Have you experienced a brain injury?


Brain injuries can be caused by something as “simple” as going down hard when being tackled in a game, knocking your head against something that’s harder/more stationary than your head, a fall, or an automobile accident. Head injuries can be “traumatic” when the brain is physically injured — something that is surprisingly easy to do… and can be surprisingly difficult to recover from. The connections in the brain can be distressed, frayed, shredded, or downright severed by physical trauma, and the effects can be devastating.

Even “mild” injuries (such as a closed-head injury that results in just a few seconds of unconsciousness — or simply “knocks you silly”) can have life-altering effects, as I can testify. Memory can be affected, as can cognitive processing, and don’t get me started about the effects of confabulation (being certain that you know exactly what’s going on, when you only have part of the story right), or anosognosia (not even realizing that anything is wrong, or there’s a problem). These are real cognitive issues that can have a wide range of effects.

If you’ve been hit on the head during a sports match, or you’ve been in a car accident, or you’ve had a fall (I’ve had all three happen to me multiple times), and you’re having more trouble with basic functioning — things that used to come easy to you — you might be dealing with the after-effects of mild TBI (mTBI).

I’m convinced that in the coming years, we’ll expand our collective understanding of the brain and TBI, and we’ll develop clever and ingenious ways to either fix the problems we have, learn how to compensate for our identified issues, and find ways of avoiding problems caused by things that cannot be fixed. As far as I’m concerned, the most vital ingredients in dealing with mTBI are:

  • open-mindedness to a wide variety of alternatives
  • lack of judgment about the injury and the resulting problems
  • compassion for the “walking wounded”
  • patience with everyone
  • love shared abundantly between all people impacted by the injury
  • acceptance of each and every person’s limitations
  • respect for the dignity of all human beings, as children of our loving Creator
  • recognition of each and every person’s own unique gifts and strengths, some of which may emerge only after a TBI

I actually prefer to call my past experiences “BMI’s — Brain Modifying Incidents”, rather than just “TBI’s – Traumatic Brain Injuries” since I do believe that recovery is not only possible but probable. I believe that our brain changes in unexpected ways, and neuroplasticity (the ability/tendency of the brain to “re-map” its functionality from one area of it, to another) causes our brains to evolve and develop differently as a result. The thing that makes TBI-introduced changes the most difficult, in my opinion and experience, is rigidity and unwillingness to adapt to those changes and recognize the hidden advantages and blessings that come with any challenge.

But for the sake of this blog, I’ll call my past experiences TBI’s — or mTBI’s if you will, since I was never knocked out for longer than 30 minutes, and all my injuries (that I can remember) were closed (my scalp wasn’t broken, nor was my skull fractured).

I believe that there are ways to take command of the often-daunting situations introduced by TBI.

  • Learn all you can about it.
  • Seek help where you need it. Don’t be afraid to ask for help – people love to help each other, no matter what our greed-driven markets and me-first pop culture may try to tell us.
  • Don’t be afraid to try new things. It could be that the next great breakthrough in TBI recovery is something that you’ve been wanting to try out.
  • Share what you learn with others. You are not alone, and others may really benefit from your experience.
  • Don’t be afraid to challenge authorities and question experts. They do not live in your body and they do not experience your life.
  • Use your own experience as a guide and rely on the judgment of both yourself and others whom you trust.
  • Learn who’s really on your side and actively cultivate those connections. Know your tribe and stick together.
  • Don’t resign yourself to a life that’s less than all it can be!
  • Remember, your Creator loves you , no matter what, and you are always a child of the universe who has something to offer, no matter how small that gift may seem to be.

You don’t have to resign yourself to a shadow life of impairment. Recovery is possible, no matter what others say. I’m walking, talking proof of that.

Never, ever, ever give up!!!

152 thoughts on “Have you experienced a brain injury?

  1. Excellent, insightful and with wisdom. I especially like the “never, ever, ever give up!” It’s quite a balancing act, respecting our limits yet pushing them too, not to the point of overload and harm, but stretching for greater growth.

    I appreciate your blog and am enjoying your posts.

    I like to remind folks in our TBI support group, God loved me just as much before the accidents as He does now.

    Perhaps broken brain, but beautiful spirit! :-)

    Blessings,
    RH

  2. Oh, yes – very important – God loved you just as much before your accident. He didn’t punish you for doing something wrong, by getting you hit on the head. He didn’t use an injury to “teach you a lesson”. Sure, TBI is a huge lesson, but I find that seeing it as a personal attack by a disapproving God just makes my life more difficult. Who can say why things happen – all I know is, it happened, and now it’s my job to figure out what to do about it.

    Thanks for your kinds words

    BB

  3. i see obma sign 9 states on behalf of chis reves on his injury and i sent obma a letter to the white house past satuday to put a little pressure on him to this endeavor.

  4. You’re quite welcome Julie – thanks for putting the info out about this important topic. Now, if we can get some help from the system to either make these integrated therapies more affordable, or have them covered by insurance companies, it will be good.

    Why should only the wealthy be healthy?

  5. The recovery is possible theme is the source of some of my own cognitive dissonance these days….I guess the question is ‘what is recovery?’ – for the BIP (brain injured person) I think we seek the wholeness we knew (or at least thought we knew) – that integrated person who had absolutely no idea what their process speed was, or the visual perceptual ability etc etc, the person who thought without thinking about it. We want to recover the our self – but the only self we had is the old one and so we spend a fair amount of time chasing it – even without realizing it. In TBI your brain was modified significantly – at least significantly enough that you experienced change – cognitive, behavioral, etc. . And that cannot be undone. Yes, I do believe that there is more neuroplasticity to thought han we realize, I do believe that there is neuron growth, modification of processes etc and that we can often recover skills and abilities that we thought lost. I also believe that we may find strengths and positives we did not realize existed, or that grew out of the experience. But we are changed – and if recovery means to go back to who we were – no, we do not recover.
    But we do move on, and grow and meet challenges and become equally compelling, lovable, good, productive human beings. Yet I think that this is one of the hardest components of BI – one may understand intellectually one’s test scores, one may get habituated to memory issues or focus problems or organizational chaos – but one still thinks that those are things to overcome – they aren’t part of our life, part of who we are. When we see them as something to overcome it makes it harder to accept strategies, compensations, and to re-shape our vision of ourselves. We want to fix the broken things rather than use our new brain as it is.
    It’s a fine line – I have done and accomplished many things because I never asked a neurologist, or neuropsych or any of my various caretakers and therapists for ‘permission’ t o do so. But I have also spent a lot of time running that proverbial hamster wheel becasue of denial, lack of insight, and resistance. It is hard to trust what people (professionals) tell you when you don’t see it or feel it yourself.
    I often think that we don’t know how far we can go, how much we can accomplish but I also think that what those things mean can be very different than we originally thought.
    Hope this makes sense.

  6. That totally makes sense. True, true, true. I really hear everything you’re saying loud and clear. And there’s so much to consider and ponder. Wonderful food for thought!

    What is recovery? What constitutes “high functionality”? What is the sign/signal that we are okay?

    I grapple with this all the time, especially when dealing with people I know who interact with me the way I’ve “trained them to” over the years. In the past, I spent an awful lot of time and energy covering up for my limitations and shortcomings, and I’ve gone to almost super-human lengths to hide the fact that I have problems. For most of my life, I’ve picked up maybe 1/2 – 1/3 of what people were saying to me, and I “fudged” the rest of it, using coping mechanism like visuals/imagery to help me conceptualize what was being said, nodding and smiling and behaving like I knew what was going on, repeating things back to other people in slightly different terms without really understanding what they’d just said to me… And it all worked like a charm for quite some time — provided my contact with people was limited and they didn’t know me well enough to realize I was fudging my way through most of our interactions. As long as I could keep moving, I was fine. But when I settled down, bought my house, stayed on at jobs longer than a year or so, managed to sustain friendships over the course of years rather than months, real problems started to emerge, and I found myself sinking deeper and deeper into a hole I dug for myself.

    And I had to reach out for help. It literally was a matter of life and death, at one point. Someone very close to me was seriously ill and unable to care for themself, and they depended on me 100% to advocate for them with doctors and nurses and insurance companies. It quickly became utterly terrifying. All of a sudden, my coping mechanisms failed me and I realized that I just was not getting most of what was being said, I was misinterpreting information, and I was missing significant elements of their diagnosis and course of treatment. Before long, I found myself constantly teetering on the edge of panic and/or collapse, and I was melting down regularly, just freaking out over every little thing and not doing well.

    It just was not good. And I could see, up close and personal, how many deficits I had. And they weren’t just about me and looking good to the rest of the world. They were about me not being able to perform adequately in a potentially life-and-death situation. Talk about unsettling… And here I thought I was doing so well…

    Yes, there certainly is a fine line between just getting on with your life and living it to the best of your ability… being able to do plenty of things in spite of your limitations… and getting stuck on that hamster wheel you mentioned, getting into trouble, hauling yourself out of trouble, trying to figure stuff out, not knowing exactly whom to trust — including yourself.

    But somehow we make it. If we just keep trying. Then again, sometimes we don’t.

    It’s a conundrum of the most epic proportions — ’cause the brain is involved. It just makes me nuts, sometimes. I’m a very proud person with a lot to prove to myself. I always have been, since the early days when my parents were treating me like I was some kind of idiot, when I just didn’t have all the information they were telling me — ’cause my brain was only picking up a portion of it. I have always known I’m not nearly as dense as my family thinks I am, and although I’ve sometimes “taken on” the judgments of others who have treated me like I was just lazy or rebellious or contrary or undisciplined, I have always known deep down inside that it wasn’t ME that was the problem. There was something else. Something functional. Something systemic. Something about how I was/am literally put together gets in the way. But until I learned about TBI and put together all the pieces of the puzzle… and then got corroboration from a professional who has a vested interest in the Truth about my situation… I didn’t have anything to back me up, so I really floundered.

    Now I’m getting help — perhaps the biggest and most helpful piece is having someone confirm for me what I suspected. Being told that the struggles I’ve had really were struggles — in some ways, even more than I ever could/would admit — has been hugely helpful for me. More than I can say.

    It’s such a mystery, all of this. Such a wonderful, awesome, sometimes terrifying mystery.

    Thanks again for writing. I’ll be thinking more about this in the coming days…

    BB

  7. Pingback: Thinking about TBI “recovery” « Broken Brain - Brilliant Mind

  8. Hi. Thank you for sharing your experiences and insight about your TBI. It is very helpful for others, like myself with a TBI. I especially appreciate your encouragement for people to never give up and to accept yourself for who you are. Before I could really make progress and improve my life, I had to stop blaming those around me for everything that was going wrong and take a good look at myself, center myself, and decide what I wanted to do and what was really keeping me from doing it. The most logical answer I came up with was I was in my own way. I am the only person that can control my life, only I can change my situation. No matter how angry someone is with what I do or do not do correctly, or up to their expectations, make choices to please them, or just being myself really does not matter or make a difference. What matters most is that I am comfortable in my own skin and I am being myself, and doing what I need to do to make myself happy. Most important is that I am doing the best that I can do, that I always try to do my best and whatever my best is is OK. I no longer try to impress anyone or adjust myself to someone else’s expectations. Life is much better and I end up making people around me much happier. I rarely become angry because I cannot do something. By learning to accept myself for were I am at and who I am has set me free to be myself. It is the best for family to. I have three teenagers at home and I feel I am setting a good example by being who I am and accepting and loving myself. I am hopefully teaching them to accept people for who they are and to be yourself rather than putting on a big facade.

    I have an acquired severe TBI from an auto accident 11 years ago. Life has been a challenge. I have been blessed with family and friends that love and care about me.

    Thank you for giving me the opportunity to share. I will share more of my story at a different time, of course there is more.

    Mary Beth Camp

  9. Mary Beth -

    Thank you for stopping by and thanks for sharing part of your story.

    These are great words to live by. At some point, we really do need to let go of the old habits/ways of trying to live up to others’ expectations. We all do it, to some extent, and it’s a tough habit to break. But sometimes we just don’t have a choice, do we?

    I look forward to hearing more of your story.

    Be well
    BB

  10. Glad I found your blog, thanks for starting it …and continuing. It’s good to finally realize what’s been going on with me for the past couple of years is Not ‘just in my head’ [though it is] and that I’m Not alone in my experience. I always associated injury with bleeding and other ‘palpable’ indicators.

    My experience was initiated by a rear end collision I sustained while at a stop light 10/06. I thank God that cross traffic had stopped, or I’d have been Dead on impact. I thought I was ok and even told the paramedics so as I shook my head to clear my vision. Evidently they couldn’t see I wasn’t quite right. I regret not asking to go to the ER immediately. Dealing with the insurance, lawyers and doctors was interesting too – Not having had the experience themselves, they just don’t know How to relate and I certainly wasn’t thinking quite right to know the difference.

    The absolute Best help I received was from the Dean of students @ PIHMA.edu who gave me Acupuncture Treatments that proved to be Very effective for my whiplash And clarity of thought. Still have the ringing in the ears though – maddening at times if I allow myself to give it too much attention.

    I’ve been experimenting with binaural beat generators in an attempt to repattern my brainwaves … at minimum it masks the tinnitus. My hope is for it to stimulate new neural pathways and alleviate some or all of the symptoms from the mTBI.

    My challenges with organization have become greater and learning to do something different to earn a living has also been an interesting process.

    I am encouraged by a future I see as brighter than any part of my past has been. I am committed to doing my part to raise awareness of the effects of TBI and ways t treat it.

    I am @ your service – What do you need?

  11. Thanks for stopping by Jim -

    I’d be interested to know how you went about finding a different way to earn a living, as well as how you organize yourself.

    Thanks again and looking forward to hearing more.

    BB

  12. Thank you thank you thank you for writing this! Your blog has made me realize that I am who I am, I can get through this and I don’t need to give up!
    I have really enjoyed reading your blog. Thank you for sharing your experiences. It can be hard to do but very therapeutic.
    I’d love to trade links if you would like! I’ll add yours to my site and if you want, I’d be grateful to have yours on my site.

  13. BB

    Thanks for putting this blog together and keeping it so active. I was excited to find it last week. I relate to lots of things you’ve expressed here. I’ve spent the last 9 months trying to learn about (my) tbi online and finally found a blog. I see you have many more linked. duh…I’m a little behind the times, but really appreciate hearing the voice(s) of other high functioning tbi peoples. I’ve learned a lot and have integrated a lot of knowledge but had little personal connection with other tbi survivors. And I’ve integrated knowledge which is a step but I am seriously ready for some transformation now.

    I had a tbi 27 years ago. I was thrown from a vehicle after being hit by a drinking driver going 90 in a 25 mph zone. Some sources put my injury in the severe category because I lost two weeks of memory – one pre-, one post-injury – (those sources that measure up to 24 hrs. amnesia- moderate, over 24 severe). But aside from that my tbi is termed ‘mild’ because I am ‘high functioning’. People don’t know until I tell them. I don’t hide it, but then for years I had this delusion fed to me that it meant nothing. These terms make me shake my head at times at just the tip of the crazy iceberg of the world of tbi rehab. I was in the hospital 11 days, sent home with a ‘clean’ catscan and a ‘That was terrible; thank God you’re okay’ message. Personally and professionally that was the jist of the message I got for years.

