Treating TBI

Treating traumatic brain injuries @ the LATimes

They can’t be set like a bone or staunched like a bleed. They can be difficult even to detect, but the military and others are working to improve care.

Larry Ewing’s life changed last year on a construction site in Victorville; Larry Carr’s changed in 2004 on a road in Iraq. Unlikely brothers in arms, both men now share the same invisible wound — traumatic brain injury.

They tire easily, forget often and lose their balance and concentration without warning. They struggle to make peace with personality changes that have made them barely recognizable to loved ones.

Read the whole story here

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Yes, I’m back…

Well, that was interesting…

I stepped away from regular posting for a little while, thinking that I was going to make a change (a number of changes, actually) in how and when I write, how and when I post, and what I write and post about. My motivation was the intent to err on the side of caution, as I was starting to feel, well, exposed by all these posts. I’ve shared a lot of personal information here, and frankly, it started to spook me out a bit. It’s always been my intention to speak fairly personally here, to share details about my life that might be considered “intimate” by some, but to just let it all hang out, because when it comes to personal health issues, especially TBI, there aren’t a lot of sources that speak directly to us as human beings, and put a real face on our experiences.

All too often (especially given the state of healthcare in the US at this time), we are assigned patient IDs, given little plastic cards with our numbers on them, added to hospital and clinic databases, issued either a prescription for pills or told to ‘get more exercise’ and more actively control our stress. That’s if we get any help at all. Lots and lots of us never get the help we need when we need it – or if we get it, it’s not till much, much later, after considerable damage has been done. And we’re left to struggle along, muddle through, and generally find our way by trial and error.

It’s been my hope that this blog would help alleviate some of that. Give people a bit of hope. Offer my own experiences as a resource for others who don’t know where to turn. It hasn’t been perfect, by any stretch. But as of today, I’ve had 35,928 different page views. Not bad, for about 18 months of work.

And when I announced that I was going to be shifting my focus (I wasn’t really specific), I did hear from some folks about how they wished I wouldn’t go away and quit keeping this blog. It gave me pause. And over coffee this morning, I decided, “Oh, what the hell — I’m come this far, why pull out now?”

Interestingly, a lot of the page views are for posts I wrote many months ago, so the content has value for people (apparently) beyond the immediate moment when I write it. That’s one of my goals — to have “evergreen” material here that people can find useful, even if they are stumbling across the info many months after I first wrote it. These issues of ours are, unfortunately, very tenacious, and they don’t go away.  So, as long as I’m not a complete and total narcissist about this, and do it just for ego-casting, it makes sense for me to continue.

So, given that I believe in this work, and others have told me it’s needed, I’ve decided to restore my past posts for folks who are looking for info on dealing with mild TBI or PTSD. It’s pretty important work, whether or not I’m doing it. And I realized over the past days of not doing it, how much I love it. It’s not just about me and my life — it’s about chronicling human experience and finding workable solutions to tenacious problems, to share with others.

I do love the work, so yes, I’m back.

Now, I need to tell you why I pulled away so abruptly in the first place.

There are several reasons, which are actually closely related — and everyone who does health research and posting online needs to think about this very carefully. Please pay attention to this, as it may pertain to you, as well.

First, there are basic survival issues at stake.

I’m in a position where I may need to look for a new job in another three months or so. My COBRA-supported health insurance stops being subsidized at the end of this year, which means my health insurance costs are going to more than triple.  I have been offered lower cost coverage, but it doesn’t provide ample coverage for me, and I cannot, under any circumstances, get lousy health insurance, if I’m going to continue to see my neuropsych and psychotherapist.

The job I am in now, which is just a contract, may not pay me the money I need to keep going, so that means, I need to do some hard thinking about what work I do for a living. I have been needing to branch out from what I’ve been doing, for the past 15 years, and see where else my technical skills can take me. I need to update my skillset and expand my resume and portfolio, and that takes time. It takes time to keep this blog. I have regularly spent the first hour or two of most days in the week posting here, and that is time I could be spending on developing my skills.

I have a hell of a time keeping focused and sharp. I only have so many resources, and I only have so much energy. I need to feed my family and keep a roof over our heads, and I have to take my professional performance to the next level. That means something may have to give, and until this morning, I was convinced it was this blog. I only have time for really essential things, these days — given how much longer it takes me to read and comprehend and learn and keep my act together (compared to how I was before I fell in 2004), I have to carefully pick and choose what I do, and save my best energy for my most lucrative and financially beneficial activities.

More on this later…

The second reason I decided to give up this blog, was because of privacy issues and my concerns over this information working against me in this job market.

Let’s face it, traumatic brain injury is not the sort of thing that most employers embrace wholeheartedly. It’s highly stigmatized and people just do not understand it. It’s one thing, if you’re a veteran returning from the front lines of the War On Terror, and you come back after having been head-injured in a roadside IED blast while safeguarding our freedom. That’s something that (many) people can see as worthy of respect and consideration. People support troops. They have compassion for victims of insurgent attacks — Important Note: Please don’t think I am making light of combat TBI, or assuming that every returning soldier gets the full compassion and cooperation from the normal world upon their return. I only wish it were so. — But a traumatic brain injury sustained in a car accident or a fall down some stairs or having something fall on your head is harder to explain as the serious issue it can be — especially when popular culture (including Pepsi during the Super Bowl) makes light of head injury and promotes the perception that you can just shake it off, say “I’m OK — I’m good” and everything is hunky dory.

Even if people do understand that TBI (mild, moderate, or severe) can cause tremendous difficulties at the start, plenty of folks are of the belief that things should just sort themselves out over time. Indeed, many neurologists believe just that — including one I had the misfortune to visit when I was just starting out on this serious diagnostic/rehab quest of mine.

Now, given the types of information I have posted here, and given the breadth and depth of my own issues which I have willingly and eagerly chronicled here, I am admittedly putting myself in a very vulnerable position. No joke. Every so often, news comes out of some blogger being “outed” by their hosting service, because they’ve said something that pissed off someone with a vested interest in what they were discussing. And that blogger — like Valerie Plame — is exposed and banished from their position and/or blog. Recently, a Scottish policeman who blogged very candidly about his work, was exposed and dismissed from his job, and down came the blog. Which was a loss for everyone, especially him.

