The hurt of the hidden wound

Got a tip about this article today. Good reading – check it out.

It was July 4, 2009 when Lieutenant Colonel Stewart Hill had his independence taken away from him. But he doesn’t remember much of what happened on that hot, dusty Saturday, and has no recollection at all of the moment the lights went out on his former life for ever.

His last memory was of a Chinook helicopter rising from a ploughed Afghan field. It carried the lifeless body of 18-year-old Private Robert Laws and other injured men of the Light Dragoons and 2 Mercian, victims of an attack with rocket-propelled grenades by the Taliban. After that, the gaps have to be filled in by others.

Read the rest here >>

Working TBI issues one at a time

Traumatic Brain Injury issues do not have to sideline you and disqualify you from a productive and satisfying life. There is a way to address your own particular issues, even if your issues are unlike those you hear others talking about. Despite multiple TBIs, starting in early childhood, I have been dealing with recurring concussion/head injury issues regularly and very successfully for years. I have not received any formal rehabilitation, until about a year ago. It’s helping immensely, but I wasn’t “dead in the water” before I connected with my neuropsych. Through trial and error and a whole lot of hard work and practice, I’ve figured out how to make it in the world, TBIs and all.

For me, successful recovery is more about your method and techniques, than it is about treating a specific symptom. Everybody’s symptoms are different. What we have in common is the nature of our injuries — our brains have been hurt, and they don’t behave the way they used to, anymore. It’s confusing and frustrating and overwhelming, and it is really tempting to give up.

A lot of time, I hear people who have been affected by TBI (both survivors and friends/family members) say that when it comes to dealing with TBI, they just don’t know where to start. So, they settle for less of a life than they should/could have.

It’s true – it is hard to know where to start. The brain affects every single aspect of our experience, cognitively, behaviorally, physically… you name it, the brain is involved. And when the brain is injured, then you’ve got problems.

Without a doubt.

What I have found particularly helpful is a daily practice that is sort of along the lines of Give Back Orlando’s approach. It’s not always easy, and it can be time-consuming, but without it, I’d be sunk. Here’s how I handle my issues and manage my life:

1. Each day, I write down the things I want to accomplish. The things I want to do. The things that will make my life worth living. I write it all down in a list format on the blank side of a piece of 8-1/2×11 scrap paper (I’ve got tons of that), and I put checkboxes beside each item. I also write down the times I want to get them done, if time is important (like an appointment or a deadline). I mark the most important ones with yellow highlighter, so I don’t miss them.
2. I take this list with me as I go through my day. I use it to keep myself on track and remember what I am supposed to be doing.
3. If/when I accomplish something, I put a check-mark in the checkbox I drew beside the item and I make a note about why it worked out (like “I was focused” or “I HAD to get this done”).
4. If I did not accomplish something on my list, or it got totally screwed up, I put an X in the checkbox and I make a note about why it got screwed up (like “I was too tired,” or “I ran out of time because I was impulsively doing other things”).
5. Either during the day or later on, I take different colored highlighters and mark the checkboxes of the things I got done with green. I mark the checkboxes of the things that got messed up with pink (I hate pink). And I mark the checkboxes of the things that didn’t happen through no fault or doing of my own with orange.
6. At the end of the day — or on the morning of the following day, if I am too tired the night before — I sit down with the list and look at how I did. I make notes on the paper about what caused me to mess up. I think about what my day was like and I think about how I could have done things differently.
7. I also make a point of learning about the parts of the brain that manage those things I have trouble with, and throughout the course of my days, I exercise those parts by doing those things in enjoyable ways, so the affected parts work better when I’m doing necessary things I’m not that keen about. For example, I have had a lot of trouble reading and comprehending what I read, since my last accident in 2004. To get myself back on track, I practice reading things I really enjoy and get my blood pumping — like action adventure thrillers and magazine articles about things that fascinate me, and books about current subjects that others are talking about. Malcom Gladwell is a great one to read, because he’s a great storyteller, and so many people have read his best-selling books. I can discuss what I’ve read from him with just about anyone, and they (unknowingly) help me remember and process what I’ve read. The trick with this, is to make sure I don’t wear myself out. I can tire myself out quickly by being too consumed by activities that fascinate me, and when I’m tired, it introduces a whole other set of complications.
8. When I am putting together my list of activities for the next day, I make a point of referring to my lists from the past days, seeing what was derailing me, and figuring out coping strategies for how to handle my new set of activities. Failure is not an option for me, and some things MUST be done well, or they should not be done at all.