    That was the early eighties and a rural area so that’s how it went. I know there is a whole world of research and knowledge and resource now that didn’t exist then and still, plenty of tbi survivors fall through the cracks daily.

    I was 17, I went to college. I got my degree. I hung out, not pursuing much, making a mess of things here and there – that doesn’t look too strange in your twenties. It was 10 years later that I made some changes, got a little settled and the PTSD stirred up.

    The timing of my accident and perhaps the PTSD paralyzed me somewhat there developmentally. Then all the frontal lobe, parietal lobe and temporal lobe damage did its own job of recircuiting the best it could on its own. On one hand my brain did a phenomenal job; on the other, it really could have used some help and guidance! I was diagnosed with the closed head injury immediately so I’ve always known it was there. Wish I could have found out about what I’m coming to understand about my life and how it was undermined and defined in essence by my brain injury 5, 10, 15, 20 or 25 years ago!!

    Over the years I have sought out tbi support groups but all the energy and attention were on those who really did fit moderate to severe status from all outward appearances. I didn’t think there was anything for me out there because I didn’t see it and I persevered on the path of solving my depression and other problems in other ways but never found any real help that connected me to the truth. No professional or path of healing confirmed for me what nagged at me – that the tbi was a big deal, counted for a lot more than anyone knew or considered. I have written records where I told psychologists I thought some of these problems were related to the tbi and there are written responses of – we told her to keep filling out her behavioral chart – for good behaviors like -make my bed, do the dishes, exercise. Or was given the response that injury was too old to be able to find out any info on or treat. Not until about two years ago did a counselor ever stop to say ‘ oh wait…you had a head injury. okay that is different…’ That’s only after a year of counseling too. I get so mad about looking at this over the years. Mad at them and mad at myself for not sticking with it, getting to the bottom of it, pursuing, being more certain, etc. etc. – but…these are all symptoms of tbi, right? Aaaargh.

    About three years ago I had some real traumatic events happen in my life and I lost my mind a bit emotionally and mentally and cognitively. I made a lot of decisions – completely decontructed my life. I had done this a couple other times in the years since the PTSD had revealed itself. I relaly think and this seems to make sense to psychs I’;ve asked since that the symptoms of the tbi were somewhat repressed along with the PTSD. But the stress of the past few years has really caught up with me and every way my brain dysfunctions seems amped up. And I’ve been in overwhelm for a long time now.

    Decisions!! Figuring out the best options, what I want, what is best when the fog bank settles in and my brain starts a non-stop ping pong match between options, so I start asking opinions or for help to clear my head and more thoughts get on the table and I can’t seem to prioritize enough to pull any of them off the table and I might even choose something… then think it was completely wrong, then cancel it then realize I just cancelled what was comnpletely right. I really stir up some storms making decisions that involve any degree of emotion – most for me. It wears me out so I procrastinate and avoid a lot. But that doesn’t help. Just more reasons to feed the cycle of regrets that are really on top of me all the time now. And the next big decision that comes around – or a small one that I make big – starts out with my confidence in my own decision making process in the dumps. I hope, really hope to connect with some healing, now that I understand more about what is going on, that connects my intuition to my heart to my head to my desires. And even those seem to disconnect from my understanding too much of the time.

    Since three years ago I have been in this cycle and given up a lot of great opportunities through just this confusion. About nine months ago I did it again and as I stood there with my mouth open, not believing I did it again, I stopped and said STOP. You have got to get to the bottom of this brain injury. I don’t understand myself and neither does anyone else.

    So for the past year I have worked to educate myself and get some help. I was desperate nine months ago and got hooked up with some state assistance but being what it is there are long weeks and months between each movement forward. When I went in to talk about my head injury to this man I thought he was going to listen to me and just say – get outta here. But he didn’t. He took the tbi quite seriously and sent me for a neuropsych eval. AFter testing the first thing she said was – do you know you have a very high IQ? I thought – Oh, no… here we go, I’m going to be shined on, like hey look at your degrees (those are classes – not life!) or you’re ahead of lots of people even with this injury so just be quiet. But these were not at all the other things she had to say following that comment. The neuro psych gave me a lot of specifics to show how what she said was true ‘on the test’ as well as in her words that the tbi has undermined me throughout my life. Thank you!!!

    And it is great to have a high IQ! I don’t mean to say it’s not worth a lot and has not helped me immensely. I guess there was just so much assumption around me that smart, creative, academically successful, socially functional are not at all qualities that go together with brain damage. Denial is seriously too limited a term to explain it. Also I am really grateful for the help from the state agency. But I have lost years. Years and years. I’m shifting continually from a level of excitement over what I’m learning that finally truly matches me and my confusing experiences and actions – and – the grief over it all and how those confusing destructive actions add up to what my adult life has been.

    It’s been a long time and at this point the past few years have worn me down. I’d gotten to the point that is maybe not that uncommon for tbi folks – a growing certainty within me that I’m either mentally ill or lack moral integrity at some core level – or both. A failure for sure and I have little reserve to manufacture hope right now. All the same I may get distracted and unfocused but I have a perseverance of sorts. I have tried lots of healing paths and lots of therapists have misdiagnosed me and grown very frustrated. I’ve lost my fair share of friends and after so long and not being able to turn things around even with the many visions of clarity that come and go…

    I’ve started a series of neurofeedback sessions to address focus and stress and such. There are lots of good reports aobut neurofeedback. My jury is still out on what I am experiencing but I’m practicing faith.

    Otherwise my faith is a struggle. I don’t know if I can change much. I’ve stood disbelieving what I just did so many times. The more I’ve learned the less I’ve felt embraced by the Universe. I can see many opportunities I’ve been given that had great healing potential for me in many ways. But why has this been hidden from me. 27 years later. It is like a cruel joke. Like I had the lottery ticket with 5 0f 6 numbers in my pocket all the time but now they’ve expired. Too many metaphors maybe.

    I don’t say everything is tbi. But at the same time while my eyes are being opened to all the ramifications of tbi in my life and personality – what I thought was my personality but is really tbi – ? – It can really feel like all is tbi or at least those neuronal paths and axons that reworked themselves while I was unaware are a tangled mess grappling through every, absolutely every pathway possible.

    I’m confused and overwhelmed and obviously have lots to untangle. I used to never relate to suicidal thoughts. Such a cruel thing to do to your family et al. Then a clear thought crossed my mind about ten years ago. I thought, ” My family could deal with my death a lot better than I can deal with my life”. Ten years later I would say it’s worse…I’m many more mistakes down the road, bad economy, marginal job and skills, no home, etc. ad nauseum and It’s 10 Flippin’ Years Later – lost – with lots of regrets picked up along the way.

    I am so disappointed and alarmed by what my life turned out to be. And how can I explain the fog bank I’ve been in? To have not turned this around so so long ago.

    I’m not suicidal. They’re just thoughts and they are false. That’s true for anyone thinking that. I have a mind that needs to heal this brain. And manage it and nurture it and get to know it and love it. I don’t know what can change. What I can change. But I know I’m in a lot better chape since my mind has taken on the job od connecting with my brain and that’s just a step towards connecting all the rest of me that has lived in a great big disconnect for a long long time.

    also..
    Thanks for the reference to the book Give Back Orlando. Downloaded and will start to look it over. I’ve read some helpful books… Executive Brain / Goldberg, The Brain the Heals Itself/ Doidge and Change Your Brain Change Your Life/ Amen. I can’t quite believe all this stuff has been around for years. It’s not like I watch E! all day. But there is that belief that some people have that You have to go through what you go through to learn what you need and you get what you need when you are ready. I don’t know. There’s comfort there I suppose but I have a hard time buying it. It’s just too soon to know.

    Thanks again for sharing your journey as it unfolds.

  14. Wow, reading what you wrote, I’m having a deja vu (and no, it’s not an aura before a seizure ;)

    Rest assured, you are not crazy, and you are not morally deficient. You are a long-term tbi survivor who never got adequate help or information, and now your brain is looking for more attention.

    There is a lot of info out there, but it’s hard to know sometimes if it’s any good, and it can be quite straining to make sense of it all. My first year of putting things together was one long series of “Holy smokes — how could I miss that?!” and “OMG, will I ever be whole again? Or at least moderately functional?!”

    It can be so dismaying and discouraging to know that untold years have been lost not only to injury but to ignorance, as well. I have been having an awful time, lately, thinking about all the years I’ve lost, all the opportunities — like you, perhaps — I’ve deliberately passed on… for reasons I could not fathom at the time.

    It’s true — when we’re younger, we can get away with just shining these things on. But you get to a certain age, and you look around and you KNOW that things might have been quite different for you… tho’ you can’t quite figure out why… and then you find out about tbi, and you’re off to the races. Literally and figuratively.

    Hang in there — it’s quite startling at times to find out these things and realize that 2+2=4, when all along, you thought it was 2.2… or 76. And it can be really depressing to realize just how deluded you have been — actually, no, it’s not delusion — it’s anosognosia — you literally do not/cannot know what is wrong, because the very part of you that figures that out is busted.

    It’s not your fault. It’s not your doing. But the fact that you’re getting your ducks in a row and facing up to this is Fan-friggin’-tastic! I’m serious. It’s an endeavor only a true warrior can undertake. You can be truly proud of yourself for looking at this and learning all you can. It is not for the faint of heart, so take courage and keep looking.

    And never, ever, ever give up.

    Welcome to our world.

    BB

  15. Hi BB
    Thanks for your support. There is so much happening in neuroscience yet in terms of knowing this stuff we really are the pioneers. I’d like to be a more graceful pioneer from here on out.

    Step by step.

  16. mTBI is definately a complex, complicated thing to navigate, but, keep working on rehab, keep researching what may help you, and above all, find doctors who will work WITH you and your goals, and not AGAINST you. If you want to go to college and your doctor says, “why don’t you just stay home,” don’t listen to them. Push your boundaries, live your dreams…make new dendritic connections. ;)

  17. You’ve got that right! It takes tremendous effort, at times, to build different connections in your brain, but it can be done. You just have to keep going, keep working, keep resting, keep pressing on. It’s never easy to be different from other folks, and it’s never easy to have a brain that is connected differently from others. But it can be done.

  18. I am so overwhelmed right now. I think this is just too complicated. I am so confused by a decision I made recently and realized after all is said and done how much I wanted and needed what I turned down. This has really got me spiraling down. What is this thing about not seeing what I want until I’ve passed it up. I know it and then it gets lost and then I make choices from fear and confusion – overload. Even with good advice from loved ones. I first read about this decision making quandary in Goldberg’s book and I thought OMG – that is me – Why can’t this help me change? Can’t I just learn from my mistakes now that I KNOW difficulty learning from my mistakes is one of my tbi troubles?! I really want this intellectual understanding to help me change and I think it should. I guess it’s a step that can appear bigger than it is. I’m tired of just learning more and wanted a chance to just let life heal me a bit. I know I’m supposed to not look back and dwell and reanalyze and fantasize but I’m trying to learn from my mistakes and of course I’m just making myself sick reviewing them. And am I reinforcing negative neural pathways by thinking or speaking of it. I guess I am, so now add that anxiety.

    I can’t even express how tired of this I am or how devastating it feels to not understand myself and throw away a real success, what I need and want again. It floors me like nothing else and I don’t even know how to gain resilience or stop thinking about it. Maybe you know what I am talking about. I haven’t slept for three nights and I could not afford this.

    Pioneering is not a romantic road. it is slogging around in the muck and trying to create survival skills and today – the muck feels like quicksand.

    What do you do with this cycle – struggling with loss you deliberately created – and – having it take over all hope and motivation? I am so lost.

  19. You know what? I do that all the time, too. And I have done it, over and over and over again. I cannot even begin to tell you how many amazing chances I’ve passed up — like the opportunity to purchase a condominium on Walnut Street in downtown Philly, just when they were starting to fix up that part of town… for all of $32,000. Talk about a missed opportunity! I had an “in” with someone in the real estate world there, and what did I do, but pass it up. Crazy? No… TBI. I think.

    I could list a whole bunch of other really limiting choices I’ve made over the years, and I can tell you I have spent a whole lot of time agonizing over them. But you know what? Part of me knew, I think, that I was not up to the task of some of those things. I have always had a tendency to melt down in a very ugly way, when I get overwhelmed… and make awful choices and behave like a freakin’ animal that’s been cornered and/or caged.

    Until about a year ago, I have to honestly say that a lot of the biggest opportunities I’ve passed up could very well have ended pretty badly for me, had I moved on them. The management positions, the promotions, the offers of material wealth and success and property… I have almost always said “No” and held myself back.

    My diagnostic neuropsychologist tells me that I limit myself too much. They say that I sell myself short. But how can I move on things that are beyond me, plain and simple? How can I move on things I want, if I can’t see my way clearly? I have so many problems with intense stress. And I can’t stand the thought of imploding in public.

    So, in a way, I have been protecting myself. And perhaps you have, too.

    I can’t — and won’t — tell you want to think, feel, or do, but maybe you could consider that — until you understand your situation more clearly — you’re just not ready for those things that you feel you want.

    Either that, or you’re not being really honest with yourself and others when you discuss the situation in advance. I do that, too — but I tend to over-estimate my abilities, as well as under-estimate.

    It could be the type of injury you’ve had — were you injured on the left side of your head? Left-sided head trauma can make people uncharacteristically over-cautious, while right-sided head injuries can blind people to their limits. The latter would be me… but then, I also exhibit over-cautiousness, as well.

    Why have one sort of impairment, when you can have two? ;)

  20. When folks whack their heads (or the head gets shaken), you can get injury not only on the side of impact, but on the other side of the brain as it bounces back after colliding with the skull (counter coup). So, it only makes sense that folks with a brain injury predominantly affecting the right hemisphere may also have symptomology associated with injury to the left hemisphere, which may have also taken a hit.

    But, at the end of the day, we all need to figure out what we want to do in life, what matters to us, and one of the things I have found most helpful, make a list of the steps we need to take to get there.

    Breaking even big tasks down into steps, and doing just one little thing per day, for me, was life changing. That way, life is always moving foward. Do a load of laundry one day. The next, pay a bill. The next, pay another bill. When you have just one task, one goal for the day, and you meet it, you will make progress. Plus, over time, it gets easier to add more goals!

    My goal is to get off the internet now and get some sleep. ;)

    Remember the quote: “Your situation may have made you who you are, but you are responsible for who you become.”

    Keep on Keepin’ On! :)

  21. Yes, this is just too much—-aaaaaargh! Like being overly cautious, saying no way too much, but then making snap decisions and locking myself into a course in rather poor judgment and not being unable to allow myself to change gears, even sometimes witnessing the whole thing thinking, ‘this is not what I want’. Oh Buddha, help me find the middle way.

    My injury was left frontal/temporal and – parietal of course. – interesting about the cautious bit. Procrastination, fear, indecision = overly cautious.

