What’s in a word? Finding out how we talk about #TBI and #concussion

Here are the vast majority of the unique terms in Ruff et al.'s 1996 "Miserable Minority" paper

Here are the vast majority of the unique terms in Ruff et al.’s 1996 “Miserable Minority” paper

I’ve been doing a lot of reading, lately, about the “Miserable Minority” – the roughly 10-15% of the concussed population who do not recover fully within 3 months of their injury.

I managed to get hold of a copy of the paper, and I’ve spent days reading and re-reading it, marking it up with my notes, and wondering about how to think about this.

Since I work with data on a daily basis, I decided to get some metrics around the words that are used in the “Miserable Minority” article. I copied all the text out of the paper, stripped out the citations, removed the headers and footers, then the text through a program I developed to grab the numbers of unique terms in the text.

I removed the “stopwords” — common words like “a”, “the”, “and”, etc — and I took out the numbers. Here are the top 20 most frequently used words in the paper:

Rank Word Frequency
1 her 123
2 in 114
3 she 88
4 with 71
5 was 60
6 for 49
7 had 46
8 mtbi 45
9 on 38
10 this 37
11 he 37
12 not 33
13 or 30
14 from 28
15 have 28
16 were 27
17 his 26
18 emotional 24
19 but 23
20 can 23

So, you can see there’s a pretty strong focus on the female aspect of it. And of course, there’s the emotional part, too.

All in all, there are over 1,800 unique terms used in the paper, which surprised me a little bit. I kind of expected some clear “winners” to come out, but the authors cover a lot of ground. But if you look at the larger picture (click the wordcloud image above – it will open in its own window) there is a strong emphasis on emotional symptoms and premorbid conditions.

That’s not surprising, since the paper pretty much boils down to the idea that while mild TBI / concussion is a widespread and problematic injury throughout the population, the brain injury itself is not to blame for symptoms that last more than 3 months. According to the paper, concussion issues should clear up within 12 weeks or so, and if they don’t, there’s something else going on — something pre-existing, like a rough childhood or a history of abuse.

According to the authors, mild TBI may trigger unresolved issues — or re-ignite formerly settled issues — thus causing the patient to mistake them for brain-injury-related issues. They admit that imaging is not yet sensitive enough to pick up microscopic damage. However, that was 1996. This is now. And 20 years later, we know from research that concussion does indeed cause structural changes to the brain. The damage is subtle. But it’s real. And repeat concussions result in cumulative damage which can produce significant deficits on down the line — whether due to yet another TBI (like the one I had in 2004), or organic changes that come with age.

This whole idea that enduring TBI symptoms are emotional and psychological in nature needs to be revisited. We simply know better now. And to persist in that old ideology serves neither the patient nor the provider, who may be struggling to understand why the patient is responding the way they are (or aren’t).

We know that concussion alters the brain. We know that the biochemical cascade that’s unleashed in the cells of an injured brain can have lasting consequences over time. We know that even a blow to the body can cause concussion, without the head ever being impacted. We know so much more about the mechanics of the process, than we did 20 years ago. So, why would psychologists and neuropsychologists persist in relying on outdated assumptions based on obsolete data?

They shouldn’t. They should change their “tack” with regard to assessing and treating mild traumatic brain injury in the PCS population. And that’s true for men, as well as women.

Perhaps most importantly, they need to change how they talk about PCS — and stop labeling us similar to malingerers and attention-seekers. Stop with that foolishness, already. Get your facts straight, and quit calling us names. If you can’t seem to help us, don’t assume it’s us —  maybe you just aren’t taking the right approach, and you need more (and better) information.

While Googling “miserable minority”, I found a sign of positive progress. Result #3 at the top of the page is a December, 2014 article on the American Psychological Association’s website,”Women and mild TBI“, which makes some great points about how the designation of “miserable” and “minority” blurs the topic and puts the focus on psychological, rather than organic issues, thus missing the mark in terms of understanding the true nature of “mild” TBI.

Not only that, but that choice of words / approach  runs the risk of sending

“the message that “this is all in your head” (pun intended). . .  unintentionally foreclos[ing] scientific inquiry, driv[ing] persistently symptomatic patients away from the resources meant to proffer support (to them and their families), [and] reinforc[ing] ugly .. .  stereotypes”

The article focuses only on women, but you could expand the reasoning to include men — and children — in the population of concussed folks. It’s a great read, and it comes from someone in the mainstream — a professional, no less, which gives me hope. Check it out — I think you’ll like it.

Brava to that. Clearly, there is a gender component to professional understanding and treatment of concussion/mild TBI. But only recently have researchers discovered significant differences in how men and women are brain injured and heal. It’s been a long time, coming, with countless individuals marginalized and stigmatized, simply because the folks who were treating them didn’t take them seriously.

Now that new imaging techniques are coming out and researchers are finding (and talking about) the fact that men and women may have very different experiences before, during, and after concussion, I’m hopeful that some of the really harmful materials that have steered (mis)treatment will be revised, with the harmful parts thrown out.