I have no interest in repeating his performance. I want to speak freely and do my part to support others, but at what potential cost? I’ve got to keep the money coming in. I have a grown-up life in the grown-up world, and I have a family to support. Thinking about the possibility of being fingered and stigmatized by what folks read here spooked me pretty badly, so I decided to back off the posting.

Third, all this personal health/medical information floating around online might not be such a great idea.

I mean, seriously. This whole “Health 2.0 — community-driven health research and open-source information sharing” strikes me as possibly the worst idea to come along since, oh, the collusion of church and state. There are many health information sites and communities which give people the chance to post personal information about their health concerns as well as engage in discussions with others. Some of the conditions are serious, some of them are relatively benign. But they are all personal. And lots and lots of people are not very careful about hiding their identities when they post to them. In my visits to various Health 2.0 sites, I see a lot of people using their real names, talking about their real conditions, and I wonder if they realize their information is visible to as many people as it is — including potential employers and insurers… not to mention the government.

Now, I am not a conspiracy theorist, and I’m not the kind of person who thinks the government is out to get us all, in some Matrix-movie-type of blue-pill-induced power grab, where everyone is walking around like zombies, feeding the machine unwittingly with their vital life force. I think real life is a lot more complicated than that. But I do believe that if unscrupulous individuals and organizations have free access to lots of personal information, they have plenty of opportunity to do unscrupulous things with that data.  It’s not a question of the right people having access to the right information (like members of a forum or online community) or the wrong people having access to the wrong information (like private investigators trying to dig up dirt on genuinely injured people who the insurance company doesn’t want to cover). It’s a question of all the information being accessible to any people who care to get at it.

And believe you me, people who really want to get to it, will. It’s not that hard — either they can do it by trickery (like in phishing emails from Big Banks that have links to them pointing to some .ru website that looks really official), or they can do it by hackery. I’m not paranoid. I’m just a highly experienced information technology veteran who has been active in a highly regulated and highly sensitive sector for quite some time. Wait — maybe I am paranoid 😉 Can you blame me?

Anyway, the thought that my own personal information is floating around out there — albeit in an anonymous fashion — sorta kinda spooked me, so I yanked it in a hurry, one frantic afternoon. I hadn’t been sleeping well, I was in a lot of pain, and I was contemplating the prospect of a potential employer finding out all about me and saying, “Why the hell would I hire some washed-up, brain-damaged has-been who runs around telling everyone how much difficulty they have doing basic stuff? Where’s the ROI on that?” In my mind, my whole way of life was seriously threatened, and I had to do somethign to take the pressure off.

So, I disappeared. And I thought it would make me feel better.

But, as you can see, it didn’t. I felt like I’d abandoned my post. I felt like I’d deserted those  who trusted me, and I felt like a total loser.

So, I turned around and came back. And here I am.

I am still a bit uncomfortable with being this vulnerable, but it’s the only way that really works for me. The truth is not a simple thing, and the full range of human experience is not a cut-and-dried, clean and tidy topic. It’s messy. It’s inconvenient. It’s exposing. It’s vulnerable. And at its very best, when it’s done properly and honestly, it turns us all into deeply fragile creatures whose lives literally hang by a thread at times.

Le’ts be honest, people. The very fact that a lot of us are alive is proof of miracles. The fact that any of us emerges from the womb with 10 fingers and 10 toes and all our organs intact, is nothing less than amazing. The very fact that countless people, over the course of human history, have been terribly, terribly injured — both within and without — and yet have survived, or even thrived, is further proof that we frankly don’t know shit about how everything is put together, and trying to come up with pat answers or reduce the deepest mysteries of the human spirit to reproducible, mechanized formulas is an exercise in futility.

Certainly, we will never stop trying to decode life’s intricacies, but deep down inside, we all have to admit that there’s way too much mystery surrounding us, for any of our arbitrary rules to apply for long.

So, that being said, I’m going to reverse my former position and venture back out into the light of day with this blog. I am still very concerned by the Health 2.0 movement to get everyone to put their health information online. Google Health, and other publicly available patient records management programs, scare the living daylights out of me. And the fact that people are embracing this innately non-secure, non-private, non-controllable new trend — which can have personally devastating consequences for individuals whose privacy is compromised — worries me deeply.

But I’m still going to keep blogging. I’m still going to keep talking.  Above all, I’m not going to stop believing that the power of the mind and the human spirit can — and do — work together to triumph over the injuries of the brain.

Or, perhaps more accurately, can LIVES be saved?

I had some feedback from one of my posts yesterday about Bob Woodruff’s recovery from TBI.

I didn’t like the article at all – in fact I felt it did a HUGE disservice to brain injury and rehab – it gave the impression that there were these wonderful cognitive programs that could restore people to their regular functioning in a relative reasonable period of time, that these services could be tailored to everyone’s particular needs, and that so much has changed that brain injury is ‘curable’.

The reality:

The is little funding still for most services, most insurance plans cover very little especially in cog rehab – which may be needed for years to be helpful.

Recovery of any kind is YEARS – not months, not a year or two but YEARS.

There are no miracle programs – this is slogging through a lot of really frustrating activity, going round in circles, making mistakes over and over and over, training yourself to be disciplined about organization, planning, memory skills, rethinking your life career etc

While  I appreciate the Woodruffs bringing attention to the issue Bob Woodruff got top ranked care – the vast majority of people DO NOT receive ANYTHING like that – they may get a few months of cog rehab, some PT, and a year of neuropsychological counseling. The existing services for TBI are terrible, un-coordinated, cookie-cutter, short term, and severely underfunded. 90% of the survivors DO NOT get any thing that is customized – most do not get even half of what they need that would truly empower them and enable them to have productive lives with true quality of life
VERY little is still understood about tbi – especially mild tbi. There are probably many many people who have TBI’s and don’t recognize it as such – they are just considered ‘moody’ or easily distractible or have other issues in relationships etc. We know virtually nothing about how the brain works and organizes data, repairs itself or re-organizes after a trauma. Much much more research and money is needed to allow professionals  to understand tbi, provide better tools for helping people recover (whatever that may mean), better ways to diagnose and to eliminate the stigma involved. 80% of tbi survivors do not recover their previous employment levels, and equal numbers experience loss of spouse, family and or friends, NO ONE wants to tell a prospective employer they are a survivor. Most tbi survivors do not write books or go on tours or have understanding supports – they end up financially destitute or in severely reduced circumstances, alone, struggling and often develop addictions as a result.