    I have to say that the deep pain of these missed chances is because each time I did not listen to my soul. There seems to be a big disconnect between mind and heart and intuition. I used to do a lot of yoga and it was a good thing; trying to get back into that regularly for just this connection of mind, body, spirit, heart. Maybe that was a time I did some tbi healing unknowingly.

    (I’m paraphrasing E. Goldberg’s The Executive Brain here below. This explanation was a godsend to me in helping me see I am a tbi survivor, not … uh, insane.)

    * adaptive, actor-centered decisions answer – what is good for me?
    * veridical decisions answer – what is true here?

    Anyway, it is just this thing of actor-centered decision making (interpreting ambiguous choices) that happens in the pre-frontal cortex that messes me UP!! Dealing with inherent ambiguity is a primary function of the frontal lobes. Once you’re out of school, life decisions are mostly this. So simply as he states, do you want to wear the blue, brown or green jacket. Which do you like best?. but to make things easier we apply some disambiguous questions to make the choice that change per circumstance. We make it into a veridical query So it’s cold outside; which is the warmest? Easy, the blue.

    ‘An inability to reduce ambiguity leads to vacillating, uncertain, inconsistent behavior ……. whether you are decisive or wishy-washy depends on how well your frontal lobes work.’ Welcome to a day in the life….. We with frontal lobe damage approach ambiguous decisions differently, but this is one of those areas very hard to test and he says, is often mistakenly treated as depression.

    Here’s what I understand but may be a bit off. Once the ambiguous decision is done, the judgment of did I choose right or wrong, worked out well or not, if one is prone to look back and evaluate is veridical. So for me – I enter a virtual fogbank, decide, and look back and all fog has cleared and I am standing there aghast, at least in these situations that I grieve over. And there is a frontal lobe loop that plays out…Decide, evaluate, regret, look back over the options as if they are available, evaluate what else I could have done, regret what I did do….Seriously, I find myself in loops of redecorating a house that I felt heartbroken over selling when I really didn’t want to but partner – we broke up months after – did. This is 10, 15 years after the house was sold. Or planning a party at a house I didn’t take, but intuition and trusted loved ones advice said do – current addictively running loop – not the party but the house.

    This bores and frustrates everyone in my life – I understand. I have looked back and vowed I will not do this again. It drains everything drop of hope out of me to see it happen again.

    I know this is a human experience and I don’t mean to dishonor that we all see 20/20 in hindsight at times and we all make turns we wish we hadn’t but seriously they have no idea. I’m lving in my folks’ basement. God bless them. Home – and career – and relationship – and purpose are not things I have established well and this frustrates and eats at me daily.

    Here is my heartbreak. I have often, even knowingly or with nagging red flags and agitation not chosen what is good for me. Then to have the other part of the brain task take over analysis of that decision with clarity – things look quite different. My soul’s desire, my best action, what I wanted or needed is there staring me in the face, the hand I threw away… and in these particular situations, that hang on me, I have a hard time not hanging onto. And hanging onto them does not help my next decision at all. (not learning from our mistakes) People tell me,I’m too hard on myself (true) or well, you just regret everything so either way you’ll regret it. But it’s not just rote regret. It is the times my soul got buried under tbi confusion/craziness. And i long to be true to and one with my soul and give myself experiences that nourish and strengthen me and being joy rather than trails of trauma.

    Drama! Well, perhaps it sounds that way, but the shift in my vision before, during and after some emotionally based decisions is pretty damned dramatic. Really, I want and need to bring a solid, consistent dose of comedy on the scene and it has been a missing element.

    Ha Ha Ha…….Onward ho!

  22. Well, that sounds familiar… That fogbank, followed by total clarity later… and realizing that (yet again) you’ve made a decision that sent you in a direction you did not want… I’m in that situation, now. I chose to get into this job that part of me suspected might be too much for me — too much pressure, too much stress, too little support and security… and it’s taking its toll. Big-time. At least I was able to get back to sleep this a.m. when I woke up at 3:00. I had a pretty strong hunch that things could go south, but then, that can happen at any job. And now I’m playing catch-up. Again.

    Well, it can go either way. At least I have Plan B: Keeping my resume fresh and out in the world, and answering every phone call I get from recruiters, just in case.

    I think with us TBI folks, one of the biggest problems can be with emotion getting hold of us. Have you checked out Give Back Orlando’s material? They talk not just about the problems we have, but how we can fix them. That’s huge. And I’ve been using their material with some good success. I’ve only gotten through the first several chapters of the book, but the tips and tricks I’ve used have really helped to keep me centered and aware of what’s going on around me.

    If I were you, I would make a point of writing everything down — especially pros and cons of every decision. It can help to talk to people, but I know that I get totally turned around with just talking… that sends me into a fogbank quicker than anything. But keeping notes and writing down what goes on with me each day, really helps me see where I’m at, where I’m falling down, and how I can improve.

    Good luck

    BB

  23. Amen to that — my lists of things to do end up really, really long, because I have to break them down into a million tiny little pieces that don’t freak me out. Nothing sets me back quicker than a big task that hasn’t been divided into little bite-size pieces.

    Doing one thing a day, and actually getting it done, can be very gratifying.

  24. I did just print out Give Back Orlando and looked through it. There is a wealth of info there so I just sort of took it all in and will go back and start through with greater attention.

    I really need to see when my emotions are getting the upper hand. That’s the fog bank often. I think he talks about this – that at that point it is paramount for tbi to stop all consideration and get centered, calmed, etc. before the brain can function well enough to problem solve successfully.

    Yes, writing everything down is a good point and as I have been looking back over this last event I know it would have been helpful and can’t believe I forgot and just kept spinning further and further in my head. How do I forget this? I’m so bummed when it is a simple refocus, simple step that could make all the difference and I don’t just – do – it.

    Also I would do well after talking to write down the things people say that ring true for me too. Or just their points because in the moment I don’t think I am processing fast enough to really evaluate it or respond. I get to where I passively just receive various commentary and overload. Then I do as you mentioned too where I am sharing a different 70% of my thoughts with different people. This has to be tbi because part of it is having my own realizations or responses that I just never think to get out on the table and later those are some of the nagging voices that nobody knew about and they may have been the key. Write it down, out of my head! Thanks for the reminder.

    I hear how you primarily push forward and for myself, I pull back. What I keep meaning to do too is write down in a book all these reminders about decisions, just questions to ask myself or reminders – like if I’m feeling fearful and not up to this could this be that overly cautious brain overworking. Maybe that is a step I could do today. I know for me my mind thinks – one task oh come on, and then I get overwhelmed and get nothing done. I can write down the clarity about what will help my decision process and then edit it down to primary points over a couple days. I know when I feel like I’ve just screwed one up – what’s the point. That’s not helpful.

    I didn’t know how crucial these steps are for me because I didn’t know my tbi was ‘real’. And if there is one thing these experiences are telling me it is that yes this is very real. I do believe I can accomplish and achieve goals of a much larger meaning. And for now, acknowledging how much the tbi is wreaking havoc and interfering and understanding and enacting steps that I can integrate to stabilize is paramount.

  25. Finding your site just brought tears to my eyes (though, admittedly, I have little control over tears anymore – it’s one of my sequellae). How nice to find others who know exactly what it all is. I have not yet read all of the comments, but I will.

    It will be 4 years for me this September 12. (I was kicked in the head by a horse, then rear-ended 10 days later, which compounded things.) About a year ago, I came to the place where I really began questioning the line between “giving up” and “accepting my new reality.” There are some things that I feel I have to accept or I will go crazy fighting. Do any of you feel this way? How do you draw the line? Or do you?

    Last month, I left my career as a veterinarian. Call it giving up, call it accepting that it’s no longer my calling. I was miserable. I used to love it, but I haven’t loved it since I came back. It felt really good to finally admit that. I don’t know what I’m going to do. I’m trying to be a photographer, but meanwhile, I have bills to pay.

    I’m so sad that this happens to others, but I’m so beyond glad to see people writing and sharing about it. The most empathetic of friends and family really can’t understand. That gets lonely.

    Thank you thank you.

    I have some reading to do!

  26. Dancer -

    Glad you found your way here. It really is a whole different world out/in here. Lots of us have experienced the same sorts of ups and downs, so I hope you can find some commonality and sense of connection here.

    Best
    BB

  27. In March of 2008, the elevator doors in my work building slammed on my head causing me to fall forward into the elevator against the wall. I did not lose consciousness but was dazed. I went to emergency room that night and MRI, etc. came out negative. I am now suffering extreme cognitive damage. (Example: dizziness, nausea, vomiting, drooling, intense headaches – when I took pride in not suffering from headaches all my life – falling from being off balance, lack of sleep, heart palps (after having 2 heart attacks in 2004) which is caused by so much stress on my heart having to overcompensate for my lack of awareness), paranoia (when I have always be the boldest, unafraid person) – losing thoughts in the middle of a conversation, trouble finding the correct word to describe something (having to use 6 different words to equal the one word), depression, dangerously traveling to work on 2 trains in NY, lockjaw, grinding my root canals out of my mouth, declining vision, loss of hearing or intensity of hearing, and being in a constant state of shock like a deer in headlights. I feel as if this is getting worse and am having difficulty in my performance at work but cannot be unemployed and feel as if I am either going to step off a curb in Manhattan and be killed or have a massive heart attack as a result of the state of mind I am in. I am 55, have worked as a legal assistant, trial coordinator, etc. for 37 years and I have struggled to build myself up, with the brain injury, I cannot be safe to work. Being 55, my life is now ON HOLD and getting older will only put more wear and tear on my body, but CANNOT work with the meds and the effects of this injury. This has affected my life and I cannot see any way out. A neuropsych says: “Oh, I think you have a good prognosis – you have to be positive.” She doesn’t live with me and see my struggles. It is easy for her to say. When I die by lack of wherewithall, what will she say then? She blames it on stress … how dare she. I am entitled to have an active life caring for a 104 yr. old grandmother and did not deserve this to ruin my life. I just wore a portable EEG this weekend and have not gotten results yet. I have lost my will to live and only survive for my grandmother. Am a single mother and my son is now grown and distraught over my condition. I was a very intelligent happy person, now am broken. However, the one thing that has not been taken from me is my empathy and kindness to others because THAT IS ME FROM WITHIN. But I am dying inside. I’ve struggled all my life just to end up this way. I cannot survive the constant fear inside from my nerves being on HIGH ALERT and MY FACE HURTS from being in a constant “state of surprise” with eyebrows raised or frowning. It hurts. – The emotional I can deal with but not the physical. I wonder if I will ever get better and am so angry at the neuropsych and cannot be honest and say I am not scared to die because they would put me in the hospital. I’m tired of being brushed off and chucking it off to stress. I do have a lawsuit and am so tired to fight. It took me a long time to write this. I really haven’t the foggiest idea of what my comment means. I guess I just had to get it out. I don’t know if I will get better. I am positive but this has taken me over.

  28. NM –

    What a rough patch… It sounds like you really have your hands full. For the constant high alert, I strongly recommend Belleruth Naparstek’s “Healing Trauma” guided imagery CD — it has helped me a great deal. Also, “Stress Hardiness Optimization”. You can download them or buy a CDs at healthjourneys.com, or Amazon. You have a lot going on with you, so I have responded privately to you, but things can get better. You just need to get some proper help. Your local Brain Injury Association may be a good place to start.

    Good luck and be well
    BB

  29. Brain injuries improve. It takes time. Find a doctor who cares, try a physical medicine and rehab doctor (physiatrist) and/or a neurologist. Once you find one who is willing to work with YOU, keep them! We all need someone who will work with us to help us to get where we want to be in life. Beware the average psychiatrist, thought. Psychotrophic medications are a HUGE help with some aspects of TBI, however, you need someone who doses out any meds with care. I hear that a lot of folks with stroke and TBI may have more problems with stuff affecting their balance, ability to think clearly, mood, etc. Keep a journal, take notes. Be honest with your doctors. Life GETS BETTER. Focus on the things you can do, and seek out help for the ones that are a challenge at this time. Go for Cognitive Remediation Therapy.

  30. Hello,

    Today i was introduced to your blog.

    Thank you very much for creating this. I had a “mild” TBI on 5/19/1999 and was enrolled in a non-elective, no drops permitted course: “mild” TBI: A Course in Patience and Humility (Tom is a Slow Learner, but Reality is a Persistent Teacher)”.

    Your comments about using a schedule, planning ahead, managing your energy account certainly mirror my experiences.

    I’m not very experienced with computers but have started a “LinkedIn” group: BI-IFEA (Brain Injury-Ideas for Education and Advocacy) to help person affected by or interested in TBI to exchange resources, ideas, questions, etc. It is an open group with 149 persons from 39 states and 3 foreign countries.

    http://www.linkedin.com/groups?home=&gid=1965006&trk=anet_ug_hm

    Could you look at it, and let me know if you would be willing to list your blog as a resource? Please consider joining and offer comments or suggestions.

    Thank you again for your blog,

    Tom

  31. Hi Tom -

    Thank you for writing. And congratulations on your LinkedIn group. It is so very important to get the word out about mild TBI and how we can successfully recover from it — and we CAN!

    I would be pleased to be included as a resource on your group. I will not be able to join your group, however, because I need to maintain my anonymity for professional reasons, and LinkedIn was created for the opposite of anonymity.

    You may wish to consider the confidentiality piece of this TBI puzzle, and consider creating a group where folks can participate anonymously. Mild TBI is very widespread, but it’s also very misunderstood, and if people “go public” about their injuries, it can impact their professional prospects, and their long-term prospects. It complicates matters for those of us who are “high-functioning” or who sustained injuries in the midst of high-stakes careers.

    I have direct experience with someone who publicly posted information about their brain injury at the time when they were looking for a job, and they could not find work, because people Googled them and learned they had had a TBI.

    Just some food for thought.

    But if you would like to include my blog as a resource in your LinkedIn group, by all means, feel free to do so.

    Thanks for your work, and best of luck with your group!

    BB

  32. Yes. I had a brain injury. Funny story. 2 years ago I was experiencing some psychiatric side effects from a new drug my pain doc put me on for nerve pain. Not unpleasant, somewhat stimulating and heavily ‘memory’ and ‘music’ oriented. Very hippocampal. 70′s music wafted through my mind insistantly for several days before I suddenly (POW!) recalled a very significant head injury from 30 years prior.

    My piss-poor memory for the latter part of the 70′s (no jokes) and the corresponding gaps and ‘islands’ of memories that made little sense, the lack of chronological coherance, the personality changes all gelled into the epiphany of my lifetime.

    Chateaubriand said “Whenever a true thought has entered our mind, it gives a light which makes us see a crowd of other objects which we have never percieved before.”

    No shit.

    In the 70′s I turned from a self-conscious, dependent, fearful, shy, reticent young adult who just wanted to be liked and belong into this angry, self-centered loner with a chip on my shoulder and a screw-you attitude. I’ve spent the major part of my life thinking I just made that personal life style choice logically and deliberately.

    Wow. How could I not know? How could I change so much and never question the origin of this queer metamorphosis.

    The memory of that impact now resonates in my mind. I can hear the crunch of metal and the heavy thwack of skull against metal. I can see an explosion of light radiating from the left side of my head. I sense a gap in time between impact and awareness. It’s back and I didn’t even know it was gone.

