sleep , exercise, learn how to accept mistakes and even a few disasters.

    Rebuilding is also a positive – it focuses on making changes that you choose, on making improvements when you can (many folks with BI tell me they are more patient now). As a final thought we often do not really have a good objective view of who we were or how we were – we may over or underestimate abilities, skills, etc – we all hold certain images of ourselves in our head. If we try to return to our ‘imagined self-perception’ we are simply chasing a rainbow. Better to look forward than back.

    Hope you are well.

    M.

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  2. I think that the reason that this issue is pushed so much is that lack of self awareness is a HUGE problem in tbi – one that is experienced at all levels and gets folks in trouble (sound familiar???). So the providers try to impress upon folks that no, its not business as usual – however that comes across as a loss, as a death of self as a limited self.

    I do know folks who have been in formal rehab programs where they stress this but they make it clear that understanding that you will have weaknesses, limits or deficits is the first step to having the life you want. You cannot have it with denial, you cannot have it by making the same mistakes over and over and over, you cannot have it in an instant – but you can have it.

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  3. m –

    Good to hear from you again. Things are going very well here. Crazy-busy, but still good.

    I hear you about changes to functioning. But at the same time, the brain is known (better now than ever before) to recruit different areas to doing the work of parts that were injured in the past. Witness “Effects of Motor Training on the Recovery of Manual Dexterity After Primary Motor Cortex Lesion in Macaque Monkeys” – http://jn.physiology.org/content/99/2/773.full – the monkeys that were forced to use their “bad” arms/hands had function restored, after brain injury. And rehab places are finding that allowing stroke victims to use their “good” hands actually causes them to persist in their issues. I am a strong believer in intensive training — that the brain can and does recruit other areas to do the job that’s required of it.

    Also, recovery in a more general sense is absolutely critical – and absolutely possible. The restoration of behavioral function, for example. That is possible with different approaches. They don’t all have to be the same exact ones as before, and they should probably not be, but that doesn’t matter. If you are in the habit of going to work everyday by the same route, and your livelihood depends on you getting to work on time, and there is an earthquake that cuts off your customary route, you can very likely find another route to get where you’re going. That route may take a while to find and initially take you longer to get to work, but through practice and refinement of the route, even discovery of other roads you never knew about before, you can get yourself back to work on time again.

    I think the thing that people are worried about is the rigidity of thinking that the only way to get back to how things were, is by the old route. Mental rigidity and reduced ability to consider the options plays a part in that — I think that is what BI survivors need to watch out for. And yes, that can be counterproductive. But just by living our lives to the very best of our abilities, being willing to go through all the difficulties, and learning to handle them with some measure of maturity, we can indeed restore what we had lost.

    Then again, we may realize that it no longer serves us to try do do those old things. And we have other options and possibilities available to us that suit us better.

    As far as I’m concerned, recovering from brain injury — very much in the sense that someone recovers from addiction (they can never drink or take drugs again, but they are recovering their lost functionality as a human being) — is not only possible but very probable. We need to think of recovery in broad, general, behavioral, human terms, not just these little individual details. When we do that, we see we are recovering every single day of our lives.

    Hope all is well with you, as well.

    BB

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  4. I hear you but the brain works as a whole – and if you have to use another road you sometimes get a traffic jam – slowed processing, increased fatigue and need for sleep. There are some folks who ‘recover’ – but that usually occurs within one month of injury – the ones with more lasting injury have lasting injury. Yes other parts of the brain can take over – this is common for stroke victims, its called constraint induced therapy – and it does work but not quite the same as before. And it’s important for people to recognize that the affected side may have some changes so that they can prevent themselves from injury. Even years later these are still limitations. Neurogenisis is similar – not all neurons do re-create. There are some theories that certain neurons become deactivated however and are not killed – and in these cases things like hyperbaric oxygen or perhaps TCS (transcranial stimulation) may be helpful in restoring those areas.

    I have never met anyone at all who – realistically and honestly – even 15 years later – after being designated as a person with a TBI who can say that they are ‘the same’. That doesn’t mean they can’t ‘get to work’ but they sure as heck know its by a different route – and they ALL – interestingly – remember that there was another route, even if they don’t recall what it was.

    I am doing good, busy too, been reading your column but have been so swamped.