This isn’t isolated to women, either. PCS occurs with men, as well. And one of the dangers that comes along with a gendered focus, is that the men who suffer from prolonged symptoms may get lost in the shuffle. There’s so much activity — flurry-flurry-flurry — rush-rush-rush — around concussion, these days, that people seem to be racing towards conclusions without stopping to consider all the aspects.

Sure, it’s only human to do so, but what about the human cost?

Ultimately, it’s going to take a lot of rethinking, a lot of advocating, and a lot of promotion/publicity to get people to change course. There needs to be a compelling reason to do so, or professionals aren’t going to deviate from their preordained patterns. Even if it means they “risk coming up on the wrong side of history (again)” as the Gorgens article says, unless there’s an overwhelming body of proof — as well as incentive to go with it — providers are going to keep on keeping on their usual track.

Where that leaves us, I’m not sure.

I know there are some providers out there who are interested in learning more about how to better help the folks who continue to suffer with post-concussive issues. And I know there are some who are genuinely curious and good-hearted, who want to do the right thing. We just need more information out there about the cutting-edge research that’s being done, and some advocacy would help.

There are folks who are doing that, but they/we are few and far between.

Still and all, if we get the right information in to the right hands and provide the right motivation, who knows? We might just be able to move that needle in the right direction.

Posted in Personal Experiences with TBI | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 2 Comments

Letting the losses be losses

I'm not one for butterfly metaphors, but this one will do

I’m not one for butterfly metaphors, but this one will do

I woke up 3 hours too early this morning.

And I couldn’t get back to sleep.

My head got racing with the problems that the sleep-deprived part of me thinks it can handle better when my system is stressed.

Ha. Ha. Ha.

That didn’t work at all. After an hour of fretting, I wrote some things in my journal. I used to log my life frequently — voluminously — especially after my fall in 2004, when I lost all interest in the formerly burning interests of my life: European history, mythology, and visual design. I lost my usual outlets for my energy, which had consumed me for many a year, so I had to do something else.

I turned to journaling. Like a crazy person. “Proustian” was the name someone gave my almost-hypergraphic compulsion. It was an outlet. It kept me relatively sane, when everything around me seemed to be falling to pieces. My journals were my constant companions, when people failed me at every turn. And now they’re coming around again, as my main source of in-depth human contact is moving away in a couple of months.

I’ve got plans to connect with a few new folks in the coming weeks, but there’s going to be a transition time — a gap — when I don’t really know anyone who knows me and my quirks in a no-nonsense, matter-of-fact way.

It’s a loss. And I’ll deal with it. I just need to channel my energy and frustration and anxiety into something productive. Anxiety has been a huge propeller for me, for many, many years. This need not be any different. Cause truth be told, I’ve got anxiety in abundance.

The trick is to not let it make me mentally ill.

That’s how it is with most things with me. I have an incredible amount of energy, and if I don’t use it wisely, it can “back up” on me and make my life really difficult. Unfortunately, I never suffer alone — lots of other people’s lives can become difficult, as well. I hate to admit it, but it’s true.  So, I have to manage my energy properly, and take steps to work it off — or direct it into something productive.

It feels like I’m stepping off a ledge, here, lately, what with all the changes going on. Every aspect of my life feels like it’s going through a transition. And while the new things are exciting and look really promising, I still have to let go of things that have been with me for a while — some sustaining relationships, a reliable schedule I’ve been on for years (that’s much more critical than one might think), certainty about the company I joined six months ago, and the stability and health of my extended family.

People are getting sick. Again. Cancer. Unexplained maladies that won’t subside. Serious intestinal issues that are costing one of my very young relatives their entire colon before the age of 25. Now they have the rest of their life to look forward to with a colostomy bag. People do it all the time, I know, and there are many who make the best of it, but still… I can’t help but think that with better medical care, this wouldn’t have happened.

It didn’t need to.

And the cancer stuff, as well as other medical stuff, where doctors are telling my relatives that their half a century’s worth of massive consumption of junk food and sodas with artificial sweetener had no bearing whatsoever on the potentially cancerous masses growing on their internal organs. That’s hard to believe. Well, these are the same kinds of medical folks who were telling us only a few decades ago that nutrition had no bearing on health.

It’s hard to not be cynical. Or critical. Or not despair.

And then there’s the loss of faith in so many individuals, so many institutions, so many “givens”. Take a look into the inner workings of the mental health “industry”, and brace yourself. There’s just so little reliable information there, so little genuine expertise, so many people claiming to be experts. And all the while, those in need suffer. Terribly.

I’m one of the lucky ones. And yet, there’s only so much I can do.

So, I keep on keepin’ on. I live my life to the best of my ability and focus on the fundamentals. It’s all about execution, after all. It’s all about keeping myself steady and level-headed, and not getting swept up into the life-or-death drama that drives the rest of the world.

I need to be mindful of my limitations, in times like these, and do the best I can. And when I fall short, readjust, let go of the stuff that is holding me down, and look to the future to see what is there.

It’s not easy to let go of so many things at one time. It’s troubling and it feels like it’s life-threatening. In some ways, it is. It threatens the stability of the life I have built for myself, as well my sense of identity and capability that will carry me through. Yes, that’s an attitude in my mind. But it’s also in my blood and my bones. It has as much to do with my physical reality, as my mentality. And that’s what gets lost in the discussions of loss and change.