The article presented a rosy cheery picture of tbi – just like having a hip replacement  – tbi is a life-changing event and is underfunded and not understood. there are no ideal treatments and many people end up overdrugged – even by the ‘professionals’. I get frustrated by such articles because they mislead.

Some folks in advocacy agree with me and others don’t. Some feel that any attention  to TBI is helpful and that at least by making it less strange it encourages people to accept that many people do have tbi’s and are ‘normal’.  So I admit that my opinion is not universal. I will also say that this was the second brain injury article by that paper that focused on a well-connected individual who got amazing health care – and in this other case that person did make a phenomenal recovery – again, the kind of recovery that 99% of tbi’s do not make. So some of my frustration is also based on that. I would love to see a “Ordinary Jane or Joe has a tbi” story – and what it means to lose your career, to lose your home, to have a changed marriage, to try and re-create a self, to have 3 months of cog rehab and told you are ‘fixed’ because your insurance ran out – to struggle in school, at work, to lose your job – all these things that are what happen to most Americans – including our Vets.

Healthcare is a critical issue in this country and tbi is part of that. It will be ignored and forgotten if the true loss of lack of care is not made clear.

You know… it’s true. The vast majority of us who sustain these types of injuries never get the help we need — many of us never even realize we need it… until too late (or almost). Personally, I consider myself extremely fortunate to have put two and two together before everything fell apart for good. I was awfully close to the edge, now that I think of it. I dodged a bullet. And I am incredibly grateful for the combination of fate, the world wide web, and my local Brain Injury Association chapter, for helping me put this together… as well as to my various therapists and friends and strangers who had the right info at the right time, who kept me from tripping and tipping over that very precipitous edge.

Not all are as lucky. And I have been lucky. I am very much aware that I could easily have ended up in much tougher straits than I am, right now. It was almost a fluke, that I even got a clue that I needed help. And while I have had to work my ever-loving ass off to get the help I need, and it feels like it’s been a long time coming, and I still have a long way to go, at least I have had the personal resources to launch into this quest for clues.

A lot of others don’t. They just get lost. Pushed to the margins. Out of sight, out of mind, out of luck.

I hate to say it (and I’ve felt a bit guilty about thinking this), but I’ve never been that comfortable with Bob Woodruff’s story and the way he’s been portrayed as a kind of “poster child” for TBI recovery. It’s like they’re not telling us the whole story — like how he really is at home, what his moods are like, what his interpersonal skills are like, what his memory is like.  He’s an attractive public mainstream figure, who has received the best treatment possible and works in a field where his performance is not only scripted beforehand, but edited between the time he does it and when it is aired to the rest of the world.

I’m reluctant to say any more about him, because I am not thoroughly familiar with his work, and what I’ve seen of him has been positive. No-way, no-how do I begrudge the man his recovery or his restoration to broadcasting work. He’s covering some really important stories that I enjoy watching. But I wonder how much similarity his experience actually bears to my reality. Or to the reality of countless other tbi folks. I wonder how his irritability/anger management is, if he has constant ringing in his ears or constant headaches or other chronic pains. I wonder what truly goes on in the privacy of his own home, where no cameras are rolling and no editors are deleting the segments where he’s struggling to find the right word or remember what he was going to do when he walked into the next room. I wonder what his life is really like.

One of the things that I think may have helped him get back to work, is the fact that he works in broadcasting. Being involved in broadcasting, myself, I know how helpful it is to have a script to go by, when you’re doing your job. I often create and use “scripts” in other situations, like when I go on job interviews, or I am leading a meeting and following an agenda very closely. Having a scripted line of work (or work that follows specific guidelines, like strict meeting agendas, or has a heavily-project-managed element to it) makes getting back to work — and re-integrating into society post-injury — a lot more straightforward, in my mind.

It’s never easy, of  course, but if you know what you’re going to say and do ahead of time, and you have ample opportunity to practice, and you don’t have to be “on” for more than the length of the take/recording… and you get to edit out the parts of your performance which aren’t that flattering… well, I can see how you could present a really excellent picture of miraculously restored health after what was supposed to be a fatal accident that would — at best — leave you a vegetable.

Thinking back to the positive tbi-is-fixable article in Parade, I’m struck by the emphasis on the idea that outside therapies are capable of restoring functionality post-tbi. I don’t doubt that having someone work with you can be of tremendous help, but from what I’ve seen and experienced, what you do for yourself, with yourself, by yourself, can be a critical factor in the degree of your success.  Of course, it is important to get outside help — especially from trained professionals who have made the study and treatment of tbi their life’s work. But I also agree with the Give Back Orlando materials about outside therapy only going so far — at some point, the insurance gives out or the prescribed treatment runs is course, or therapy is no longer available or an option for you.  You then have to step in and run things for yourself, or you’re just not going to get that far. Reading about long-term efffects of TBI, what I’m struck by is that folks may improve over the first several years post-injury… but look at them 10-20 years later, and sometimes they’re really struggling. I think the critical piece in this is self-reliance and the ability to do self-therapy.

Personally, I suspect that my own self-reliance has been the secret to my repeated recoveries over the years — never having any help, and being forced to fend for myself. Not that I had any choice, mind you. My first injury was 36 years ago, and nobody had a friggin’ clue about mild tbi, back then. A year after that, when I had another more significant injury, it was worse, but not bad enough to send me to the hospital, and they probably would have just sent me home again, anyway. I’ve been hit on the head, fallen down stairs, fallen out of a tree, been hit from behind in several different cars, and I’ve had my bell rung more than once while playing contact sports, over the past 36 years. If anyone should be marginally functional and struggling in vain with basic stuff, it would be me.

But I’m not.  I do struggle terribly at times, and I do have some pretty problematic issues, but I usually manage to figure a way out of my predicament… eventually. I’m not destitute, and all my friends and family haven’t fled from me. I am not homeless, I am not out of work, I am not that terribly marginal — except to the degree I pull myself out of the mainstream frenzy to keep my balance and sanity. Best of all, I am not in jail (granted, I dodged the bullet of arrest a bunch of times, but hey – at least I dodged it, right?) Given just slightly different reactions and choices in many of my life experiences, I could easily have ended up in an institution of one kind or another. My own parents tried to get me committed due to my “inexplicable” behavior, about 20 years ago. It didn’t work, I’m happy to report.