It’s an ongoing process, and it’s become part of my everyday routine. It is extra work, but oh, how it pays off!

It has taken me some time to get this system together in a way that works for me. Give Back Orlando’s approach is excellent, but I needed to tweak some things for my own purposes. I need to be a bit less rigid with how I manage my time, than they appear to be — I understand the need for holding to a schedule, but I have to be more flexible, because that is how my daily professional life goes — it’s a stream of constant interruptions that keep me on my toes. Having my list nearby all the time helps. I also put it into my computer at work, so I am tracking my progress throughout the day.

I am also more expansive than Give Back Orlando with my explanations for why things messed up. Fatigue and exhaustion factor in very strongly for me, as does anxiety, so I focus on them pretty intently.

But no matter what the differences between me and GBO, the approach is more or less the same — decide how you want to live your life, and then figure out what issues are keeping you from accomplishing what you want to accomplish. Address those issues on a case-by-case basis, watch for emerging patterns. Learn about the things that are holding you back. And never, ever, every give up working at achieving what you want to achieve.

(Speaking of Malcom Gladwell, in his book “Outliers” he talks about how you need to do something for 10,000 hours in order to get really good. Regardless of innate talent, people who do what they do for 10,000 hours are consistently better than people who practice/do less. So, it looks like true success is really a matter of time. I’ve got time — it’s one thing I do have!)

If you do your daily planning and analysis and remediation regularly and with intention, and you believe that you are capable of change in your life, I truly believe that (no matter what anybody else has to say) you can overcome the cognitive-behavioral and physical pitfalls of traumatic brain injury. You do not have to abandon your hopes and dreams and settle for less in your life.

You just have to figure out what you want to do, be determined to do it, and work your ass off to get there.

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

Duty to Warn: The Fort Hood Murders/Suicide and the Taboo Question

The Baltimore Chronicle has an interesting article by Gary G. Kohls, MD about the role of psychiatric medications in the Fort Hood incident. From the article:

Most of us have been listening to the massive, round-the-clock press coverage of the latest mass shooting incident at Fort Hood, Texas. Seemingly all the possible root causes of such a horrific act of violence have been raised and discussed. However, there is an elephant in the room, and it’s something that should be obvious in this age of the school shooter pandemic.

We should be outraged at the failure of the investigative journalists, the psychiatric professionals, the medical community and the military spokespersons who seem to be studiously avoiding the major factor that helps to explain these senseless acts. Why would someone unexpectedly, irrationally and randomly shoot up a school, a workplace or, in this case, an army post? Why would someone who used to be known as a seemingly rational person suddenly perpetrate a gruesome, irrational act of violence?

The answer to the question, as demonstrated again and again in so many of such recent acts of “senseless” violence, is brain- and behavior-altering drugs.

…

You can read the rest of it here.

I can see his point, and I think it is a good idea to factor in the potentially dangerous effects of psychoactive drugs. But I also believe there are many layers to this, the effect of drugs being only one of them. Something(s) else contributed to pushing the shooter to that point. And I’m not sure we can fairly lay all the blame at the feet of the pharmaceuticals industry.

Whatever the cause of the rampage, this issue of pharma-gone-bad is of particular interest to me, because as a multiple-TBI survivor with a bunch of cognitive-behavioral issues, it could be all too easy for a “qualified” doctor or neurologist or psychiatrist to load me up with a bunch of pills and send me on my way. I consider myself unbelievably fortunate and blessed to be working with a neuropsychologist who is very wary of pharmaceuticals and approaches them as a last resort, when all else fails. They are also very happy when I come up with alternative solutions to my issues that work well and do not involve drugs –  like exercising regularly as an antidote for fatigue and drowsiness and a way to wake up fully in the morning.