    I’ve spent 2 years seeing a psychiatrist since. No Dr I have ever discussed it with seems very impressed with my experience. My GP even asked me ‘So?’. My shrink just throws new drugs at me which I try and then reject.

    Having had no chance to deal with this car accident in 1976, I spent the better part of a year overcoming what I can only describe as delayed PTSD. I’ve hyperventilated at T-intersections, fearful of that imaginary and invisible car with no headlights speeding toward me from my left.

    I’m now adjusted and car-driving-friendly or at least as assertive or aggressive as the next driver. No thanks to anyone but myself. I did it. I recovered. I dealt.

    I recently had my Jeep totaled around me without significant injury and it didn’t plunge me into any major freak-out, though I did hold out for purchasing a BIG vehicle afterward. Every compact car I looked at made my heart race.

    I’m investigating every aspect of my injury in 1976 and the aftermath of the acute and lingering effects that were probably at their worst up until 1980-ish. I read and read and search for clues. Obsessed. I challenge anyone not to be obsessed once you realize you’re not who you think you are.

    I have problems but I have to believe it was all for the best because that’s my life script. Maybe things would have been worse if it hadn’t happened, if I hadn’t changed. Other people have a hard time recognising the changes because what’s the obvious difference between a shy, tongue-tied gal and a disinterested, silently hostile one?

    Thanks for your blog and all the comments and information here. Keep up the good work and good faith.

  33. Thanks for writing -

    What a classic story. I hear it again and again… all of a sudden, you remember the event, and suddenly everything over the years makes sense. Except that in a certain way, it doesn’t — it’s like waking up and realizing that you’ve been living someone else’s life for years. Encouraging and maddening all at the same time.

    I hear you about the obsession piece. I tend to be like that, too. Trying to look back and see what was really going on… trying to remember how it was, to explain the things that made no sense, and you didn’t even realize didn’t make sense. Only someone who is in this situation can understand the urgency, and I certainly do.

    Life script… yeah, I share that outlook. It certainly hasn’t been easy, but it’s just been how it was. And it’s up to me to see what can be done with it.

    Thanks again

    BB

  34. Just saying hi. I’ve had a bad week, with my “concussion-head” symptoms coming back strong for some reason. Probably because of a bad cold I got, and some life stress.

    Anyway, I found this blog googled around and it’s been reassuring reading the posts.

    My story is as follows… I was in graduate school for Chemistry when I had a bad bike wreck… flying over the handle bars and smacking my head into an SUV. Had a light headache for about a year and a 1/2. I dropped out of the program with a Masters, which isn’t too bad I suppose. Fell into a depression that lasted for years though, unfortunately. I had it pretty bad for 2 or 3 years, where I’d have symptoms almost every afternoon, though things did get better and better. Now, my “Concussion-head” symptoms still come and go, though I do really well for the most part. It will get worse at times and better at times (sometimes almost disappearing altogether).

    Anyway, isn’t the internet incredible? I received the same sort of doubt and suspicion as everyone else here. Well, when you have this many people reporting subjective experiences all this similar, I don’t think they can be doubted anymore.

    I also had a life full of small concussions here and there, and one or two more serious ones. Something I never even thought about before, because I always seemed to bounce back completely. This last one was totally different though, and now I’m thinking the others probably were more serious than I thought.

    There is a book I’ve found really helpful in dealing with depression, so I thought I’d pass it along. It’s not about concussions, but more a general tactic for dealing with lifes ups and downs. It’s quick and easy to read too, and I go back to it now and then. It’s called The Happiness Trap, and you can find it on Amazon.

    Good luck to everyone.

  35. Thanks for writing and checking in. It’s pretty wild, how similar all our experiences are, even though “every brain is (supposed to be) different.” The thing that doesn’t change, is that we’re human and we share the same hopes and fears as the next person. That’s one thing science has yet to account for ;)

    Yeah, prior concussions… Even if they didn’t seem to be that serious in the past, they could have set the stage for future issues. It’s my understanding that a number of subconcussive impacts can have a cumulative effect that only really shows up when you get a REAL ding, later on.

    Ain’t TBI grand? :}

    Anyway, thanks for checking in. I wonder sometimes what the world might be like, if all of us who suffered concussions at a key point in our lives had been able to bounce back without going down that dark hole of post-concussive syndrome/tbi after-effects.

    But I guess that’s yet another mystery of life.

    Be well

    BB

  36. Glad I got the ‘update’ … Here’s a little something I came across that might be some help: http://www.lumosity.com/

    Hang in there and Remember to Speak those things that are Not As IF They ARE … Use the Power Of Your Faith And Spoken Word, Speak What You Want…Not ‘appearances’. What we Focus on Expands…. Keep Seeing & Saying More Connections…ReStored Connections. I’m getting Better at Remembering Things…There is Less ringing in my ears today And it is quieter.

    I am … @ Your Service

    Holler if there’s Anything you require or desire

    Warmest Regards

    Jim Zaccaria

  37. My psychiatrist of two years (never seen one before) decided within my first visit that I was bipolar. I do wonder if I was bipolar or destined to be before the accident.
    That was 30 years ago. I guess I didn’t handle things the way I do now. I was just 20 years old when it happened. I don’t recall much until I was about 23-24. What I do remember is all jumbled up- zero chronology.
    I question the diagnosis of bipolar. Had some real crappy reactions to most of the drugs he’s tried me on. Trileptal put me in the ER one night
    I don’t think he takes my head injury into consideration even though that’s originally what I went to him for. My mind was blown by recovering the memory of the accident.
    I’ve tried since the first day to address the TBI issue but we’ve never discussed it in two years. Seems like the only thing he ever addresses is whether my medication is working. Like I can tell.
    I guess “talking therapy” is out of vogue now and it’s all drugs.
    I think I’ll quit him. It is a luxury I can’t justify.

  38. I’m not a doctor, and I’m not qualified to give you advice, but personally, I support that decision. Drugs for someone with a history of brain injury — without taking the TBI into consideration and VERY CAREFULLY monitoring the drugs — can be quite dangerous, from what I’m told.

    I’m not a fan of talk therapy — it drove me crazy, after a while. The first shrink I was seeing never took my TBIs into consideration (they admitted they’d had some TBIs of their own and never explored that, themselves! and I think it really clouded their perception). The second shrink I went to pigeonholed me in the “brain-damaged” category and commenced to tell me how luck I was to be functional — when I was once far more than that.

    TBI in itself is a challenge. It brings with it all sorts of wrinkles, and from what I hear, shrinks are quite fond of labeling us bipolar. Good god.

    If you can find someone to talk with who understands TBI and can help you “get your head around” your issues, I’m guessing that’ll do you a whole lot more good than the Trileptal — or any of the other concoctions he’s got you on.

    I’m too tired right now to be very polite, so I’ll leave it at that.

    Good luck

  39. I understand the issues you are discussing. I have been dealing with what is described in this forum for some time and they are exactly what is happening to me and how I feel. I have gone the shrink route as well. Medication masks things but does not help the root of the problem, I won’t take them anymore. The difficulty with cognition, memory, situational awareness, and emotional swings are extremely painful and embarrassing; obviously this is an understatement. I have basically become a recluse. PTSD and TBI are soul destroyers. It is hard to be challenged and more difficult when you realize there is a problem and can’t fix it. I commend the spouses and family who have stuck by those in their life with these issues. It is traumatic for all, not only the afflicted. I hear some of you professing hope? Some days are diamonds.

  40. I understand your reclusiveness. I’m a bit of a hermit, myself. Only recently have I started venturing out into the world again without someone with me to “watch my back”. It’s been a long time coming. But I’m glad it’s here (for however long).

    I do believe in hope. I’ve seen a lot of surprises. You never know…

  41. Hi

    I’ve been looking at your site for a few weeks now. I do have a history of brain injury, although in my case it was different. There are probably also cultural differences – I am in the UK. I was seven years old when I had the misfortune of being hit by a car. I was knocked out.

    I regained consciousness several weeks later, and faced the challenge of recovering. I did relearn to walk – sort of, and then it was of to a more local hospital to continue recovering. I started to talk again at some point. Then having been re taught the basics of walking and talking I was sent home. I couldn’t use my hands, and never did get any help in relearning to use my hands. It was down to my parents, particularly my Mum, and later my teachers, to teach me how to use my hands and eat, dress myself, wash, write, etc. I had a tremor in my right hand which persists to this day. Apart from seeing a paediatrician a couple of times a year, some physiotherapy (not on my hand, mind you) and speech therapy I had no rehabilitation or assessment. No long term follow up, no assessment by a neuro psychologist.

    Apart from the tremor, I had very little motor co-ordination, a poor sense of balance, and a slurred voice. You can imagine how the kids treated me. My parents, perhaps the teachers too, seemed to have a fantasy view of things in which I’d bee helped and nurtured by the other children. Fantasy was all it was though. I seemed to encounter hostility, I got shouted at, spat at and punched when I couldn’t keep up or dropped the ball. I got labelled a loner as I never went to parties or people’s houses. To be honest I didn’t understand why.

    Then on to secondary school. Guess what, it got worse. Still no friends to work with, invite my over, and no parties to go to. My school work was not as good as it should have been. I had attention problems (still do), memory problems, trouble with organising things and getting things started. When some routine testing showed that I was more intelligent than average, I got sent to the special needs (what a terrible phrase) teacher and tested for dyslexia. They never made the connection with my injury. I took longer to learn things, and was labelled as stupid as well as clumsy. I dreaded sports because everytime the class lined up and teams were picked. Never me though, I was always the one left at the end.

    I survived school and moved on to less structured education, I struggled even more without the structure, and still had my problems. I watched everyone else having friends, and parties, a great time. Not me though. I still felt unwanted. Then it was off to University. I did pass, sort off, in the end, by my problems didn’t help. I felt like I wasn’t a proper person as I had virtually no social, things took me longer and I felt like I was bad at everything.

    Since then, I failed at my lifelong ambition (sorry, I’m not going to say what it is), then failed at something very similar. I’ve salvaged something from that, my failed in other ways. My work history is very sketchy, which doesn’t help. By the biggest area of failure is my social life, which doesn’t really exist. I’ve recently been accused of lack self confidence (can’t imagine why) and in the last few months I’ve realised some of this is due to my memory and executive problems, and things like having to ask to hear instructions again, or watching others before doing something, and being a bit slow at learning.

    Your list of symptoms seems very familiar. For me, the major issue is acceptance. I’ve never really felt accepted, and I have never been wanted – as a friend, colleague, lover, or whatever. It doesn’t help that I don’t have anyone I can talk to about it. I would do anything to be a proper person.

    Arrrghhhh!!

  42. Welcome -

    If it’s any consolation, I can really relate to a lot of stuff you wrote. Especially the pieces about school. I was treated TERRIBLY in school, and I could never figure out why kids hated me. Of course, I hated a lot of them, too, and I was pretty scared of the rest of them. I had trouble hearing and understanding, especially when my family moved to a different area where people had a very thick accent I didn’t follow well. I spent many years feeling deficient and alienated and angry about so much. It didn’t help that nobody understood about my history of head injury.

    As for your current situation, I had an idea — have you considered traveling at all? Maybe going overseas and teaching English in a different culture? You can take English as a Second Language courses that will qualify you, and I don’t think it’s that expensive.

    I suggest this because some of the best and most relaxing times of my life were spent abroad, where people didn’t have any preconceived notions of how I should behave, and they didn’t judge me. They just figured I was a “stupid American” so I couldn’t help myself. On the other hand, a lot of folks didn’t judge me but accepted me, and they didn’t jump to conclusions about me being damaged or deficient because of my odd behavior.

    Plus, if you’re working with teaching other folks something they don’t know, you’re always going to know more than they do, and that gives you a less subordinate position to them.

    Sorry to hear about your ambition not working out (yet). Who knows — it just may, yet.

    Again, back to the overseas job idea. If you’re in the UK, you’re an EU citizen, which means you can work pretty much anywhere in Europe, as I understand it. Maybe you need some time away… and if you’re working, you can be earning a living and have structured interactions with people different from you. That might help socially.

    Personally, in your shoes, if I were unattached and free to move about, I’d do it. I’d take the teacher class and head for the farthest reaches of the EU and find out what else live has to offer.

    What have you got to lose? Seems like the UK hasn’t worked out well for you — go have an adventure!

    Best of luck and I do hope you stay in touch.

    BB

  43. BB

    Thanks.

    I think the idea of teaching English abraod is not really an option for me, for all sorts of reasons (like being bad with langauges and having trouble coping with change). Interesting idea though.

    My ambition is something I can’t really say too much about, I’ll just say I expected to spend a large part of my adult life in uniform. I still do, sometimes, and if nothing else it did give me something to aim for, and did provide some focus. It also caused some career disruption, but I expected things to go to plan! Doh!

    Recently somebody has tried to label me as disabled. I don’t think a label would help. My physical and cognitive problems (only learnt about some of them recently) problems are just impairments – they make it harder to do things, but I can do them – most of them time.

    The social problems are the disabling ones. I’ve recently learnt to drive, which should help. I guess it’s a case of finding the right people, and rebuilding the foundations. I know I can be funny – the name “Broken” was a nickname I acquired at work a couple of years ago for having an odd sense of humour.

    How many of my problems are real, and how many due to perceptions – including mine? Perhaps this is an issue for all of us with TBIs?

  44. Broken -

    Well, couldn’t you find something else you can do abroad? I’m serious about this — when I moved to Europe in the 1980s, I found the experience of being out of my own country hugely freeing. Maybe you could just backpack or take public transit around? Move at your own pace. Be out of your usual surroundings (which don’t sound that great, if people are trying to convince you you’re disabled).

    Seriously, tons of people who are genuinely not-smart do bold things everyday. Having a TBI doesn’t make us less smart. It makes being smart more complicated that normal. Doesn’t mean you can’t do it. You just have to be more deliberate about everything.

    In any case, I think you’d be well-served by setting some goals for yourself and achieving them — start small and work your way up. That’s how the pros do it — everybody has to start somewhere, and you never know how far you can go.

    But you’ll never find out, if you don’t try.

  45. Thanks for checking my blog out. Blogging is a whole new world to me! I’m still getting it all figured out. :) I would like to hear more about your story and your road to recovery sometime. Feel free to drop me an e-mail anytime. I have it posted on my blog. It’s really amazing how God uses our experiences to mold us into who and what we are suppose to be!

    Blessings,
    Heather

  46. One of the worst effects is emotional lability – I didn’t know about this until a few months ago, having grown up thinking that I was a wimp, with a bad temper who laughs at anything. Combined with being eaily confused, it makes mole hills into mountains.

    Recently I had a slight problem with a female friend/colleague where she said something to me, and I got confused and over reacted. Quite embarrassing really, I had write to her apolegising and explaining that I get confused and upset easily. Doh!

    But she and I are alright now. She’s said it’s all “water under the bridge”. Phew!

  47. Oh, I know, Broken – the volatility is crazy-making at times. When I get carried away, I am SO convinced that I am 100% right and everyone else has it in for me. Then I catch up on my sleep or I get a different perspective, or the whole flare of white-hot rage suddenly subsides, and I’m left feeling like an idiot afterwards.