Maybe I’m just too stubborn and too averse to acting/living/thinking like someone who’s brain-damaged. Maybe I’m too proud to give in. Maybe I like having a regular life too danged much to let go. Whatever the reason, I’ve been self-reliant and headstrong and stubborn from the start, and I credit my tenacity and determination to just keep going, regardless of whatever the heck life throws at me, with keeping me in the game.

Now, I wouldn’t recommend following my tumultous loner’s path to anyone — tho’ a lot of us are in this “boat”. It’s lonely and confusing and confounding and can drive you half mad. It can also really piss off everyone around you and cost you jobs and friends and family, and you have to work twice as hard after the fact to fix things up again. But at the same time, a lonely, isolated path forces you to develop a self-sufficiency and skills that you might not have to, if someone else were standing by your side, walking you through everything, checking in with you regularly, and keeping you on track.

It’s kind of like that “restraint” training that some stroke survivors do — to train the hand/arm/fingers on their impaired side to function again, they tie down the arm on their able side, so they’re forced to use the impaired side. And they can progress at rates quicker than those who don’t use this technique. I’m not sure if I even have a lot of “un-hurt” parts of myself to tie down. I’ve been pretty roughed up, over the years. But I’ve forced the broken parts of me to keep going, regardless, and it’s paid off.

That being said, what I think helps me the most as a long-term multiple mild tbi survivor who is not just surviving, but thriving, is:

  • keeping my spirits up,
  • staying intensely interested in all of life around me,
  • staying positive and solutions-oriented, and
  • having plenty of access to quality information — both from the internet and neuropsychologists who are available to me.

I wish to high heaven there were head-injury-aware neurologists who were freely available to chat with the tbi survivor population — maybe I’ll check with my local BIA chapter to see if they know of any — because I’d love to be able to ask them a bunch of questions about brain function (particularly mine) without needing to clear it with my insurance company. I need information. I thrive on it. Even if I don’t understand every little bit of it, and there are pieces that get lost along the way, still… it gives me a general orientation in how to live my life. And that helps. I need information to save my life. Literally.

That’s what it really boils down to, I guess — not so much about saving my brain, as saving my life. Sure, of course, I want to save my brain, but there is much more to me than what’s between my ears. There’s what’s in my heart — and in my gut. There’s what is in my spirit, as well as the sum total of my past experiences and all the invaluable lessons that have come from that. My brain may have issues that need to be dealt with, but ultimately, there’s a whole lot more to me than just gray and white matter segmented into various lobes and cortexes (or is it “cortices?”). There’s a whole person in here, with a lot more going on than the electrical impulses and connections between synapses and neurons and dendrites and whatever else is up there (that they know about or haven’t discovered yet, which I suspect is a lot).

And I think that’s also what gets lost, a lot of times, when people deal with TBI. They are so focused on the brain, on the individual functions of the brain that need to be restored or changed or compensated for, or whatever, that they can lose sight of the rest of themselves that is so very vital in dealing with their new brain, their new personality, their new self. The old brain is gone. The old self is gone. It’s not coming back. It can be a terrible loss, and it does need to be recognized and grieved. But at some point, you’ve got to let go of the idea that things can be the way they were before. They can’t. You may be able to get back to a semblance of your former functioning, but the old ways of doing things are gone-baby-gone. It’s a tragedy. There’s no two ways around it.

But that’s not the end of the story. The good news is that for every old way that’s gone, there are lots of new ones waiting to be discovered and developed. The brain is an awfully big place (its size notwithstanding) with a wide, wide world of possibilities. The human spirit is enormous, with more capabilities than we can ever imagine. The body is also capable of incredible changes and adaptations that can compensate for plenty of problems. I’m not trying to make light of tragedy and loss, or make it out to be less serious than it is. It is serious stuff. And it is a terrible, terrible thing when it happens. But there is a whole lot more to us, than we can ever imagine.

And until we put our minds to it, we can never begin to find out just how much is in there.

So, while I do often wonder if brains can be saved, I’m ultimately much more interested in how lives can be saved. It’s not always about what’s in our heads that counts in life — it’s what’s in our hearts.

Beyond the Invisible – TBI Video for and about Military Veterans

I just learned about a 4-part series about TBI from the Brain Injury Association of NY Military Veterans Project. Check it out – it’s great!

Beyond the Invisible

Part 1 http://www.youtube.com/watch?v=G5eWersQdRw&feature=related

Part 2 http://www.youtube.com/watch?v=TwsGzRLTRqY&feature=related

Part 3 http://www.youtube.com/watch?v=ADC93aoVkP8&feature=related

Part 4 http://www.youtube.com/watch?v=7QBnACJ7eAQ&feature=related

Yet more thoughts on TBI and mental illness

This morning (6/9/9), I took a gander at the ways people have been finding their ways to this blog since I first started it over a year ago.

  • 38 people got here by looking for info about TBI/brains and anger/rage
  • 86 got here just searching on tbi
  • 156 got here by searching for info on interviewing
  • 39 people got here by searching for brain info
  • 225 people found their ways here by searching on tbi and mental illness

Apparently, it’s something people are concerned about.

And so am I.

I’m worried. Really, really worried. Because this society seems all too eager to label people “mentally ill” when they really have logistical problems — it’s not necessarily that they aren’t thinking properly, ’cause of some inner psychological conflict going on — it’s that they can’t think properly, ’cause their brains have been rattled or somehow impacted.

And our society seems all too eager to prescribe medicines for psychological conditions — meds which may actually exacerbate the issues at hand.

For instance, as I understand it, the irritability and temper flares that come with TBI are often due to a “constant inner restlessness” that takes up residence in your head after a brain injury. That constant restlessness can be directly related to something called “tonic arousal” which (as I understand it) has to do with how awake your brain is. After TBI, certain functions slow down — processing slows down, connections that were once intact are now broken, so it takes the brain longer to sort things out. And with that slowness comes a decrease in tonic arousal… which also can lead to attention difficulties… which can feed into all sorts of problems that can make you nuts and drive you to distraction.

