The good news is, I’m starting to get it now.

The bad news is, it took me 40-some years to realize it.

Part of the reason I always had such a dim view of myself, was this temper problem. Out of nowhere, I would just lose it. Over stupid little stuff. Lame stuff, really. The kinds of things that other people had no problem with.

But me… Oh, I’d just GO OFF… level everything in my path, like some earthbound Hurricane Andrew… or Katrina…  Powerless to stop it. Helpless to explain it. All I could do was clean up the mess afterwards. And sometimes I couldn’t even manage that.

It was so debilitating… so destructive. It wrecked a lot of relationships, and it put me at odds with my family for years. It was just awful. And I couldn’t figure out why the hell it was always happening to me.

Then, my neuropsych explained to me that I’m not the only one with this — it’s amazingly common with TBI survivors. And it’s neurological, not psych0-spiritual. I don’t have a sickness of my soul – I have a neurological issue with fatigue and emotion, and it didn’t mean there was something wrong with me. It was all about my brain.

{sigh}

I’m not a total loser. My brain has a mind of its own, sometimes. And now that I’m aware of it… I can do something about it.

I didn’t want to exercise, when I got up this morning.

But I did it anyway.

I was feeling “gunked up” and sluggish and I have a lot to do. I didn’t want to spend the first half hour of my day riding the bike and lifting my 5 lb weights.

But I did it anyway.

And I’m glad I did.

I would like to say that I was able to follow through with my morning routine because I realize it is good for me, and I look forward to doing it every single day. But that would be untrue. Fact of the matter is, I’ve built this routine into my daily schedule so completely, that to veer from it or deviate in any way causes me intense anxiety. Its not so much high-minded intentions and enlightenment that gets me on the bike and stretching and lifting weights, first thing. Its the sheer force of  a strictly enforced habit.

A friend of mine tells me it takes six weeks for a habit to form. Well, I’ve been at this morning routine for nearly six months, and its so ingrained in me that doing something different is not a prospect I relish. I have a tendency to intense anxiety and nervousness — and I use that to my benefit, by creating positive, constructive structures which cause me intense anxiety if I deviate from them.

If you can’t get rid of your neuroses, you might as well put them to work for you. That’s what I did this morning. And I’m glad I did.

‘Cause now I feel a whole lot better. My sinuses have cleared, my body feels more awake, and I’m mentally much clearer.

Clear is good. I have a lot to get done today. It’s Sunday, and part of me feels like I should be taking it easy, as I had such a rough and long week, last week. But if I work this right and play my cards right, I can actually settle into what I’m doing and take it easy while I’m doing it.

Easy does it, say friends of mine. After hearing them say this for 20 years, it’s starting to sink in.

About time

Anyway, this morning I realized I’ve run out of my pre-printed daily tracking forms, and I had to go back to writing things out by hand on scrap paper on my clipboard. In a way, I like this better. I’ve recently realized that the more stressed I am, the worse my handwriting is, so I can use that as a measure of how tweaked I am over things. Since being tweaked over things sets in motion a whole bunch of complications that set me off-track — I start to load up all sorts of extra activities on myself that do not need to be done — I’ve realized that I can gauge how well or how poorly I am doing, in general — and how well or how poorly I am likely to do through the course of the coming day  – by my handwriting.

Having a pre-printed form with lines on it that keeps me neat and tidy is actually a short-cut that keeps me from having to really focus in on my handwriting. It’s also a little bit of a crutch for me, as it structures my day for me and tells me what I’m supposed to do — and when. I’ve been very much in need of that kind of structure, for the past decades, and I’ve suffered with out it. Stuff just didn’t get done. It just didn’t. Important stuff. Stuff that I’m now paying the consequences of not finishing. And a lot of stuff got started and commitments got made that had no business ending up on my plate. Not having that structure, not having a consistent way to go about things, was — well — in some cases small-scale catastrophic.

But in the past couple of years, since I realized what havoc mTBI has played in my life, I have done a really focused and intensive job of ordering my life in a much more constructive way. I’ve created routines for myself specifically to strengthen and support the parts of me that need help. I’ve taken myself to task for lots of things that I messed up for no good reason, and I’ve taken steps to remedy them. I’ve really stepped up in many, many aspects of my life that used to either languish or fall by the wayside. And I’ve made tremendous strides in the past 18 months — largely because I suddenly realized that I had problems, and those problems needed to be solved.

Now I find myself not only able to follow through with the required activities I set for myself each day, but I’m also better able to manage the optional ones.  I’m also better at distinguishing which ones matter and which ones are wishful. I am better and not packing my plate full of things that “must” be done, and I’m better at deciding which ones are energy drains and not contributing to my overall progress.

It’s been a long time coming, but it’s finally starting to come together. And a key part of all of this has been the force of habit. Identifying what I’m going to do, and doing it religiously, each and every day without fail. The things that are important to me — like exercising — I do every single day. Without fail. At the same time, each and every day. Without fail. And it’s the daily aspect of it that I think really makes a difference.

Now, a lot of people say that you don’t have to exercise every single day, in order to get benefits. Well, I tried that, and in my case, if I don’t do my exercises each and every day, I end up forgetting about them, doing other things, and not doing them even once a week. Trust me – I’ve tried to do the “half-way” fitness routine, and it doesn’t work. So, I broke the cardinal rule of fitness and I do my workout every single morning.

No, I do not give myself time to “rest” between daily workouts. I do not give my body time to “catch up”. But I also don’t push myself really hard every single day that I exercise. Some days, I’ll put a little more into bike ride, pushing myself to work up a sweat. Or I’ll focus on more weights with my lifting, so I feel a little sore the next day. But I don’t give myself time off, because by this time exercise has become like any other daily activity — like eating a meal or sleeping. It’s just part of my daily routine. It’s just part of my life.

Force of habit to the rescue.

And now that I’ve got the exercise thing down — which still takes discipline and determination, some days, like today — I can extend that into other areas of my life. I’ve been giving a lot of thought to what I want my life to be like, on down the line, and I’ve been giving a lot of thought to what parts of my life now are contributing to making that a reality later. I’ve come to the realization that my neurological and physiological issues may never go away and I’m going to have to factor them in at every turn, but I’ve also proven to myself that I am capable of positive change, and if I follow certain steps and do so consistently, I can — and will — make the kinds of changes I need in my life.

I may not be able to get back the years and the money and the relationships which fell prey to my injury, but I can work towards building something new for myself which is a reflection of what capabilities I have, and what my character truly is.

Ultimately, for me, the real power of the force of habit is about it relieving me of the need to think through every single action I take. Developing good habits frees up valuable time and energy I would otherwise be spending considering the pros and cons of what I’m doing, getting my head around the reasons why I’m doing them, and convincing myself they’re worthwhile. Developing rock-solid habits around good activities and behaviors enables me to focus on the important stuff — the actual doing of the activities, not the constant thinking about them. Developing positive habits frees me from analysis paralysis, and it acts as a kind of artificial executive function that keeps things running smoothly, even as the thinking parts of me are noodling about how to go about things.

Set-in-stone habits take care of the What and Why, so I can focus on the How.

And that’s a good thing.

So, that being said, it’s time to come up with some more habits. It’s time to create some more structure around what I absolutely positively need to do, in order to get where I’m going. This morning I created my daily planning list without the benefit of a pre-printed form. And my day is progressing really well anyway.

Good, good, good… and more good.

m had some extensive comments to one of my earlier posts — good stuff that bears repeating:

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

I had heard about the BI-IFEA from Kathe Perez, but since it’s a LinkedIn group, which is part of a professional networking site, I’m reluctant to even go close to it. I’m on LinkedIn, but there is no way on earth I am going to reveal to the larger professional community that I’m a multiple TBI survivor. In these economic times, I’m not taking chances with people’s tolerance and enlightenment levels. It’s just too risky. It’s a shame I can’t get to their resource lists. I’ll have to check out the DCOE site. At first glance, it looks quite good.

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

Thank heaven for that! You go… I’ve been thinking about how much we need something like that — a clearinghouse of all the collected information from the different BIA chapters. Having it segmented out from state to state is tremendously frustrating. From where I’m sitting, there should be a central BIA database from which all the chapters pull – not individual respositories. Have a decent data warehouse — at the very least, a DB with meta data which indexes all the collected information and links to it, for common access — and break out the individual state-specific info based on a field in the DB. Please, please, please enlist the help of a competent data architect to design the DB  – I’m assuming, perhaps erroneously, that you’re not such a person. Having a properly designed and normalized database for this can make everyone’s life a whole lot easier. I’m happy to help with the DB design (I’ve done a bit of it, myself, in my day — for large-scale enterprises with millions of customers — scale, baby, scale) so let me know if I can contribute somehow. Hmmm… now you’ve got me thinking… I’ll have to capture what’s coming to mind.

