Note to self

Dear self –

You’re not going to find the answer to this through science.

Science isn’t interested in finding answers. Science is interested in finding a reason to do more science. And the moment it finds an answer, it ceases to need to do science, hence… no answers.

If you want answers, you’ll have to look to art. And music. And dance.

Storytelling. Metaphor. Fable. Myth.

The hero’s journey is not a double-blind controlled study funded by pharma.

Dear self –

keep looking.

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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.

8 thoughts on “Note to self”

  1. okay so here’s the question –

    If you could imagine the ‘answer’ what would it look like? a return to your neurotypical self? and what would that be – you at 5? at 14? at 25?

    And what would you lose – would you be the kid who beat up the others instead of the kid who got beat up? Is that better? Would you have not developed your skills, your writing, not examined your life because you didn’t have to? Would you have been the CEO of AIG? Is that better? What capacity for human feeling or compassion would you trade?

    What would the answer mean to me? To take back the losses, the cognitive frustrations, to have ‘my’ brain back – but this is my brain, and it has capacities and interests and strengths it didn’t have before – not because of the accident but because of how it rose to the challenge of the accident. Otherwise I too could have been CEO of AiG – and a real ass at that. Besides, who knows what i was before anymore, and before what?

    At least I can keep striving, shaping, challenging, doing what I can – but if I was born with less capacity, if I was autistic or my sensory systems were missing, I wouldn’t even have that. Would I be less?

    There is no answer – and that’s actually okay.

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  2. The answer – for me – has very little to do with concrete specifics, such as neurotypical capacity, particular behaviors, or set activities. It’s not about “getting back” the things that I have lost along the way, patching holes in a leaky boat, or rotating the proverbial tires on the vehicle of my life.

    It’s not about achieving specific things. It’s not about reaching specific milestones. It’s not about what I get or what I have or what I do. It’s not about earning degrees or credentials. It’s not about adding on however many items I can manage to my already pretty impressive resume.

    For me – and I’m sure it’s different for everyone – it’s about quality of life – Quality of Life. Now, it’s not necessarily “good” quality or “bad” quality that I care about. Life, if lived fully, carries plenty of both. Rather, it’s about really having an experience – strengthening my innate and abiding ability to engage fully with life on every level, as only I can do it.

    For me, the answer lies in being able to accept the difficulties along with the ease, to take things as they come and not be derailed by the bumps along the way. It’s about taking back my life from the shadows of self-doubt and self-recrimination, getting past the habit of holding myself back because — wait, wait, I need to think about it some more, and in the process I become completely turned around and unable to function, in a sticky goo of analysis paralysis.

    For me, the answer is not measurable in dominant paradigm terms. It’s not about what the rest of the world says success is, or the Secret is. It’s about having a life. Experiencing it fully. And allowing myself to be where I am, as I am, moving towards what I can eventually become and contribute to the greater whole. It’s about seeing possibility and having hope of realizing dreams and visions — and if the old dreams and visions I once had aren’t happening the way they need to, revisiting them and asking if I really want/need them after all.

    It’s about living my life, fully engaged and involved. Loving and living and learning and continuing on in the face of whatever comes across my path. It’s about having a life, period. Not getting caught up in external definitions of success or achievement, and certainly not buying into the judgments of others (whose judgment is probably just as flawed as mine, on a certain level). It’s about achieving balance and not living under the rule of fear and anxiety and mindlessness, driven like a herd animal by unseen forces I can neither control nor fully comprehend… and out of that independence comes true success and achievement, which is utterly unique and has its own individual flavor.

    The answer, for me, is an ineffable yet very real sense of being present in the world, of being fully engaged, and having meaning in my life. It’s about getting out of my head, out of my internalizing focus, and not letting my talents go to waste. It’s about examining, understanding, and placing what I know of myself in the larger context of the world around me, so I can contribute what I can to the Great Flow, so that I am not the only creature who benefits from the gifts and talents I have to offer.

    Come to think of it… bottom line is, it’s not about ME (what seems right or what seems wrong) — it’s about what I have to offer to OTHERS to literally make the world a better place to live, no however small or large a scale I can manage.

    On those terms, and in that sense, there very much is an answer for me. And that’s okay, too.