TBI >>> less tonic arousal >>> increased irritability >>> more meltdowns, rage, blow-ups, etc.

Now, let’s say some doctor or psychiatrist gets hold of a TBI survivor and diagnoses them with some anxiety-related condition, or some other “psychological” dysfunction. Let’s say the attending caretaker prescribes one of those “downregulators” that slows down the processes that can feed into manic/anxiety type experiences. What do you get when you downregulate someone who’s already struggling to keep up? Decreased tonic arousal. Which can mean more irritability, more temper flares, more rage, more meltdowns… possibly increased violent acting out? Maybe?

Downregulating meds >>> even less tonic arousal >>> even more increased irritability >>> more and more and more meltdowns, rage, blow-ups, etc.

I’m not a doctor, but I don’t think you need to be one, to get this connection. Maybe not being a doctor helps you see it all the clearer, without the long-term effects of that sleep-deprived-traumatized-resident fog that lots of docs get hammered by when they first start practicing.

This really worries me — had I mentioned that?

And given how many people sustain TBIs each year, not to mention how many vets are returning from Iraq and Afghanistan with TBI’s and PTSD, etc., it really opens the door to a lot of crappy medicine and pain for the families and friends of the folks who have given their very brains in service to this country.

I think the only thing we can hope to do is educate people — not so much the doctors, because how many of them are listening? It’s about educating “the people” — the patients who look high and low for help (if they ever figure out that they need — and can get) help. Making sure people have access to truthful and accurate and independent information — and giving them easy and useful ways to wield that info as they defend themselves from the quacks of the world, not to mention Big Pharma.

Ultimately, it is up to each and every one of us to fend for ourselves, but a little help would be nice, now and then…

Hits madness… the good kind

What a day I’m having… That little post I put together on the train while coming to work has caught people’s attention. My normally sleepy little blog has by now logged 1,646 visitors. Up from a high of 200-some, a few months back.

Suddenly, people are paying attention
Suddenly, people are paying attention

I’m pretty excited about this, and checking where the traffic is coming from, Alphainventions and Condron.us are both feeding me. Alphainventions mores0, but Condron is doing it, too.

It’s a pretty intense jump — a 10-fold increase over what I typically get. Dizzying. It’s kind of depressing, that this happened as a result of me talking about terrible things happening, but I guess in these times, everybody is paying closer attention to terrible things.

I think that perhaps we’re really trying to figure out how to handle it all. It’s not easy, living in these times, and I suppose it’s human nature for people to ponder imponderables. That’s not a bad thing. In fact, it’s a good thing. Writing about terrible things isn’t the most pleasant activity, but if we can come away with some lessons learned, then we may be able to turn negatives into positives.

One can only hope.

I talked to my friend today about their nephew. People think it was a drive-by shooting. Stupid, stupid, stupid. What’s the point?! What does it give us — anyone — to strike out against others from a safe distance?! From the safety of a passing car… What is the point?

I can think of a number of reasons someone would want to do such a thing. I can think of a whole lot. In a small way and on a very limited scale, it certainly has allure. But on a grander scale, within a community context, it has on meaning at all, and it only serves to destroy what little connection we have with our world.

And I think about how this relates to TBI. And PTSD. I can’t help but think about it. I wonder if the people involved were cognitively impaired, in some way. If they were socially impaired. If they had been injured so often and so badly by a wrecked family system and a wrecked culture, that there was no way they could get through it in one piece. If they were so brutalized by the inequities of this culture we tend to adore, that there was no hope left for anything but violence. Shooting. Cowardice from a moving car.

Certainly, whoever did this was alienated from their community, else they wouldn’t have done this. People are by their nature self-preserving. They do most things because they get something out of it. My logic is getting all tangled around, I’m sure, because I’m so pissed off about this shooting — about all the shootings that have been going on. But it seems to me that people who feel they have a place in the world, who have a future ahead of them, who can clearly see how they are interconnected with one another, and who have positive, mutually beneficial relationships with others they care about, are not going to run around shooting other people from moving cars.

But, you may say, people are responsible for their life choices. They have to make wise decisions and act on them, and if they choose the lesser, then they should be caught and punished… possibly put away for a very long time. I’m not saying that isn’t true. I agree with it. Personal choice is critical in all this, and I do believe in finding, catching, and punishing wrong-doers. I hope whoever killed my friend’s nephew is found, tried, and sent away for good.

But if someone is so f’ed up by a long, long history of abuse and neglect, and thanks to many beatings and falls and fistfights, their brains have been altered in ways they’re unaware, so that they’re doing things and making choices whose reason escapes them, and their skills and abilities are eroded by lifetimes of neglect and misunderstanding and seemingly random punishment, what chance do they have of acquiring the ability, even skill, of assessing their behavior and their situation and figuring out how to set right what’s been wrong for so long?

I do think, based on my own experience, that head injury probably plays a much larger role in our society’s ills than we care to admit. Certainly trauma and post-traumatic stress does. We should probably look closer at it as a nation. I suspect we’ll have ample opportunities to do so, as our veterans return from Iraq and Afghanistan, many of them with TBI and PTSD — and not all of them diagnosed and treated or supported in any way. I fear we are headed for social melt-down, even as our economic situation worsens waaaay past where we thought it would bottom out.

This is not to say that I think everyone who’s been hit on the head or suffers from PTSD gets a “pass” when it comes to bad — even evil — behavior. Some sh*t is precisely that — pure evil. The thing is, with brain injury, you don’t always know how evil your behavior is. It’s when you start to approach your injuries and deficits and learn to understand it and you get your broken head around the ideas of what’s right and what’s wrong and what you should and should not do, that you have the chance to examine your choices, become conscious about them, and become capable of taking responsibility for what you’ve done.

But until you can look at your injury and the after-effects, and come to terms with the person you’ve become as a result, you can’t really even start to approach the level of self-examination that’s so important, even vital, to responsible behavior.

My friend’s nephew is dead. It is a goddamned tragedy. Hearts have been broken, and some of them will never heal. This happens every day, all over this country… all over the world. And every time it happens, it is a tragedy. There’s no two ways around the awfulness of it all. But the worst thing of all is, this sh*t keeps happening, and we don’t seem to learn. We can’t seem to figure out how to stem the tide of this wretched self-destructiveness, and we can’t seem to figure out how to make our streets safe. Not just the nice streets in the nice neighborhoods, but all streets. In all neighborhoods.