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  5. Oh, yes, this totally sounds familiar to me. But you know what? That’s all part of learning. As far as I’m concerned, getting in trouble is part of my whole process, and the more I get in trouble, the more I have to work to get myself out. By regularly looking at my life — as an observer, not as a hapless victim — and adjusting the way I do things and interact with the world around me, I learn and grow and recover the functionality I had lost.

    I’m talking about recovering stuff that was gone decades ago — no kidding. I have been working at recovering my ability to self-regulate and control my reactions to my anxiety and moods, that started making my life (and the lives of those around me) sheer hell, on and off, since I was hit on the head with that rock when I was 8. I’m serious. This is big stuff – it’s actually becoming manageable. And my communication issues, as well. By making some changes to how I do things and how I interact with myself and the world around me, I am regaining some of the character my family describes me having when I was three year old – no joke.

    When I was three, I was an outgoing, happy, enthusiastic, active kid who engaged with life with such joy. After my TBI when I was 8 (and I think I may have gotten hurt when I was four years old in day-care), that changed, and my parents really struggled with the kid I became. I really struggled, too. I knew I wasn’t like that, but I couldn’t help acting the way I acted, and it was a terrible state to be in.

    I tend to disagree about the acceptance of weaknesses, limits or deficits. You may have some specific challenges (like me not being able to remember things in working memory 15 minutes after I’m told them… if I’m told them once on the spot). But there are ways to work around them and overcome them. For example, I have since learned that when someone says something to me that I need to remember, if I engage with them and discuss it with them, I can get that puppy lodged in my mind and in my understanding in a more complete way that’s far more durable, than if I just nod and say, “Uh-huh”. When I engage fully with the situation, I can overcome the limits of working memory, and recruit other parts of my brain and experience (and body) to the task of remembering.

    That works.

    I can think of many others, as well. The main issue I have with this talk about “no 100% recovery is possible” is that it strikes right at the core of our motivation, our belief that we can move forward. It cauterizes the very part of us that can make recovery possible. Small wonder, these same people are doing studies of long-term survivors and still finding issues years on down the road. Yes, there may be some changes they need to make to how they do things, and they should not hesitate to make those changes — just as you would make changes to how you do anything, when you find that something isn’t producing the kinds of results you need — but telling them that they’ll never be able to get back to the life they want is akin to capital murder. It kills the very part of you that you desperately need to get better. And it locks you in a perceptual prison of disability — which they are (whatever their good intentions) locking you into.

    Personally, I think this tendency to say, “Well, you’ll never be able to recover,” is a way for caregivers and care providers to unconsciously protect themselves from the rigors and potential disappointments and the intense hard work that is required to restore your functionality. The people who do it for a job have only so many hours in the day to devote to you, and they have to do paperwork, as well. So, they can’t really devote 100% of their energy to helping you. They may also have been trained this way, so they are as perceptually imprisoned as their charges. But the declaration that “there is no true recovery” is really just an opinion, professional and expert as it may be.

    And like they say, everybody’s got one… 😉

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  6. In many ways we are saying the same thing. I agree that with work and effort you can often restore functionality (though I also think that for some folks it’s not necessarily the right choice). But I also think that the injury is deeper than memory and deeper even than self regulation – and on this level there is a lasting change. It doesn’t mean limitations, but it means recognizing that there is a change and you can a) learn to compensate or b) change your path (if you can).

    And yes, or course trial and error is the way to learn – that is perfectly okay and good. And disappointment is part of life – so you fail a bit – that too is okay.

    And I agree that many providers do not encourage folks to make an effort – but my only key point is that it is very easy for a survivor to believe that they have reached the recovery zone, to aim for the recovery zone when what they should be aiming for is the process of rebuilding themselves continuously. .

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  7. Yes, that’s my point as well – the brain works as a whole, along with the body. Sure, you may get a traffic jam with all of the above. But that is part of the retraining process. We all forget how much sleep we needed when we were little babies and our new brains were learning and doing their thing. The reason I see some people getting stuck in their injury (and experiencing it as lasting) is that they put limits on themselves and they give up trying when they hit snags. I think that TBI can bring with it a lower tolerance for disruption — the inevitable hurdles we need to cross on the way to retraining our brains. THAT, to me — the willingness to treat temporary setbacks as permanent conditions — rather than the conditions/hardships themselves, is what holds us back in our recovery. We just have to keep at it, keep being willing to mess up, keep examining our experiences, our behaviors, our reactions, and keep refining, like you would when prepping for any performance that requires a high level of functioning.