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  3. I agree with you and think that makes perfect sense but what then – and I mean this sincerely and perhaps hopefully – could science or medicine or support agencies or anyone offer for mild TBI individuals that would be the ‘answer’ to enable what you have eloquently described?

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  4. First and foremost, I’m thinkin’ that consistent, quality information about TBI that isn’t half-baked, fatalistic, and/or compromised by commercial interests could be one of the first things that are offered. It’s not like there aren’t any TBI survivors to verify the info against…

    Second (but of equal importance) would be counseling that is based on solid neurology, as well as psychology, and not the product of — again — commercial compromise or bogus shrinks with an agenda (okay, so I know THAT’s a tall order 😉

    Third, medicine could offer us real answers — as in, access to diagnostics and imaging of our brains and bodies (and those of others), which is accompanied by explanations about what these conditions can translate into in people’s personal lives.

    Fourth, support agencies could reach out to first responders and law enforcement agencies and actually educate people on the front lines about how to treat us.

    Fifth, the school system infrastructure could introduce neuropsychological testing at an early age to establish a baseline for individuals AND familiarize educators of both the strengths and the relative weaknesses of the student population, so that the strengths can be strengthened, and the relative weaknesses can be compensated for and taught around.

    Sixth, Nova could run an extended series on life with a rewired brain. And Lifetime and Hallmark could make holiday movies about real-life characters with TBI. Visibility could be raised in a way that’s informative AND entertaining to demystify and destigmatize the situation.

    Seventh, Joe Biden could “come out” as an mTBI survivor and go on a speaking circuit to show that TBI doesn’t need to be the end of the road (I hear he had an accident, and after that became much more prone to gaffes).

    Eighth, no children would be required to play dangerous sports in school, including gymnastics and football. Kids who had verified vestibular issues or showed signs of PCS would be allowed to play, say, badminton. It’s not a bad game, really. It’s actually a lot of fun! You get to hit something that isn’t going to knock you out if it hits you back.

    Ninth…

    I’m getting tired. It’s been a long day.

    Needless to say, it’s a mighty tall ordered wish list. But those are some things I think could actually help.

    Thanks for asking.

    BB

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  5. 1. Consistent quality information…. Over the past few years I have seen the quality and availability of information increase exponentially. As I mentioned brainline.org is a great resource. ABIN-Pa and BI-IFEA are two other grassroots organizations – one a local chapter that is very active and the other a web based group with many subset topics with extensive memberships and resource links. And the DCOE has tons of information, including many daily information bulletins and news updates on research, and studies.

    The Brain Injury Association of America has a very deep site and many individual states have great BIA sites with lots of material, presentations, white papers, events, video clips etc as well as links to site specific topics – Wisconsin, NJ, New York, Pennsylvania, California, Kansas are just a few of the state groups that have extensive websites. I am also involved with a project to create a single point of access/repository for all materials produced or available through these individual brain injury organizations creating a consolidated library of information for free public use.

    Individual hospitals that are part of the Models of Care System produce a large number of research reports and papers – available through their individual sites, the BI Models of Care site and through the COMBI site. The Dana Foundation has a lot of brain research information. And then there are special sites like Orlando etc.

    Is the information quality? I’d say for the most part yes, it comes from studies and current research and people in the field. Some sources are more open to ‘outside the box’ stuff such as HBOT, TCM, neurofeedback, meditation, yoga, etc etc. And some are more conservative in their approach. Generally special interests groups are NOT involved – such as the pharm industry – but of course any given research group has bias and their own perspective. It doesn’t invalidate their data but it may make it more applicable to an individual demographic or subset. How much does commercial money influence people? As much as it does with heart medicine, diabetes, etc etc. – that is to say that they give more money for certain kinds of research. But the range of studies is promising and if the results yield something positive the money will likely follow.

    2. Psychology based on neurology. Emotional experience changes brain function. Brain function alters emotional experience. Chicken/egg. We know little about mental illness and less about brain injury. Again, I DO NOT believe that they get treated the same but a brain is a brain is a brain and sooner or later we will stop dividing things into neat packets of emotional/physical and recognize that they are all contained in a singular individual. Hopefully we will also stop pathologizing a lot of behavior and see some of it as potentially self-regulating IF we use and react to it correctly.