Interestingly, my psychotherapist tends to come down on the side of drug therapies for individuals with attentional difficulties. I may have to cut them loose, if they turn out to start pressuring me to resort to drugs. If they so much as start hinting at me using them, simply because other approaches “don’t appear to work as effectively” I may have to have to reconsider working with them and seek help elsewhere. Who knows? I may even cut out the psychotherapy completely.

Hard to say, at this point. I think it’s been helping me in some ways… no, I’m pretty sure it has.

But I have been growing a little more leery of my shrink, over the past month or so. They seem more distant than they did at the start. They also have said some things to me over the past couple of sessions that don’t sit right with me, but I haven’t actually followed up on. I should probably do that, to clear the air. It’s hard for me to spend the time and money with someone who I think doesn’t believe me, or seems to be insinuating that I’m misrepresenting my difficulties to the rest of the world. I’m not sure if they think I’m worse off than I appear to be, or if they are just having a hard time, themself.

To be fair, they did suffer a devastating personal loss, last year about this time, so I think it may be messing with their head a little bit. They have definitely not been at their best, of late. So, I’ll cut them some slack, give it some more time, slow things down, and not let them pull any punches with me. We’ll see how it goes.

Bottom line (if there is one) is… mental health care providers can have problems, too. And those problems can get to them in some pretty serious ways.  I’m just glad my shrink isn’t trained in small arms — I’m assuming they aren’t — and that they don’t work in an environment where the use of firearms is part of the job.

… the winding milestones of my identity exoskeleton unraveling…

Absolute Twisted Zero has a really beautiful post out there – Seeds of Change…

“…

Look closely. You see the winding milestones of my identity exoskeleton unraveling. Rituals hold me together while identity reconstruction is underway. Identity helps organize my Human Animal social behavior. Healthy routines replace some rituals. I change slowly with multi-sensory training.

Around the edges is a lot of light. I am growing out from the rituals of the Cult of One. A Book of Rituals is not Identity. A Cult of One breeds anti-social behaviors. I am a molting Human Animal.

Wrapped round the trauma of my brain injury is a tourniquet of panic. I found no identity repair manuals. I have lots of self-help books with no section on identity reconstruction for people like me. I am not eligible for identity transplant benefits.

…”

Read the whole post here…

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

Part 2

Part 3

Part 4

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…

Good TBI help shouldn’t be this hard to find

Update: Give Back Orlando is back! But the post below addresses a larger issue which remains problematic.

June 6, 2009 – Give Back Orlando’s Site is Gone

At least, when I go to
http://www.givebackorlando.com/
, I get the following message:

Directory Listing Denied

This Virtual Directory does not allow contents to be listed.

The message shows up on the other pages of theirs I’ve bookmarked. And I’m crestfallen. Because I really really wanted to have them as a regular resource. And now they’re gone.

Any of these could have happened:

• they got so much traffic (from bots or from real people) that their server complained and went down and the person in charge hasn’t noticed yet and rebooted
• they attracted attention from people who didn’t like what they had to say, who made them take it all down
• they attracted attention from people who had ownership and copyright of some of the content there, who made them take the site down
• they started getting all sorts of questions and comments and flood of info requests from outsiders that it got to be an overwhelming PITA
• the folks who belong to the group didn’t want the rest of the world privy to their stuff, so they had someone hide it from outsiders
• they aren’t in the assistance business beyond Orlando, and they got too much outsider input/feedback for the site to make any sense, or
• some other thing we’ll never know about.

Whatever the reasons, it’s a pity that the site is gone. I’m still using the material, and I do find it helpful (so far). But it’s a shame that I can’t get to them anymore.

This disappearance is really emblematic/symptomatic of a lot of the head injury help resources I’ve seen around – they start out strong, then they get overwhelmed/-ing, and their work is just not sustainable. Either they get too big too quickly, or they don’t plan for expansion, or they just don’t have the bandwidth for the mounting tasks, or they are using tools that make the job harder than it has to be (like starting a whole website with rich media and interactivity and snazzy design, instead of a humble blog) … or, it turns out to be a very different effort, in the long run, than they envisioned it at the start.

I see this all the time with TBI blogs. No judgment on TBI bloggers, to be sure. Heck, it happened to me, when I first started this blog. If you look at my posting history, you see a flurry of activity for the first month or so, then silence for nearly a year, before the motivation started kicking in again.