    As for things not working as “well” as they did before – what if we just thought about these things as being “different” – not worse or better – and we allowed ourselves to just adjust accordingly to adopt different strategies for getting the job done? What if it weren’t about giving up on something, but finding a different way of doing it? Seriously, we make these kinds of changes all the time — brain injured or not — why make the changes about there being something wrong with us, and us needing to accept a less-than existence, just because?

    One of the things that brain injury tends to do, is get us trapped in thinking that there is only one way to be, one way to live, and if we can’t have that old way, it means we can’t have anything. Baby goes out with the bathwater, in that all-or-nothing scenario. But when has life ever been like that? It’s not – unless we make it that way. Life is full of all kinds of adversity, and the human race copes and adapts. Why treat brain injury any differently? We should never, ever imagine that we cannot regain our functionality, for the brain is an amazing thing that responds readily to the messages we give it. The minute we accept the idea that “there is no recovery” we lose that critical motivational piece that can mean the difference between getting by and truly moving up in the world.

    As for regeneration, if not all neurons re-create, so what? We can use other parts of our brains — parts that to the human imagination have no correlation, but which are situated near each other, so they can pitch in and help. I can’t find the studies right now, but I’ve read about “unrelated” brain areas taking over functionality of neighboring regions — in the body below, the regions were separate (something like face and leg), but in the brain, the regions are adjacent. And when one region lost functionality, the other kicked in and helped out.

    Personally, I think the Western approach is far too isolationist and individualized — we tend to separate and think that our strengths are in our individual abilities, and if one person/thing/part of the brain can’t do something alone, then it’s screwed. But actually, the whole body works very differently and is a lot more interconnected. We are actually built to pitch in and help each other when in need. And when we impose our conceptual limits on our natures, we limit ourselves needlessly.

    I hope you will seriously reconsider the “once damaged, always broken” mindset. You may think it’s helping people, but ultimately it locks them in a prison that is of their/our own making.

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  8. Yes, I think so too. To some extent.

    My main point is that it is unfair and a little cruel to tell people they will never have a chance to be normal again… to tell them that they need to define themselves by their injury and accept their lesser status in life. There is so much more to life, and even if we have to alter our behavior and find different ways of doing the things that mean a lot to us, we can still have a rich and fulfilling life.

    Finding a new normal is a regular human experience, but it’s not always in the context of a brain injury – an injury to the thing that makes us who we are. When finding a new normal is in the context of moving to a new country, learning a new language, learning new customs, it’s viewed in a positive, life-affirming light (for the most part, hopefully). But when finding a new normal is in the context of altered vestibular reality, diffuse axonal injury, sheared neurological connections, and changes to speech and comprehension, suddenly it’s a terrible thing that we just need to accept as our pitiful lot in life.

    Please. I don’t have words for how strongly I disagree with that, and how opposed I am to anyone telling anyone else that they are royally screwed for all time.

    Think about it… People experience dramatic occasions/opportunities for personal change all the time – and yet we don’t pathologize them and declare that the old ways are dead to us and pointless to look back at. We move along in our lives, looking forward for what else is out there. Say you get deported and you’re not allowed to go back to your old country — you liked it there, and you had friends and connections and what-not. But now you can’t go back, and they’re not going to let you in. Yes, that is a situation of the old being cut off to you, and you need to find another way to live. But making the act of getting on with life in the new country all about not being able to be part of the old, is living less than is possible.

    Anyway, I do think it’s not difficult to realize that you haven’t reached the recovery zone — you can find out by checking the results of your choices and behaviors, and then adjust accordingly. Call me crazy, but I do believe it’s possible to get to that zone, in some way, shape or form. But if you are invested and involved in your life, you may find out that there’s a whole lot more to living, than just getting to that zone.

    The thing is, we can’t cut people off at the knees by telling them they’ll never be able to live full lives again because of brain injury.