Loss is a physiological phenomenon, as well as a mental and emotional one. Our bodies’ biochemistry adjusts to our situations. Our physiques literally shape themselves around our lives and our routines. The circuits in our brains physically change to meet the challenges and habits of our daily experiences. So, when change happens, yes, our lives are threatened fundamentally, on an almost cellular level.

And that’s what I have to keep in mind, through all of this. It’s not all just in my mind.  It’s in my body, as well, which means that it’s all the more important to drink enough water, get enough exercise, sleep well, and take care of myself with the right food and combination of activities. Loss is physically, mentally, and emotionally difficult for me, and when I cut out any of the parts of it, the other two (or more) suffer. But when I pay attention to the whole gamut of experiences and feelings and sensations and phenomena… that’s where the magic happens.

And I can let the loss be what it is — loss — without getting caught in all sorts of drama and angst.

And I can move on.


Posted in Personal Experiences with TBI | 4 Comments

The roots of our fascism

Grab you torches and pitchforks! There's someone out there who disagrees with you!

Grab your torches and pitchforks! There’s someone out there who disagrees with you!

This is a tricky time of year / life for me, what with the political stuff going on. I have to watch my energy to make sure I don’t get overwhelmed and bent out of shape. When that happens, I tend to lose sleep. And that’s never good. A tired brain is a less-than-optimal brain. And I am a less-than-optimal person.

The atmosphere is so electrified on all sides, these days, and human folly is on full display — along with a healthy dose of dismay and trepidation about what could happen if so-and-so gets into office. Jeez Louise! I can’t remember things ever being this polarized to such an extreme extent. Even the moderate folks seem polarized to me. I’d love to sit back and watch from a distance, just observing it all, but that’s a tall order, when — as we are constantly reminded — So Much Is At Stake.

I can think of a hundred common-sense things to remind people of, that I think would put things in perspective. But that’s assuming that people want to have perspective. They don’t want to learn, they don’t want to change. They want to win — as though that will solve all our ills. Seems, these days, like everybody just wants to mark their territory and go after anyone who encroaches on it. And while all the different sides are accusing the others of being “fascists”, it seems as though the tone of every single side dances close to that line.


Fascism is not demanding that people adhere to any particular sort of message — be it “liberal” or “conservative”. Fascism is demanding that people adhere to ONE message and ONE Message Only — be it left, right, middle, or wherever. Requiring that others agree with you or be subject to ridicule, dismissal, or attack — my my book, that’s every bit as fascist as what took over Germany and spread through Europe back in the 1930s.

When we cease to allow others the right to disagree and think/feel differently than ourselves, that to me is fascism.

When we stop listening to what others think and feel — other than as a way to prove them wrong or prove that we’re right (which isn’t listening at all) — that’s the way fascism takes hold and strengthens itself.

When we dehumanize others who disagree with us, calling them names and telling them to “swallow a knife” or “die in a house fire”, because they are on “the other side” of our ideology, that has all the hallmarks of fascism.

When we go on the offensive and taunt and mock and demean the human beings who don’t agree with us, and turn out to elect those who promise to pass laws to block their freedoms, because they appear to threaten us with their differing opinions and ways of life… how is that not fascism?

And nobody has the market cornered on that. Not Trump, not Sanders, not anyone in between. Every single political camp seems to have that virulent divisiveness down to a science. It’s part and parcel of their messages.

Every nook and cranny of social media has that going on.  Except maybe Twitter — I can read plenty of things there that are not algorithmically aligned with any certain ideology. I can just follow diverse individuals and see what they have to say, without being flooded with suggestions about other things that may interest me. That’s why I’ve traded Facebook for Twitter. Facebook especially is so balkanized, so narrowly targeted to people’s ideological echo chambers, I fail to see how any revolution or progress could ever take place there.

Millennials, take note. Facebook cannot free you. But it can keep your mind and spirit tied to an ideological/political millstone that’s sinking into the muck of narrow-minded prejudice, bigotry, and hate.

For a healthy community, you need diversity. And Facebook is antithetical to diversity. If anything, its driving principle is helping (even encouraging) people to separate into “social” silos organized around only what they think — not what they may wish to consider in addition to their own biases and assumptions.

Facebook is dangerous, in that way. It’s also depressing. Which is why I don’t spend much time there, anymore.

Plus, if I really spoke my mind there, honestly voicing the full spectrum of my beliefs, I’d be pillaried, pelted with rotten vegetables, then pulled out and drawn and quartered in the center of the virtual town, as the pitch-fork wielding villagers poured tar on my bloody, oozing remains and lit them on fire, dancing madly under the orange glow of sodium lights.

Good heavens.

It’s so emotional!

Anyway, that’s my little freedom rant for today.

I think I’ll go to the pool early and have a nice long swim before I head to the office.

Gotta work out this energy in a positive, productive way.


Posted in Personal Experiences with TBI | Tagged , , , , , , , | 3 Comments

After #concussion and #TBI – WHY must so many suffer?

Note the village in the distance, far,far below.

Note the village in the distance… far, far below.

There’s a reason I used a picture of Neuschwanstein on my post yesterday about “Castle Munchausen”.