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

And here’s yet another one of my frustrations — there’s all this great information out there, but it’s not generally available to people, unless they know what to look/ask for… or they connect with another person who has that specific knowledge about the sites. Ugh – it’s just so frustrating. Will a returning vet understand how/where to look — or their spouse? Or their significant others/family/friends, etc? And if they do find their way to the info, will they be able to get to it, to navigate it? It’s the eternal issue with the online world — figuring out what info is where, and how to use it. As much as everyone likes to come up with their own site design, it would be nice if folks could agree on a best-practices information architecture, especially with regard to TBI information. And then we have the issue of the content itself — is it scholarly, academic, accessible to everyone, written for the general population… what? Even if you are fortunate enough to find something, can you actually use it?

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

Yes, quality information is key. But again, can people use it? I think there should be some sort of hierarchy established, some sort of ontology of sorts, around the type of information that’s out there.

As for ‘outside the box’ therapies, if they work and they aren’t dangerous, I think they can be an important part of recovery. Some of the more fringe treatments worry me, and I tend to be concerned about extremes of scientific/medical rigor — folks that are totally into it, can let it keep valuable treatments from the population, while folks who want to just get treatments into the hands of the needy may bypass the “quality assurance” stage. Conundrum! I think there needs to be a middle-ground somewhere.

Regarding commercial interests, I was thinking more along the lines of rehabs plugging their own flavor of TBI rehabilitation, to attract new patients. Or doctors who are proposing radical new treatments which may or may not work — I’m thinking here of  Dr. Daniel Amen and his SPECT-scan-based approach. Maybe it works, maybe it doesn’t, but “It requires the injection of a radioactive material,” which I do not find particularly appealing. I had an MRI and they gave me a contrast agent which made me ill (and I’ve read it may have a bad effect on my kidneys). However, someone who is desperate for help, might go down that route — “Shoot me up, baby! I’m suffering, and nobody gives a damn!”.

This is just one example I can think of, off-hand. Given that CAM or non-traditional healing is generally not covered by insurance, and people are prepared to pay for it anyway, it opens the door to even more questionable stuff, which people may feel is worth the risk and the expense, because they cannot get any sort of help or information anywhere else.

Personally, from what I’ve observed among friends and acquaintances, people are willing to put up with all sorts of “treatments” from alternative “healers” in no small part because the “healers” are so willing to share information, and they genuinely care for the people they’re working with. One example I can think of, was an “aesthetician” I once met (read manicurist and pedicurist and beauty salon owner) who wanted to do more for her clients, so she went to some workshops and took some classes, and started representing herself as a “cranial sacral practitioner” — just because she did laying on of hands on people’s heads and lower backs. True story. And scary.  Care is so very important — but it needs to be accompanied by intelligence, competence, integrity, and quality control.

Having good information available to people who need it in a way that’s accessible is an important first step.

I’m up early today. I’ve been waking up at 3:30 a.m. or so, for the past few days, and it’s getting a little old. What gets even older, is still lying in bed at 5:30 a.m., watching the sky start to get light, thinking of everything I could have been doing for the past 2 hours, instead of looking at the ceiling. Or tossing and turning.

I’ve been really struggling with sleep, lately. I’ve had some shake-ups at home and work, and my whole system just feels really off. I seem to be steeping in a marinade of anxious trepidation, lately. It’s not all bad, though. It feels as though there is something big coming down the pike. And part of me doesn’t want to miss it.

Not getting sleep, of course, is no good. It wreaks havoc with my temperament and my ability to function at my best. But I’m prepared to accept this as a temporary condition, seeing as things have  been quite up-heaving lately.

I suppose this is a good sign. I’m getting better enough to move to the next level. Work is good. Of course, there are daily agitations and political maneuvering that keeps me on edge. But I’m learning lots and getting a lot done, and that’s okay by me. I have also surrendered to the whole experience — I’ve let go of the craving for perfection and needing to have everything be a certain way. I’m much more in the flow of things, and I’m getting a much better idea as I go along of where I eventually want my career to go.

Career… huh.

It’s funny – over the years, I’ve had plenty of jobs. Tons of them, actually, many of them very different from others. I’ve done work that nobody would expect “someone like me” to do (I use quotes, because “who” I am tends to be defined a lot more rigidly by others, than by me). I’ve crossed gender lines many times, in pursuit of a paycheck, taking jobs that people thought were for “the other sex” just to make ends meet. I’m not proud, when it comes to supporting my family. I’ll do what needs to be done. And there have been times when I didn’t have much choice or much leeway in terms of the work available to me.

But now I’m in a position where I’ve accumulated years of experience in my line of work. And I find myself positioned well to more aggressively redefine my career path along lines I want. For years and years, I’ve been an excellent soldier and I’ve served my lords and masters well. Now, I find myself in a place where I am stepping up to take on more of a leadership role. And that’s pretty cool.

Intimidating as hell. But cool.

When I think about it, I’ve invested a tremendous amount of energy in my life, preparing for this time. I’ve always had a very keen sense that there were forces at work in my life that I needed to learn to know — and learn to master -- before I could step up into a leading role in a larger arena. My temper issues, the memory issues, the logistical challenges that come with my territory… it’s all very potent stuff that can derail me at an instant’s notice, and take everyone around me down with me.

It’s no good, stepping into a position of power and influence, when your hidden “logistical issues” are running roughshod over your cognitive-behavioral self-regulation. That makes for confusing and conflicting information in the outside world. “You were doing so well… what happened?!”

For what it’s worth, I’m as human as the next person. For what it’s worth, I am also a pretty talented, motivated individual who has a lot to offer and has plenty of ideas about how to get my offerings out there. For what it’s worth, I am a mass of contradictions and paradoxes, with an uncanny ability to rise — or fall — precipitously. And for what it’s worth, I have put in a ton of time getting ready for this next chapter of my life. Time to move into it. Time to get  going. Time to not just make it happen, but also let it happen.

I’ve had a number of things get in my way over the years, and I’ve managed to overcome nearly all of them. Now, it’s on to the next thing – the next stage – the next big chapter of my life. For all I’ve been through, and all that’s been honed and tempered in me through fire and ice and sturm and drang… well, it’s been worth it.

Back to bed…

I’ve been reading up on University at Buffalo’s work with concussion rehabilitation, using regulated exercise to deal with post-concussive syndrome (or post-concussion syndrome).

I have to say, it’s probably the most exciting news I’ve come across in a while. With all the talk about the NFL’s new post-concussion guidelines (which may or may not make a difference), and the increasing awareness about head injuries, expecially mild traumatic brain injuries (MTBI), it gets a little depressing, thinking about all the people who are getting hit in the head and suffering for years as a result.

A lot of folks are talking about it being an epidemic, that concussions are no joking matter, and lots of people are getting on the helmet bandwagon (especially since Natasha Richardson died from a brain injury while skiing). Prevention is great. But concussion is all but unavoidable in sports — especially student athletics. It happens. All the time. Yet nobody seems to have come up with a reliable way of addressing it when it does happen. Aside from bed rest and taking it easy, suggests for howto deal with concussions/brain injury are few and far between.

We know concussions happen. We know head injuries are common. We know they can have serious long-term consequences. You can try to prevent them, but you can’t be successful 100% of the time. And if you do have a head injury, you have to be sidelined from your life/sport, with no guarantee that the “treatment” will actually work.

I was starting to get seriously depressed.

Then, suddenly, I was looking around the other day and I found that the University at Buffalo has been working with regulated exercise to treat — even heal — the after-effects of concussion. Post-concussive syndrome is, according to the definitions of Willer and Leddy (at UB),  “persistent symptoms of concussion past the period when the individual should have recovered (3 weeks)”. According to them, post-concussive syndrome “qualifies as mTBI.”

This is interesting. I have heard a lot of people say that concussion is an mTBI, and the two are interchangeable. I am not a doctor, and I don’t have medical training, so I can’t throw my hat in the ring on that debate. But it is interesting to me, that people distinguish between the two.

At the UB web page on concussion research, there are some interesting papers, and they do talk about the difference between concussion and mild TBI.

