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!!!
38 comments
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November 17, 2008 at 12:19 am
Mark Bennett
BrokenBrilliant,
Thanks for blogging.
Mark.
November 17, 2008 at 1:56 pm
brokenbrilliant
Mark -
You’re very welcome
BB
March 20, 2009 at 1:57 pm
ResilientHeart
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
March 22, 2009 at 10:26 pm
brokenbrilliant
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
March 31, 2009 at 2:03 pm
Julie Nusbaum
Hey, wasn’t sure how to get in touch with you. I wanted to thank you for commenting on “integrative medicine is evidence-based” at The Rogue Tomato (http://theroguetomato.com). Your comments are appreciated
great site!
March 31, 2009 at 8:39 pm
johnn schultz prc az
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.
April 1, 2009 at 12:21 pm
brokenbrilliant
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?
April 5, 2009 at 2:47 am
M
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.
April 5, 2009 at 1:39 pm
brokenbrilliant
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
April 5, 2009 at 2:47 pm
Thinking about TBI “recovery” « Broken Brain - Brilliant Mind
[...] Have you experienced a brain injury? [...]
April 13, 2009 at 10:43 pm
Mary Beth Camp
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
April 14, 2009 at 1:14 am
brokenbrilliant
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
April 18, 2009 at 6:31 am
Jim Zaccaria
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?
April 18, 2009 at 2:03 pm
brokenbrilliant
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
April 29, 2009 at 4:16 pm
Michelle
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.
April 29, 2009 at 10:45 pm
brokenbrilliant
Thanks for your kind words – and you’re very welcome!
Absolutely – I would be delighted to add you to my blogroll. Consider it done.
BB
June 1, 2009 at 4:55 am
Anonymous
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.
June 1, 2009 at 11:30 pm
brokenbrilliant
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
June 13, 2009 at 4:38 pm
Anonymous
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.
June 13, 2009 at 7:47 pm
brokenbrilliant
Indeed we are… I just hope that the people who who are best served by we have to say are able to benefit.
June 14, 2009 at 2:09 am
Rini
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.
June 14, 2009 at 12:47 pm
brokenbrilliant
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.
June 15, 2009 at 12:23 pm
Anon
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.
June 16, 2009 at 12:20 am
brokenbrilliant
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?
June 16, 2009 at 2:03 am
Rini
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!
June 16, 2009 at 3:34 am
Anon
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!
June 16, 2009 at 10:14 am
brokenbrilliant
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
June 16, 2009 at 10:16 am
brokenbrilliant
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.
June 16, 2009 at 12:05 pm
Anon
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.
August 5, 2009 at 7:22 pm
Dancer
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!
August 6, 2009 at 2:41 am
brokenbrilliant
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
August 10, 2009 at 10:22 pm
ekiM
thank u
August 11, 2009 at 12:14 am
brokenbrilliant
You’re welcome
October 7, 2009 at 9:20 pm
NM
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.
October 8, 2009 at 1:23 pm
brokenbrilliant
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
October 8, 2009 at 3:22 pm
CM
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.
November 30, 2009 at 12:31 am
tom tatlock
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
November 30, 2009 at 12:34 pm
brokenbrilliant
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