If I had gotten help for my TBIs sooner…

I have been wondering a lot about how my life might have been different, had I gotten help for my TBIs when they happened.

If I had gotten help when I was 7 and fell down the stairs, and again when I was knocked out by a rock when I was 8… If I had been given strict orders to rest, and then watched carefully and given extra help in school and life to teach me better how to deal with classroom and social situations… not to mention being treated as an injured person, rather than a bad seed… I wonder if my grades would have been better and if my talents would have been better used.

If I had gotten help after my sports concussions in high school… again, being forced to rest, sit out of sports, take it easy, address my balance issues and get help dealing with social and attentional issues… I wonder if I would have slipped so quickly into drugs and alcohol (that numbed the pain), or if I would have been such a contrary rebel who didn’t have a good grasp on the consequences of my choices.

I wonder if my grades might have been better, if my academic career might have been better, if my ability to pursue opportunities might have been better, earlier on in life… which could have made a difference in my career path, my ability to earn, my ability to pay taxes, my ability to hold down jobs for longer than a year or so.  I wonder if I would have become so fond of risky ventures and certain kinds of danger. I wonder if I would have chosen the friends and associates I chose over the year — many of whom were bad choices, and I never realized it. Till too late. I wonder if I might have sustained some of my friendships with people over the years who meant so much to me, but whom I hurt terribly because my brain was broken and I had no clue.

I wonder if I might have been able to really contribute something of value to the world — a great book or a great discovery or a great body of research… Or just steadier, more reliable participation in my society and culture. I wonder if I might have achieved a level of participation that, given my personal commitment to make the world a better place whenever and however I can — might have helped people more than I have, thus far.

I usually get upset at tax time, when I look at how much (or little) I’ve earned and paid out, and I think about how much better I might have done for myself, had I not been so injured so often over the course of my life… so impaired… so under-achieving… so clueless about what was wrong with me. Now, I don’t want to feel sorry for myself and I don’t want to punish myself for things I had no control over. My injuries started when I was a kid, and they pretty much changed the course of my life without my understanding how or why. I know with all my heart that I have been tremendously blessed in so many, many ways. But I always feel a sense of inadequacy around this time of year. I just don’t feel like I’ve done enough with myself. I haven’t made the most of my potentials. What a waste.

On the bright side, a Washington State concussion bill would help protect young athletes, which is truly awesome! My injuries are part of my past, part of my present, and very much a part of my future. I never got adequate help after my concussions, when I was a young athlete. My chance at full recovery immediately after hard tackles, falls, and various accidents may have passed me by, but for lots of young kids, that doesn’t necessarily need to be the case.

And that gives me hope for our future.

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Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

6 thoughts on “If I had gotten help for my TBIs sooner…”

  1. BB –

    I have been thinking about your recent posts…
    The models of care for TBI are based on many of the earlier notions of brain injury which reflect attention to severe injuries or major stroke etc – significant focal deficits and impairments. They also reflected how little was known about the brain – so the assumption was that after one year little would change etc. Today neuroplasticity is a recognized phenomena, neurogenisis is also largely accepted, changes and improvements in cognitive abilities years afterward etc – all altering understanding of the brain. In addition there is recognition in the past 10-15 years of MTBI and how significant it can be in people’s lives –before this the idea was dismissed, if you looked ok you were ok. Alas, there remains great ignorance and rehab approaches for MTBI should not necessarily be the same as for folks with major injury. But the healthcare community is still pretty ignorant – or perhaps they are comfortable just extending their methods to this growing population of mtbi folks as a lucrative source of income without really asking themselves if they are making a difference.

    We live in a society that likes to pathologize anything that is more than one standard deviation from normalized tables – and that is especially true of cognition and behavior. This legitimizes psychiatry (which was struggling after people started getting disillusioned with Freudian analysis) and is encouraged by the drug manufacturers. The American public goes along with it because of our cultural drive for the ideal, the perfect – and oddly our dislike of the health care system encourages big pharms to market directly to the consumer who then sees meds as the be-all and end-all road to perfect, normal, the ideal.