    I find it helpful to remind myself — if I can — that chances are, I’m completely wrong about what’s boiling up inside me. I’ve been wrong so many times before. Sometimes that helps me stop the outbursts before they start. But even with my best plans, I can get carried away.

    Thank heaven for people who can let go of the things we say and do.

    Cheers
    BB

  48. Oh, I know – I consider it a vice – one of my very few, fortunately. But there’s nothing like a plate of spaghetti and meatballs with a good meat sauce with a big salad on the side to take the edge off a really rough week. As in most things, balance is good.

  49. I just discovered this website. At least I think this is the first time. Could be I have seen it before, a few months ago, a few years. Don’t know for sure.
    fact is that I am here because I am more confused and ANGRY than I think I have ever been since I have had to change to the person with a Brain Injry.I sort of understand why professionals will call this a “mild” TBI but if I could find a word better than traumatic I would be using it.
    Some history: I fell July 4th, 2004, my own personal stars and stripes even though I am a born and raised Canadian. I lost a from seconds to a couple minutes of conciousness, don’t know for sure as the only one present was my then 6 year old grandson.
    I went to my GP as soon as possible, which was the next day because I was babysitting my granson and my daughter couldn’t (wouldn’t) come home from work so I could go to the ER I went the next day and, of course, my diagnosis was post concussion syndrome. I don’t know how many times I went to my doctor, walk in clinics, the emergency room over that summer, except to say that no professional thought it was serious.
    One of my main sources of anger is, and I seriously doubt this particular portion of my anger will ever go away, is 9 days after I fell I went to a local walk-in clinic. My head hurt so much and the sunlight was almost blinding to my eyes. After giving him my history and him giving me an assessment he told me to immediately to to the ER to get a CT, that he would fax the requisition up. I was more than happy to do so.
    This is the part I don’t think I will ever understand. The attending doctor at the ER gave me the brief once over for th e abreviated testing that is given for head injuries and, literally sneered at me, his lip actually curled, and told me I didn’t need a CT.
    I left the hospital in terars and to this day I do not understand, in fact I didn’t believe doctors were allowed, todeny defy another doctors orders.
    By the middle of August I started experienceing other symptoms. Falling down, limping, etc. Sadly funnyll, when I told a the doctors about the limp, which was constant, and they ask you to walk across the room, you don’t limp. I am guessing now that it is because walking is an automatic function of one part of the brain and, while walking on a concious level the limp is gone. I would have thought that doctors would know this. I fell up and down stairs (fortunately there was only a short staircase with 4 steps where I lived then), I fell on my dog, on my grandson, and, for humor sake because by this time I thought everything was funny, I fell off the toilet.
    Finally, 65 days after my fall I got a CT scan. By this time I was in a “so what, big deal, ha ha ha” type mode. My friend that took me said one side of my face was sagging.
    Within minutes of the CT I suddenly became to biggest emergency ever. For me it was “still funny”. I guess I called some people I knew on the drive to the Kelowna hostpital from the Penticton hospital. The only one I remember is calling my brother in Cranbrook and telling him I was on my way for brain surgery. While he was kinda struck dumb I said not to worry, as long as it isn’t granny Clampett at the other end to perform the operation. (Dating myself there)
    By the time we got to the hospital my left side didn’t work at all, I was dragging my left leg. That is when I did my own small experiment “left legg up, left leg down”.
    I remember hearing that I had both a massive chronic subdural hematoma and an acute subdural hematoma. One of the reports said that during the surgery blood spewed out of my head. Nice picture huh?
    I was released from the hospital, finally with out a headache, but with nothin in terms of information about what was to come.
    I have about 2 years without much memory of them. I did acquire a criminal record with one year propation cos my I spotted what had been my truck. which is a whole other story. Short form, he left 3 weeks after me surgery

    Before my fall i had spent several years of family caregiving and in total 7 people in my family died. Also I had a truly crappy marriage which I did not realize then, I just figured it was all my fault. In total 6 deaths from Nov 89 to Sept 96. After that I spent from the last death of my step brother caring for my stepmom (stepmom since I was 3, I am now 54) who went totally downhill after my step brother died. Mom passed away July 2003. During this time I a long up and down period of depression. I say it was situational issues of which I never had a chance to get over one before another death happened.
    After mom passed away I committed myself to myself. I felt better than I had in years, which I know sounds bad but I am hoping you get it. I had been studying for a degree in Social Work prior to my moms death, then I started working about 24 hours a week, babysitting 4 evenings and nights while my daughter worked and life was so great. I had even acquired a new job in a different town which was suppose to start Sept 21, 2004.
    So jumping ahead I managed in my stupor to find a medical malpractice lawyer who took my case against the ER doctor ahat denied my CT. Two years after that she started providing me with the rehab that I had desperately needed for years. After doing better than I had thought was possible, about a year later, I felt that the rehab and lawyer team were pushing me for more than I could handle. They would want me to add something more to my program but couldn not understand why I found it impossible to maintain what I had accomplished if they kept adding more.
    So I became the uncoperative legal client and rehab client. A few weeks ago my lawyer wanted to make an offer to Dr. Mings defense lawyer which was an insult and extremely hurting. It didnèt cover for the future the care I was already receiving, no wage loss, nothing. I freaked. People wouldnèt let me have the time out that I knew I needed and kept coming at me with do this, do that I fianlly ended up in an absolute rage, tossed a lot of furniture around and called an ambulance for myself.I went home a few hours leter because the mental health nurse kept telling me I was just depressed and that there was a probable possibility that some of it was because I am post menopause. The nurse admitted to knowing next to nothing about brain injuries so agin I am stuck with a depression label. I have not been depressed in years. Just really really really angry. I thought I had dealth with it pretty well but all my coping skills, every thing I had learned and accomplished, my future life were all thrown back in my face and been made to be worth nothing. And all this time Dr. Ming has probably not lost a single night of sleep because he has professional protection at every turn. The canadian Medical Protective Association pays for all his legal defense, 83% of malpractice premiums are paid by the government from tax dollars, etc, etc. No one ever knows how my life was turned inside out and he continues to practice medicine somewhere, I have no idea where, and he can continue to screw around with peoples lives with no need of consequences or responsibility.
    My anger is so close to the surface, it is rage and it not only scares me, it embarrasses me. I have never been that person. I am holed up in my house again after all this time of working to give myself some type of life, and now lawyers have taken the future I planned on having with the financial means to back it up. I have no idea what to do. And it is ANGER, not depressio. Have any of you heard of the term pseusodepression. It is all symptoms of depression without feeling depressed and can occur from frontal lobe damage in a TBI. Feeling like I am treading water and still going under

  50. Hi Maureen -

    Well, that is quite a saga you’ve got there. I’m sorry it has been such a long, hard slog. Sadly, a lot of us go through this kind of thing. The worst thing is needing help, but being the only person who understands that you do need help — and you can’t quite communicate it or others just don’t get it.

    That really sucks about the medical system. I’m sorry it’s bad in Canada, too. All the time, people in the States hold up Canada as a shining example of how things should be done with healthcare, but I’m not sure that’s always true.

    I’m not quite sure what to offer you here, other than sympathy and encouragement to keep going. It is lonely, and it is hard. Have you looked for a neuropsychologist? They can be helpful. Also, brain injury association chapters can be very helpful. It sounds like you need to connect with people who understand your situation — and not lawyers. I’m afraid I have never had good experiences with lawyers, and there’s never any guarantee that they will deliver what they promise.

    The anger is totally understandable — to me, at least. And it may be understandable to brain injury association people, too. I’ll tell you want my friends in recovery from addiction tell me — “Anger is a luxury I can’t afford.” With TBI, many of our emotions can seem absolutely justified, but letting our emotions run away with us — even if it’s for good reason — can wreak havoc with the chemistry in our brains and make them work even worse than they already do.

    Personally, I think it’s amazing that you’re alive. With the injury you had and the hematoma(s), it’s a wonder you’re able to write the things you did. That’s something to be very grateful for. Another trick my friends in recovery taught me is spending time each day to write down 10 unique things I’m grateful for. I never thought I could do it after two days, but every day, I managed to find 10 more different things I was grateful for.

    Now, as bad as things are, and as bad as things my seem like they’re going to be, it’s important to take care of yourself. You’ve got to let go of the stuff that’s over and gone. Hanging onto it is just going to eat a hole in your soul, and that will never do. Terrible things happen to people each and every day, yet the human race prevails. I don’t mean to make light of your hardships — they are real. But even more real is the fact that as long as you are breathing and still trying, you have a chance to change things.

    Never let anyone else define you — diagnoses are just for insurance billing purposes. You define yourself, each and every day, with your words and thoughts and actions. And you have the power to choose better ways of feeling and being, than other people try to put on you.

    Bottom line is, TBI is no picnic, and we have to be our own best friends. We have to be kind to ourselves, gentle, patient, and always willing to forgive. It’s the only way to survive, in my opinion. I’m not saying that the difficulties you’ve faced aren’t real — they just aren’t the whole story.

    I encourage you to “rewrite” the story of your life, one line at a time, one page at a time. As long as we are breathing, we have the chance to change and learn and improve. So, keep at it. Look around for help — from competent people who can help you, not just lawyers who promise to get you compensation. And by all means, be gentle with yourself. With time, and with practice, it does get better. Give it time. Give yourself time.

    It will get better.

    All the best
    BB

  51. It’s REALLY frustrating, Maureen,
    I was injured from a hard hit from behind in a car accident 10.06; Never got a diagnosis of concussion/mtbi, but have had some obvious and not so obvious symptoms since…it IS frustrating at times! I’m Glad to hear You came through your experience Alive! I will Hold the Vision of a Brighter Future for you…BB is Correct…[we] YOU CAN Write the Future as deSired…Envision yourself as the Playwright directing Actors on a stage…Speak what you would Have Happen, How you would have others Act/respond, etc…Use your innate, God Given POWER to Create.
    You might want to check out these links & this site…helped Me get through some things [like my going to the dentist phobia] If nothing else, it can help you Relax :) I listen to stuff like this to Sleep covers the ringing in my ears that’s been there since the accident. Lots of resources there.
    Thinking Skills
    http://www.hypnosisdownloads.com/thinking-skills/bad-think?1187
    Anger Management anyone?
    http://www.hypnosisdownloads.com/emotional-intelligence/article/anger-management-book?1187
    Brain Power
    http://www.hypnosisdownloads.com/personal-development/brain-power?1187
    Brain Building
    http://www.hypnosisdownloads.com/scripts/growth-zone/brain-building?1187

  52. It’s definitely not just you. Lots of other folks feel that way, and I felt that way for quite some time, after my last TBI in 2004. in fact, I can remember not feeling “right” after most of my TBI’s — but I pressed on and pushed myself harder, trying to make up for it. Sometimes it worked, sometimes it just made things worse. Getting back to feeling like myself again has been a long — and incomplete process. In many ways, I still feel quite broken, although the outward signs of my life say otherwise.

    It’s very difficult. I’m not sure what the answer is, aside from getting used to feeling differently and just letting it be how things are.

  53. Well, I get small hits on the head by others, but sometimes they’re bad and give me very annoying headaches… hopefully they’ll learn to stop doing it.

    Maybe I’ll work in brain related science when I’m older:)

    Thanks for this, its nice knowing that you aren’t lying, whatever others say as “there’s no such thing, you’re making this up!”

  54. Hey Paperbob -

    Whoever is hitting you needs to stop. Sounds like you may need to teach them.

    I’ve been told I was making things up for as long as I can remember. They were wrong..

  55. Agree that you need to stop people from hitting you. Not being believed is also something I identify with.

    My impulsivity has struck again! Since as long as I can remember, I have felt a need to explain myself – as if I need to make excuses for being me. Well, anyway I unexpectedly bumped into the woman I mentioned above, and worried that I’d misread the situation. I thought I might see her so I waited, then when I didn’t I sent her a text message saying sorry blah blah. Later I saw her and chatted. Then because I mentioned something else I had been embarassed about (a medical issue – non brain related) and I saw something on TV which reminded me of it, I once again texted her this week as I didn’t see her. Later, I did see her and ask her a question, them immediately realised what I was saying might been seen as prying so I said sorry. Later she spoke to me and said:

    a)Stop texting her unless its important
    b)If I send I text, just send it and don’t apolegise
    c)We can still be friends….

    c) makes me wonder if she’s twigged that I have feelings. I’m a bit in love with her? Or maybe she was just asking me to stop send her needless messages?

    I’ve been feeling sad and a bit tearful since then, and am thinking of a letter of apology. Emotional lability, impulsivity and the need to explain myself is not aa good combination.

  56. I seem to have made it worse. That hurts. I gave her a letter saying sorry, which she accepted after saying it was not necessary. Then this week I found myself saying the words “I love you” to hear, without being clear exactly how I feel about her. I’m not really in love with her – but I do feel love for her in a platonic/friendship way. But I just blurted out “I love you” which makes things awkard.

    Impulsivity strikes again. Then to make things go from bad to worse, I saw her and couldn’t resist the urge to try to query her when I saw her the following morning – I chased after her. Stupid. Stupid. Stupid.

  57. Broken -

    I’m sure a lot of us have been there. Emotional lability and impulse issues do complicate things… but it may be best if she sees that side of you now, rather than later. You can do your utmost to put on a good face and keep things cool, but what happens if/when your issues start to crop up later and then you find out that she’s not ‘up for the challenge’?

    As awkward and embarrassing as it can be, I still believe it’s better to show your true colors up front and see if she can deal with it all. You’d be surprised what people will tolerated, even welcome, about each other. For example, I have a friend who is ONLY attracted to individuals who have issues and ‘need saving’. It’s brought them a lot of heartache, but I’m sure that some day they will find someone whose needs match up to what they have to offer.

    Relationships are tricky, in any case. The important thing is to just keep steady. And don’t let your nerves get the best of you. Your head can tell you all sorts of crazy stuff, when you’re all alone in there. Just keep trying. Give her a chance to get to know YOU, not just your issues.

    Good luck.

    BB

  58. Been worrying and feeling sad a lot since then. Have I ruined a perfectly good friendship? Have I got myself into trouble – she is someone I work with (sort of) and a superior? The only thing I can do is back off and hope she calms down.

    Negative Urgency at play here?

    http://www.psychotherapybrownbag.com/psychotherapy_brown_bag_a/2009/05/not-all-emotions-are-created-equal-the-difference-between-positive-and-negative-urgency.html

    In my case, the emotional and behavioural aspects of my brain injury effects have been the most disabling ones. Yet nobody has ever given me any advice over these – it was this that led to my comment about not being a proper person.

  59. Hey Broken -

    I read the PBB article, and it would appear I have both negative AND positive urgency. I didn’t realize you could just have one. In your situation, it sounds like classic TBI impulsiveness. Have you checked out the YouTube video about Alicia? Among other things, it talks about her mix-ups with sexual messages — http://www.youtube.com/watch?v=0H-KI6ECMqU Not sure if this applies to you, but impulse control issues as well as this overwhelming sense of love that others misinterpret happens…

    But the situation with me – as my neuropsych has explained it to me, is not one of me wanting “to prolong or intensify positive emotions”, or in the case of negative situations trying “to escape negative emotions”. Our brains just don’t work properly when they are overloaded with emotion. Psychologists can try to put a psychological spin on things all they like, but with TBI, you’re dealing with a brain that has less bandwidth than usual, may get fatigued more quickly than most, and just doesn’t parse all the info as completely as it might.