First, the medicine and science around brain injuries is like a massive fortress built by the modern version of royalty — a select group of highly trained and well-positioned individuals (doctors of all types — MDs, PhDs, EdDs, etc) who have access to closely-held resources, and who have constructed an elaborate and impressive structure of methodologies and mindsets that may or may not be practical for the rest of the folks not sharing space in their fortress. Neuschwanstein was rumored to have nearly bankrupted Bavaria, but that’s untrue; King Ludwig had plenty of funds of his own. And he built an early version of a “man cave” in it, so he could get away from everyone.

Personally, I support that man cave decision. But I digress.

The other striking thing about Neuschwanstein, which likens it to the current medical context around concussions, is that it sits far, far above the abodes of everyday folk, removed in all its glory… and safe from invading hordes.

This is not so very different from the mindset I’ve observed among doctors of all types (see above). Patients are not always respected by providers. Especially brain-injured ones. I’ve observed that while hearing my relatives (who are physicians) talk about their “cases”, and I’ve been told by doctors, themselves, that TBI survivors don’t get a whole lot of respect and regard. We’re considered impaired (so it may be best to not go into detail about my concussion history). We’re often considered emotionally and mentally unstable, and can be easily labeled as malingerers or fraudsters.

And that makes us a risk to be defended against.

What’s more, there seems to be an intense balkanization of medical and scientific fields, with everyone fighting each other, jockeying for position and defending their territory. And the fighting extends to the non-medical/non-scientific community as well. What could and should be a collective effort to gather data (anecdotal included) to better understand and serve the needs of those who are desperately in need of help, becomes a pissing contest with skunks on all sides.

And the result? Suffering. Too much suffering.

There are a number of causes, that I can see.

  1. The medical education system is invested in traumatizing its apprentices. The most basic science that’s been accepted for decades, shows without a doubt that stress and trauma impacts one’s capacity for higher reasoning and learning. And yet, somehow, med schools and hospitals cling to the idea that students and residents should be on extremely long shifts that run them into the ground. This may produce some measure of more reliable care, as doctors aren’t handing off patients to others all the time, thus losing valuable insights that can save lives, but it’s also a recipe for setting the stage for physician burnout later. If it’s disruptive for doctors to switch shifts after only 8 hours, how much more disruptive is it for us to lose highly educated, experienced, dedicated physicians to burnout on a regular basis? Med schools and hospitals and the “old guard” need to take a closer look at the real consequences of their actions. This amounts to negating the Hippocratic Oath’s vow against harm and mischief, as far as I can tell.
  2. All the traumatized folks — who are bound together by shared battle experiences, much as active soldiers are — cannot help but feel they are under attack. Because they are. By their profession. By their circumstances. By the insurance companies and the government, who are often literally punishing them for practicing responsible medicine. I’m not sure of the PTSD incidence among doctors (I should look it up), but I wouldn’t be surprised if it is high.
  3. Prolonged traumatic stress trains you to be on constant watch against attackers, to be on high alert at all times. And it also causes you to misinterpret signals from others as attacks. A simple expression, taken the wrong way, can trigger defensiveness. And because all the stress impedes your higher reasoning, having a logical discussion about healthcare issues is a train going nowhere. Not only does any and every criticism sound like an attack, but your ability to process the finer details of it… well, that is pretty much fried.
  4. Survival is at stake. This isn’t just about medical doctors — it’s about all doctors, who must be licensed by certain authorities, and whose professional viability can hang in the balance due to a number of possible factors: publishing (a political rathole I’m not going down, right now), reputation, insurance requirements, professional milieu, and funding, to name a few. If you step out of line, you can lose your license. Or you can be shunned by the establishment. You may not get published. And you may not get funding for the work you need to do. If you step too far outside the lines of proscribed acceptability, you can lose everything. And you can be fined heavily for regulatory infractions. This is not a productive environment for innovation and clear thinking.

And this is really just the tip of the iceberg.

Being on the outside of the medical establishment — and indeed, a humble pedestrian patient with a history of brain injury and many failed interactions with doctors — nobody on the inside of that establishment is going to listen to me. Or, if they do listen to me, they’re never going to admit it, because, after all, I’m a patient. And a brain-injured one, at that. There’s a ton of bias against people like me, dating way back to the beginning of modern allopathic medicine (which is actually relatively young, all things considered).

The animosity / adversarial / professionally superior attitude towards patients didn’t always exist. Once upon a time, patients actually showed up, told the doctors what was wrong with them, and told them how to treat them. Since the days of the Napoleonic Wars, when patients on the battlefield were literally unable to assess and advocate for themselves, however, the concept of doctors being the unassailable Experts has taken hold. Triage — deciding who lives and who dies — has been the modus operandi of modern medicine.

Again, this is fairly recent — dating back to only 1803, a scant 213 years ago… a mere blip on the screen of human history. But you’d think this is how it’s always been, the way doctors carry on.

Anyway, what does all this have to do with concussion / TBI?

A lot. Because these elements — traumatized doctors who feel under constant attack, limited higher reasoning, pressures of conformity, and a legacy of doctors holding the reins in medical interactions — all contribute to suffering in the brain-injured population.

