Thorough TBI Recovery – One complete experience at a time

Soak it all in — all over again

So, I’ve been thinking about TBI recovery a good deal, lately. I go in fits and spurts — I’ll go for months, not wanting to think at all about TBI recovery, then I’ll go for months thinking almost exclusively about it.

Now I’m back to thinking about it, and I’ve reached a somewhat different conclusion about what makes for a good recovery, than I had in the past. Just so you know, I speak from my own experience, but what I’ve found could just as easily apply to others, so use what you can, and ditch the rest as needed.

Basically, I’m now of the opinion that recovery from brain injury is very similar to growing up all over again. When we are infants, our brains are undeveloped in terms of physical and social and emotional ability, and we spend the next several decades working on those abilities. Some of us continue to learn and grow, continuing the learning process well into advanced age.

Some of us decide that once we’ve “got it down”, we don’t need to learn anything else, and we prepare to retire, hit the golf links or bocci ball turf or shuffleboard alleys. I think that given the prevailing culture, which has long told us that once you get to “a certain age”, your brain just doesn’t learn new things as well anymore (that old dog new tricks line), a lot of us automatically mentally head for the retirement home, at a certain point in life. A lot of actually start moving in that direction early on.

Those folks are often the ones who believe that you have what smarts you have, and you don’t ever develop any more. These folks have a “fixed” mindset. Versus the folks who believe that nothing is set in stone, and we’re always learning and developing new skills and abilities. These folks have a “growth” mindset. Carol Dweck talks about this in her book Mindset, which I haven’t read yet, but I hope to within a few months (maybe weeks).

Experiencing a brain injury is a bit like growing up all over again. It’s like going from an adult to a child, in some ways, where you have to re-learn all sorts of things that you used to know “cold”. For people who aren’t oriented towards growth and change, this can be devastating. It’s also problematic that brain injury can blind you to alternatives and options and keep you in a very limited frame of mind that is addicted to things being “fixed” and set and stable.

The problem with needing things to be “fixed” and set and stable, is that it just doesn’t happen that often. And when it does happen, it doesn’t last. So, you have to keep adjusting and adapting… whether you like it or not.

If you want to get back to being and functioning like an adult, you have to do that. There’s no other option — you’ve got a renovated brain, so use it or lose it.

I’ve come up with a new idea for how I can “use it” and make my TBI recovery more complete. Now that I am able to read books again (I read half a book on the plane while I was traveling for business), I find that I am also able to write again. I used to love to write stories — short stories, even full-length novels. Looking back, they were not very good, and the benefit was really more for me than anyone else. But they benefited me a great deal. In fact, I think that writing really helped me recover through a number of TBIs in the course of my life. It soothed me, and I also believe it developed my brain to see the world in wider ways.

It also opened me up to the idea of having new experiences and seeing them as “fodder” for my muse. I was able to have a whole lot of experiences that would have normally thrown me off, if I had not looked at them as “material” for my writing later on. I stayed open to experience, because I believed my purpose in life was to have those experiences and then write about them later.

Ultimately, I didn’t become the published author I always longed to be. But I did develop a practice that let me make sense of my world in ways that were meaningful to me. And I did develop tolerance for difficulty and frustration. Because, well, that was just part of life, and if I was going to be a good writer, I needed to be exposed to as much of life as I could be.

Now I see that my writing really helped me create positive neural connections, over the years. And the fact that I could not read or write for close to 10 years, really explains why my mind became so fixed, so narrow, so brittle. I wasn’t exercising my “mental muscles” and I was losing what I was not using.

I’m ready for that to change, now. I’ve been writing about my experiences on this blog since 2007, and now I can expand what I write about to include more than what’s in my head. Adding what’s outside of my head, what’s right in front of me, what I am experiencing in my senses, with the same excitement and joy I felt when I was much younger… these are things I believe will help me recover even more.  I miss it, in fact. So, why not start again?

I’m on good footing, right now. For now, anyway. And I’d like to bump up my progress just a little bit more — with complete experiences of all my senses, keeping my whole person engaged — body, mind, spirit, heart — in this thing we call life.