    Think of all the people out there who *seem* truly impaired, who are living happily, from one day to the next… It’s all relative, and cliche as it sounds, it is what you make it.

    So, let’s not encourage people to make it less than what it can be.

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  9. One last thought on this that I just found — from a review of a book by Luria:

    “To this end psychological reorganization is the most important technique needed but is based on the assumption that the portions of the brain controlling motivation are not involved in the injury.”

    Even if the portions of the brain that control motivation are still intact, when we de-motivate folks with talk of “acceptance”, we hinder their chances.

    And that doesn’t have to be.

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  10. BB –

    I didn’t say once damaged always broken – I said dead is dead. If you can’t use dead neuron then you have to a) try to use other neurons that are geared for the same function, b) train other neurons to work in replacement, c) accept some ‘skips’ in the output or d) develop other ways to use other parts of the brain to achieve the same goal (compensation).

    Everyone has a benefit-return. If you can use tools for memory and they work well then trying to rebuild your memory may not be the priority – especially if the process to do so exhausts you, drains you from enjoying life and makes it harder for you to do the other things you need to do.

    I definitely do not de-motivate people but I also don’t put anyone to shame for choosing different solutions. I believe that a realistic understanding of what the issues are and what you need to do is critical in creating a plan for going forward.
    I don’t define normal – that is up to each and every person – but if recovering a past type of functioning is the only normal they have then they won’t be normal. That doesn’t mean they can’t be superstars – but it does mean they have to understand what they are doing and what they are facing. If you are a world class sprinter and you lose a leg you can get a prosthesis and you can run – but you are facing different challenges than someone with two regular legs. If you want to compete with them – go for it – just know the issues. You will not regrow your leg however.

    The only one who says you are royally screwed is yourself. Change, difference is not less than. A new normal is defined as who you want it to be. But if you have cognitive challenges it might be wise to avoid being a neurosurgeon for a while, maybe forever. Why waste time trying to do something that isn’t giving you a return anymore – that doesn’t mean that you a less capable, less intelligent, less valued, it just means that life changes – for everyone.

    How would I know I have ‘recovered’ – what would that look like? Would I have the same job? The same interests? I changed, for many reasons and how and what I do changes too. Sometimes because of injury and sometimes outside of it. I am not sure what you mean by impaired – I know folks who have speech difficulties or who struggle with memory issues or organizational issues – they don’t hate themselves, they don’t live hopelessly, they work on themselves every day, bit by bit – but they acknowledge that their strengths may have changed, that what might have once been fruitful for them isn’t – and so they find something else – NOT something less – not basketweaving 101 but something else. And that IS hard. But it’s smart too.

    And some do return to previous roles – still different, still changed and perhaps they work to integrate those changes. They have nothing to prove to anyone. They just want to live a good life and there is nothing wrong with that. They do not feel impaired, or less.

    Here’s one of my favorite lines – most folks are just temporarily abled. I believe that – so I am one up on them. Been there, done that.

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  11. All I can say is keep it up my friend. A brain injury is an experience and you can put it behind you. I love that you wrote this because it brings to light the current perspective. The definition of promotion is to draw attention to so basically to draw attention to TBI problems that might happen is to promote the problem. From day one the focus should be placed on the possibility of full recovery. Most have yet to experience what can happen when recovery is empowered, I tell you from experience, it’s great.

    No one in my life empowered my recovery from a severe TBI sustained in 1998. I have made a full recovery and I’m reaching out to assist anyone who will listen. I help make recovery possible by teaching others how to do it. Thanks again for publishing this blog, I would like to connect with you more.

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  12. Thank you Jerry –

    I will certainly keep on. I will try to stay positive and remember that more is possible than I can presently imagine — and that fates that befall others need not befall me — or necessarily others, as well.

    Thanks for your words.

    BB

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  13. Read what Kay actually wrote. He never says “…there can be no recovery. ”

    He says there is not a “temporary reduction in functioning, followed by a gradual return to normalcy.” as is the case with many injuries.

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  14. Actually, I believe Kay’s point is that most people expect that to happen, but with TBI it doesn’t. That’s where I differ with Kay and Lezak.

    This:

    “When commonplace notion of recovery is applied to head injury, however, considerable harm can be done. Almost never does a patient “recover;” the residual deficits are usually significant and permanent. The continual expectation of recovery can lead clients and families into denial, frustration, disappointment, and even worse, extremely unrealistic expectations and planning.”