I’m just one person looking on from something of a distance, but I am holding onto some hope. Maybe it’s easier for me to do it, because I’m not in the middle of my friend’s family’s pain. I’ve been in similar pain… and if nothing else, I cannot lose hold of hope.

I can only pray that maybe someday we’ll figure out ways to approach our social limitations with common sense and compassion, find the courage to reach out to ask for (and offer) much-needed help, and force ourselves to look at social ills not just as opportunities to capture and punish the anti-social dispossessed, but as gateways to greater understanding… Gateways that not only make it possible for us to understand, and sometimes forgive, but which force us to face up to the terrible things we have done… and change our ways.

Maybe I’m being overly optimistic. I’m sure on some level I am. But after all I’ve been through and survived, after having come through so much wretched difficulty in my own life, after having won so much and achieved so much despite my limitations, I’m convinced, there are such things as miracles.

Giving hope its due

Okay, now that I’ve riffed on despair, it’s time to dwell on hope. And healing. And the good things that come along with brian injury.

I can almost hear you thinking, “What good things that come along with brain injury? What are you – nuts? Head trauma sucks, and long-term after effects of even a mild brain injury can be so debilitating as to ruin lives, destroy families, trash careers… and more.”

I agree. Brain injury is a national health crisis and it’s a tragedy and a disgrace that something so common (see the stats in the sidebar) is so little understood and its impact so under-estimated. It’s a travesty, in fact. Last night, I was reading the book Confronting Traumatic Brain Injury by William Winslade. The Amazon review says

Author William J. Winslade suffered from a traumatic brain injury (TBI) as a 2-year-old, when he fell from his second-story porch and landed straight on his head. He’s one of the lucky ones who’s recovered fully, both physically and emotionally; his only souvenirs of the fall are a three-inch scar and a dent in his skull. He warns that of the 2 million Americans who suffer from TBI each year (most of them from car and motorcycle accidents), up to 100,000 of them will die prematurely. More than 90,000 of them will face up to a decade of extensive rehabilitation, at a cost of up to $4 million each. Even a TBI as seemingly minor as a concussion can have devastating long-term physical consequences, causing seizures, memory loss, learning disabilities, and more. However sorry these problems may be, he writes, “the truly debilitating deficits” are the less-obvious emotional effects, “such as social isolation, [which] take their own insidious toll.”

Which is all very true. I can personally attest to it. And that book is ten years old. So why don’t more people know about this stuff? Why is our country — and the world — still forced to cope with so much trouble relating to brain injury. From violent crime to domestic abuse, from learning disabilities to physical limitations, to series of progressively more debilitating re-injuries over the course of lifetimes, brain injury plays a whole lot of havoc with our world.

The thing is — and I’ve read pieces by Dabrowskian therapists saying this is why they became interested in his work — the information we have (and we do have plenty of stats about TBI) isn’t always conducive to knowledge.  Perfectly intelligent people with lots and lost of information at their fingertips continue to overlook and ignore or downplay the impact of head injuries, and refuse to take steps to prevent it. What’s (perhaps) worse, is that perfectly intelligent people, who are capable of understanding the objective impact of head injury, persist in treating TBI survivors as though there’s something wrong with them, that they’re deliberately doing the things they do, that they’re intentionally screwing up, that they’re cheating the system, slacking, taking advantage, and doing any number of other things to “milk” a supposed injury.

Check the blogs of TBI survivors out there, and you’ll find more than a few accounts of difficulties with friends and loved-ones who refuse to factor in brain injury in the TBI survivor’s behavior.

Now, I could circle back around and delve into despair, but I’m choosing a different tack. Why do intelligent people neglect taking the facts about TBI into consideration? Why? I suspect it’s because brain injury isn’t just about facts. It’s about harm done to the singlemost important organ in the body. It’s important not just because nothing works without the brain, but because even if it is functioning somewhat well in a physical sense, if it’s not operating at peak performance, it deprives us of something even more vital to the human soul than motor function or control of our bodily functions — it deprives us of our humanity.

Truly, brain injury is terrifying for most people, because it hits us where we live, in the deepest, darkest part of our souls, where we are most vulnerable. Especially, I think, for intelligent, intellectual, fact-driven people, the emotional impact of brain injury — just contemplating it, to begin with — can be so unsettling that it causes higher reasoning and analytic function to slow, if not stop. Pondering the impact that head trauma can have is, well, traumatic. It kicks off our most basic survival responses. And our fight-flight-freeze response tends to make us abandon high reasoning for the sake of just getting away from the thing that threatens — or just frightens — us.

I suspect that this, more than anything, is what keeps brain injury from being adequately apprised and addressed in this country. And it appears that the only thing that will make us sit up and take notice are tens of thousands of returning veterans — trained warriors, wounded warriors — who are reintegrating into a society that is woefully unprepared for them… but will need to change that, if we’re going to get by in this new century, this dawning millenium.

And that’s where I think hope can help.

Certainly, hope is necessary in any tough situation, but especially in the case of TBI. Mild, moderate or severe, brain injuries certainly leave a mark on survivors and their family, friends, co-workers… often without them understanding why and/or to what extent. But we don’t have to let that keep us down. Yes, there are problems. Yes, there are issues. Yes, there are tremendous difficulties. But with the brain, you never know what’s going to happen next. Some recoveries last months, years, decades longer than anyone expected them to. But abilities can sometimes be restored, where the experts were sure they were gone for good. And where some abilities are lost for good, others can arise in their place — or show up where they weren’t before. Plenty of people have survived trauma that marked them “certainly” for death, and they’ve battled back from the brink. And I’ve heard stories of people who sustained significant brain trauma, only to find that suddenly they could paint like nobody’s business. Or they started writing one day for no apparent reason.

Looking at some of the most brilliant minds of the past thousand years, the brains inside their heads have not always been “standard issue”. Einstein was missing part of his brain. I’ve also heard that Thomas Edison’s brain was malformed. (Note: I’ll have to do more research that one — I’m not finding information about it right away.) Gifted artists and writers have been epileptic, as have some of our most effective leaders and gifted actors and athletes.