This seems a positive way forward. So, onward.

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Back to work again

Writing helps

Well, this past weekend was interesting. Call it a wash. Call it an excellent use of time. I did things, this past weekend, that I haven’t done in years — read a bit of fiction and a bit of essay, explored various countries online, and wrote in my journal. A lot.

I haven’t really written journal-type stuff (outside of this blog) for a pretty long time. It’s been fits and starts, on and off, without much commitment. I’ve also been a bit wary of the whole journaling thing, because it tends to pull me into a self-consumed state of mine where I hash over the same stuff over and over and over again. And then when I look back, it really bothers me that I couldn’t get out off that loop.

This weekend, though, I did a lot of writing. I just didn’t care about the danger of “looping”.  I was sick. I was feeling bad. And it gave me some relief.

So, that’s good.

What was really good about it, was that I was writing in a different way than I used to, when I kept those “loop journals”. This time, I was writing for the specific purpose of getting my brain online.  See, I believe that the ways we use our brains determine how they are shaped, and I believe that writing is an excellent way of reshaping our brains. Keeping up this blog has been a huge part of my recovery — both because it helps me, and because it seems to help others. There are just no downsides (so long as I don’t let the blogging interfere with my daily routines).

What I did this weekend, was spend a lot of time really paying attention to my life and the world around me. I paid really close attention to the qualities and characteristics of the things around me — the minor parts of life that are so full of rich details that if we stopped to pay real attention to them, our lives would be as full and as wonderful as any action movie. I do believe that. The reason it doesn’t happen is, we just don’t try. We don’t realize that’s possible. And we don’t do it, so we don’t have practice, so it’s hard for us to do — and things that are hard are really no fun, so we don’t do them. And we get even more out of practice.

So, this past weekend, while I was fighting off my ear/sinus infection, I practiced. I looked at the patterns of raindrops on the roof of my car sitting down in the driveway. I examined the movements of clouds and the colors of leaves turning for autumn. I really felt the textures of the things in my house – the uneven surface of the bannister, the roughness of the walls, the weight and rumble of the sliding glass door. And even though I felt really, really sick, it woke me up in ways that I haven’t been awake, in quite some time.

And I realize that the big reason that my journaling didn’t help me — and got stuck in a loop — in the past, is that I was too much inside my head, too consumed by the confused thoughts and conflicts raging inside of me. I wasn’t journaling about the world around me, I was trying to “pin down” what was going on inside of me, and that — frankly — was a lost cause, because it was all a swiftly moving target that was constantly changing and morphing and flying from one extreme to the other, and it could never be pinned down.

But this different kind of writing — the “outside-in” writing, which is about what’s going on beyond my brain — is a whole other way of sorting through things. It’s like I’m exercising parts of my brain that don’t get any exercise in the course of my everyday logistics life. It’s like I’m
“airing out” the musty corners that don’t get much sunlight when I am so very intent on just getting something done that’s a problem for me. Focusing intently on doing things like making breakfast or doing my morning warm-up is good for the attention, but it doesn’t do much for my imagination. And the imagination part is what really rounds out my life and makes it enjoyable and worth living. Imagination is what I need help with, and this sort of writing — even just a few sentences about the shape of raindrops on the roof of my car — fires up that part of my brain like nothing else. It jump-starts my ability to experience life around me, in small pieces that don’t overwhelm me. And that’s good.

So, today I am awake with a very different perspective on things. I have finished my antibiotics, and I have another appointment with my doctor tomorrow to make sure my ears are alright. I still don’t feel well, and I have a ton of things to take care of at work today. I also have more things I need to do for my own life, because my spouse has been very, very sick and I am a bit more functional than they are, so someone needs to pick up the slack.

I feel, in a way, like I’ve turned the corner on something. I’ve had a pretty rough couple of months, with my job change and all the craziness going on inside my head. But I’m settled, now. I am settling in. I have a really good understanding of the physiological basics of keeping my life on track. I have a pretty good understanding of how to keep stress from wrecking me. I am determined to stick with those things and make my life better. And I have this new way of writing and exploring and improving how I think, how I feel, how my brain works — how I experience my life.