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  15. Brain injuries are unique in nature. People’s ways of coping are different. And they can change over time. Personally, I liked the word initially. It may have helped me get through days, weeks and months; so I wouldn’t be against someone using. But in my personal experience the use of the word recovery is something that I prefer to avoid. Yes, a recovery may be possible and I hope that all survivors “recover”. “Recovery” suggests we get back what we lost. I recovered a lot then. I recovered my analytical skills in most areas. I recovered the ability to use expressive communication within 6 months to a year. In many areas, I not only recovered but gained. I learned a new language during the 6-12 months that I recovered expressive communication. I believe that I became a much more objective thinker. Unfortunately, I did not get back the most important to me.
    I did not get back my prior passions. But I found new ones! I never got back a sense of self that I had before my coma. But I forged out a new self. To this day, it feels uncomfortable to me and somewhat foreign. But I work with it. And after 15-20 years, I even felt that I could have the types of feelings that made me feel life had excitement much in the way it had before 1989. I felt that I could have romantic feelings that were sustainable and my desire to have family became a reality that was within my grasp. Unfortunately, I sustained another injury during that year. Everything in that area was wiped away again. I almost put an end to it all. One of the reasons I am here today is because I had years with a real acceptance that I would not recover certain things. My survival instinct was not including “recovery” in too deep of a way. Have you seem the movie “awakenings” if not please do. It is what I see as the extreme of all brain injuries. People are trapped in a body.
    Years later, they get out. But the state did not hold. Yet many returned to their pre-existence with a strangely relative ease. They seemed almost appreciative that they had moments of “recovery”. When I feel depressed and angry at ones who yelled “wake-up” in my ear when I couldn’t do much, I think of those people who were stuck and trapped in ways that make my state today look like paradise. My name is Luka and I’m grateful.

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  16. I have changed my definition of what I lost, over time. I’m not even sure I care about some things anymore, and part of me thinks they would have changed anyway. Hard to know, especially since my memory is so spotty. I can’t clearly remember a lot of what I used to believe. Of course, there are the old diaries, but they tend to depress me. I was pretty out there, fir do many, many years. Almost delusional.

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  17. I was pretty out there too. Sometimes, I wonder how I passed for OK. I just know that everybody avoided me after awhile. Learning to live after a coma sucks.
    People yell in your ear and you’re not even aware that they are abusing you. Your dream life becomes mixed up. You get hit in the head and you’re starting over. People treat you as if you are pathetic and in some way, you agree. You feel like a loser, You know you have lost. But the “you” part feels strange. You know it was a physical problem but you’re treated as if you are psych problem. Your auto-biography from childhood is there. You list the ways you were abused, knowing that many people are abused as children. But the therapist only has “a hammer and sees the nails.” And you have real life nails. But you have another problem.
    You go to the neurologist. They suspect seizures and lesions after consultation. They say you might lose your driving privileges. You say fine. I do not have a car and very little money.
    Whatever you have you give away as you have been for years. It doesn’t matter.

    Just the other day I was writing a check and I started with 19– and said that isn’t right. 2015. what? 15 years later and I’m putting 19 to begin the year. I have about 2 hours a day of thinking that doesn’t require so much energy. My last TBI put me and my recovery back 20 years. People around you will never understand, if anything, they will blame you. You shut-up.

    You know that you do get better with time. But you wonder in your 50’s if the plasticity is there and the damage not worse, it’s just that you’ve been damaged before and you know how to deal with it better. You do not put yourself in high stress situations much. You think how you can do something for humanity with your time left. You wonder where and how.

    Like

  18. Yeah… that yelling in the ear business gets pretty old, after a while. If people could simply live and let live, it would solve a whole lot of problems. I honestly don’t understand how people believe it’s okay to treat others badly… because THEY feel bad/scared/upset.

    It makes no sense to me.

    I wonder, too, how I can do something. There is so much I would like to do, but I get turned around and run out of time and energy, and then the one thing I set out to do gets lost in the shuffle.

    So, I stop moving, catch up on my sleep, and try again later.

    But I could do without the stop-start-stop-start routine.

    Like

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