Here’s what they have to say in the paper Retest Reliability in Adolescents of a Computerized Neuropsychological Battery used to Assess Recovery from Concussion (bold is mine)

A recent review … of concussion and post concussion  syndrome provided a model for distinguishing concussion from mild traumatic brain injury (mTBI) and post concussion syndrome (PCS). The model uses the most commonly accepted definition of mTBI and the one proposed by the American Congress of Rehabilitation Medicine and the Centers for Disease Control: loss of consciousness for no more than 30 minutes or amnesia as a result of a mechanical force to the head, and a Glasgow Coma Score (GCS) of 13 to 15 …. The model also uses the most commonly accepted definition of concussion as established by the American Academy of Neurology (AAN): a trauma induced alteration of mental status that may or may not involve loss of consciousness …. Although not explicitly stated in the AAN definition, concussion is generally viewed as a transient state from which the individual will recover fully in a relatively short period of time …. In contrast, mTBI is viewed as a permanent alteration of brain function even though the individual with mTBI may appear asymptomatic. Post concussion syndrome was defined in the Willer and Leddy … model as persistent symptoms of concussion past the period when the individual should have recovered (3 weeks) and therefore qualifies as mTBI. Neuropsychological testing is often used to describe the impairment associated with mTBI and PCS and have done so with relative success ….

So, basically,

• mTBI = a loss of consciousness for no more than 30 minutes or amnesia as a result of a mechanical force to the head, and a Glasgow Coma Score (GCS) of 13 to 15
• Concussion = a trauma induced alteration of mental status that may or may not involve loss of consciousness; it’s a transient state from which the individual will recover fully in a relatively short period of time
• Post concussion syndrome (PCS) = persistent symptoms of concussion past the period when the individual should have recovered (3 weeks)
• PCS, due to its enduring nature, qualifies as mTBI

(Note: I think someone needs to fill in the gap about how PCS satisfies the criteria for mTBI,  if they require that there be some loss of consciousness or amnesia involved. How lasting effects qualifies based on these criteria puzzles me. But for the purposes of this discussion, I’ll let this slide.)

I find this really compelling information, and it helps me make more sense of the whole “concussion thing”. I know I’ve sustained a bunch of concussions in the course of my life, and I also know that I have been diagnosed with “Late effect of intracranial injury.” But I could never really distinguish between the mTBI vs. concussion. I actually thought — and had been told — that they’re the same thing.

But that never made much sense to me, because when I look around at me, and I read that “An estimated ten percent of all athletes participating in contact sports suffer a concussion each season” And that’s just athletes. Plenty of people fall down, too, or are in car accidents. I’m not entirely sure what to make of it. Apparently, hundreds of thousands of people sustain concussions each year, yet the general population doesn’t appear to be completely crippled by TBI (though some people I know would debate that ) How is it possible, that so many people are sustaining concussions, especially in their youth and/or in sports, yet we’re not all running around impaired?

Making the distinction between a concussion that is transient, and a concussion that turns into an mTBI makes all the sense in the world to me. It makes it possible distinguish between someone who’s experiencing short-term issues, and someone who needs to deal with a broader-spectrum and deeper set of challenges. And in doing so, it de-stigmatizes concussion (at least in my mind), by steering clear of the “concussion = brain injury = brain damage” concept, which could be quite debilitating to a youth who has hit their head while playing a sport they love.

There are tons of potential ramifications and implications from being able to state that concussion is not necessarily an enduring brain injury. I may write more about this later, but it requires more thought.

The other very hopeful piece of this is that, by saying concussion is not always followed by brain injury, you’re opening a window to addressing concussions promptly so they do not turn into mild traumatic brain injuries. This, to me, is key. It not only makes sense of the two different kinds of injuries, but it also establishes that it may in fact be possible to treat the concussion to prevent it from becoming a more serious, long-term injury — the “gift” that keeps on giving. And by understanding concussion and brain injury this way, you also up the ante and really infuse the topic of prompt treatment with urgency. If acting promptly to address concussion makes it possible to avoid a lasting brain injury, then it’s in everyone’s best interest to become familiar with and properly trained in the recognition and treatment of concussion.

In this case, if mTBI is only present if concussion symptoms persist, and there’s no guarantee that concussion will result in a lasting brain injury, then prompt recognition and action may save the day.

Now, I’m still noodling over the idea that subconcussive impacts can seriously affect the brain over the long term, which Malcom Gladwell talked about in his article “Offensive Play“. But I am still hopeful. Because while subconcussive impacts may affect the brain, it could be that the damage takes place when no action is taken to address the injuries when they happen. Again, I’m not a doctor or a qualified medical professional, but it seems to me that if actively treating concussion helps with the really obvious issues — as the University at Buffalo has shown it does (albeit on a fairly limited scale) — then it might just help repair lesser damage done.

It might. I only wish I had the medical and scientific background and credentials to be able to speak as an expert on this. But apparently expertise is no guarantee of being able to help out, when it comes to TBI. The vast majority of experts haven’t had the wherewithall to state definitively what can actually be done about brain injuries, let alone recommend specific action that works, and there are thousands upon thousands, if not millions, of people suffering, day in and day out (along with their loved ones and co-workers) with the after-effects of concussion and mild traumatic brain injury.

So, somebody’s got to take the lead in finding a solution… Or at the very least think about finding one. The folks in Buffalo are up to wonderful work, and I can only hope that more folks have the gumption to take their lead and do something about this wretched hidden epidemic of ours.

Now, I’m off to address my own issues of the day.

This is a feature story by ESPN Outside the Lines on the epidemic of concussions in teenage sports and the result of untreated concussions

In 2008, 5 high school football players died during games or practices from getting a concussion on top of a concussion – a condition know as Second Impact Syndrome. A recent study by nationwide children’s hospital in Ohio that found an alarming 41 percent of high school athletes with concussion returned to play too soon. And while football has by far the highest rate of concussions compared to any other sport: hockey, wrestling gymnastics, lacrosse, volleyball, cheerleading, basketball, baseball, softball and soccer all have their fair share. Concussions happen when the brain is shaken inside the skull. And even though they’re common in sports many coaches and trainers still don’t know how to manage them. That’s partially because there is no one-size-fits-all guideline for what to do when a player gets one. Some athletes will heal in a couple days and some in a couple months. Researchers are just beginning to unlock the reasons why.

Watch it here

http://www.youtube.com/watch?v=-4nrxgsRa1o&NR=1

The growing number of concussions in sports has many coaches, trainers and parents thinking twice before risking a second hit for an athlete who may have had his bell rung. In this Children’s Channel video podcast, Joseph Congeni, MD, director of the sports medicine center at Akron Children’s Hospital, discusses the signs and symptoms of a concussion, as well as the latest guidelines for a safe return to the field.

Watch it here

Here’s the video

“If [certain things hold true]…We have found everyone gets better, in terms of their physiology…”

This just in from the University of Buffalo:

UB researchers are the first to show that a controlled individualized exercise training program can bring athletes and others suffering with post-concussion syndrome (PCS) back to the playing field or to their daily activities.

In a paper published in the January issue of the Clinical Journal of Sport Medicine, the researchers report that a program of progressive exercise developed individually for each participant and performed at levels just below the onset of symptoms is safe and can relieve nearly all PCS symptoms.

Read more…

Here’s some concussion info:

Concussion Overview

The term concussion describes an injury to the brain resulting from an impact to the head. By definition, a concussion is not a life-threatening injury, but it can cause both short-term and long-term problems. A concussion results from a closed-head type of injury and does not include injuries in which there is bleeding under the skull or into the brain. Another type of brain injury must be present if bleeding is visible on a CT scan (CAT scan) of the brain.

• A mild concussion may involve no loss of consciousness (feeling “dazed”) or a very brief loss of consciousness (being “knocked out”).
• A severe concussion may involve prolonged loss of consciousness with a delayed return to normal.

Concussion Causes

A concussion can be caused by any significant blunt force trauma to the head such as a fall, a car accident, or being struck on the head with an object.

Concussion Symptoms

• Loss of consciousness after any trauma to the head
• Confusion
• Headache
• Nausea or vomiting
• Blurred vision
• Loss of short-term memory (you may not remember the actual injury and the events some time before or after the impact)
• Perseverating (repeating the same thing over and over, despite being told the answer each time, for example, “Was I in an accident?”)

When to Seek Medical Care

Call the doctor about any of the following situations. The doctor will recommend home care, set up an appointment to see the patient, or send the patient to a hospital’s emergency department.

• A person struck a hard object with the head (for example: tile floor, ice, bathtub) but did not lose consciousness
• Mild dizziness or nausea after a head injury
• Loss of memory of the event (amnesia) for just a few minutes
• Mild headache with no vision disturbances

Go to an emergency department by ambulance in the following situations. For people with less severe injuries not requiring ambulance transport, a car may be taken to the hospital.