And it’s good. I can get back to work again. It’s going to take time, but I have a feeling I’m going to enjoy the process.

Tracking my progress, step by step

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.

I’ve decided not to fire my therapist… yet

Note: I unpublished this post from 2009, for some reason. But reading it again today, it still seems very important to mention. So, I’ve published it again.

I’ve been agonizing a bit over my therapist, lately. And it’s kept me up at night, which is not good. I had intended to come back from Thanksgiving and fire them, since I have not felt like they are totally supportive of my recovery, and in some ways, the innuendos that they toss my way.

They’ve said things like, “You may have to settle for making less money because of your issues,” when I was talking about my job challenges and how frustrated I am with the high tech industry and my future prospects. I was frustrated with my own difficulties, yes, but my frustration was also due to the changing industry and the flood of young guns who are showing up (not necessarily knowing what they’re doing) and snapping up jobs for lower rates, which is a problem for seasoned pros like myself.

I was telling them about trying to repair a relationship I have with someone who is 15 years older than me, and this therapist said “Well, they are getting older, so you can only expect so much of them.” As though this friend of mine were impaired, simply due to their age. And they weren’t going to get any better over time, which meant (in their mind), I had to just accept the flaws in the relationship and take what little I could get, not have high hopes, not have high expectations, not have high… anything.

Truly, that makes me crazy. I am 100% committed to my recovery, and restoring myself to the highest level of functioning that is humanly (even inhumanly) possible. I know the human species is built for amazing things. I’ve watched Cirque de Soleil, and once you see — really see — them, you realize that more is possible than you ever dreamed. I’ve hauled my ass out of some pretty tight spots in my life, some of which looked hopelessly dire.  I’ve had my ass spared from some pretty shocking fates, through total flukes, coincidence, apparent divine intervention, and the kindness of strangers. I’ve been homeless, and I’ve been in the top 10% of the world’s wealthy. I’ve  been bullied and feted. I’ve won blue ribbons, and I’ve defaulted and fouled out. I’ve experienced a fairly wide gamut of human experiences, and since I’m only in my 40s, I don’t expect to stop doing that anytime soon.

For this therapist to tell me what is and is not possible, what I should or should not expect from life, is not only out of line, but flat out wrong.

Yes, it drives me crazy. The problem is, it drives me crazy in retrospect. ‘Cause I’m having trouble keeping up. The conversations we have tend to take on a life of their own and really speed up, to where I’m flying by the seat of my pants, trying to at least appear like I know what I’m talking about. I have been quite nervous with this shrink from the start. I’m not sure exactly why. Maybe it’s that they have these multiple degrees, and they carry themself like God’s gift. Maybe it’s that they’re very well-connected and I’m intimidated by their influence and power. Whatever the reason, when I’m in session, I get nervous. And I think they do, too, because they know I work for a very big and powerful company that is an imposing monolith in the region where we live. Yes, I suspect they’re quite nervous with me, too, and we both set each other off, so the conversations we have tend to jump around and pick up speed, and things get said that I can’t react to in the moment, ’cause I’m back on the last thought, trying to sort out what they meant when they said “_____”

Keeping up has always been a challenge for me, but all those successive challenges have been building up to critical mass. They’ve said a lot of things to me, and I’ve just nodded and uh-huh‘ed my way through the conversation, and then later realized what they said and what I really thought about it. And then, time after time, I’ve gotten upset and tweaked, because I haven’t been able to stand up for myself and set the record straight.

It drives me crazy, not being able to speak up at the instant something is not quite right. And it’s something I need to deal with.

Which is why I’m not firing them… right away.

What I really need to do, is get some practice standing up for myself and working with conversations in a common-sense way. My processing speed is slower than one would expect. That’s been well-established with testing. I also have difficulties understanding what I’m hearing. That also showed up on my neuropsych evaluation. And I have a long history of holding back and not engaging in conversations with people, because I’m trying to figure out in my head what just happened… but my head is not cooperating.