    The problem with this is that its a skewed notion of ‘normal’. You, for example, are extremely bright – that alone makes you ‘abnormal’ in our society. There are quirks and behaviors that go along with bright – I have done a lot of work with Special Ed and learning and memory before I had my accident so I have some knowledge of this – and again, only in recent years have gifted kids gotten support in their ‘uniqueness’. Now our society will embrace the gifted if they are ‘successful’ (make a lot of money) but it takes a certain amount of good fortune for that to happen. So from the start you are abnormal by virtue of being smart – and if you were not given good guidance or support your intelligence alone can be a ‘deficit’ in our society placing your outside the norm. I don’t know if that is indeed what happened but I am suggesting that your starting point is already in a place where they don’t have good understanding how to help a really bright kids channel their intellects – especially if they are creative or generically bright (rather than science or math oriented). Then you had brain injuries and it gets more complex.

    Now one of the things I haven’t seen you talk much about is the ‘loss of self’ that many tbi folks experience and the struggle with a new identity. This is a big theme in my own life, my own rehab and among others I communicate with. For me it extends beyond tbi due to a series of other changes (rather major) that occurred both just before and just after my tbi – things that changes the almost every facet of what I might use to describe ‘self’ and left me questioning. However it’s a common theme in tbi – your brain gets changed and it literally feels different. Steve Pinker I believe has a book called the feeling of thought – and I can tell you that my thoughts do not feel the same. Damasio says that almost all his bi patients experience a sense of alteration of self, – excepting those with a particular form of localized damage. That is they literally have some ‘person’ inside who says I have had a change – but they may not know what the change is or what they were like before. They can only attest to difference.

    This struggle with ‘self’ comes from, in part, to the change in the way a person thinks – part of you is still ‘old me’ and part of you is ‘new me’ – and they don’t communicate well at times. It may be that many of the frustrations and confusions that bi folks experience are a result of this. When my child was growing up I noticed that she often went through difficult behavior periods just before she made a major cognitive leap – then she would settle down and kind of plateau, then the behavioral changes would start up, peak and then settle with the emergence of a new cognitive sill. I think tbi folks go through this as well.

    Furthermore I see self as being the familiarity with and efficiency of our thinking processes. As we go through life we become familiar with our brains functioning – and in turn refine it – and that becomes the basis for ‘self’. I wonder if you don’t mention it as much because you had multiple injuries – so your self was constantly being reshaped in smaller ways till this last incident – thus you are not necessarily as atuned to a ‘loss’ of self as someone with a single accident provoking a tbi. I mention this because I think it illustrates the complexity of issues involved and how what works for one person doesn’t always work for another – even in addressing mild tbi. On top of which the longer period of time you go without recognizing that these are physiological changes to your brain the more you respond to this from an ‘emotional’ level – which in turn makes its own biochemical changes to your brain. Stress, life circumstances, age, community – we cannot separate those things out of the mix.

    This brings me back to the issue of pathologizing things. I had a great neuropsych therapist who made a huge difference for me because she kind of moved me away from thinking about life with tbi and me to just thinking about life and me. We easily say he/she is brain injured but what we should say is he/she HAD a brain injury – that is we have to not become our injury. At the same time the idea is not to dismiss it or to minimize what it means in our lives. For example – I used to lose track of what I was saying a lot – but I was so self conscious of doing this that it made it worse. Instead we focused on what response would ANYONE have if they lost track of what they are saying. There is the strategy and the reframing it takes away the sense of ‘deficit’, failure, stigma which exacerbates the problem. You get all these tests, see all these docs and therapists etc and after a while you begin to doubt who you are, what you are. You feel you have to prove that you are normal, recovered, trying hard, a good person, mentally stable etc. – all of which makes it harder to just be. We somehow feel responsible for our brain.