• Severe head trauma, i.e., a fall from more than the height of the person or a hard fall onto a hard surface or object with resulting bleeding or laceration.
• Any child that loses consciousness as the result of a head injury.
• Prolonged loss of consciousness (longer than two minutes)
• Any delayed loss of consciousness (for example, the injured person is knocked out only momentarily, then is awake and talking, then loses consciousness again)
• Vomiting more than once
• Confusion that does not go away quickly
• Extreme drowsiness, weakness, or inability to walk
• Severe headache
• Loss of memory of the event (amnesia)
• Perseverating (saying the same thing over and over)
• Someone who takes warfarin (Coumadin) for a medical problem suffers and suffers a significant blow to the head.
• If the person fails to regain consciousness after two minutes, or the injury is very severe even if two minutes have not passed, DO NOT move the person. Prevent movement of the neck, which may cause spinal injuries. If the person needs to vomit, carefully roll the person onto his or her side without turning the head. Call 911 immediately for help.

If you are unsure of the severity of the injury, take the person to the emergency department immediately.

Should an injured person be allowed to fall asleep? Many mistakenly believe it is important to keep people, especially children, awake after they have been struck on the head. Children are often more emotionally upset than they are physically injured after a minor fall. They will cry and appear distressed, but as the parent rushes them to the hospital, children may begin to calm down. Because they have expended a lot of physical and emotional energy crying, they will often want to fall asleep.

• You do not need to keep the child awake. In many cases it may be helpful to the emergency doctor to be able to awaken the child who is now more calm and rested and will behave normally. This gives the doctor a better assessment of the severity of the head injury.
• If, however, a child who was initially normal after a head injury cannot be awakened, or is extremely difficult to awaken, then the child may have a more serious head injury and should be evaluated by a doctor.

Read more…

Over the past year or so, I have been giving a lot of thought to head injury survival through the ages. Getting hit on the head, knocked out, attacked, and generally brain-damaged is about as regular a part of the course of human history as, say, losing your teeth or having a part of your body chopped off.

Think about it — dental care as we know it today is a relatively recent development. Used to be, a blacksmith was the one with the tools to pull a tooth — or you did it yourself with a heavy object slammed against a bad molar, or a string (tied around the offending tooth) and a slammed door. And it’s easy to forget in this convenient age, that once upon a time, people used actual tools to get their work done — lots of them sharp — and lived under conditions that were harsh and unyielding. Chopping off part of a finger — or a whole finger, for that matter — losing part of your foot to frostbite, and/or having a piece of your ear bitten off in a bar fight, happened with a lot more frequency than we 21st century folks recall.

Think about it — once upon a time, wars weren’t fought in faraway lands by trained, dedicated armies that only wanted to vanquish each other. Time was, raiders and looters and rapists and pillagers roamed the seas and the countryside, doing as they pleased to whomever was there. What’s more, in the middle ages, just about the only way am ambitious young man who wasn’t the firstborn in his family could get ahead (other than by taking up a trade or currying favor with some overlord) was to sign on as a mercenary with a local feudal lord and maraud his way to fame and fortune.

In our cozy, warm homes, with only the television and the internet to connect us with a reality outside our own, it’s easy to forget just how rough life has usually been on the human race. And it’s easy to forget that traumatic brain injury is not something that is unique to football players, boxers, and survivors of car accidents and falls. We look at statistics about brain injury — how many of them come from sports and falls and accidents and assaults — and we shake our heads, wondering what we can do to make the world safer — both before and after the accidents.

But think about it for a moment… how safe can we reasonably expect life to be? Granted, nobody wants to have their brain rearranged by unexpected trauma. Nobody actively seeks out a cognitive-behavioral condition that can be not only disturbing but downright disabling. Nobody plans to be at a perpetual disadvantage in life. But it happens.

And it’s been happening for a long time.

So, what do we do?

Certainly, we can try to prevent as many head injuries as possible, with helmets and education and training and good sense. But there’s just no way to live your life freely, if you’re on constant alert about what might happen, and what that might mean for your long-term prospects.

As an old, old relative of mine says, “Life is dangerous!” To try to limit the dangers, also means trying to limit the full range of human experience. To live fully, you need — on some level, anyway — to accept the possibility of harm, damage, danger, injury. To live fully, you need to walk — head up, shoulders back — into the face of some pretty scary stuff, and be prepared to deal with the consequences.

To live fully, to walk fully upright in the world, you have to be a warrior.

Maori Warrior

You have to be ready, willing, and able to look the world in the eye with a resolve that says, “I will not bend before you, I will not break beneath you, I will not yield the ground I have won. I will not falter and I will not fail, until I have reached my final destination.  The only way I am going to fall short is if I fall permanently, period.”

To do this, to think this, to live this as a recovering survivor of brain injury (or many other kinds of injuries, including PTSD), you must be a warrior.

Now, I’m not saying everyone should pick up a sword or a spear or a gun and march out into life swinging and shooting. I’m not saying that you have to be on the defensive or the offensive at all times. Far from it. According to dictionary.com, a warrior is someone who is

1. a person engaged or experienced in war(fare)

2. a person who shows or has shown great vigor, courage, or aggressiveness

Vigor, courage, aggressiveness… yes. Those are key. And they are also predicated upon the experience of war.

To be a warrior, you have to realize and accept that you are engaged in war. Not only war in the classical sense, but:

War 4. active hostility or contention; conflict; contest

For those who struggle daily with TBI (or PTSD) in a world that doesn’t give a damn about our struggles, this is not a huge cognitive stretch. We are constantly faced with active hostility or contention, conflict, and contests — whether those come from within, or without. In my case, I would have to say the source is frequently more internal than it is external, but that doesn’t make it any less challenging. If anything, it makes it moreso.

Sometimes walking through the world without acting out, without attacking, without leaping in to “defend” yourself from a mis-judged situation takes more warriorship, than striking out. Being able to stand your ground… to hold your fire… to be fully present in a moment which threatens you on every level, without flinching or fleeing… that takes true strength, courage, and vigor. And mastering the self, learning to calm and/or disregard the constant chatter that goes on in our rewired brains… well, that takes a good deal of aggressiveness.

Not against the rest of the world (tho’ sometimes that’s required), but against the inner impulses which impel us to flinch and flee and fly off the handle. It takes monumental skill to stand when you want to bolt. It takes determination to listen, when you’re just dying to shout. And it takes all you can give, to walk, when everything in you is telling you to run.

Now, don’t get me wrong.  I’m not recommending that everyone just be 100% okay with the after effects of traumatic brain injury or other tragic traumas. I’m not saying we need to just sit back and take all the crap the world has to throw at us. Far from it. What I’m saying is that we as recovering survivors need to develop the inner resources to be our own people, to stand our own ground, hold true to our values, and not be diverted by externals when they keep us from our ultimate goals.

We need to be warriors in the truest sense. To walk our own paths, wherever they may lead us. To know ourselves for what we truly are, not what the rest of the world says we are. To do what must be done to protect ourselves and our lives and all we hold dear. And whatever route we take, it must be our own, and we must be loyal to the True inner voice that compels us, while learning to discern and dismiss the internal chatter and endless distractions which strive to pull us off our path.

Only we can achieve that. But when we do, we know it is our own. We have earned it, we have won it, we have paid dearly for it. And nothing and no one can take that from us.

March on.

From Wikipedia:

Triage (pronounced /ˈtriɑʒ/) is a process of prioritizing patients based on the severity of their condition. This rations patient treatment efficiently when resources are insufficient for all to be treated immediately. The term comes from the French verb trier, meaning to separate, sort, sift or select.^[1] There are two types of triage: simple and advanced.^[2] The outcome may result in determining the order and priority of emergency treatment, the order and priority of emergency transport, or the transport destination for the patient, based upon the special needs of the patient or the balancing of patient distribution in a mass-casualty setting.

Some days, it seems like everyone is dying. Lying wounded on the battlefield of life and gasping for breath.

Along come the doctors to decide — who lives, who dies. Who gets to wait and see.

They sift through the sheer volume of us… separating, sorting, selecting who will receive a portion of their insufficient resources.

What is our order?

What is our priority of emergency treatment?

How and when and to where shall we be transported?

Where are we going, anyway?

Truly, it seems as though all of this country is in a mass-casualty setting.

Triage continues.

One of the things that can make TBI particularly difficult, in the ensuing weeks, months, even years, is anger issues. Rage issues. Flying off the handle and attacking others for no good reason that they can see.