What I really need to do, is develop my skill at having these kinds of conversations, and mastering them in the moment, when they are causing me problems. Not run away right away, but stick with it, and see if I can sort things out — be very, very honest about what I’m thinking, ask for clarification, stop the action periodically to see if I’m following correctly, and not let this therapist make me feel less-than, because I’ve sustained a bunch of concussions over the course of my life.

This is very important practice. Handling conversation is a skill I must learn – even at this “late” date. Because this sort of muck-up doesn’t just happen with them, and it doesn’t just mess me up in therapy. It has messed me up at home, in the past, but I’ve been doing a lot better with it, since my spouse and I have been approaching our discussions and exchanges with my post-concussive state in the backs of our minds. It sometimes messes me up at work, too — the saving grace with work is that I interact with people on a daily basis, and I can check in with people again after the fact, and get clarification. And use email to get it in writing. And check with others to make sure I’ve got things straight in my head.

But not every exchange I have with people manageable with email and foll0w-ups and a deep understanding of my neurological issues. I have the whole outside world I have to deal with, and I need to deal with it well and effectively.

So, I will not be firing my therapist right away. I need to learn to deal with them more directly, to have conversations with them that are not one-sided, but are full conversations — (putting the “con-” which means “with” in “conversation”). I need to get with the conversations we’re having and participate. Even if it means slowing things down and feeling dense in the process. If I can get away from feeling stupid about not following at lightning speed… if I can figure out a different way of thinking about my processing speed being slowed down… if I can find another way of framing my interactive needs… that would be helpful.

Because the way I’m framing it now:

“You’re stupid to be this slow, so you’d better keep up, even if it’s at the cost of not following exactly. And by all means, never let them see that you’re struggling. You have your pride, after all.”

Well, that’s just not working.

Truly, I really don’t have the time to waste on relationships that undermine me. But this pattern with this therapist is part of a larger pattern I need to address. I need to practice having conversations with people that involve me, as well as them. And I need to slow down the pace, so I can have a fully involved exchange, not some mad dash to the finish line. What I really crave is quality of life. To be involved in my own life. To not just put on a good appearance, but also have a full experience — good, bad, or otherwise.

It’s all very well and good, if I look like I’m fine. But if I’m not fully present in the moment, when I’m looking the part, then the life I’m leading is not fully mine. It’s everybody else’s but mine.

Journaling for TBI Recovery

I’ve been really thinking a lot about the two articles I read lately — the first Offensive Play – Football, dogfighting, and brain damage, by Malcom Gladwell in the New Yorker, and the second The Magnificent Minnesota Nun Brains by Ken Korczak.

They are both really good reads, and I also plan to read Aging with Grace by David Snowdon, which talks in greater detail about the Nun Study and what they learned about how you keep your brain and cognition intact, even in the face of considerable damage.

A bunch of things can be done — living a structured life with like-minded people, keeping a positive attitude, not fretting over material things, tending to your spiritual well-being, and (perhaps most significant to me, these days) keeping a daily journal where you mindfully and deliberately keep track of your daily life and critique yourself to improve where you can.

This matters tremendously to me, because after reading the Malcom Gladwell piece, I got to thinking about my childhood, how rough-and-tumble it was, how many times I got hit on the head in the course of playing, and how many times I was dizzy or woozy or out of it, after falling or colliding with something/someone.

Excerpted from the Gladwell piece:

But what sidelined the U.N.C. player, the first time around, was an accidental and seemingly innocuous elbow, and none of the blows he suffered that day would have been flagged by a referee as illegal. Most important, though, is what Guskiewicz found when he reviewed all the data for the lineman on that first day in training camp. He didn’t just suffer those four big blows. He was hit in the head thirty-one times that day. What seems to have caused his concussion, in other words, was his cumulative exposure. And why was the second concussion—in the game at Utah—so much more serious than the first? It’s not because that hit to the side of the head was especially dramatic; it was that it came after the 76-g blow in warmup, which, in turn, followed the concussion in August, which was itself the consequence of the thirty prior hits that day, and the hits the day before that, and the day before that, and on and on, perhaps back to his high-school playing days.