    I have worked in an industry which has a lot of intense, type A personalities and I am used to that kind of approach. I moved to a very different community around the time of my accident – and sometimes I feel I am viewed (by caregivers) as having ‘issues’ because I still have traits from my professional lifestyle- the intensity, the goal driven behavior. But I don’t think that I would be seen that way if I hadn’t had a tbi. I would have just been me.

    You start a new job and like anyone want to make a good impression. For you there is probably more personally at stake so that ups the ante. But think about how amazing it is that you have throughout your life developed your own ‘compensation’ strategies – and you will do that again. The ability to be at home some time is great – so you take a nap, big deal. I know folks who have never had a brain injury who cannot function without lists and planners and naps. I know highly successful people who never had a brain injury who repeat themselves, who forget things etc when they aren’t concentrating. Part of the difference is that they accept themselves and we feel our selves deficient by virtue of being changed. I do not say this is not a struggle – you are not comfortable with it – it is not familiar and efficient – but you can move to that direction. It’s easy to quit, this is HARD HARD HARD – but the change you seek will not happen of its own accord.

    You are smart – now and before. That hasn’t changed. You have strengths and weaknesses, now that you know some of them you can brainstorm (so to speak) ways to tackle them. You have values and integrity. You are thoughtful and determined. You are not someone who is sitting back saying woe is me. You have scenarios that challenge you – but you have others that you manage quite well, better than many. The diligence you show in finding solutions to your situation is a skill and reflects a positive effort to have a productive and healthy life. You appreciate time, people. You know how to reflect without judging yourself and move on.

    The past is over – even God cannot change the past. You are not the past – you aren’t even the future – you are just now, this, here. And that is 100% okay, good, valuable – all you could ever hope for.

    You are right – it’s like the Wiz of Oz – heart, courage, brain – each without the other never makes it through the journey.

    This process of trying to find answers is difficult – and it’s why I say one cannot recover – EVERYONE – tbi or not – should make an effort to assess themselves to be better human beings, to recognize their strengths and weaknesses. In the end you are the one living with your self and so you have to find those truths. There are no tests for that, no way to say this person without a tbi who made 250k and has a fancy house is a ‘better’ person than this other guy who had a tbi made a lot less but has been a caring human being, reached out to others, lifted people’s spirits, worked hard, accomplished a lot, etc.
    I hate it when people say ‘tbi/cancer/a hear attack etc was the best thing that happened to me. Nope, it sucks. BUT – life is full of ‘its sucks’ – and that is that, no value judgment, no moral high ground. This is hard – you have to let go of old habits that served you well and you have to avoid new habits that might not serve you well – and meantime you have to keep on being you – that’s life.

    The bud
    Stands for all things,
    Even for those things that don’t flower,
    For everything flowers, from within, of self-blessing;
    Though sometimes it is necessary
    To reteach a thing its loveliness,
    To put a hand on the brow
    Of the flower
    And retell it in words and in touch
    It is lovely
    Until it flowers from within, of self-blessing;
    As St. Francis
    Put his hand on the creased forehead
    Of the sow, and told her in words and touch
    Blessing of earth on the sow, and the sow
    Began remembering all down her thick length,
    From the earthen snout all the way
    Through the fodder and slops to the spiritual curl of her tail…
    The long, perfect loveliness of sow.

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  2. Wow – what a ‘comment’ this was. Thanks for the time you took to write it all. I really appreciate it. I think I’ve steered clear of the loss-of-self discussion, because it’s such a painful part of MTBI. It’s so hard for me to reconcile something as “minor” as a bump on the head with all the difficulties I’ve had and all I’ve lost along the way. With almost every injury, I’ve experienced a shift in my personality that I could clearly tell was happening… a part of me falling away, often a valued part… and not understanding why or how or what to make of it. I’ll have to post more about that – you’re right (I think you’re suggesting I should?) If so, you’re right. I should.

    And so I shall.

    I’ve been thinking a lot about what makes TBI so much more “impactful” these days, than in past eras. People have been getting hit on the head since the beginning of time, and yes, those injuries have done a lot of damage. But why is it all so important now? Why does it affect us so much now?