There are a lot of reasons this happens. Some of them are:

• Fatigue – your system is compromised by too little sleep and/or too much activity (with me, the two go hand-in-hand), and you don’t have the energy/wherewithall to stop yourself from going off
• Fear – there’s nothing like a sharp spike of adrenaline, combined with anxiety and fear to set you off. Fear has a way of clouding your judgment, so you not only under-think situations (from fatigue) but you also overreact to the circumstances (which may or may not be true).
• Frustration – when you’re trying to get something done/said/understood, and it’s just not happening, no matter how hard you try, patience wears thin — especially with yourself. My frustration tends to be directed inwards, though it also gets directed outwards. But the inward-turning kind is actually a lot worse for me. It makes me mean and aggressive. The worse I feel about myself, the angrier I get with life in general, and the more I tend to blow up.

It certainly doesn’t help that my brain gets into an uproar and starts getting into a biochemical soup drama, so that even if I wanted to think straight, I can’t.  The constant restlessness of my brain, coupled with the toll that agitation and fatigue take, can combine for a pretty potent mix of explosives.

So, what can I do about it?

• At a very minimum, be aware that I’m angry. It often feels like something completely different — it feels like I’m just revved, and I don’t recognize the emotional piece of it. It may sound simple, but realizing that I am actually angry is a big challenge for me.
• Realize that my anger does not necessarily make sense to others. What I’m thinking and feeling may be entirely unique to me.
• Realize that my brain may be sending me wrong signals, and the surge of emotion that’s coming up may be simply a biochemical response by a physical system that is WAY overloaded and highly sensitive.
• Remember that the long-term effects of a blow-up are probably not worth the satisfaction I get from venting. No matter how justified I feel about my anger, it can do much more harm than good. I have to think about whether I want to spend the next days/weeks/months patching up the damage I do to myself and my relationships with others, thanks to uncontrolled anger.
• Keep myself in check. No matter how justified I feel, the more revved I get, the more I need to step away. I need to do whatever I can to remove myself from that situation, before it escalates and turns really nasty.

It’s not a perfect process, but it’s something. It’s an ongoing thing, and I’m far from perfect. But ultimately, life has a way of teaching me the lessons I need to learn, so if I just keep at it, eventually I do make some progress.

I have not been sleeping nearly enough. Now my clothes hurt me. My skin is very sensitive and it feels like  it’s being raked by a wire brush, when my clothes brush against my skin.

Complain, complain, complain. I’m wearing myself out with the complaining.

Work is going pretty well, and when I keep track of what I’m supposed to be doing, I am keeping up with the best of ‘em. At least, I believe I am

I’ve noticed an interesting phenomenon with how I fill in the gaps of my comprehension. Where I am missing details, like what someone’s reaction to me is, I tend to think the worst. They’re angry with me. I’ve messed up. They’re quiet because I’ve offended them and they are thinking about what to say back to me.

But it’s not always true. It rarely is, in fact.

I think this comes from a lot of past experiences of troubling interactions with people. When I was a kid, I seemed to get a lot of stuff wrong, and people used to get so mad at me. Of course, it always puzzled me. I never thought I was wrong when it was happening, but over the years, I gradually came to realize that I messed up a lot more than I thought I did.

In a way, it was kind of good that I was as clueless as I was. But in retrospect, I cringe.

Well, I can’t do much more cringing tonight. I’m dog-tired from dealing with my car conking out – battery died when I was at my neuropsych. And then having to call AAA (and renew my lapsed membership online before I called them) and figure out how to pay for the battery… Ugh. I can do without another day like this.

Oh well… I can’t worry about it. In another six months, I won’t even remember this, probably. I’ll have moved on.

My clothes hurt me, so I’m going to cut myself a break and take it easy tonight. I’ve earned it.

Because as sympathetic as they may be, folks who have not sustained TBI’s cannot fully understand what it’s like, what we’re up against, and how difficult it can be to overcome this.

They can certainly reach out and lend a helping hand, but there’s nothing like the voice of experience to get a point across.

That’s one of the reasons I’m so enthusiastic about Give Back — they’re TBI recoverers who know what it’s like to come back from the brink.

It’s the ultimate irony, isn’t it — that TBI survivors, especially mTBI survivors — are so vastly underserved by the healthcare establishment. Traumatic brain injury, concussion, head trauma… whatever you care to call it… affects the United States on a vast scale, yet somehow it doesn’t warrant a concerted effort to deal with it.

Huh. Go figure.

Every 21 Seconds, someone in the U.S. suffers a traumatic brain injury. Each year 1.5 Million Americans suffer a traumatic brain injury. 5.3 Million Americans are currently disabled by a traumatic brain injury, and 80,000 Americans sustain long-term disability from TBI each year.

What’s more, when TBI strikes, the healing doesn’t happen the way, say, a broken arm or a broken leg does. You can’t put a cast on your brain and have people sign it and tell the world that you’ve got a temporary disability that they need to keep an eye on. You’re lucky if you even know you have a brain injury. Many, many people — like Natasha Richardson, for example — never have a clue what’s going on in there.

Doctors know. At least, there’s medical literature available about it, which explains the effects and how serious they can be. There’s plenty of evidence, too, that those of us who have sustained TBI are in dire need of help getting our minds around the states of our brains. A broken arm or leg will make it quite clear that it’s broken. Not so with a broken brain. That puppy will lie to you till the cows come home… or your lying face-down in a gutter, ruined and destitute (whichever comes first).

TBI is insidious and debilitating. It’s also epidemic. There is ample medical literature to educate and inform caregivers.

And yet, the American medical establishment can’t seem to get its act together to address this obvious crisis in a consistent or reliable way. For all the expertise about the body, nobody seems very interested in figuring out for real how the brain works. It seems to be all about, “We’re so smart, we realize how wonderfully complex the brain is, and we don’t really understand how it works. More science still needs to be done.” And we have to wait ten years for the results of the very limited clinical trials to be vetted and published. What knowledge is out there, is often incomplete and inconsistent, or professionals are not paying proper attention to the right info. Going to see a neurologist is like rolling dice — no, you have better odds with rolling dice, as there are far fewer choices and far fewer gray areas, and if you roll snake eyes, there’s no professional excuse-making and elaborate every-brain-is-different question-dodging. It’s just skake eyes. And you deal with it.

If only neurologists were as straightforward. Or emergency room staff. Or primary care physicians, for that matter.

I suspect that part of the problem is that medicine has turned into a for-profit business, with profit motive being a prime mover in people’s decision-making process. Granted, it’s not cheap to run a medical practice — malpractice insurance alone swamps many docs and discourages many others from even practicing. Medical supplies are pricey. Tests are, too. And what tests there are, often don’t even render any useful information — especially when it comes to TBI.

The brain is a wonderfully plastic thing, and it has a way of masking its issues — both from imaging machinery and the survivors of trauma. And when you’re sitting on the other side of a desk from a doctor who relies on imaging and test results and feedback from the patient to determine what’s up — and they are presented with someone whose tests all come back looking fine, and who also cannot articulate their actual issues, then there’s only so much they can do.

Which puzzles me. The model for this kind of medical practice is so clearly ineffective, I can’t quite understand why more people don’t make a point of fixing it.

Or maybe they do, and we don’t hear about them. Maybe they do, but they’re so busy taking care of patients that they don’t have time to tell the world what they’re up to.

Lacking medical care is just one of the many issues we face, when our brain has been re-wired. If we can find a decent neuropsychologist, we may be dealing with someone who is actually working for the insurance companies and is paid to prove there’s nothing wrong with us. Or they may be of the school of thought that believes that TBI is an irreversibly damaging condition that just can’t be helped, so just make the best of what you have, and quit complaining so much. Or they may not be very good in other ways.

Dealing with the outside logistical world, when we’re impaired, is another huge challenge, which has been documented and described pretty thoroughly over at Absolute Twisted Zero. I have WAY too many of my own frustrating stories, usually happening immediately after my injuries. A lot of my problems resolved over the following years, by right of my just sticking with things and keeping at it, but the cumulative effect of having run up against so many walls is, well, traumatic in its own right.

The TBIs I experienced may have been initially mild in nature, but I can tell you a whole lot more very real trauma continued afterwards — both immediately and for years after. I’m still digging out from a bunch of those kinds of traumas. It’s resolving, slowly but surely, but it takes for friggin’ ever.

Looking around online, reading other TBI survivor blogs, and hearing what people say in forums and online communities, it’s pretty clear to me that when it comes to TBI, if we are to truly recover, we survivors have to help ourselves. It’s about the dumbest thing on the face of the earth, as far as I’m concerned — it’s like handing a blind person a needle and spool of thread and scissors and telling them to hem their own pants, so they don’t look so silly, walking around with their pant legs different lengths.