This is a crucial point. Much of the attention in the football world, in the past few years, has been on concussions—on diagnosing, managing, and preventing them—and on figuring out how many concussions a player can have before he should call it quits. But a football player’s real issue isn’t simply with repetitive concussive trauma. It is, as the concussion specialist Robert Cantu argues, with repetitive subconcussive trauma. It’s not just the handful of big hits that matter. It’s lots of little hits, too.

That’s why, Cantu says, so many of the ex-players who have been given a diagnosis of C.T.E. were linemen: line play lends itself to lots of little hits. The HITS data suggest that, in an average football season, a lineman could get struck in the head a thousand times, which means that a ten-year N.F.L. veteran, when you bring in his college and high-school playing days, could well have been hit in the head eighteen thousand times: that’s thousands of jarring blows that shake the brain from front to back and side to side, stretching and weakening and tearing the connections among nerve cells, and making the brain increasingly vulnerable to long-term damage. People with C.T.E., Cantu says, “aren’t necessarily people with a high, recognized concussion history. But they are individuals who collided heads on every play—repetitively doing this, year after year, under levels that were tolerable for them to continue to play.”

The bold parts are the ones that apply to me especially. Because in the course of my life I have had a ton of little hits. Too many to count, really. All those ballgames, the football, the lacrosse, the baseball, the soccer… all those times when I got clocked or had my bell rung or just plain fell and smacked my head… even the times when I didn’t smack my head, but had my head snap back as a result of a fall or a hit or a collision… It’s crazy, thinking back, and I can see how all those impacts of my childhood could easily have added up to a weakened network of connections, which made me more susceptible to more serious effects, long after I quit playing rough sports.

Perhaps my history of impacts explains why I could be in relatively minor car accidents, but be so tremendously impacted by them — unable to understand what people were saying to me, unable to initiate conversations with the police (that would have cleared my record of inaccurate info that the cops entered on the report, in order to cut the guy in the other car a break) and thus  kept my insurance costs lower — unable to function adequately in my jobs after the accidents, so that I literally had to leave and find other pastures.

Maybe that’s why one of the accidents I was in affected me so profoundly, but it didn’t affect the other person who was in the car with me. If my neural connections had  been compromised over the course of 18 years of rough play and impacts, while the other person in the car led a relatively sheltered life that was not as sports-oriented (while I was out on the field, slamming into people and things in various games, they were sitting on the sidelines, playing the flute in the band), it would make sense that the effect of double impacts — front-end and rear-end collisions — would be greater with me.

Of course, there are a ton of different variables, but if repeated exposure to head impacts plays a role, then it makes sense that I’d be more susceptible than I ever guessed I was.

Anyway, everybody’s brain is different, and I understand that self-diagnosing and trying to explain my own situation from inside my addled head can introduce problems with logic and deduction, so I could be wrong about it. I don’t think I am, but I’ve been wrong plenty of times before. The main thing I’m concerned with, these days, is how to avoid the kinds of problems other people with repeated head trauma have encountered, namely, the dementia and cognitive degeneration that can develop over time. Like everyone (who is lucky enough to be alive), I am getting older, and like many folks, I’m concerned about cognitive decline.

So, my thoughts turn to the Mankato, MN nuns, the School Sisters of Notre Dame. I think about this bit of info, in particular:

Amazingly, some of the nuns maintained clear healthy minds even though their brains showed the scars and deterioration characteristic of severe brain diseases, such as Alzheimer’s and strokes.

In the case of the brain of one Sister Mary, who died well into her 100s, scientists were astounded to find large-scale deterioration of brain tissue, and even lesions associated with strokes and progressive Alzheimer’s Disease — yet she remained clear-headed and lucid to the end of her life.

Sister Mary’s brain apparently defeated the effects of these brain diseases by countering them with an unusually rich growth of interconnection between her brain cells, or neurons. Her extra dendrites and axons were able to bypass damaged areas of her brain to keep her lucid and healthy.