    So, the strategies for dealing with your situation might be better organized around staying rested, being mindful of how you’re feeling, and not jumping to conclusions about what this woman’s behavior towards you means.

    I get into trouble with that all the time – I think something means one thing, when it means nothing of the kind, and I’ve taken up so much time and energy dealing with stuff that isn’t so, I’ve depleted my reserves for what matters most — keeping cool and level-headed, and living my life.

    If you work with this woman and she is a superior, you definitely want to watch your step. Workplace situations can be very complicated and end up messy. Be careful.

    I’ll write more later about emotional and behavioral aspects of brain injury. For now, I’m headed out to help some friends unpack from a recent move.

    Stay cool
    BB

  60. Hopefully I’ll be seeing her this week and things’ll calm down…

    I did try and explain that I meant it in a gentle, childlike way.

  61. Things have got worse – and formal. I don’t understand how I was percieved to be “agitated” when I was actually very nervous and a bit scared….?

  62. Well, Broken, people will see what they want to see. We don’t have much control over that. It could be based on past experience. Might be best if you just backed off and gave her a lot of space for a while. Just go about your business and leave it be. Pressing the issue might get you in hot water. If this is a work situation, you could be walking a very thin line. Be careful. And err on the side of doing… nothing.

  63. On the other hand, Broken, you do still want to keep showing up. Get some feedback from someone you trust who’s familiar with the situation. It can be extremely difficult, I know. I’ve been there. In the past, I’ve just had to walk away from situations. Cut myself loose. Sometimes there was just no salvaging the situation. On the other hand, there have been times when I was really glad I hung in there.

    Conundrum.

  64. Well, the formal process resulted in a formal warning. Neither the powers that be or the girl in quesion (who is a medical student) have taken my damaged brain into account, despite knowing about it…

  65. I’ve decided to take a big step – and speak to my doctor about it. Hopefully seeing neuro psychologist will follow and should help…

  66. Excellent choice! Seeing a neuropsych for TBI related issues is really important, as they understand things that regular psychologists don’t. You do need to be selective about who you deal with. Some neuropsychs, I’m sad to say, report to insurance companies and try to keep people from getting help because of “fraud”. These people are not our friends. Don’t be paranoid, just be aware that these people exist. I was fortunate to find someone through my local BIA chapter, who had a similar TBI background to me and had a good experience with a neuropsych. They steered me in the right direction, and I have had great results. Make sure you talk to someone before you make a final decision on your neuropsych.

    Also make sure your doctor understands TBI (there is information for doctors from the CDC at http://www.cdc.gov/Ncipc/pub-res/tbi_toolkit/physicians/mtbi/mtbi.pdf – print a copy and take it to them, in case they aren’t fully aware). It’s important that they have an understanding of the different aspects of mtbi, so they can help you.

    Good luck!

  67. Well I saw the doctor – and he’ll try to arrange a referal. Note that I am in the UK so the system is totally different.

    Perhaps the doctor/neuropsych could write a letter to the “powers that be” and the girl that had a problem with me. Have to wait and see I guess.

  68. Good luck with navigating the healthcare system. I believe there is a blog out there by a gentleman with TBI who is in the UK, and he talks about his experiences. It might be useful to have your doc explain, but the majority of people just don’t get the whole TBI thing, so there may be better uses of your time. You’d definitely need to word it carefully. Might be best to just let things settle down before introducing more information. Like I said, people just don’t “get” it, and it might end up working against you — the whole “brain damaged” thing and all.

  69. Here’s a link to a video [someone else's] demonstrating an effective technique for reintegrating Balancing brain patterns / neural memories http://www.youtube.com/watch?v=8A4542SCreI

    I learned this technique from Dr Morter at a workshop and have both experienced and seen remarkable results, quickly.

    You can learn more about his B.E.S.T. system at [http://morter.com]

  70. Well, over two weeks since seeing the doctor – and I’ve heard nothing. The doctor did say to wait and chase them up if I heard nothing.

    This whole episode has been very wounding for me – with periods of bleakness and dark thoughts – including the desire to injure myself. Not good. I think your latest update sums it up rather well. Having a TBI (or other sort of brain injury) causes problems with picking up social cues, and leads to a degree of social isolation. Then the depressive side of the effects make it seem like you’re trying to play for sympathy, and the anxiety causes a flight/fight reaction which gets mistaken for anger. The problems in understanding add fuel to the fire. Then add impulsivity. It is the way that these things add up that causes problems.

    I see it as a double bind.

    A) My behaviour/performance is influenced by impulsivity, anxiety, emotional lability and the rest. Unless I tell people, they just jump to the wrong conclusions. However…

    B) Because I don’t have many obvious signs I am either not believed, or I am thought of as playing for sympathy.

    Which results in social isolation. I’ve had this since I was seven, and my lack of social experience/skills gives me a problem in its own right – having grown up as an outsider. Again people are judgemental about this (without knowing) so guess what? More isolation. This is, in my view, the worst bit. Perhaps professional help can break that cycle?

  71. Broken -

    I am hoping that professional help may be of use to you. It can be tricky to sort things out on your own.

    Dealing with all of this since seven years of age is a real trial, to be sure. I know from personal experience what havoc it can wreak – yet for each person, things are a little different.

    Have you found any help in a brain injury association in your area? You may wish to explore that, as well as neuropsychological assistance. They may be able to offer you help and support of one kind. But I’ve found having a neuropsych has been a life-saver. They explain things to me in ways that I never before thought of, and they help me see through the fog that has been settled over me for almost as long as I can remember.

    I do hope you don’t injure yourself. I understand the desire, and I have felt that, too, but adding yet more injuries tends to not help matters. Take care of yourself, get plenty of rest, eat well, and get some exercise. Someone once said that a brisk five mile walk does a person more good than all the psychiatrists in the world.

    But I still wouldn’t trade my neuropsych (despite what I’ve written fairly recently).

    Be well.

    BB

  72. Still heard nothing…….

    The complaint has been dealt with, and the other party reassured. It just leaves me wth a awful empty feeling – no job (currently), no friends (seems to have always been the case), and no relationship (same applies).

    How the hell do I start building a social network?

  73. Hmmm. How indeed…

    With no job and no friends, you might consider you have a blank slate to work with. Have you thought of volunteering? It can be a great way to not only connect with others but also help others less fortunate. Also, what are your personal interests? Are there any clubs you could join?

    Try the volunteering. It can do wonders for your self esteem to be of assistance to others.

    Cheers & best of luck

  74. Still heard nothing – so I tried chasing it up. No Neuropsychology services in my area.

    Hmmm. I forget why I wanted to see one, it’s that long ago. And I think really the problem has been with other people and there perceptions.

  75. I saw the other person last week, and she did at least smile (sort of) at me. Better than running away screaming or crying I guess…

  76. Yes, that is better. My suggestion is that you just let it be. Don’t chase after her, don’t pursue her. Just let her be. Let her get used to the feeling of not being upset by seeing you. She might need some practice, just to calm down her nervous system.

    It sound like the situation had a lot of misunderstood communications… and when we experience our misunderstandings as “the truth” and we experience them very strongly, our nervous system can get “wired” to react habitually to certain things a certain way.

    So, when things change, we need to re-train our systems to not react the same old way. This takes time, it’s not logical, and it can happen in starts and stops. In times like these, better to be still and let the muddy waters stop swirling around, so everyone may eventually see more clearly.

  77. Anyway….is a noisy environment with a need to constantly speak on the phone and multitask a good one for a (major) brain injury survivor?

  78. Probably not. Unfortunately, those jobs are widespread and really common, so it can be a challenge to find an alternative. I’m often in that situation with my job, and it can be a real problem. On the other hand, it can be good practice to learn to keep pace — so long as you get plenty of rest and can take regular breaks.

  79. Well, I had nothing to lose – so I’ll see how it pans out. Perhaps in the excitement of a job offer I said yes too soon. I’ll see how it goes…

  80. Well…I lost my job. Basically I was assessed as being too slow and not confident enough with customers, and I struggled wwith the multitasking aspects. I was a bit slow and picking them up and got told to leave.

    As I have had no neuropsychological assesment, I have no evidence as to how my TBI effects things.

    To add to the fun, on Saturday I crashed (and wrote off) my car. I was unhurt (save for a few minor scratches) but I can’t help worrying that I’ve injurd my brain again…

  81. hello

    I had a heavy iron stone plate broken over my head and i bleed . I had to go to the hospital

    and have stitches . I also have spina bifda , my mother was mentally ill. back in those day .

    I never had a head scan they just didnt have that technology back in those days . I notice that I

    have a hard time with remembering names and events . I have never attempted to see if in fact

    that this is what has happened from the past injury to my head.

    thank you

  82. I have just started a blog regarding my mtbi & came across your blog. VERY inspirational & helpful. I will defintly be following you. I have had over 2 years of struggle, relying very much on the internet. So called professionals here just brushing me off. The two constants that have helped me on a daily basis is my dog & my partner. Thank you :)

  83. You’re most welcome – Glad you found your way here. I look forward to reading what you’ve got to share, as well. It certainly is a… journey, do doubt about it.

    Best of luck to you.

    BB

  84. When I was 10 years old I was at the hand of a mentally Ill adult. who could not stand the that I had Spina Bifda and her way of dealing with it was a heavy dinner plate over my head and split my head open. Had to go to the hospital and have stitches. I have always thought from that it was brain injury. have always had a hard time in the learning process.

  85. Well, I’m not a doctor, but if I were you, I would probably think the same thing. I’m sorry you had that experience. It is tough to have to be at the mercy of someone who is ill and aggressive.

    I hope you can still enjoy your life – there is so much more to it than pain.

  86. thank you for your support susan the problem is that I went from one abusive situation to another. the best thing that has come out of it is my three beautiful children and my grandchild. That is a blessing in its self. My younger sister , we were estranged but we are closer now and my niece and new grand nephew. who is now 4 months old

  87. Well, I still haven’t seen the neuropsychologist. I did get a letter from the doctor just before Christmas telling me that they are trying, but there is only a skeleton service. Perhaps these people are very rare, and this might explain why I never got neuropsychological help after the accident? Or occupational therapy – help with manual dexterity, co-ordination, and so on. Not much rehabilitation was available in those days.

    The complaint made against me last year was very wounding, and is still as source of pain as I have never felt forgiven, although I acted in good faith and meant well. It continues to be very tiring and depressing that to get disciplined and treated less favourably on the basis of what are actually brain injury events, and my injury is in my medical records, and a quick look in the relevant chapters of a medical textbook seem to describe the things that have been held against me.

    Sadly, it has always been that way, from struggling to play musical instruments or do well in sports at school, to being left ot of social things, to having trouble applying for jobs and in interviews, etc, etc, etc. It is very tiring.

  88. I hear you loud and clear. It is so tiring. I broke down last night, myself, just wrecked over working so, so hard, and not seeming to see any benefit from it. Why DOES it all have to be so hard? It makes no sense. Especially considering — as you said — that the things we have going on with us are documented for all the world to see, if they would only look.

    I have been working hard, trying to find a place where I can find some peace and just sit quietly and BE quiet. But it is hard. Work is very difficult. I think my boss wants to get rid of me, because they are (self-admittedly) the kind of person who wants to be the smartest person in the room, and when I’m around I seem to make them feel dumb?

    I don’t know if it’s my social ineptitude or the fact that they like to play head games. I just don’t understand. But I keep going. Because that’s what I do.

    I hope you can keep going, too.

  89. Thanks for writing your blog, I can really identify with a lot of what you say. MTBI Jan 2010 from an unprovoked attack in the street. Though nothing can be proven, conveniently no CCTV, it may not have been ‘the gang of 15-20 youths’ that my friend saw coming towards us, but my friend himself; which in itself is a fearful thought. He suffered no injuries, but apparently managed to get me to safety. I was unconscious, cannot remember a thing. Had CT scan that night, told it was normal, nothing to worry about: ‘no reason why your memory will not return’.

    No support from family, they believed the hospital but eventually sought help after several months though had to push to see a Neurologist who referred me to a Clinical
    Neuro Psychologist. The explanation from the Psychologist was the real breakthrough: ‘you can’t remember something if the memory has not been laid down in the first place’. She explained that even though the injury to my brain would have happened quickly, there was not enough time for the memory to be able to record the incident. No record, no memory.

    So the doctor at the hospital? My Psychologist said unfortunately doctors see things in black and white. A normal CT scan is not a conclusive test, it does not show you what’s going on underneath.

    Which is unfortunate as a close family member who is a medical consultant still believes there is nothing wrong.

    Thank you SO much for your blog. I DID ask for help, against ALL my family’s suggestions and I’m so glad I did. My immediate family may not be supportive though two of my cousin’s
    are. I told my Psychologist that she was worth her weight in gold. One of my cousins thought this too. I believe it’s good to let people know if their doing a good job, praise where praise is due, not just because they are who they are.

    Sue

  90. Hi Sue,

    Sorry to hear about your attack. I’m glad you reached out for help. It can be maddening when family and friends do not believe or support you — especially if they have medical background. You may wish to refer your medical consultant family member to some of the CDC materials on TBI for doctors — http://www.cdc.gov/concussion/headsup/physicians_tool_kit.html — it may open their eyes a bit. Too many medical folks see things in black and white, and they also simply do not know about TBI. Or they have strange ideas about what TBI does (I heard about one doctor who thought TBI wipes out your ability to have a moral compass — how odd — and unfortunate for their patients that they think so).

    No matter what’s going on in your brain, I think it’s always good to respect your intuition and take action on your own behalf. Finding at least one person to support you, is hugely important.

    Best of luck to you in your ongoing recovery.

  91. I echo the above frustration with doctors. But perhaps we cannot blame them entirely? I looked in the “Oxford Textbook of Medicine” in my local library and discovered only a few pages were dedicated to traumatic brain injury, which struck me as odd since brain injuries are very common and one of the leading causes of death and disability.

    I’ve been trying to chase up my attempt to see a neuropsychologist. Now I have the phone number of the place – left a message today. If no reply I’ll try again on Monday.

    I still haven’t had “closure” following the events that led to the complaint etc, then again I never had closure relating to childhood events. I can relate to people not understanding the memory issue – I got stick at school for not remembering the events before the accident, including from teachers. I can remember being labelled stupid, being spoken to S-L-O-W-L-Y, and having confidential information broadcast to the whole class by teachers.

  92. It is odd, isn’t it, that TBI is so overlooked and neglected. Those of us who are tackling it, are in many ways pioneers.

    Keep at it with the neuropsychologist. Just keep trying.

    That’s unfortunate about your experiences. People can be stupid and cruel. Sorry to hear about that.

    Still and all, you can’t let that define you and let that stop you from living your life.

    Onward!