    Medicine in general is still an art – I would say that I have experienced about a 50-75% ‘failure’ rate in physical medicine – misdiagnosis, bad attitude, indifference, wrong treatments, overbilling etc etc. Some of this has been linked to my insurance status and some of it is linked to the skewed demands of the health care industry, and some is just human error. Psychology and psychiatry – the uneasy siblings – are worse. Psychiatrists tend to favor more serious diagnosis and prescribe drugs – because they get paid for that – insurance companies don’t pay for them to do ‘talk therapies’ for general neurosis. Psychologist range from social workers to Phd’s – and they can take any number of approaches, from classic psychoanalytic to cognitive behavior – no approach is ‘right’ or wrong – but each works best for different individuals (and some suck for everyone).
    In general I have never met a psychiatrist professionally that I liked (I do know one personally that I like however). That’s my bias toward the profession – now mind you I have only had to ever deal with 2 professionally (post TBI) so my data pool isn’t very big – but I was underwhelmed in both cases. My experience with psychologists (pre-tbi) is broader and my evaluation of them is that they are a little worse than general medicine in bang for the buck – I’d say about 90% of them were nice people, but ineffective. This is not necessarily their fault – they just weren’t the right people for me (and in truth I would say that 90% of the therapists I know went into the field because of issues in their own lives, which may color their perspective).

    Neuro-psychiatrists and neuro-psychologists have more specific training in understanding the organic/physical nature of TBI – though again, much of the knowledge is based on moderate and severe TBI and not mTBI. They each however may use different approaches however in responding to a patient. The neuro-psychiatrists tend to still be the drug guys and the nuero-psychologists tend to be the therapy/eval folks. Among the neuro-psychologists there is again, like with the general population, a range of approaches and styles employed.

    In the neuroworld there are neuropsyschs who do the testing and there are those who provide ‘treatment’ – they should not be the same. I have met testers who were compassionate, helpful and communicative – and others who were nice guys but I felt were pedantic and controlling. On the therapy side it’s the same – one neuropsych was the perfect fit for me – they empowered me in many ways – the other was nice, supportive and friendly; but didn’t ‘get me’. However, in most of these cases I would say that the people were not driven by agendas or commercial compromise. To SOME extent psychiatrists are – because they are generally not paid for basic therapy and so their role is to dispense drugs and verify if the drugs are helping. It takes a firm and determined person to express what they want and get it in many circumstances when it comes to TBI – because you are considered a priori impaired. Again, this is because in many cases of brain injury, especially severe ones, behavioral problems, confabulation, labile moods, suicidality, aggression, etc present intermittently and so the docs attempt to treat with the assumption that these situations exist. They are not trained to look at long term, alternative therapies etc – just as most medical docs treat the problem and spend less time or energy on prevention or alternative therapies.

    As I said the neuro-psychologists also use their own style –and each persons style may or may not be appropriate – it depends on gender, age, degree of problem, personality, types of issues, training place, and yes, to some extent their bias in the demographic they deal with. When you find someone who is effective it is a very positive experience and a trusting relationship and INCREDIBLY helpful. But it is not easy to find – there are only so many neuropsychs available and of them even fewer who might be a good match for you. In a rehab program you may not have a choice – you get who is assigned to you. The training programs for this specialty are slowly growing but up till now its been small. Also the awareness of mild TBI is relatively recent and so people with experience in this population is also small. Little research has been done with populations such as yourself- mid-age adults with mild TBI’s who are high functioning, high native intelligence, integrated into society but struggling with a variety of issues because of TBI. Sometimes other TBI survivors can play a helpful role but a good neuropsych will work with you for years to help you re-integrate your life, establish a sense of self and allow you to accept and define appropriate and meaningful limits and self-management. This is very important – but no one is really keen on paying for that.

    This is still a buyer beware situation and unfortunately due to the way our health care system works most of us cannot really choose or receive the duration of care we need – this is a factor not of the professionals but of the economic situation and the choice the American people have made in how to deal with healthcare.

    3. Real answers in medicine. Diagnostics are VERY VERY expensive – the functional MRI’s that MIGHT show organic damage are extremely costly and are used now ONLY for research – in part because the question is ‘what is the value add’? Right now they cannot determine if those results are meaningful or not. Yes, I would like to have an fMRI done and see how I compare – because I like tests and scores and evals. But in the end it’s really your judgment of your life that will matter. Those tests are still not considered acceptable evidence of anything. Having everyone who has had a bonk on the head take one would bankrupt our healthcare system even faster. And in many cases they aren’t enough – the injuries experienced by boxers, football players etc are only detectable through brain autopsy after death. Even the neuropsych tests are of limited value.