Yeah, it’s pretty much exactly like that. First of all, we can’t really tell that well if our pant legs are even the wrong length. We can’t see them clearly from where we stand, and we have to gauge our visual acceptability by the reactions of others — which means we spend a lot of time being laughed at, like Harrison Ford’s character in Witness, when he was wearing the pants of that deceased Amish man, and they were a few inches too short.

And then, once we figure out that our pants are not the right length, we need to cut the thread to length, thread the needle, and handle the sewing, all without the benefit of vision. At the rate we go, judging from environmental feedback, it can take years for us to get our pants hemmed properly. If we ever do, at all.

If we can get help from someone else, however, our chances may improve dramatically. That help can come from family or friends, or it can come from honest feedback from others around us who may or may not know about our TBI. That help can come from competent rehab folks or compassionate doctors or caregivers. But it’s generally uneven and unpredictable. And it’s also dependent on the state of mind of the person helping us.

In the end, in my experience, I find it best to just help myself. My spouse’s patience wears thin with me, and they sometimes accuse me of using TBI as an excuse for bad behavior. My co-workers help me intermittently with keeping me on track, but they know nothing of my history (nor will they ever, if I have anything to do with that), so there’s only so much I can ask them to help me with. My neuropsych is great, but they’re also in great demand, and they serve a lot of people who are in greater everyday need than I, so there’s only so much I can ask them to do.

Ultimately, I’m on my own. I have my tools, like my daily planner and my journal and my research. But I have no access to regular rehab, no one person dedicated specifically to helping me through the regular rough patches I hit. I’m the one driving the “car” of my life, and I’m the one who has to watch out for the proverbial black ice. Or washed-out bridges. Or SoCal-sized sinkholes. Nobody else is driving this car, and nobody else can help me quite the way I need to be helped, on a constant, daily basis.

It sucks, when I think about it. So, I try not to think about it.

I focus on helping myself.

God help me.

I’ve had some questions from folks about how to use the log pages I created. Here’s how I do it, with some sample info filled in the way I fill it in. I created four different forms, filled out with sample details, like I do. You’re welcome to use these as templates for your own self-therapy/rehab.

Again, the way you do this — if you do it at all — is totally up to you. But this is how I do it:

1. I start out the day, recording how much sleep I got, and listing the things I want to get done, as well as when I want to do them — as shown in the attached Morning Log Sample. A lot of times, I’ll list out things I plan to do, the night before — e.g., when I intend to get up and go through my morning routine, etc. I tend to write down even the smallest activities, if they are significant. I list things like the steps of my morning routine and standard-issue activities which are the bread-and-butter of my daily ritual, no matter how “basic” get included, if they are important for me.
2. As my day progresses, I keep track of what I’m doing, and how I’m doing it. Like in the attached Noontime Log Sample. It might seem like a lot of work, but really, when you’re actively managing your time and you must keep to a schedule, it’s not optional. And when you incorporate it into your daily life, it’s really not that much effort.
3. Later in the day, I’ll fill in more information, like in the attached Afternoon Log Sample. Keep in mind that this day’s info is a Sunday — a light day for me. If it were a weekday, I would have a lot more detail and a lot more stuff listed to do.
4. At the end of the day, I’ll fill in my daily journal, like in the attached Evening Log Sample. I use a highlighter to mark the things I’ve gotten right, and the things I messed up. It’s important for me to distinguish between the things that turned out differently because I messed up (shown in red) and the things that turned out differently just because priorities changed or I did things a little differently (shown in orange). I also do my “360 feedback” journaling. I don’t write a whole lot, but I do spend some time examining my day and thinking about what went right and what went wrong. I really try to focus on what I did right, since there are days when those experiences are rare, and I need as much positive reinforcement as I can get. But I also really think about the things that went wrong, keeping in mind what I will do differently next time.

Again, it might seem like a lot of work, but when you incorporate this practice into your daily routine, it becomes a way of life.

“An unexamined life is not worth living,” someone once said.

That sounds depressing, so I prefer to say, “An unexamined life leads to much more difficult living.”

Truly, the price of taking the time to examine my activities and follow up on them is well worth the value I receive in return. It’s when I don’t do my daily tracking and logging and self-assessments, that I get into trouble.

Oh, one last thing — if I have a long series of unfinished tasks and things I messed up, over and over and over again over the course of days and weeks, I pay special attention to that and make a priority of learning about it. Over the extended term, I look at my log pages and I watch for patterns. If I see that I am failing regularly to get certain things done, I explore that and then do research on it. And if I look long and hard enough and am focused enough on it, I can often find info that helps me deal with the issues, and overcome them.

For example, I have a fairly long list of action items I am responsible for following through with at work, but I haven’t been able to start a number of them, for lack of motivation (and difficulty with initiation).  So, I did some research on motivation and initiation problems, and I learned that I may have issues with my cingulate gyrus, so I’m paying more attention to my initiatory abilities and doing some exercises to improve how that part of my brain is engaged.

It can be a bit daunting to do this every single day — and the stack of papers I’ve got showing what all I’ve tracked is a little overwhelming. But unless I track myself and take a look at what I’m doing on a regular basis, I don’t have the chance to do a course correction, and can I end up stuck in a bad groove that just drags me down.

So, I track myself. And it helps.

It might just help you, too.

It’s no secret I’m really into regularly tracking my activities and progress. I find that the more I track my progress, and the closer tabs I keep on how I’m messing up (and what I can do about it), the better I function and the better I feel about myself.  You can read how I use the system at this post.

I’ve made a new version of the form I fill out each day, for others to use. You can download it here for free: Daily Planning and Results Log Book Blank (Word document format).

Log Book View

Log Book Page 1

Log Book Page 3

Log Book Page 4

This log lets you record what you have planned to do each day at a certain time, as well as what you actually did (I tend to “wander off” and not get things done, so I need to track what I actually did instead, so I can see what motivates me to take action throughout my day). It also has a few pages for “360 feedback” notes, which are all about what you did right during the day and why… as well as what you could have done better, why that was, and what you can do different next time.

It’s based in part on the Give Back materials, which include daily planners as well as head injured moment assessments. But it’s also modified based on what I’ve learned works well for me. Give Back tends to limit the number and kinds of explanations for why things turned out like they did. Their reason lists are also a bit of a jumble with not much organization. Plus, I find that having a whole big form to fill out to explain why I screwed up, causes me to spend more time thinking about stuff, than actually doing it — with me, it leads to “analysis paralysis” — but it might not be that way for everyone. Some people, I’m sure, really benefit from extended examination of their issues.

But I tend to get so busy during my days, that I just don’t have the time for extensive analysis of my head injured moments (even though I tend to have more than a few in the course of each day). I find it most effective to keep things simple and flexible, and focus on how I get through my day… and how I can do  better the next time, if I need to refine my approaches.

I’m also creating a version of this log that is book-length and spiral bound. It’s very simple and straightforward — just a bound copy of about a month’s worth of forms, to make it easier to keep organized. I’m presently creating it on Lulu.com and it will be available shortly for folks who want to buy a copy of the book that collects everything in one place.

I tend to keep all my forms clipped together in a stack, which isn’t the neatest way to do things. But that’s just me. I will probably order my own spiral bound copy, in any case, because the printing is going to be nicer than my own printer, and it won’t smear when I mark it all up with my highlighters. Also, having it all in one place — what a concept!

Just so you know, there the book-length workbook will cost money to buy. But there’s no obligation to purchase anything. Honestly, we pay enough as head injury survivors, in terms of daily difficulties. Why add to the burden? The  book-length version is just a neater and more orderly print alternative to the 4-page version (which is a free download).

For the download, you can grab the Word document and then print it out and fill it in by hand or you can put it on your computer and type in the information. Either way — whatever works best for you. I tend to handwrite all my notes, because I’m not always at a computer, and I don’t want my recovery to be dependent on technology. Plus, I like to color-code my info, so it’s easier to decipher later (that’s sometimes a challenge).

Oh, if you don’t have Microsoft Word on your computer, you can download a copy of OpenOffice (www.openoffice.org) for free — it has all the applications you find in MS Office — word, powerpoint, spreadsheet, even database. But it’s Free. As in — costs you no money at all.

Me? I’m big into free. So, if you want to use this log, and you need a word processing program that rocks, check out Open Office.

Well, must run – the day is waiting.

It’s wild – it starts with the best of intentions. It’s exciting… very exciting to life my life, to go-go-go, to do lots of things and get tons of stuff done.