  93. Lately I have been repeating the famous lines from my oldest daughter’s favorite movies, “Just keep swimming, just keep swimming.” I have found myself on this site for the past days now for at least an hour or two at a time. Finally feeling not alone. Help comes in the darkest hour….just when you feel like you can’t go on.

  94. Well, I’ve got an appointment with a psychologist tommorow. Not exactly a neuropsychologist, but hopsefully a useful step. Last night it struck me how much the how problem/complaint issue still bothers me. I know it was based on perceptions that the other person had, but nonetheless the comments were very wounding, and I haven’t been able to make peace…

  95. That’s good – you’ll have someone to talk to. In terms of what others say about you, it is hard to take at times — but those things often say more about the others, than they do about you. It doesn’t have to be about you, actually. There may be some elements of truth that may be hard to take, or that you just can’t see. Just remember, because others think you’re a certain type of person, doesn’t make it so. Everyone is wrong about a lot of things, so don’t let that define you. You’re better than that.

  96. Really its a very good sight for those who have experienced TBI. I am one of them but I envy you that I cannot write like you though I wish. Enjoyed. Keep it up

  97. Thanks – I’m glad you enjoyed it. Writing is something that improves with practice, so if you want to write well… well, start practicing :) Have a great day.

  98. No, I got it wrong. I am seeing a Neuropsychologist. I started doing some formal testing. I know for a fact that I have an above average IQ, but will struggle with planning type tasks. Also impulsitivity type ones too. And social skills. But that’s what I’m there for…

  99. Ah, so that is progress. A lot of folks with TBI have above average IQ, but that’s not the problem… or maybe it is? Having issues with planning and impulsiveness and social things can be even more frustrating when you’re very smart. The stuff that “should be easy” for us, isn’t. But the things that are hard for others, sometimes come easier to us… Good luck with your testing.

  100. I think I did ok with the initials tests – WAIS IV. However, the issue that led to seeking to be refered is still not settled in my mind, not had a chance to say sorry or make peace. And I got a reprimind for trying to keep superiors up to speed…

  101. I hope your tests show something useful. Sometimes it’s helpful to find out you didn’t do “ok” with a test – because then you can work on that piece of things. You may never get the chance to say sorry and have that person accept it – some people are just like that. But it’s not necessarily you. As for settling the issue in your mind, the more information you get, the more you’ll have to work with, so don’t be discouraged – just try to keep clear, get plenty of rest and exercise, and take time each day to give yourself a break of some kind.

    As for your superiors, it sounds like you may need to ask them what they DO want you to do. Then, when they tell you, put it in writing for confirmation, so everyone is clear about it. Not sure looking for a new job is an option, but it sounds like the people you’re working for are a bit of a challenge.

  102. It’s complicated – I guess it always is. Regarding the person I want to mak peace with, I have not seen her since before Christmas.

    Hmm.

  103. That’s easier said than done. As she may have been working elsewhwere I thought nothing of it, but thought it odd that other hadn’t seen her where she may have been. But she had talked of taking a year off.

    After a few weeks away, I checked my e-mail and unusually all the recipients were listed. Next to her name is “leaver?”. Not sure why this has upset me, as she would probably still be in the area (the place I tought off and mentiond above) and possibly visit from time to time, but it has.

    It is hard to let go, and hurts that I never came full circle, and had the chance to make peace.

    Because of the need for confidentiality (hence I’m quite vague over details) it isn’t something I can talk to people about.

  104. Change is hard, and people come in and out of our lives so often, it’s a wonder that we develop connections with anyone. I’m sure time will take a bit of the sting out of the experience for you. Just let things take their course and trust that it’s really for the best, even if you can’t see the whole picture. Sometimes the best we can ask for is just coming out of things in one piece — and not ending up in jail… or worse. Cold comfort, I’m sure, but sometimes that’s just how it turns out.

    Good luck.

  105. The irony is that in many ways its a non change – and may have already taken place months ago, but it still upset me. My superiors and I expected that the other party and I would bump into each other and exchange words and have the chance to make peace/clear the air. Not yet, but perhaps….

    It also might sound odd but she’s sort of the person I always wanted to be.

    My brain lt me down in another way today. I was driving to an appointment, was running late despite having planned to leave in plenty of time, couldn’t find a parking space and had to search for another car park, tried to phone to say I was running late but got cut off, then the parking ticket got blown away…..arrrgh. Fortunately they could arrange another appointment.

  106. the best laid plans of mice and men. it was not your time to be there as odd as it sounds. things happen for a reason and there is only one person who knows

  107. Isn’t one of the problems associated with brain injury and inability to let go of unresolved issues? Unresolved things go round and around in (my) head, and cause anxiety, unless resolved…. Even very old ones going back to school age stuff.

    Saw the neuropsych on Thursday – she believes I need counselling. She also recommended writing a letter to (the other party) and tearing it up. Tried that – no good. This whole issue has done damage, and coincides with other stuff – losing contact with a close friend who was like a sister to me, bad memories being brought back by all the media coverage of the Olympics and politicians talking of a renewed emphasis on school sports (what about the kids who are last to get picked every time, or get beaten up for not being able to catch the ball etc?), and most recently the unexpected death of one of me neighbours due to a massive stroke.

    Bah…..

  108. I believe that is an issue with TBI – getting stuck on “old stuff” and not being able to move on. Counseling might be a good idea for you. Then you can have somebody on your side who you can talk to — sounds like you haven’t been getting a lot of that. Sorry to hear about your neighbor. That would be really unsettling for me.

    I tried the letter writing (and then tearing it up). It kind of helped for me. But it didn’t change anything, and what I really wanted was change.

    Oh, well.

    I concur about the sports business. It’s only helpful for some kids – for others, it can be a source of constant pain and embarrassment. It’s no silver bullet.

  109. I got my results from the neuropsychologist this, and she went through the report with me.

    Intelligence assessed using WAIS IV (UK). Apparently I have an high IQ, although I was surprised that I did better at verbal reasoning than non verbal – shapes and numbers. Speed of processing down. Memory reasonably good.

    Executive skills: Can plan, follow instructions, and solve problems. Not so good at multitasking.

    Social/emotional etc. – Does not fulfil diagnostic criteria for Aspergers. Different social skills good, others bad. Evidence of stress/anxiety/low mood due to previous adverse experiences, lack of social experience, and unresolved issues including the complaint. Emotional lability probably due to direct damge to the frontal lobes, (my head took several direct hits (including from the front) when the car hit me). Impulsivness linked to anxiety.

    Most of my problems are not cause by the damage to the brain itself, more the treatment I got from others, including prejudices. And my self analysis has been very accurate.

    The written version of the report should come soon.

  110. I’m still waiting for the report, but I went through the draft report with the neuropsychologist. Considering how bad th injury was, i am very function, with a high IQ, and good scores at things such as problem solving and following instructions. My main issues that are directly due to the injury are reduced processing speed, reduced motor speed, and a reduced ability to multitask.

    Most of my problems are due to being misunderstood, and my reactions/adaptations to being treated badly all my life, which causes anxiety, stress, low mood….. The compaint never would have happened had I been listened to and understood.

    The question now is who do I tell? And how?

  111. Very interesting – it sounds a bit like my own assessment — problems coming more from circumstances and context, than from actual damage to the brain. TBI is just the start of things; it sets the stage for the problems coming down the line. And the problems themselves can be far worse than the actual injury itself — combine logistical problems with the judgments and ignorance of others, and throw in some diminished capacity for memory and attention, and you have a pretty effective “recipe” for ongoing problems.

    Good luck with sorting through what to do with the new information.

  112. Good question. When I got my neuropsych evaluation, I thought for sure that others would appreciate it and be able to understand that the things I did and said were NOT because I was a bad person, but because I did not understand/remember what they were saying, and I had a hard time communicating.

    Unfortunately, it did not go that way. People still didn’t understand, and hearing that it was TBI related even made things worse.

    The value of the report was really for me — for learning where I needed to put more attention and care. I realized that since my short-term memory was so crappy, I needed to be more involved in conversations with people, ask more questions, get more clarification. I always thought they would think I was stupid if I did that, but it turns out that if I say things like, “So you mean ______” it lets them know that I actually care about what they are saying and I want to understand, which they actually like.

    I’ve also been more aware of how much better I can think and function when I get good sleep and exercise regularly. I never gave it much thought before, but when I started taking care of myself and paying attention, it made all the difference in the world.

    If you’re like me, you’re thinking that having a professional assessment is going to give people the info they need to treat you like a human being. But that doesn’t always turn out to be true. People can be just plain ignorant and cruel, and a NP assessment about you isn’t going to change that about them. On the other hand, your report can give you info you need to change how you doing things, so that you give others less reason to fall back on their really bad behavior.

    I wish things were different, but that’s been my experience. Good luck to you – I hope things work out well.

  113. I have gone through all the difficulties described here and I am 90% out of it after 20 years only with continuous trying and not loosing hopes but with confidence in mind without a single support. But searching for help, at last I met some one, some body all the way on my road. My communication and language skill was gone which was the worse thing. But try and try is the only way to find and create new neural circuits. And it is true that he, who has given birth will feed us definitely.

    Your blog helped me definitely.

    Of course there are a lot of valleys and hills. We have to go steadily but slowly, slowly, slowly and stop immediately when we get fatigued and loosing our controls. That is the only important point when we can do mistakes, so we have to stop.

    Of course it is very difficult to neglect others’ comments, but we have to learn it.
    Thanks BB.

  114. Thank you Pramod. What you say is very true – try and try is the only way to create those new neural circuits. They are there, always waiting for us to bring them to life, and if we do not try, they will stay dormant – maybe forever.

    The stopping is very difficult for me. I tend to just push through – push on. This is something I am learning to handle differently, but it takes time, as you well know.

    Be well – and congratulations on your great progress.

  115. thanks bb. emotional support is another thing which improves our energy. Whenever I got it It was just I was feeling as if flying. Once it goes then felt just down.

    Still I experience the fatigue, blockage of brain, standstillness, sleepiness in between. But I now learnt that I have to carry on like that.

    Still I cannot give guarantee that I will do the thing. But now I learnt to be satisfied in whatever I am and believe the God.

    If your I Q is high, please read http://www.wayseers

  116. Yes… we carry on… we learn to change the things that we can, and we learn to live with what we cannot change. For me, there is no other choice – and I wouldn’t have it any other way.

    Thanks for the link. It looks interesting.

    Be well

  117. I cannot believe it. Every five years, the organisation I belong(ed) too gives you a review, in order to make decisions about your future. I had mine this week. My immediate superior was not there, and another (more senior person) stood in for him.

    The Boss of my part of the organisation questioned me about some recent work. The guy I had been working for commented in a report that it had been an unsuitable place for using my main skills, as it was a different type of job, nonetheless I did well, and the guy who wrote the report said that he’d like to see me again. But mt Boss disagreed – taking the view that I was unable to achieve anything in several weeks as I am incapable.

    Next he discussed another period of worki – thisw was a special job and I was trained to do a specific equipment related job, but the Boss insisted it was because I have no social skills and failed at front of house type tasks and got moved.

    Then he looked at old reports which claimed I lacked confidence – actually it was because I had to ask questions and go through things again. Ironically, my report from the neuropsychologist reported on my reduced processing speed, and also recommended asking questions as a coping strategy.

    The person who was meant to be representing me stayed silent. I was given two minutes to defend myself. I did my best, but the Boss reacted badly when I said I’d had to take time off last month for a Clinical appointment. He pressed me for more detail. Before I had a chance to saying anything other than “neuropsychologist” he told me that I obviously had an underlying issue, therefore I was out…..

    A few minutes later I was escorted to the gate.

    I have never experienced this type of direct discrimination before and I am very upset and confused.

  118. Oh, that is a tough one. It doesn’t sound legal, but I suspect they may have taken steps to cover themselves. I’m not sure what you can do. Is there anyone who could advocate for you? It sounds like you need to consult with a professional expert – someone in the field of brain injury. It doesn’t sound like the sort of thing you should try to handle on your own – not because you can’t, but because there may be legalities and loopholes that you don’t know about that others could help with.

    I wish I had more to offer, but that is an extremely tough blow.

    Good luck getting things sorted out.

  119. Broken – could you request another meeting with your boss you were suppose to have.

  120. Hi Susan

    Not really, as he seeems to have made his mind up. I suspect this was true before the meeting. Not sure what I can do – go to someone senior to him?

    I seem to have been declared persona non grata and others will no longer talk to me.

    BB

    Apologies for the poor typing in my previous post – I was using a borrowed laptop as my PC was being repaired.

    Yes, it is tough, and very prejudiced. The guy is known for bing something of a bully – and I’ve never been one of his favourites.

  121. Broken – well, that sounds familiar. I’m not my boss’es favorite, either. I’m useful, and I’m the only one who can do the job I do (for now), so they put up with me and at least make some effort to keep me around. But I really can’t wait to leave. Years on down the line, you may look back on this time and be glad it happened this way. But for now, it is very difficult. The best thing to do, in my case, has always been to “pick myself up, dust myself off, and start all over again” as a song my mother used to sing says.

    I don’t mean to be flippant, but the world is a big place and there are other opportunities, so it may be best to go look for them and find the fit that works best for you.

    Good luck with everything!

  122. Dear all,

    I am not sure who to turn to. I hope that someone out there can provide me with some guidance.

    In 2005, I was in a vulnerable emotional state, having started my first year in university and juggling part-time work and for other reasons unbeknownst to me, I had a meltdown. My family was alarmed, and did not know how to handle me or deal with the situation.

    Shortly, I was sent to hospital. I do not know how I got there, how it was arranged, who visited me or how I was treated. To this date, I have no recollection of what transpired during my hospitalisation. I asked everyone – the doctor, my family, friends – but none was willing or able to volunteer any information. My family is of the firm belief that the lesser I know, the lesser the pain. Subsequently, my mum passed on, my sister and brother lost contact with us and my father claimed that he was unable to recall what happened as well.

    It has been approximately 7 years and I have never stopped searching for answers. I was adamant to find out what treatments/procedures had been performed on me when I was hospitalised for I knew that my amnesia was abnormal. When I returned to school, I was unable to learn and retain information as easily and performed badly in my papers and in dance (was unable to remember my steps). I believe my ability to write, interpret and analyse have been affected as well. In total, I took leave of absence for 3 semesters whenever I have a relapse. I am unable to recall months and years of my life after the episode and I believe I must have acted out of character around my friends and in school.

    Recently, I managed to get hold of the hospital bills and confirmed my suspicion – I was subjected to 6 sessions of inpatient bilateral ECT (electro-convulsive treatment) every alternate day when I was warded. I am unsure if I received any more treatments (e.g. outpatient) after the period for I would not be able to remember. Over the span of 7 years, I did asked my family and doctor if I had received such treatments in hospital and they denied it whenever I asked. I have researched on this topic for years as this was my suspicion and fear. Critics of such treatments and literature online (http://www.huffingtonpost.com/dr-peter-breggin/electroshock-treatment_b_1373619.html) highlight the complications of electric-shock therapy, alerting the dangers of cognitive and memory impairement characteristic of a brain damage (each shock has been compared to a moderate to severe traumatic brain injury).