    4. Reaching out to first responders etc through education. This is being done with more and more frequency. I have been involved with work that includes going to police training sessions, first responders, health care personnel etc and educating them. Other programs focus on teachers and school psychologists. Others seek to talk to homeless shelters and prisons, psychiatric institutes. However telling people this is only the first step. Bias and prejudice about brain injury remains – even among those who are advocates. What percentage of brain injured persons WORK (not volunteer) for brain injury agencies? Still, progress is being made – what is often needed is volunteers; people willing to go out and talk about this. If you were interested I could direct you to a link which could guide you to agencies who need assistance – or contact your state BIA and ask them. There are often specific topics that need to be covered and communicated so its not a ‘freelance’ sort of thing but yes, cops, ER docs, internists, EVERYONE should be made more aware of this.

    5. Neuropsych at an early age. Neuropsych testing is very expensive (I know I sound redundant) – anywhere from 1K to several K depending on the extent of the testing. In fact however much of the basic neuropsych testing is really IQ testing. Having this done for everyone may not prove to be effective – while IQ stays somewhat the same over time for a long while your brain isn’t fully developed until your mid-20’s. So injury and impact of injury may not be evident or may heal over time for a younger person than for an older person – thus a single injury at 16 may be initially more severe but less lasting in 10 years than a less severe injury at 30. Initial testing may suggest that the 16 year old is in ‘worse’ shape (lost more cognitively) but in fact the 30 year old has more lasting and life altering issues. Furthermore after mid 40’s and 50’s you experience ‘natural’ cognitive declines in some areas (and improvements in others perhaps) – so slower processing and memory issues do occur regardless of injury. A test done at 12 will have no meaning for a 42 year old with a head injury. Neuropsych tests are evaluated against a norm – that norm is age and gender related and also, to the extent it can be verified, against a general pool of similar background folks. So if you are a college grad, working a professional job your pool will be similar. Some of the functions tested are usually not susceptible to mild TBI and so they give a good sense of a persons ‘standard’ IQ. Furthermore people’s life experiences, drug usage, alcohol usage, activity levels, emotional status etc. will all impact cognitive measures especially over time. It has been suggested that some broad testing be done for those in contact sports – it may be a good idea for teens but younger than that I am not sure it means much. And it is still just a guideline. Remember that losing 20% of your cognitive score if you are 150 IQ means that you are still ‘superior’ IQ wise -if you lose 20% of your score if you are a 100 IQ (average) that means you are now low average/borderline. Yet the higher IQ person ‘lost’ 30 points where as the lower IQ ‘lost’ 20 points. Clearly both will experience this in some fashion – how will it effect them differently and what does that mean for treatment, life quality, etc? Furthermore where did they ‘lose’ it? Working memory? Visual memory? Auditory? Logical sequencing? Speed of processing? What compensatory skills are available? And what is the persons attitude toward utilizing compensation?
    When you go into a rehab program after an accident they do a partial neuro to determine if you need rehab, then at 6 months they do an eval to determine if you are improving and to what extent and then they do a year one to establish where you are and likelihood for ‘full’ recovery or other issues. If you are lucky you can get another one a year or two later. But even in with those tests you are still whistling somewhat in the dark. Neuropsych testing is only one view into cognitive functioning and a score of superior may not mean anything if you experience an different kind of thinking process at 45 – one that doesn’t feel like ‘you’.

    Most educational programs talk to teachers about learning styles and various forms of intelligences. Teachers recognize this but given the limited classroom time, the structure of the curriculum standards, and the demands of the system they often cannot develop individualized programs to address students strengths and weaknesses. Furthermore THEY as teachers have strengths and weaknesses – a logical, sequential teacher of math may have a hard time communicating calculus concepts to a visual creative thinker. Someone who cannot multi-task and has a poor working memory may have a hard time picturing the convergence of events that started WWII. In 1975 Special Education became required; since that time the number of special ed programs and students has doubled and even tripled. This includes learning disabilities such as sensory issues, modality issues etc – as well as gifted with learning disabilities. However these programs struggle to keep up since there is not much funding and mixed community support among the ‘abled’ populations who feel it is a limitation on their children’s education to have time in class spent on those with disabilities. Schools do try to teach ALL kids organization skills, time management, prioritizations, outlining, reflection, process and procedure, logical thinking steps etc. It doesn’t always stick, even for neuro-typicals.