And it keeps us from getting help, effectively producing the “Miserable Minority” of those of us who “can’t” seem to recover from a concussive brain injury.

Modern science and medicine have done a fantastic job of alienating their participants from one another, and producing as many problems as solutions – some might say more. Under the current conditions, with everyone literally under attack by insurance companies and regulatory restrictions, guarding their territory for all they’re worth, I have precious little hope of us coming up with truly innovative solutions. Sure, there are companies that are coming up with prevention products and post-concussion treatments, but the money involved blurs everything.

It’s a perfect storm we have here.

But the only ones who truly stand to benefit, from what I see, are the commercial enterprises that can deliver products that millions of terrified parents will buy to protect their children — and that school districts will procure to avoid lawsuits.

As for the rest of us — especially those struggling with ongoing post-concussive issues — we’re sh*t out of luck, unless we A) take matters into our own hands, and B) get lucky.

I’m 2 for 2 on that count, but I know a whole lot of other people aren’t.

And that’s the thing that sucks. For everyone.

Posted in Personal Experiences with TBI | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 3 Comments

#PCS after #concussion? #TBI? Welcome to the #MiserableMinority

"Neuropsychology of Malingering Casebook" miserable minority reference

Neuropsychology of Malingering Casebook” Miserable Minority reference – click to see full-size

I’ve had better days. I worked from home, yesterday, due to a combination of bad weather and having no compelling reason to drag myself to the office. I had hoped to get into the office today, but after a couple of hours of being up, I had to go back to bed.

Migraine. Pain. Just feeling wiped out. Not sick, just all turned around, the way I get sometimes when my head and body aren’t cooperating with each other and the rest of the world very well.

Not much fun.

I did get to bed at a decent hour, last night, so that was good. But it didn’t seem to help much, this morning.

So, when I ran out of steam this morning, I just went back to bed. I set my alarm for 11:30, because I had a 12 noon conference call scheduled. I woke up a little earlier, and lay in bed, curtains closed, just trying to get myself in gear. Usually, I can. And today I could have, but when the notification came through that my conf call was cancelled — Oh, sweet relief!

And I stayed in bed. I had my tablet on the bedside table, so I checked Twitter, and wouldn’t you know, there were a bunch of tweets about the concept of the Miserable Minority — those folks who have been concussed, whose symptoms don’t clear up within a few weeks.

Apparently, it’s a “thing” — this subgroup of concussed people who don’t bounce right back the way everybody else seems to do. And neuropsychologists have been referring to us as “the Miserable Minority” (I’ll say MM for short) for quite some time. It’s still going on.

I’m not sure how I feel about that. It strikes me as just a tad dismissive. Do they intend to ridicule us? ‘Cause that’s sorta kinda how it sounds.

I’m not sure what goes on in the minds of these folks. I know that in medicine and science, having a label for a subgroup can let you talk about that group and develop uniform “game plans” for them. So, that could be handy.

I just wish they had a way of talking about us that doesn’t make us sound like a bunch of whiners, complainers, and malingerers. It also minimizes our struggles, by calling us a “minority” — as though we don’t quite warrant all that much concern or attention or focus. I’ve heard that there are conference topics devoted to us, but I don’t have the evidence to support it (yet) — workin’ on it.

Believe me, I’d much rather be at work, right now, tapping away at my company-issued keyboard, than sitting in a darkened room, having to choose between light that makes my head hurt and not getting anything productive done.

The one thing that I wish our healthcare providers would understand through and through, is that this “Miserable Minority” is made up of a sh*t-ton of high achievers, Type A folks, formerly functional superstars, and strong-spirited individuals who crave contribution to the larger world. We’re not the kind to sit around making excuses and complaining for the fun of it. Or because we want attention. We’d much rather be back on our feet, able to participate as the gifted, talented, determined individuals we are.

But because medicine hasn’t figured out how, yet, and because too many providers are lax in mastering their material, we’re stuck in this limbo.

Yes, it can be miserable.

But we’d rather not be. And some of us would give anything to not belong to this “minority”. The last thing I want to do, is linger in this foggy haze of pain and blurred senses. And I know I’m not the only one.

Posted in Personal Experiences with TBI | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 1 Comment

Lasting #concussion symptoms? #PCS? Welcome to Castle Munchausen

Munchausen syndrome is a psychiatric factitious disorder wherein those affected feign disease, illness, or psychological trauma to draw attention, sympathy, or reassurance to themselves. It is also known as hospital addiction syndrome, thick chart syndrome, or hospital hopper syndrome.



Lately, I’ve been giving a lot of thought to how hard it’s been to find decent help for my long-standing TBI issues. I’ve had more “than the average bear”, and for the past 10 years, it’s been making my life pretty miserable.

I’ve been forced to think about it, because my neuropsych is retiring, leaving a massive gap of knowledge about what it means to have TBI issues, and how to best address them.

Also, when my company is acquired, later this year, our insurance may change — to the hellish coverage I had, when I was first trying desperately to find help, back in 2007.

I had to jump through all kinds of hoops, just to step into a neuropsych’s office, and even the testing they did wasn’t completely covered by my insurance, which is just the sh*ttiest thing on earth. If I have to go back to the old insurance, I will leave the job. I hope they lay me off, anyway. I need a change, and having a little $$$ help to tide me over while I interview for my next position would be great.