    After I learned of this news this week, I was distraught and have been crying uncontrollably for I was unable to come to terms with the fact that I was given ECT. I have not been to work for days. I understand that ECT was never meant to be a first-line treatment and is only administered as a last resort, e.g. if the patient does not respond well to medication or other forms of therapy. In my case, ECT was administered immediately the next day after I was admitted ( I was not put on medication and monitored for a period of time. I have not seen a doctor nor was I on medication before 2005).

    I am extremely worried. In 2009, I was assaulted by a robber (hit several times in the head by a weapon) and suffered head injuries. I fear that compounded with the negative effects of ECT as well as my head injuries in 2009, my brain could be permanently affected.

    I am also angry. I am angry that such treatment was prescribed immediately when I was warded and that my consent was not sought. I believe such treatments require the consent of the patient, but there is a possibility that my family member have consented on my behalf, for I definitely would not subject myself to such a treatment voluntarily.

    I know my family members are anxious at the point of time to quieten and calm me down, and I know that my mum, who has anxiety issues, would have exaggerated my situation to the doctor who – in an attempt to provide them with an instant solution – offered such a treatment without clearly detailing the risks informed. I know that I cried alot back then, for my personality is as such (it should not be mistaken as mania). I believe I was conscious and in control of my faculties at that point in time, which does not warrant such a procedure. I am confident that the doctor prescribed it as a first-line treatment without ensuring all the criteria of ECT was met, i.e. the individual have tried other forms of medication and therapy to no avail.

    I do not think that my family members were provided with sufficient information on the dangers of ECT to decide for me. I know I probably should not feel this way, but I am also angry that my family allowed this to happen. They may not have considered the potential repercussions of such treatments carefully and may have in the process, ruined my life.

    I feel impaired, helpless and dysfunctional at the moment. I am not sure how to go about verifying if there are indeed, any permanent effects on brain function arising from the ECT and head injuries. I fear that the fact that I was unable to remember anything about my hospitalisation and the inability to learn and retain information for months after are signs of brain damage. I do not know for sure, if the brain has managed to re-wire itself and recover completely. The articles written against ECT which I found online have scared me considerably.

    The brain is our master of control, and everything, be it intelligence, memory, coordination, skills, etc, are all dependent on the brain. I am unable to gauge for myself, whether I am the same person as before or performing at my optimal. Memory issues do exist but I am not sure if it is completely attributable to the ECT and head injuries, or other factors.

    I fear that if I would as a result, lose all the confidence and sanity. My emotional state (I was down for the past month as I was dwelling on the assault case prior to discovering this additional information) is at its pits. I still want to lead a normal life and have a career and be able to dance and enjoy the little things in life, but I feel limited in my abilities to do so as I fear I may be truly be impaired.

    By the way, I have since weaned off all medication earlier this year (I was also previously prescribed medication that gave me more seizures. Again, articles online indicate that by subjecting the brain to artificial seizures through ECT, an individual’s seizure threshold is lowered, increasing the likelihood of subsequent seizures if triggered).

    I spoke to the doctor who administered the treatments, and he was not able to provide much advice. He did not deny there could be dysfunction. (Things he mentioned: say my IQ could be 150 at baseline. After the procedure, it may have fallen to 130. So long it did not fall to 95, there should not be a cause for concern. What he said is hardly any consolation. Literature online seems to suggest that yes, there could be a drop in IQ by 30-60 points. I am unable to ascertain this for my own condition for I did not do any cognitive testing prior to the treatments).

    If I am aware of all the potential risks and consented to the treatment by my own means, I would have no reason to be upset. However, the truth of the matter is that I did not consent, and I do not think that the doctor nor my family, exercised the right judgement at that point in time. Now, as an individual, I would have to pay for the consequences.

    I do not know what is my next appropriate course of action. Do I seek legal assistance to investigate the case? Even if I do, it will be huge monetary and emotional investment on my part. How do I get past the fact that my brain could be permanently damaged? How do I know for sure whether it has been damaged? How do I move on in life and not let this realisation affect me in my daily functioning?

    Please help me.

  123. Well, first of all, let me say how very sorry I am that you experienced all of that. I get very angry when I hear about doctors doing this sort of stuff to people and then being so cavalier about the impacts to intelligence, when it does affect us so strongly, personally. I also feel sorry that they are so mentally and emotionally stunted that they would be okay with this. As for your family… in their shoes, I would run away and/or pretend to not remember what happened, because it was a terrible thing they consented to. Who knows how much the doctors swayed them in this. I suspect they are living with terrible guilt.

    In your case, trying to get legal help for this could be counter-productive. A lot of people think first, “Whom can I sue for damages? Should I call a lawyer?” But to be honest, legal battles can be extremely arduous and interminable and drain you not only of time and energy but also what money you have. As much as attorneys love to promise good results, there is no guarantee. And the lawyer you can afford is probably going to be a lot less capable than the lawyer that a doctor and/or hospital can afford.

    The one thing I can offer you is this — the brain can and does heal itself. It can and does “re-wire” because it is built that way. The biggest obstacle for me in my own recovery, was lack of information and not realizing that by putting in some extra effort and paying attention to my results and continuing to try to do better, I could get better. I settled for years – for decades – thinking there was nothing I could do. But of course that was not the case. And my thinking and behavior has improved dramatically over the past few years.

    Here’s my suggestion — read “The Brain that Changes Itself” and read it — a few times. First, it’s an amazing book about people whose brains “should not” have been able to do what they did, but they did it anyway. Second, reading can be good for your memory. It’s a compelling read, and even if you don’t get every word the first time through (I didn’t), there’s still a lot of great stuff in there.

    I would also encourage you to reach out to your local brain injury association and talk to others with TBI. ECT changes the brain. TBI changes the brain. And it sounds like you did sustain a head injury during that robbery. There will be similarities in your situations, regardless of the details of how you got there. Bottom line is, you’re dealing with a brain that’s different than it was before. And frankly, the fact that you are upset about it and are seeking to take action, is a good sign, as far as I’m concerned. It means the ECT didn’t completely wipe out your personality, as it can do at times.

    Don’t worry about the memory stuff. Maybe you remember, maybe you don’t. “Memory” is tricky business, anyway — we often remember things that never actually happened, or we have completely different versions than a person who was standing right beside us. Losing those years doesn’t make you any less human — it just makes you human.

    Best thing to do, from where I’m sitting, is to just get on with living your life. Yes, it is upsetting. Yes, it is emotionally devastating in ways. But you can still live your life – and it will be better for you if you find some way to feel true peace and happiness, than if you “stew” in your frustrations and disappointments, which will always be easy to find and experience, without looking too hard.

    I wish you good luck and I wish you peace. The brain can and does heal, and you do build new pathways and connections with repetition of thoughts and actions. No one can take that from you. That’s just how we’re built. The question is — will you build neural pathways of anger and frustration and sadness, or will you build neural pathways of positive thinking and action and hope for a better day?

    Be well
    BB

  124. Dear BB,

    Thank you for your reply and my apologies for getting back to you so late. I was a wreck for the last couple of weeks.

    Regarding the local brain association, I am not sure if there is one and would they even sympathise with my situation.

    I am traumatised greatly by the incident. I wake up in fear everyday and feel the dread that such a brutal treatment was done to me and I have no ways of changing this fact. And there’s the regrets, of how it could potentially be prevented. I feel violated by how the doctor took a chance at a normal healthy brain by subjecting it to electric shocks.

    It is heartening that you mentioned the brain can re-wire itself, but how much can it do so and whether it will return to its former state is something I probably would never know. I don’t even remember what I don’t remember, if that makes sense.

    I was reading some old blog entries of mine for years 2005 to 2008 and was alarmed that I do not remember most of the events and the people which I mentioned. I was administered the treatments in 2005, so judging from my entries, the memory impairment seems to have persisted for years. I also found out through my entries that I had difficulties in areas which I used to be able to perform effortlessly, e.g. language, art, dance, etc. Physically, I had spontaneous seizures where I bit myself and could not recognise my family after coming to, persistent nausea, hand and body tremors. I am not sure how many of these side effects are attributed to ECT or the cocktail of medication that I was taking after the depressive episode in 2005. I do not know for sure, whether I have recovered these abilities now. How do you quantify and compare such things?

    You mention ECT changes the brain. Do you happen to be familiar with the procedure or know anyone who has been subjected to such treatments? I am not sure what is the extent of damage and what skills/abiities have it affected permanently. And that is the part I can’t grapple with – the permanency of the impairment.

    I do not know if I need to explain to people that what they see is an altered being now. I feel that every man on the street – aside from sufferers of TBI – is functioning with a brain they are born with but I am not, all because of the misjudgment of man. Is this a common treatment? I do not think so (especially in my region), which means that chances of finding a fellow ECT patient is very small. However, it is a past I am not proud of so I am not comfortable with sharing with people around me. People who know me now would assume that this is the person I am all along, they would not know I was not born this way.

    I do not know how to accept, move on and deal with my emotions. Basically, I can’t function. I do not think that people around me understands either. I may continue to second-guess myself and not progress further, for I feel that if I can’t be the best of what I can or originally should be, I should not even bother doing it for that cements an impression of me which is untrue, since people do not know the entire story. That’s probably my ego talking. At 27 years old of age, this is not something I am prepared to deal with the rest of my life.

    I am sorry if my thoughts above are incoherent. I am weary.

  125. Hello again,

    I don’t think you’re incoherent at all – you have a lot to think about, and you’re handling some pretty heavy stuff.

    Given that you’re already feeling alone in your troubles, even if the local brain injury association didn’t understand (though they might), would it hurt to reach out to them? I know you’ve been mistreated by folks who were supposed to help you, and that is a hard thing to handle. Still, there are people in the world who can help.

    I don’t know the particulars on ECT, but I’m sure there are people out there who are blogging about it. I know one person who I think was given ECT as a teen-ager, and they have a lot of memory problems. But they still live their life. In your shoes, I would do more research into the subject — I think individual bloggers could have good insights, if you can find them.

    As for how things were before – I can really relate to your questions. I have a terrible memory for my past – there is much of my life that I do not remember, and it has always been that way for me, even when I was much younger, before my 2004 accident. My parents usually start conversations with me by asking, “Do you remember…?” and I usually don’t. I just have to live in the moment – right now, right here – and be grateful for what I have. It does me no good to dwell on things I don’t remember, or the things I “should” be able to do. That keeps me from learning about the things I CAN do, and the way I really AM.

    As for getting back to how things were — for a long time, I was very intent on doing that. Now I realize, that I have no idea how things really were before. Even the things I do think I remember, it turns out I really don’t. I can worry about it and make myself crazy over that, or I can just get on with my life and live it as best I can.

    Memory is a tricky thing – it is very necessary, but we make so much of it, and in some ways, I think we place too much emphasis on what we “remember” versus what we are experiencing in the moment. Other people are strange about this, too — they act like there is something wrong with me as a person, if I don’t remember things — it seems to be *the* part of us that people define as “us”. But it’s not. We are who and what we are, no matter what we remember.

    It is really too bad that you had that experience that keeps haunting you. At the same time, you have the power to decide what you will think about it, and how you will feel about it. Nobody can force you to think or feel any way you don’t choose to.

    So, choose well. Because it is your life, and there’s a whole world of opportunities waiting for you, if you can see the good and not get stuck in the bad.

  126. BB,

    Wow, you have created such an amazing resource here! I am sorry that this is the only way I could find to contact you, but I am creating a campaign to create TBI Awareness to be highlighted during TBI Awareness month in March.

    I was wondering if you would like to take part in the series in any way? The majority of participants will create a blog post that shares their story of TBI, whether they have suffered one themselves, are a caregiver to someone with TBI, a doctor, mentor, etc. If this interests you, please feel free to contact me via e-mail or Twitter @tweetinAsh.

    Thank you so much for all that you do & creating this great resource!
    Ashley

  127. Thanks Ashley -

    I would be happy to contribute something. I just need to catch up on my sleep so I’m coherent again ;)

    I will contact you by one of the ways you mentioned.

    Thanks for your work

    BB

  128. People say that other’s should “Not” push someone with a brain injury to the point where it becomes the hot zone for that person, well it has gotten to the point where people have pushed me to the point where I have self harmed myself because of the things they have done, said and their actions!

    They don’t realize how dangerous it has gotten where I have actually self harmed myself because of their crappiness. I have ” EXPERIENCED” people laughing, joking, and telling me that I bought it on myself kind of thing.

    They don t realize that they are causing me anguish, despair and anger to build up to the point where I begin to consider dying instead of going on with my life. Yes, I choose to take action and self harm but they choose to be mean, hurt me, spiteful, and jerks with their words and their behaviors that cause me so much stress.

  129. Hi there – Don’t quote me on this to clinicians and mental health professionals, but I think that self-harm is a lot less catastrophic than people make it out to be. Tons of people do it, and I’ve done it in the past, myself. I don’t have any scars from what I’ve done, but I’ve definitely hurt myself — bruises, and probably a few additional mild brain injuries in the process. People get so freaked out over self-harm, like it’s something no one normal ever did. Ridiculous. People self-harm in hundreds of different ways, whether that’s working themselves into the ground, or playing so hard at a game that you’re in pain for days after, or the hundreds of other ways we bring the pain to clear our heads.

    Pain can be clarifying — the body is built to calm the whole system, when there is enough pain or injury. For some, that is the only option to stopping the crazy inside their heads. I’ve been there. I’m there a lot less, because I realize that I was probably making things worse for myself in the long run with my short-term solutions. But I can’t say I’ll never be there again.

    One thing you might want to consider, if you don’t want to self-harm, is the scene from “Hitch-hiker’s Guide to the Galaxy”. Don’t get me wrong – I am not making fun of your situation, but I think of this a lot. Arthur Dent, the main character, was taken prisoner by aliens who tied him up and tortured him by reading bad poetry to him. At first, he was so miserable, he wished he had never been born. Then on second thought, he realized it would be much more practical if THEY had never been born.

    Again, I’m not making fun of your situation. I think about this, when I think of my own situations a lot. I have been there a lot in the past, myself — “feeling anguish, despair and anger where I begin to consider dying instead of going on with my life”. I think a lot more people do, than will admit. The thing is, all this can change. I’ve found it changes for me very quickly — sometimes it only takes a good night’s sleep to deal better with it. Or I distract myself, because I realize that killing myself is a permanent response to a passing situation, and I am way too proud to let other people dictate what I’m going to do with my life (or death).

    I guess I’m just stubborn. People can suck, that’s for sure. And maybe it’s my age, but I just can’t work up the energy to let them get to me anymore. Of course, I’m saying this first thing in the morning, after a good night’s rest, so the world looks very different today than it did yesterday evening. But I guess that’s the point — everything changes. And no matter how much power others may seem to have over you… they actually don’t. No one can MAKE you respond to them in any way, unless you agree to it.

    My suggestion: Stop agreeing with them, stop cooperating with their little manipulations and games, and get your own life back. For you. Anyone who is cruel and unkind to you — screw ‘em. They’re not worth the time or the energy. It’s your life. Do what YOU damn’ well please.

    Good luck.

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