    6. Nova, Lifetime, etc. Sure – and if there is commercial value they will do something eventually – I am all for this- I’ll even volunteer my life story  . They are doing a special on Temple Grandin this week, I am psyched – I spoke with her at length about TBI and autism. I am big on raising general population awareness. But……(yes, I know I have a lot of buts…) the majority of TBI’s are sustained by teen/early 20 year old males while driving under the influence. Many of these folks have problems with alcohol BEFORE their TBI, many have limited education and skills. The other big TBI population is the elderly; who we assume ‘naturally’ have cognitive issues and so who cares if you are 72 and can’t remember stuff. As with AID’s when we perceive that a select subset of the population is susceptible we tend to believe that the subject doesn’t matter. ESPECIALLY if we can associate a poor sense of moral value with those who are inflicted (or less value to society). Our lack of knowledge about mTBI made this worse – because we didn’t know about the zillions of folks who had mTBI’s from bonks on the head in simple accidents or falls and were now struggling. The war has brought our attention to this and sadly (because that is what it took) for that I am grateful.

    Log onto a discussion or blog about health care in America and you will hear how people DO NOT want to pay for others, do not want to spend money on disabilities – how they resent anything that resembles care for all. The US has the highest prison population in the world – if in fact 80% of those are TBI folks who never got treated and fell into drugs/alcohol etc what does that mean to us? Ditto on the homeless. Maybe we need to rethink this, huh?

    Joe Biden – well maybe but I doubt it. Look what happened to Eagleton. You are asking a lot – brain injury has far to go – farther than mental illness and mental illness is still in the closet for the average person. Like I said – how many brain injured people are hired by the advocacy agencies? Who on Wall Street or what CEO wants to say ‘I have am a mTBI survivor’. Unlike cancer this does not seem to be something a person can ‘move beyond’. Bob Woodward does his circuit and that’s good but frankly this isn’t about the rich and the famous – if I had a secretary and money, a supportive family, a good job etc etc I too could do a lot more stuff. But instead I have to scratch out an existence and start from the bottom. That’s the story I want to hear. Regan ran the country with Alzheimers – but if he were an ordinary citizen he would have been destitute.

    7. Dangerous sports – I am with you on this – and as you pointed out however the glamor of it and the allure of big money is so great that its hard to convince people that its that dangerous. Teens do not have fully developed brains – and so they believe they are immortal and have little impulse control – a ding is heroic not life threatening. The football tough guy gets the girl. But girls are experiencing a similar pull – being a tough girl on the soccer field is appealing – no one messes with you. Parents have a lot of ego invested in their kids sports. Like with cigarettes the problems don’t show up for years and then it is too late. I have talked to many people who say that the money these guys get makes the risk worthwhile. One of the major weekly mags has a cover story on football this week – havent’ read it but it will be interesting to see what they say. I can’t choose for others but for me – forget it, I wouldn’t take the risk. BUT – I believe in physical activity and I believe that some risk is necessary and acceptable for life. Riding a bike can be dangerous but its also healthy – yet stationary bikes are boring and schools don’t have trail riding programs.. Furthermore detecting PCS is very difficult in kids. Till we have better evaluations methods we aren’t going far on this one.

    8. As you can see from much of the above the problem is money for research, money for coverage for treatment, money to create training programs that work, money for vocational services and money for education for professionals and the public – etc. etc.. The politicians and the American people have this in their hands – you have x number of dollars; spend it on war machines or spend it on healthcare issues – you decide. The awareness is growing but, especially in mTBI there is still a huge gap of knowledge and a lot of fear and mis-understanding. It is difficult to speak out because one risks jobs, acceptance etc. But it is difficult to remain silent when so much is at stake.

    I will never recover what I lost – and I don’t mean cognitively but I mean in life, in being able to live with dignity and quality and peacefully. At a minimum I would like to prevent that from happening to anyone else.

    Sorry this is so long – I hear you about this – and it will take extensive effort by the very people who least have the capacity for it – the survivor themselves – to push for awareness, support, education, and mostly funding.

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