My safety net (which was the equivalent of 5 years’ pay) evaporated after my TBI in 2004. Thanks for that, life.

Anyway, I keep thinking back to the days when I was so close to the edge of ruin, about to lose everything– my home, my marriage, my whole identity — and how everywhere I turned, people treated me like there was nothing wrong with me. I just wanted attention, according to them. In their eyes, I was jealous of my spouse, who had spent a week in the hospital and had medical eyes constantly trained on them for months and months after their hospitalization.

Just to be clear, I never, ever want that kind of attention. Didn’t then. Don’t now.

But that wasn’t how others saw it. Those others included my (former) friends, doctors, specialists, etc. And they kept asking me A) how my relationship with my parents was, and B) how long it had been since I last took any drugs.

Oh. My. God. It was hell. All I wanted was access to someone who could explain to me what was going on.

That’s all I needed. An explanation. A breakdown of what was screwed up in my head, and some possible next steps to move on and get my life back together.

Not drugs.

Not attention.

Not sympathy.

Oh, hell no. I’m happiest when people leave me the heck alone — especially medical folks and hospital staff. I literally only wanted answers.

But instead, it was a constant barrage of questions about why I was looking for help, why I was seeking assistance, why I thought there was something wrong.

Perhaps that’s one of the reasons that concussion is associated with a higher suicide rate. I’m sort of joking. But not.

Being all alone in this — and having everyone around you treat you like a “head case” who’s trying to get attention or sympathy or reassurance — it was pretty devastating. And I know I’m not the only one. There’s a whole science around detecting people who are malingering… and there’s a syndrome named after it — Munchausen Syndrome, named after a fictional German character known for embellishing his stories.

I’m not saying it happens to everyone. But it strikes me that within the medical and neuropsych community, there’s a fair amount of lacking regard and treatment of concussed folks.

So, if you find yourself in the un-enviable position of being treated like an attention-seeking drug addict who’s taking up precious time better used on people with “real” problems, rest assured, you’re in good company.

I wish it weren’t so.

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What’s a neuropsychologist good for after #TBI?

brain-frame-swirlsAn interesting thing happened on Twitter last night. I was checking tweets to take my mind off the back and leg pain I’ve been having, when I came across a mention  from @AllConcussion about how neuropsychologists have a  not-so-stellar history of believing that post-concussion issues will pretty much all resolve and that neuropsychs have a troubling history of dismissing concussed individuals and labeling them the “Miserable Minority”.  {side rant – how frustrating it is, to have so much great research behind paywalls – argh!}

It caught my attention, because I’m in the midst of transitioning to a new neuropsych (NP), and the process has not been simple and straightforward. My NP has been a bit cagey about referring me to someone, and they’ve seemed over-cautious about the whole process.

I was thinking there was some ulterior motive — when there’s not much transparency, I get suspicious. But now I think it’s more protective. If the norm among NPs is to dismiss concussion as a transient thing, and they don’t have a lot of respect for the Miserable Majority (of whom I’m apparently a member), then it’s a good thing that my NP is being extra cautious and not referring me to ham-handed folks without a clue.

Not that my own NP is without their own vestiges of “your mild TBI should clear up any day now.” I’ve gotten that line from them at irregular intervals over the past 8 years. They don’t actually see me as having the kinds of struggles that I do. Then again, they’re not living my experience, and they have no idea how much I camouflage and gloss over, because the thought of attacking it wholesale is so overwhelming and distressing to me, that I won’t even go there.

Nope. Not going there.

Plus — and it surprises me that they haven’t wrapped their head around this — I have been seeing them in the evening after a long, depleting day at work, preceded by a commute through idiot-filled, unpredictable morning rush hour traffic, and followed by an even worse commute through tired and cranky idiot-filled, unpredictable traffic (that’s twice as long as my morning commute), and I’m walking into their office to sit under fluorescent lights, across from a person who may or may not really understand what I’m talking about, and that’s incredibly stressful for me. It’s a threat for me, in a way.

And what, dear readers, does that kind of threat stress do the brain and body? It routes activity away from higher reasoning and subtle nuances of experience and behavior, and it puts you in fight-flight mode. Fight-flight mode over-simplifies everything, including how you relate to your circumstances, so of course they will never, ever see the real me who’s sitting right in front of them.

On top of that, my NP is infatuated with the power of medication to Make All Things Right Again. So, I have to watch myself. I can’t allow myself to appear TOO debilitated, because the whole meds thing is not for me. I have enough difficulty each day with my sensory issues, and adding a chemistry-altering (and possibly cognition-altering) drug to the mix just makes everything harder. I’ve tried to explain that to them, and they haven’t taken me seriously. They seem to believe, in some ways, that I’m just thinking about this all wrong, and that I just go see them because I’m lonely. They actually said that once, which leaves me shaking my head.

And that’s  a source of yet more threat stress.

So no, they have never fully grasped the extent of my issues, because not only am I concealing it all out of self-protection, but they’re also pretty convinced that their testing revealed the extent of my impairments — which aren’t all that much, compared to plenty of others they’ve worked with.