I need to do what Sister Mary did. Okay, I’m not a nun, and believe you me, there is no way I’d qualify to join them, even if I wanted to. Fundamental human differences (like anatomy and philosophy) preclude that. But if Sister Mary could manage to remain clear-headed and lucid despite large-scale deterioration of her brain tissue — including strokes and Alzheimer’s — then heck, why can’t I?

Seriously — the nuns are human, and I’m human. Perhaps Sister Mary didn’t grow up climbing and jumping and falling and fighting and tackling and being tackled, but if she was able to keep her act together despite some seriously damaging conditions, then why can’t I?

I may have led the kind of life that’s laid the groundwork for some serious cognitive degeneration as I continue to age, but by God, if there’s a way I can avoid going down the long dark tunnel to diaper-clad dementia and the total loss of everything I hold dear that makes me actually human, then I’m all in.

So, here’s my plan:

  • Stay positive (no matter what) – no matter how dismal things may seem, life has a funny way of turning around, sometime or another.
  • Introduce structure and order to my life – make sure I plan my days, and then stick with the plan (like they tell me in the Give Back Orlando material)
  • Cultivate more discipline to maintain that structure – because the stuff won’t get done by just listing it on a page
  • Do what I can to surround myself with like-minded people – friends are important, and I haven’t done enough over the years to cultivate those connections. I know this should change, and so I’ll do that.
  • Journal, journal, and journal some more – It worked for Jefferson, Edision, Faraday, Isaac Newton, and Einstein, and it can work for me.

The great thing about journaling, from where I’m sitting, is that it enables me to do all of the above items. It lets me work on my attitude, tweak my outlook, and get in touch with what is holding me back. It helps me introduce structure to my life, not only by committing to do it daily, but also by journaling in a way that is as much planning as it is reflection. I can use my journal to track my progress and develop my discipline — in ways that are appropriate to me. And it can help me work through the things that keep me from others. In my journal, I have a safe place where I can uncork at will, and no one is harmed. Too often, I have just said what I felt to people who either could not hear it, or who didn’t deserve to bear the brunt of my intensity. Using a journal lets me say what I need to say and vent, without the danger of harming others. That’s important. Especially for me. My past is littered not only with subconcussive head traumas, but also with tons of relationships that could not withstand the pressure of my outbursts and lack of control.

So, onward and upward. I have access to information about people who managed to overcome some pretty serious threats to their sanity and cognitive health. I have access to accounts of their lives and scientific investigations into what worked for them. I can avail myself of their teachings and lessons and use them to my benefit — so that I can live out my days in good health and soundness of mind. I have a plan, and I’m determined to stick with it.

All good.

MTBI and mental health

I’ve been thinking a lot about how TBI (especially MBTI) can either masquerade as mental illness… or lead to it. Not being a psychotherapist, I can’t speak to the intimate details of what makes a person mentally ill, but being a multiple MTBI survivor, I can speak to my own experiences.

In my recent post The Disordered Life and the Need for Psychotherapy, I talked a bit about how my past therapy experience was perhaps not the most effective for me — or the most appropriate. And now I’m starting to think that maybe it did me more harm than good, in some respects. That constant plumbing the depths of my soul, looking for things to explore… well, that frankly wasn’t often a very productive experience. I’d end up in tears, 24 hours later, and I’d be turned around for days, confused about things and off-balance in my life.

Here are some more thoughts regarding the mention over at Get Real Results. Their text is in bold, mine is plain.

Many people who enter traditional psychodynamic psychotherapy do so because they are dissatisfied with their lives.