And I suspect, the more we learn about brain injury, the less afraid of it we’ll be. The more we realize that it is NOT a death sentence, that it is surivivable, that it can actually impart or uncover abilities and gifts that might otherwise go unnoticed and undeveloped, the less traumatic the mere consideration of it will be. I don’t mean to diminish the suffering of those who have really struggled with the after-effects. And I don’t want to downplay the seriousness of it. I’m just saying, there are two sides to this story — the tragedy and the triumph. And when we can pay as much attention to the triumph as we do the tragedy, and accept them both as possibilities… as parts of the whole of human experience, we might stand a better chance of confronting the challenges that go along with brain injury, and learn to integrate the experience into our collective storehouse of information… and for once, let facts — not fear — govern our understanding of the injured brain.

On being beyond help…

I guess I’m feeling sorry for myself today. It started this a.m., when I had a pretty intense discussion with my new shrink about what I was going to do with the information that came from my new neuro. After talking with totally outraged friends who were incensed that my present neuro didn’t tell me about the pineal cyst and were miffed about how my experiences were described in the letter to my PCP, I was seriously considering looking for a new neuro.

Until my shrink talked some sense into me.

Said they, “So, this is Neurologist Number … Three?

Said I, “Yes.”

Said they, “You can’t keep jumping from doctor to doctor…”

Said I, rather abashedly, “Uh… I know…”

We had a pretty frank discussion about how the medical profession is not having a particularly good century, thus far, and how doctors have so much pressure on them, these days, so there’s only so much I can expect from them. And there are plenty of people with much more pressing problems than mine — which are really borderline and are more exploratory than anything else, at this point. True, there are things that have been going on with me for some time, that I’ve been urged to follow up on, but it’s not like I’m in serious trouble and unable to function at all.

I’m high functioning in some ways. In others, I’m less so. It’s getting past the okay stuff to the problematic pieces that’s the major conundrum in my life.

Frankly, I’m not sure I’ll ever be able to get to the bottom of what needs fixing, so I can function as well as I can all across the board. Not really. I just can’t describe my symptoms and issues in ways that others can understand. At least, I haven’t been able to do it, yet. Maybe someday I’ll be able to, with the help of a speech therapist, but right now, I have no great hope of it. I’m just so awful at communicating what’s going on with me, when pressed for information. Just awful.

And it just pisses off the people who are trying to help me.

So, I’m beyond help.

I don’t mean to sound depressed or anything, even though I kind of am. I guess I just had higher hopes of being able to connect with medical folks, and not only failing at that, but also being told there’s no great hope of me being able to do it any better with anyone else, bums me out, too. I’m probably being a drag, right now, and I apologize for that. But for others out there who are dealing with TBI stuff, and for the sake of those who are trying to understand what people like me have to go through, I hope my words can help shed at least a little light on what problems TBI folks face in seeking health care.

I suspect this is going to be a pretty significant issue in the coming years, as our veterans return from Iraq and Afghanistan with head injuries and PTSD and lots of other issues that they need help with. What is this country going to do, when thousands of folks with communication and self-assessment problems like mine — and physical conditions that are far more severe — show up needing help? What are the doctors and nurses of this country going to do? Shrug their shoulders and say, “Oh, well…” and turn away? Or dismiss them as malingerers? Or, absent any clue about what the real problems are, pump them full of drugs that will either ease the symptoms or knock them out sufficiently to not notice them so much?

It makes my heart hurt, to think about it. It’s bad enough that I have to go through all this, when I’m relatively able-bodied and in possession of my faculties, a job, a house, a family, and a relatively stable life. But those who are far less fortunate, and who have paid an unimaginably high price for the sake of this nation… well, it just seems awful to me.

What seems even more awful is this attitude I keep coming across about how doctors have to work hard enough at their trade, without having to extend themselves for people like me. As though learning to communicate with me and figure out what’s up with me in ways that are accessible to me doesn’t matter one bit. As though any communication breakdown is totally on me. I am more than willing to do everything I can to communicate with my doctor(s), but I’ve been injured a bunch of times, and I’m a bit impaired, so I do need some help.

That’s why I seek out medical attention, to begin with. And that’s why I try like crazy to communicate in any way I can find… only to be rebuffed by docs who are irritated at my approach and don’t really have the time to get to know me well enough to tell if I’m really okay, or if I just think I am.

I really want to be positive. I really want to be hopeful. I really want to be generous and gracious and extend myself to my beleaguered doctor(s). But right now I’m too tired from being lectured about how hard doctors have it, and how I can’t expect too much from them, and how other people are much worse off than me, so I shouldn’t take up too much of their time, I’m too frustrated, too … well, everything… to see things in a rosy light.

The ironic thing is, I started out this whole quest from a place where I was totally DIY with regard to my health. I stepped into the fray, agreeing tacitly to call a truce with the establishment and give the medical field the benefit of the doubt, and keep an open mind, be compliant, try to be the best patient I can be. But now I’m being sent away again.

So, I’ll just keep looking. I’ll keep asking questions. I’ll keep recording my life. I’ll keep pressing for answers I need, even if I have to look outside the usual areas (and inside my own heart) for the answers I need. I’ll go back to doing things  the way I always have — on my own, because nobody else has the time or the energy or the willingness to help me in the places I’m the most vulnerable. And I can’t leave myself wide open to that level of dismissal and neglect.

Not anymore.

TBI and PTSD – The chicken or the egg?

I’ve been giving a lot of thought, lately, to how TBI and PTSD interconnect and “feed into” each other. In my experience, the two are closely interconnected, and they can make each other pretty confusing and convoluted. Each condition changes the brain in subtle but important ways, and when the two interact in one brain/body/mind/spirit, the compounded difficulties can be exponentially more difficult to identify — and treat.

Traumatic brain injury is by its very nature traumatic, and post-traumatic stress disorder comes out of trauma. So, when you fall and hit your head, or you are in a car accident, or you are attacked and knocked out, trauma happens to the body. The body is threatened – sometimes mortally – and the brain kicks in with all sorts of great hormonal and biochemical survival mechanisms. Adrenaline gets pumping. Endorphines start flowing. Glucose gets delivered to muscles. And the less-survival-based reactions we have get pushed off to the side, so our bodies can focus on one thing: survival.