It’s been a source of intermittent frustration and pain for me over the years. It’s no fun, not being believed, being dismissed, etc. And they’re one of the good ones. Huh. How ’bout that.

So, where does that leave me with my TBI recovery? Actually, I think I’m going to be in better shape in another couple of months, when I can get away from the “therapizing” approach, and move on to a more consultative relationship. The new NP that’s being recommended is a great clinician, apparently. Very smart and sharp. Plus, they are into imaging in a big way. They’ve written research papers on it, so they’re a bit of a “gear head” in that respect.

In speaking with my NP, they’ve warned me away from just going with any old NP and doing the kind of work that I’ve been doing with this NP for the past 8 years. Others wouldn’t necessarily grasp the subtleties of my situation (I’m not sure what they mean by that, but I’m not sure I want to know) . And yes, upon giving it more thought in light of the awful variability of providers out there — and now this info coming to light about how NPs can be dismissive and well, kind of clueless when it comes to concussion — I have to agree.

Which is where I come to my new approach.

I’ve had it with the navel gazing that my old NP has been pursuing. I mean, it had its place for a while, but now I simply need access to someone who can consult with me on all things neuropsychological, explain function and cause-and-effect to me, help me understand the dynamics of brain and behavior, and just be there as an access point for technical questions.

I’ve needed this for years, but my old NP hasn’t been able to provide that to me. They’ve been more focused on helping me conceptualize my life as more than just a series of injuries, than going into scientific and medical explanations. That’s been helpful, yes. But I could really use access to an expert who can walk me through the details and vagaries and help me understand the anomalous aspects of my life.

So, this could be good. And I don’t have to deal with any more navel-gazing from an NP who doesn’t even realize they don’t have enough information to draw in-depth conclusions about my life and experience and difficulties.

AND I don’t have to deal with an NP who’s going to just dismiss me and write me off. The relationship I’m going to develop with them will be a consultative one, not a counseling one. I don’t want them feeding my head with more subjective “soft science” stuff. I need hard science, the facts, the explanations, the cross-references and objective recommendations. I think that’s going to save me a lot of grief. And waste a lot less of my time. And theirs.

It’s all good.


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New neuropsych identified – woot

Just keep climbing

Just keep climbing

I had a quick chat with my neuropsych yesterday, to let them know I wasn’t going to make it to our standing weekly appointment. Too much to do at home, too much going on. Couldn’t make it.

I have less than two months to see them, which seems strange, because we’ve been meeting weekly (used to be twice a week) for something like eight years. It’s the longest I’ve ever bothered with anyone (including work colleagues). It’s been an incredibly productive time, and I’ve made amazing progress. I will miss them very much.

But now there’s a new neuropsychologist on the scene — and ironically, it’s the one whose office we’ve been meeting at for some time, now. My neuropsych is retiring, and their lease ran out on their old office last year, so we’ve been meeting in this other office on a different floor. Turns out, the resident doc there is a really great clinician who I believe has agreed to take on some of the “patient load” of the retiring doc.

I did some Googling yesterday, and I found some very positive reports about them, so this is hopeful. They have a strong background in research and academia, and they are also into brain imaging. I’m not sure how that will play out or if I will have any additional imaging, but I’ve been looking for someone who’s as interested in imaging as I am – and who can read what they see. My current neuropsych is interested, too, but they’ve been far more focused on talking me out of my lousy mindsets about things — and keeping me from making rash mistakes that will get me in trouble. Or get me arrested. We just haven’t had the time to explore my MRIs the way each of us would have liked to. Time is short. We have to make the most of it, while we have it.

I’m none too keen on having more MRIs with contrast agent. Gadolinium can be nasty stuff. It’s radioactive, after all, and the first time I had it, it upset my digestive tract for a few days. I’ve read other things about it that I’m not happy about, but I understand the need for contrast agents. You’ve gotta be able to see what’s in there. Ideally, I’d love to get some fMRIs done that show the connectivity in my brain, as well as other stuff that’s there. But not if it involves more contrast stuff.

But aside from imaging, I’m hopeful that this new neuropsych will be able to point me in the right direction to handle some of the issues I’ve raised with my current neuropsych, which they couldn’t address in the time we have left. The headaches have been back, along with the tremors and tics and intense sensitivity to light and sound and touch. I haven’t been able to do a lot of things this week, because I’m so friggin’ sensitive to sounds and touch. Cleaning has been out of the question, because of the sound of the vacuum cleaner… even the sound of running water. And while cooking isn’t optional, and I’ve powered through, dealing with the clanging of pots and pans has pushed my limits.  I’ve been a lot snappier than I’d like to be, and it hasn’t been easy for my spouse.

Sunlight? While driving to work? Close the danged overhead sunroof cover, already, put on the sunglasses, wear the baseball cap pulled down over my eyes. I got my haircut yesterday, wearing my baseball cap while I was waiting. The fluorescent lights in that place were crazy — as was the glare of sunlight through the windows. I was so hunkered down, the barber who has been cutting my hair for years didn’t recognize me at first.