But if I don’t watch myself, I can get into trouble pretty quickly. If/when I get over-tired (and at the rate I tend to to, it’s usually a question of when I’ll get over-tired, versus if that will happen), a downward spiral starts in, that just won’t quit, till I start to rattle and shake like the USS Enterprise being pushed through an asteroid field at full speed. (And I hear Scotty yelling, “Cap’n, she’s breakin’ up! I can’t give ‘er anymore!“) I question my sanity, my ability to cope, my ability to live, and I’m exhibiting symptoms that someone who doesn’t know better would interpret as mental illness.

It’s not mental illness, per se. It’s my brain acting strangely under abnormally taxing conditions.

Here’s how things steadily go downhill…

And before I know it, I’m in trouble. I’m angry, I’m emotionally volatile, I’m raging, I’m blowing up at people, I’m melting down into a pile of quivering agitation, I’m irrational, I’m over-reactive, I’m hyper-active, I’m everything I know I should not be, but I am powerless to prevent it.

Also, I am in pain. Not just the muscular/skeletal pain that comes from over-exertion, but the surface pain that comes from fatigue, that makes everything hurt, from my clothing to human touch. It’s awful, and there’s nothing to do to stop it, when it’s full-on.  Advil doesn’t help. Only sleep does — days and days of extra sleep.

The thing is (the pain aside), a lot of the behavioral problems that come up are a result of how I perceive myself in relation to the rest of the world. Yes, I’m emotionally volatile. Yes, I’m losing it when I should be keeing cool, but it’s not so much that I am in trouble over things I’m doing — the real trouble happens and I get bent out of shape, when I misinterpret what I’m doing. I assume that because I’m having problems keeping things straight in my head and I’ve gotten turned around, that I’m screwing up (yet again) and I’m a mess, I’m broken, I’m damaged, I’ll never amount to anything, yada-yada-yada-yada-yada-yada-yada-yada-yada… an unbelievable amount of agitation results, which feeds back into the insomnia/fatigue loop. And that just makes my behavioral issues worse.

I’ve been seeing this more and more, lately, as my sleeping habits have deteriorated. They truly have. It’s been very fun and exciting to do things late into the night (as in, after 10 p.m.), but it’s cost me dearly, in terms of peace of mind, not to mention being able to deal effectively with increasing demands and challenges.

Stop the madness!

Seriously.

So, I have re-prioritized rest. I’ve bumped it up to the top of the heap. And I’ve made some small but important adjustments in how I do my work, so I have a better handle on things.

Objectively speaking, I’ve actually been dealing with some of the challenges and demands quite well — but because I’m so tired, I can’t really accurately assess how well I’m doing. So, when I feel like I’m having trouble, I assume I’m not doing well at all… and my successes are nearly lost on me. Unless someone can talk me through them. Like my spouse or my neuropsych.

Speaking of my neuropsych, I had a really great meeting with them  last night (thank heavens), on the spur of the moment. I was in town, they were in town, they had an opening in their schedule, and I had a sudden cancellation on mine. So, we managed to meet for a few hours. And after checking in with them about some recent experiences that had thrown me for a loop, I realized that I had actually done extremely well under very demanding and challenging circumstances. The biggest hurdle in all of it, was me being so tired that I couldn’t think clearly about what had really happened that was good.

I was so tired, nothing seemed good. But it actually was. So, my neuropsych talked me back from the brink of despair. And then I went home and  got to bed at a decent hour — 9:30 p.m., thank you very much! — and I woke on my own after 8 solid hours.

Wonder of wonders.

And suddenly, the world looked a lot better. The “mental illness” subsided, my mood disorder cleared up, my crappy attitude and biting self-criticism subsided, and I was able to get on with my life. Like a normal person.

And I’m back on track with watching myself more closely than I had been, taking my issues one at a time through the course of each day, and addressing the real underlying problems when they come up, so I can get on with my life, despite them. I’ve refined my daily log for what I have planned and what I really do. I’ve become quite diligent about keeping notes on my daily activities, and now I’m furthering that even more with a better kind of journal that helps me a lot.  Tracking my activities and the results is one sure way to see how I’m doing, from day to day. My brain will tell me any number of things about how I’m doing — many of which may in fact be untrue. But if I’ve got my notes, I can see for myself how I’m doing.

Onward…

As time goes on, it never ceases to amaze me, how easy it is for me to be pulled off track in all sorts of directions. Distraction is a huge trap with me, and the cumulative effects can be pretty brutal.

I start out knowing I want to get from Point A to Point B. But all around me, there are tons of distractions… Little things I think are important, but really aren’t… Big things that may be important, but are keeping me from focusing on reaching my ultimate goal, one step at a time.

I start out wanting to go from Point A to Point B… but those other things look so interesting… and I end up getting pulled in all sorts of different directions.

And sometimes I never get to Point B. It’s just not good.

So, what I have to do, is just block out everything outside my main goal, and focus exclusively on that. I can’t afford to be distracted, I can’t afford to be pulled off in different directions.

I have to keep myself involved and invested in what I’m doing with myself, so I don’t get pulled all over creation, chasing after this and that and the other thing.

But how? How do I build a proverbial wall around the things I’m working on, to keep focused and involved?

I’m still working on that, but one of the things that works for me, is resisting the urge to go off and do something else, when I feel as though I have just completed a task, and I want to change up the pace.

I say “feel as though I have just completed a task” because a lot of times, I’ll get the sense that I’m done with something, when I’m really not. There are extra details that are left hanging. Loose ends that need to be tied up. But in my constantly restless brain, I get antsy, and I get pulled off into other things. I tell myself I’ll come back to what I was working on later, when I’m more rested and relaxed.

The thing is, when I’m antsy, I tend to get pushed into high gear, which has me frantically doing the distraction-thing (like picking up some other piece of work that’s pretty involved), and in the process of distracting myself from my prior agitation, I fatigue myself even more, and I become even more prone to distraction and poor attention.

Which sets me waaaaay back. It’s not good.

This impulse control business is just nuts… And the attentional issues… oh, please. It’s just too much, sometimes. If I’m not careful, I’ll end up ranging far and wide, thinking I’m being productive… and I’ll get nothing done in the process. It’s a downward spiral of worsening distractions and increasing workload. Crazy. Crazy-making.

So, what I’ve been doing lately, which has been working out really well for me, is when I’m done with a very demanding task which has either upset me or tired me out, I’ll just step away and take a break for a few minutes. Gather myself back in, catch my breath… and then I’ll go back to following up on what I was just working on before. I’ll write up my notes from the experience, highlight the lessons I can find, and I’ll mark any follow-up items that need to be done.

I have to do this right away – or I will forget the things that are important, which need following up. If I wait, I am lost. And it’s no good trying to reconstruct the experience, days — even weeks — later. My brain thinks I can do it, but it’s wrong. I can’t.

I also have to keep a calendar pretty carefully, showing what I’ve worked on in the past. I have to not only keep a calendar of what I need to do in the future, but also keep one for what I’ve done, so I can keep track of the balls I have in the air. I tend to literally forget what I’m working on, and then I get distracted and wander off in all directions.

A retrospective calendar is key for me. Without it, I get into real trouble. And it needs to be in monthly format — with 4-5 rows of 7 squares, one for each day of the week — so it’s more visually meaningful for me.

Keeping up with keeping up is not always easy. And it requires specific tools and techniques:

• Sticking with tasks until they have been completely followed up on.
• Taking breaks when I am tired, and always coming back to what I was doing before.
• Planning my time carefully, with an eye to what I need to accomplish.
• Keeping a calendar for my past and my future, so I don’t forget what I’m supposed to be working on.

The most important technique of all? Keeping in mind the possibility that I might be forgetting something, and I might be letting something slide… and doing a reality-check to make sure I’m correct. I can check my notes, I can talk to people, I can consult my project list. Whatever I do, I dare not forget that I’ve got things going on.

The main thing is, not to give up. Not to quit. Not to abandon the job before it’s done. And to remember, my brain might be telling me I’m good to go, long before that’s the case.

I’ve been giving a lot of thought, lately, to the subject of acceptance and denial of TBI-related issues. Denial is a big issue with lots of head injury survivors, and the inability to accurately self-assess can make lasting recovery difficult. It can make us reluctant to do the work required to achieve true recovery, because we simply don’t realize that we need to do the work. It’s not that we’re “in denial” because we’re emotionally ill-equipped to deal with the loss of certain traits we once had. We simply cannot conceive that there actually is something amiss with us. After all, our brains are telling us we’re just fine.