It’s wild, doing the TBI blogging. You start out all fired up and wanting to make a difference in the world by sharing your amazing story, then you get hammered with all this info overload — from within and without. Not only do you get completely swamped by the many varieties of information out there and trying to parse it all out and make sense of it all, but you also get overwhelmed by all this internal self-realization that comes up, and you realize more and more how less and less capable you are in respects you once thought were ironclad, and you start to wonder if maybe you’ve revealed too much about yourself too soon and maybe that might prevent you from finding and keeping a job… and/or friends… and/or your hard-won position in society… and you have to drop back to find out where you really stand. You have to figure out who your audience really is, and why you want to talk to them in the first place.

After soul-searching and plumbing the depths of your experience, you end up either totally fed up and just wanting to quit … or… committed and motivated and eager to just move forward, even if it’s not perfect, even if you don’t have all the answers, even if it means that you’re going to have to make it a huge priority in your life and bump it to the top of your to-do list, each and every day, sometimes at the expense of other things that need to be done but will just have to wait.

A lot of people never get to that committed point. I suspect it’s because they get into it too soon. A lot of TBI survivors, from what I’ve heard, have a tendency to over-reach in the first months of their recoveries, and take on things that they don’t yet realize they cannot do. That happened to me, after my last TBI — I was taking on way too much, but at the same time, I was getting next to nothing done. I thought I was moving and shaking, but I was spinning my wheels in place, and it took losing several jobs and a lot of money to get me to pay attention to what was going on with me… and that was without the benefit of any formal rehab.

I would imagine that people who get formal rehab may consider themselves capable in different ways — having been shown tools and been given training, they may overestimate their autonomous capabilities… and end up either flaming out or getting into jams that are demoralizing and/or embarrassing and are in any case real disincentives to keep going.

It’s always unfortunate when this dropping out happens, but I think it goes with the territory of TBI. Especially MTBI, which is one of those pesky hidden disabilities that can depress the living hell out of you, if you dwell on it too much. If the focus of your online work is to educate people about the kinds of problems that accompany mild traumatic brain injury and you want to talk about solutions, it can be mighty difficult, because there are so many confusing problems to talk about…  and MTBI makes finding workable solutions to sticky problems difficult, because in order to figure out solutions, you have to know what the problem is, and your mildly TBI’ed brain isn’t always up to that task — and when it thinks it is, sometimes it’s not.

And then there’s the existential angst… If you’ve got an injured (okay, let’s be honest, damaged) brain, what right do you have to talk about anything? Especially with any level of expertise? Isn’t one of the requirements of expertise and authority, having a fully functional brain? Who are you to talk about it? Aren’t you a patient, after all? A victim? A survivor? Someone who is at a disadvantage, cognitively, who can’t even get through the day, sometimes, without making a mess of everything? Who are you to talk about TBI? Shouldn’t that be left to the experts?

But the experts are either few and far between, or they are otherwise occupied — especially with TBI, where the moderate and severe forms are a lot more interesting and dramatic than the “mild” kind, and they can get actual numbers and data on the impacts and effects. So, unless you talk about your (M)TBI, who’s going to? Who’s going to speak to the millions of people out there who suffer supposedly mild injuries to their brains, but find themselves increasingly incapacitated through the course of their lives and are so utterly, totally alone in a world that is far more interested in money-making injuries that render quantifiable data? Who’s going to speak to them? You?

So, there’s the quandary and conundrum. You want to help. And you want to share. But the more you try to share, the more keenly aware you are of your limitations and difficulties, and if you dwell on them too deeply (even if for the sake of helping others see that they’re not alone), you can end up in this TBI vortex of criticsm and self-doubt and self-assessment that goes nowhere, because in the process of examining yourself with a fine-tooth comb, you’re seriously wearing yourself out and making yourself even less cognitively viable.

So, the downward cycle continues. And some people never pull out of it. Just check online. Inactive TBI blogs abound. And now you know (part of the reason) why.

That being said, I’m collecting links to information from trusted sources which are funded and organized and whose purpose is to educate the outside world. I’m going to start with the Brain Injury Associations of different states. I’ll start at Alabama and end up at Wyoming, to make it easy on myself.

Because good help for TBI shouldn’t be this hard to find.