I haven’t spent much time discussing my sensory issues with my current neuropsych. They have been more focused on getting me socially functional, which is essential, because my conversation difficulties (thank you, short-term memory problems) have a way of getting me in trouble. With the police. With employers. With friends and family.

So, this is a chance to have a new start — without having to start over from scratch. The new neuropsych is in a location I know how to get to. I have the route down “pat”, complete with shortcuts and the best lanes to travel on the freeway, while getting there. I know how long it takes me, which helps me plan my days. And I know the best routes home, afterwards. My routine doesn’t need to change all that much — except that I’m going to be seeing them a lot less frequently, probably.  There’s another therapist-type person who my neuropsych wants me to work with, in continuing to move forward in my life with my plans and goals.

I’m not sure how I feel about that. I don’t want to spend a lot of time in “analysis” with a bunch of different people. I’ll probably trade off between the two. I do need to talk with someone on a regular basis about the plans I have and how to best move forward. And I need to talk through work scenarios that might derail me, if I stay inside my head about them.

So, this is different.

I’m none too keen on the change of schedule and change of venues, but it is what it is, and I’ll make the best of it.

Speaking of making the best of things, it’s Sunday, and I need to take advantage of the fact. Yesterday I didn’t get my walk in, because I was tired and not feeling well. It’s a beautiful day today — clear and sunny, if a bit chilly. Time to take myself out and air myself out. I’ve got to catch a nap later and rest up for that Super Bowl business — when we’ll collectively watch teams of massive, powerful, full-grown men repeatedly hit their heads and bodies against each other and the ground.

I wish I loved football less.

But for now, I’ll pretend that everybody knows what risks they’re taking and are able to absorb the blows one last time before the end of the season.

Out into the world I go — with sunglasses on, for sure. Onward.

Posted in Personal Experiences with TBI | Tagged , , , , , | 4 Comments

More shuffling

bookshelf-with-booksI needed to find space on my bookshelf for the two books I got yesterday. So, I moved some things around, rearranging the books I have into a more orderly fashion.

I have been collecting titles over the years. Not a huge number, just a handful of decent scientific / medical / physics works, each year. Some of them have been popular successes, others have been acclaimed in their own circles, which is really what matters most to me. And some are obscure, but have a lot of really great ideas behind them, which have really enriched my life.

The thing with me is that I’ll get really interested in a topic, pick up some books that go into that topic in-depth, and I’ll read them to see what’s there. But my associating mind tends to jump around from concept to concept, and it also connects the dots with other books I’ve read and concepts I’ve encountered, so I veer off course. I make some really useful connections that help me better understand my life and the world around me. But I rarely finish books I’ve started.

Part of it is because I’ve already made a conceptual leap into another realm.

And part of it is that I have seldom read a book that actually  had a strong closing. Most books I’ve read have been let-downs in the last few pages. It’s almost as though the authors just kind of gave up on the whole thing, because the writing and editing process took so damn’ long.

Anyway, I’ve shuffled the books on my bookcase to keep the neurology / neuropsychology volumes together, and put the mythology / archetypal works in their own space. I’ve got books about alternative teaching approaches, as well as quantum physics. And anatomy. Let’s not forget the anatomy. I even have a set of Netter’s anatomy flashcards that medical students use to prep for exams.

I should really get those out and “play” with them more.

I do love anatomy. It fascinates me, how everything is put together and works as a complex whole.

So, that’s the excitement for the day.

It’s the weekend. I need time “off the leash” to just do my thing, go at my own pace, and catch up with myself… instead of what the world demands of me.

Onward… and inward.

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It is so good to be reading books again

books-open-stackLast night, two books I ordered arrived in my mailbox. Very, very cool. I went on a “shopping spree” on abebooks.com a couple weeks back, looking for neuropsychological rehabilitation titles (that weren’t over $50 – not an easy task). After combing through listings, I selected a couple. I got both of them for under $25, which makes me incredibly happy.

And they came in the mail yesterday. As it turns out, it’s even better than expected, because they are in good shape, and they are hardcovers. It looks like one of them was a library book, because it’s got the call number taped to its spine and a checkout log inside the back cover. That’s cool. I don’t mind. The book is in good shape, and all the people who checked it out over the years were actually responsible about it.

So, now I have some reading to do. I used to read constantly — always had my nose in a book when I was a kid. My home office is full of books I have bought and read. It’s always been my preferred way to chill out and get my mind off the rest of the world. Plus, I’m always up for learning something new.

But when I got hurt in 2004, I couldn’t read anymore. Not books, anyway. I could read short blurbs, but remembering what I’d read a few pages (or chapters) back, and putting it together with what’s right in front of me… that was out of the question.

Over the years, I’ve pieced it back together again. I’ve read countless technical and scientific papers (most of them having to do with TBI and neurological issues). I’ve read more social media posts than I care to think of. I’ve read a lot of magazine articles online. And of course, there’s the daily deluge of emails that have to be read and responded to.

So, it’s not like I haven’t been able to read anything – just not full-length books.

A few years ago, though, that ability started to return. I had to work at it a bit, and I had to step away from my practice and come back later, many times over. But the practice paid off, and I got it back.

And now I have my books. My nice new books about neuropsychological rehabilitation. Just a little light reading…

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