Give Back, Inc. has a good description of aspects of this issue:

The second, and most important, obstacle is the inability to directly perceive the effects of the injury. In traumatic brain injury (TBI), the brain does not feel injured. It rarely hurts or feels strange, and relatively few symptoms are obvious to survivors. Most survivors overlook the errors they make because of the lasting effects of their injuries. When an error gets noticed, most survivors don’t realize that it was caused by their own, defective thinking and self-control. Even when a survivor recognizes the mistake, the injured brain usually serves up excuses that prevent learning about the injury. Serious physical disability is unusual after TBI, but if there are physical symptoms they almost always get recognized. In many cases, survivors also learn that they are forgetful. But most survivors feel sure that their thinking, behavior, personality, and abilities to get things done are unchanged or changed very little, by the injury. Common head injury symptoms like unreliable judgment, undependable follow-through on assignments and tasks, inappropriate behavior toward others, reduced frustration tolerance and self-control, and increased emotionality are usually denied no matter how serious they might be. By failing to recognize that these are permanent problems, survivors learn nothing from the mistakes they make on this basis, repeating the same errors again and again.

A lot of people tend to believe that denial of illness is purely a psychological defense mechanism, and in order to get better, you just have to emotionally come to grips with the stark reality of your life. Certainly, the psycho-emotional aspects do play into the equation. But lacking awareness of deficits has pronounced neurological aspects, which make life interesting enough, even without the psychological aspects. Things like goal-setting and basic day-to-day logistics get that much more interesting, when your brain is telling you, “Don’t worry – you’re fine!” while it’s off doing its own thing.

And that’s kind of where I’ve been, on and off, for the past month or so. It’s where I have been for about as long as I can remember, in fact. But telling myself that I’ve messed up because I refuse to accept my limitations falls short of the whole truth. I’m more than happy to adapt to things I need to change in my life — but my broken brain keeps telling me it’s fine… just fine.

Well, I’ve had an incredibly long week, and I’m completely bushed. But for what it’s worth, there’s my thought for the day.

I just found this:

10 Myths of Brain Injuries

I’m not a huge fan of lawyers, but if they have it right, they have it right.

I think they have it right.

I’ve been giving a lot of thought, lately, to the ideas of acceptance and adjustment to traumatic brain injury. Obviously, no one wants to be brain-injured. No one wants to have to deal with all the after-effects of head trauma, including the anger, rage, temper outbursts, emotional volatility, forgetfulness, impulsiveness, and difficulties with different senses like seeing and hearing.

But when you get hit in the head hard enough for it to tear the fragile connections that keep our systems running smoothly, well, you’ve got to make some allowances for that. You’ve got to come to terms with the fact that your brain is now different from how it was before. You may need more time to think things through. You may need extra help remembering things and keeping your temper under control. You may need to give up some activities, like high-risk activities that require high levels of coordination and stamina.

And if you are having problems with fatigue and seizures, well, you may want to consider another career other than driving a truck over long distances for a living.

Obviously, you have to be realistic in your choices — for example, I know I have balance issues, so I choose not to take unnecessary risks by climbing on wet, slippery rocks when I’m hiking out in the middle of nowhere. The last thing I need, is to slip and fall and be hurt… and then not have someone find me for three or four days — in which case, they might end up finding my carcass that’s been partially devoured by wild animals.

Obviously, you have to exercise judgment in what you do and do not do. And some TBI survivors are notorious for refusing to do just that. Something in our heads tells us I Can Do Anything! And a lot of us try it. And we end up re-injuring ourselves. Because we didn’t use good judgment.

Now, on the other side of the coin, there’s the tendency of an injured brain to tell its owner, I Can NOT Do Anything! Depending which side of the brain you were injured on –left-brain injuries can result in greater timidity, while right-brain injuries (like mine) can result in being blinded to risks — your brain can give you all sorts of different messages which may or may not be true.

The thing is — adjustment is possible. That is, adjustment that doesn’t completely trash our humanity and reduce us to afraid-of-your-own-shadow apologists for not trying. If we are aware of our issues, we can adjust to them in an intelligent and common-sense way. Not throw the baby out with the bathwater and say, ‘”I’ll never have a regular job again!” or tell ourselves we’ll just never have a full life, ever… But rather say, “Lookit, I know I’ve got balance issues now and then, and I know that I am hiking in a fairly remote region, so I’m going to find something else to do, other than try to scale that rocky cliff face in the rain. I know I need to get from this point to that point on the trail. What other options do I have?”

Looking for other options, instead of taking an all-or-nothing approach to life is not only good practice for a TBI survivor — it’s good practice for anyone.

Let’s face it — we all need to make adjustments, now and then. As we grow older, our bodies change and the info we have changes. We need to adjust accordingly. If we’re running into physical issues, we can either adapt to them by taking it easier, or we can push ourselves a little harder than we’ve gotten used to, and beef up our systems to be stronger. If we’ve just learned that our jobs are being phased out and there will be no more work of the kind we’re used to doing, in another three years, we can either start planning an early retirement, or we can take some training in another field.

Life is all about adjusting. It’s all about adapting. And dealing with a TBI is just another part of life for some of us. But it can be done.

The thing is to have the good sense to know what you must give up, and what’s just giving up before you’ve explored your many options.

Back in the day, when I was a teenager, I ran track and field. I also threw javelin. Starting out, I could barely run around the track once without running out of breath, doubled over and panting in pain. And when I started throwing, I could barely launch the javelin into the field.

But by the time I was a senior in high school, I was winning medals and blue ribbons and trophies. I still have them around my house to remind me of how good I really was. I won first prize in the junior olympics, my senior year in high school.

The problem is, I have no clear recollection of the event. I dimly recall something about receiving a ribbon, but I don’t remember the throw. The only way I know I won first prize is, I have the blue ribbon with my name, the date, and the distance.

That’s a hell of a thing.

But my Swiss cheese memory isn’t what I want to talk about. What I want to talk about is training for recovery. Working hard at getting back to full functionality after a head injury. I find that my recovery is a whole lot like training for track and field — it’s  a long, long road, and it’s tiring, and it takes a lot out of me, and some days I just don’t think I’ll make it — like I used to feel on the 5-mile training runs for the distance events I raced. But once upon a time, even when I did exhaust myself, even when I did become dehydrated (it feels very strange to not be sweating when you’re hot), even when I was doubled over in agony from the side stitches, even when I was hobbling along with shin splints… if I just stuck with it long enough, I eventually came through.

Provided I didn’t give up. Provided I kept with the program. Provided I persevered. Ultimately, my hard work, determination, and (to this day) uncanny capacity for pain tolerance, paid off. I won trophies. Blue ribbons. Medals. I was team captain two years in a row, and I led one of my teams to the state championship competition. We didn’t win it all, but we were in the game.

Some people say that when your head gets hurt, when you injure your brain, you need to just accept that you can’t do certain things anymore. You have to accept your limitations. You can’t push yourself, because you might get hurt. You can’t stretch yourself because you might find it uncomfortable. I have told myself that plenty of times in the past. I didn’t want to push it. I was afraid I would get hurt again. Or end up disappointed and upset.

But the more I’ve lived through all this, the more I’ve realized that — just like throwing and running — success comes through a lot of hard work and perseverance — and proper form. And over time, wonder of wonders, things have gotten better for me. My stamina is increasing. My tolerance for frustration is improving. My anger jags have subsided considerably. It all takes time. And it takes work. It takes everything I can put into it — and then it demands even more of me.

And it’s dangerous. Because it’s life. And life is dangerous.

When you’re hell-bent on recovery, yes, you could get hurt. Just like you can really get hurt if you try lifting 150 lbs of iron weights at the gym. But if you train and work your way up to it… and if you follow the proper form… and if you are careful and mindful of how you handle the weights… well, then you don’t need to get hurt. Some people do — but that’s the risk you run. And it’s the price you pay if it happens ’cause you’re not paying attention or you’re being sloppy in your form.

When you’re totally focused on recovery, though, you tend to pay attention to important things like form. Like your energy level. Like your frustration level. Like everything that might possibly stand between you and success. It’s not like just trying to get ahead. It’s like trying to keep your head above water. But if you can keep your head above water, then hell, you really do have a chance to do even more than splash about. You can do way more.

Well, it’s late, and I’m bushed from my training today. My stamina is improving, and even though I’m tired, I’m not suffering from it like I used to. I may feel it more intensely in the morning, but right now all I know is, I’ve got a whole night to sleep, and I don’t have to be at work at the crack of dawn in the morning, which is nice. Provided I get my work done, my boss is happy. And at the rate I’m going, I am quite certain that I shall do just that.

Good luck and good night.

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.