Even if we are not consciously aware that we are in danger — like when I fell down the stairs in 2004, and I didn’t fully realize the extent to which my physical safety had been threatened — our bodies are aware that they are under attack, and they respond accordingly. It’s not something we can control, it’s not something we should control. We need our brains to be able to care for our bodies without our minds knowing how to do it. The problems start, when our brains don’t realize that we’re out of danger, and/or we get caught in a constant feedback loop of detecting perceived danger, reacting to it, stressing out, and never getting a chance to settle down.

That settling down piece is very important. After our sympathetic nervous systems have risen to the challenge(s) of a perceived threat, our parasympathetic nervous systems need to kick in and help our bodies chill out. Rest. Restore. Relax. Digest… Take a break and get back to balance. But if we never take a break and get our nervous systems to relax and get back to normal, we can get stuck in a constant roller-coaster of fear/anxiety/stress/hyper-reactivity that just won’t quit. And traumatic stress eventually turns into post-traumatic stress disorder. Not fun for anyone.

One of the big ways I think TBI contributes to the development of PTSD is in the “debriefing” phase after a crisis or trauma. TBI can impair a person’s ability to self-assess — sometimes we literally don’t know that something is wrong with how we’re experiencing/reacting to life. It can be harder to detect physical experiences and decode behavioral problems, not to mention cognitive ones. And that diminished ability to self-assess makes it more difficult to self-regulate… to consciously and deliberately change your behavior and actions so that you can “power down” and let your over-taxed body restore itself.

At least in my case, when I went through traumatic experiences — let’s take one of my auto accidents as an example — I wasn’t able to think things through after the fact and assess how I was feeling. I literally didn’t know that I was having trouble understanding what people around me were saying. I thought it was them, who were suddenly refusing to speak intelligibly. I literally did not realize that my sleeping schedule was off — I just stayed up later and got up earlier and pushed myself to go-go-go… and then drank and drank and drank to get myself to relax. I wasn’t even able to determine how I was feeling physically. All I knew was, something was up with me, and it really made me feel awful.

So, I pushed myself even more to “keep up”… and it just added to my already overtaxed body being stretched beyond its means. Not good.

A few posts back, I wrote about being wired to survive and all the biochemical activities that take place as a result of some traumatic crisis. The thing to remember about that wiring system is that it is totally independent of rational thought… but rational thought is necessary to deal with its aftermath. The physical experience of all that adrenaline and endorphins and glucose is not a walk in the park. Our bodies need our brains to take over, after we have rushed to safety, to tend to our frazzled nerves and make choices that allow us to relax, regroup, recuperate, and restore the delicate balance in our central nervous systems.

But with TBI, even mild ones, the brain is impaired and it cannot process clearly. So, we can end up making choices that do not help us relax, that keep us on edge, that keep us going-going-going, so we never really get a break from the crisis and drama.

And post-traumatic stress disorders emerge, which further alter our brain chemistry and how we make choices and take action in our world. PTSD actually alters our cognitive functioning. It makes us think differently than we would, under normal, non-stressful conditions. And that different thinking is not always the smartest thinking.

But wait, there’s more…

Impairments to our thinking — our heightened hyper-reactivity, our hair-trigger response systems that are fried and frazzled — can cause us to make choices that are dangerous and risky. Choices that can cause further head injuries. Being all PTSD’ed-out can make us very quick to anger, in situations where we’re likely to get in a fist-fight, even if our opponent is twice our size. It can make us “slow on the uptake” so we miscalculate choices while we’re driving. It can cloud our judgment about whether or not to take up skydiving. And our increased appetite for stimulation can cause us to pursue activities that are custom-made for yet more traumatic brain injury.

And so, we end up with a vicious cycle of traumatic head injury feeding our post-traumatic stress, which evolves into disorders of mind, body, heart, and spirit… and leave us wondering why the hell everything around us is going to shit. Our brains have been injured, and our judgment is impaired. And each condition feeds the other.

I’m not sure how much research has been done on the interactions of TBI and PTSD. I think it’s a topic that’s ripe for harvesting, and we could probably learn a lot from taking a close look at the two pieces of the puzzle. I think that folks being treated for PTSD should also be evaluated for TBI, and vice versa. Having experts and folks in positions of authority say that “most TBI suvivors heal” sends the message that the brain will just take care of itself, and everything will be fine. But while the brain is healing — to whatever extent that may be — post-traumatic stress can emerge, which can feed a vicious downward spiralling cycle that affects not only the mind, but the spirit and the body as well.

And that needs to be addressed.

And I do more of that here…

Head injuries make a big difference

I’ve been looking around a lot, lately, at all sorts of different materials — in books as well as online — about how the brain and the body interact with each other. The gray mass inside our heads is getting more and more press, as people pay closer attention to the after-effects of the Iraq and Afghanistan wars, and hear about how so many vets are affected by TBI.

I can’t believe we had to have two wars to figure out that TBI — whether it’s open head or closed head wound, whether it’s mild or severe — can have a substantial impact on people’s lives after the fact.

I can’t believe we don’t know more about this. People have been getting hit on the head since time immemorial. Why is it we’re only starting to take it seriously now? People have been recovering from blasts for generations. Why is it that we’re only starting to study it now? What is up with us, anyway?

I am also more than a little incredulous that the human race — which is defined by its brain — doesn’t know more about this thing that everybody has. I mean, come on people. What’s taken us so long to start paying attention to this common organ of ours? And why does it take war and injury and extreme circumstances to perk up our attention sufficiently to realize we don’t know nearly enough about this thing called the human brain?

What is up with that?

I mean, so many different societal ills can be traced back to head injury — domestic violence, violence in general, social dysfunction, emotional problems, even mental illness, financial woes, crime, illness… there are just so many ways head injuries can totally screw us up, and an awful lot of people experience them — check the stats on the left side of this blog, if you’re not convinced.

Head injuries do have an impact. A big one. And as our tens of thousands of troops return from Iraq over the coming 18 months, we’re probably going to be seeing even more impact — not to mention a whole lot of PTSD fallout throughout this country. I’m trying to be hopeful, but I must say I’m worried.

I just hope we can figure out that head injuries matter, and that PTSD is something worth treating, before we have to learn too many lessons the really hard way.