    More to come.

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  3. The nineties were the decade of the brain – technology and funding to support neuro research was amped up. Then the war in Iraq drew more attention to mTBI – concussive waves from blasts were causing major cognitive changes for soldiers. There is also an increasing interest from the public, as things like cognitive enhancement via drugs become reality. Add to that the use of SSI’s and the study of the brain on depression and the fact that the boomers are looking Alzheimers in the eye – even in the academic world neuro stuff, consciousness and learning (Gardner, Pink, Chalmers, Penrose, etc etc) – so it’s all come together to create renewed interest in the brain. Also there is a lot of money here – not to be too cynical – but if there are drugs to give to zillions of tbi patients – among other things – well, then… people get interested.

    Yes, the concept of self is important and what makes it – William James said it was all that a person had, all their relationships, possessions, acts – but I believe it is more – and yet less. You can strip it all away and you think you have self – and then you strip away cognitive skills, a bit there, a bit here – and you ask again, what is left – what is me – what lasts.

    This is the pursuit of neuroscientists, psychologist, philosophers, writers, mystics, and the survivors of brain injury.

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  4. Not to mention if the general public is buying books about the brain. Publishing seems to me one of the biggest profiteers of the neuro “craze”. I mean this in a good and a bad way. On the one hand, getting important information out to people, (like Norman Doidge’s The Brain that Changes Itself) is an amazing service to the general public. And publishing puts information — our most accessible “drug of choice” — within easy reach of an info-hungry (and info-addicted) population.

    But I’ve also come across a whole lot of total crap, when it comes to books about the brain. Often, the books are poorly written, really convoluted, sensationalized, and/or chock-full of information that is so dense (in many ways) that it’s virtually unusable. Even the author sometimes doesn’t seem to fully grasp the subject matter, but they’re trying valiantly to show they do, which is both tedious and frustrating to read.

    I think publishers could sometimes make more of an effort to assure that what they’re putting out is actually useful and well-written. Mainstream publishers make so much of themselves as “guardians of publishing standards” compared to little presses or indie publishers or even the blogosphere. But they’re their own worst enemies, because their standards keep slipping, year after year. I see more and more really basic punctuation and grammatical errors in books I read. And I’m acquainted with someone who was in mainstream publishing for about 10 years – they tell me that many of the activities like proofreading are being offshored to places like India, where people don’t even speak English as their primary language. As far as I’m concerned, the publishing industry has earned its threatened position as “guardians of truth” — they just keep screwing up. In big and small ways — and it’s the small ways that drive me the craziest.

    Especially when it comes to making neurological information available to people. For all the head trauma books out there, I can’t say I’ve come across all that many that really hit the nail on the head. Yes, all brain injuries are different. Yes, everyone has a different “trajectory of healing”, but the material about brain injury that’s out there is so varied and seems like it’s so all over the place, that I have to wonder if anyone knows what the heck they’re doing. Granted, publishers are in the publishing business, not the neurology trade, and their “thing” is to make money off books, but shouldn’t someone do at least a little quality control? It seems so logical to me. But then, I am a multiple TBI survivor, so maybe I’m missing something 😉

    I keep meaning to read Wiliam James. His name keeps coming up.

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  5. Read Floyd Skloot’s In the Shadow of Memory – not only is it well written and informative, and his story compelling but it strikes me because while his circumstance is very unusual (in terms of his injury) so much of what he said resonates for me. Including his discussions of self. I have written a great deal on ‘self’.

    A good book on the brain – though not necessarily injury but simply how fascinating and intriguing the brain is is D. Ackerman’s Alchemy of Mind.

    William James describes two types of people – once borns and twice borns. There are various interpretations of that but basically twice borns experience a lot of things that they allow in, they get altered – and if they come through they are more complex and more aware as a result.

    I will reply with thoughts about ‘self’ and tbi a little later…

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