I got into therapy, because I was having an incredibly difficult time dealing with being a caregiver for a family member who had developed disabling health problems. They had been going slowly but steadily downhill for a while, their health problems worsening without being really addressed. They frankly refused to see a doctor for their problems. They wouldn’t even admit that there was a problem. I had tried to soldier through with them, stick with them, no matter what, and be loyal and helpful and stabilizing. But ultimately, they ended up in the hospital, where they were properly diagnosed and put on a recovery regimen. They were unable to do much of anything for themself, so I took time off from work and helped them get back on their feet. During that time, I was the only caregiver for them, and due to circumstances that are way too complicated to go into here, I couldn’t ask friends of family for help. Only a few were available to me, and then in a very limited capacity. Basically, I was holding the fort down for the two of us, and I was getting increasingly frayed… and incapable of dealing with the situation in a productive manner. My temper got shorter and shorter and increasingly explosive, I was melting down (in private), occassionally self-injuring to relieve the internal pressure, and becoming more and more PTSD-y. It was just not good. I was getting worse by the week, and it was starting to get dicey for the person I was supposed to be caring for. I knew I was supposed to be doing better than I was, and I couldn’t figure out why I was so fragile and inept and having such a terrible time of things. A friend pushed for me to get into therapy, and they found me a seasoned therapist they thought would be a good match. I decided to give it a try.

Their dissatisfaction may be due to being unsure of themselves, goals that are not clear, inability to accomplish what they want, unsatisfying relationships, anger or fear, or they are depressed.

I really didn’t know what was going on with me. I was having a hell of a time understanding what the doctors were telling me, remembering the info I was getting, and if I hadn’t had us all on a very strict schedule each day, with extra attention paid to nutrition and exercise and the most  basic of needs, we all probably would have spun wildly out of control. Friends who knew about what was  going on would would ask me what I needed, but I had no idea. They would try to talk to me about the situation and give me some support, but I coudn’t seem to access anything useful to tell them. I could discuss high-level things like medical research. I could talk about basic stuff like eating plans. But when it came to regular human interaction and talking about what was going on with me, I was at a complete and total loss. People would ask me what I needed from them, and I couldn’t answer. I literally didn’t know. All I knew was, I was locked on target to keep everyone in the household going, and keep my care-take-ee on the road to recovery.

Hoping to find out what was going on, I went into therapy. I really didn’t know what to expect. I had tried therapy years before, and it ended badly. What I did know was that I was wearing thin, I was melting down, I was not holding up well, and I didn’t know why. I needed someone to help me figure it out — and hopefully address it.

Psychotherapy offers them a chance to explore their feelings and past, uncover and resolve the conflicts that interfere with their lives, vent their frustrations, and get on with their lives.

Oh, yes… the exploration of the past… My therapist was really into that. They wanted to know what my parents were like, what they’d done that was awful, what my childhood environment was like, etc. Granted, my early childhood was not easy — I didn’t see much of my parents in my early years, I was in childcare during most of my waking hours, and when I did see my parents in the evenings or on the weekends, they were busy working around the house or they were occupied with concerns other than me. And the times when I did interact with them, I often had troubles. We would start out pretty good, then eventually things would go south, and I’d end up melting down or being disciplined for something I’d done. I had a lot of sensory issues when I was a kid — touch felt like pain a lot of times, and I had a hard time hearing and understanding what people were saying to me — so the “easy” times were a bit more complicated than one might expect.

Anyway, my therapist apparently had a lot of interesting material to work with, ’cause my childhood as I reported it was such a tangled mess. And my teen years and early adulthood weren’t much more straightforward.  Let’s just say I’ve had an eventful life. A non-standard life. A unique experience. I often got the feeling, during our sessions, that they were trying to uncover something really awful that would explain why I was such a wreck.

I have to say, I wasn’t always comfortable with that dynamic. It seemed to me that they were making some assumptions that just didn’t “sit right” with me. Looking back honestly and truthfully — and I’m not afraid to look at bad things that have happened, to me (even though I’m not usually comfortable talking about them with others) — I just couldn’t find any evidence of the kinds of abuse that are usually associated with intense PTSD. Sure, there’s that whole “repressed memory” thing, but I’m sorry, I just wasn’t feeling it. My diagnostic neuropsychologist concurred (on their own steam) that the difficulties I face are not psychological in origin, rather TBI-related, and even before I started the neuropsych testing, I had a strong, undeniable sense that the problems I was having with keeping up with everything around me were NOT just about stress, were not just about an unhappy childhood, were NOT based in psychological problems, but had some other origin. And I had to figure out what that was.

I suspect that hard-core psychiatric/psychological “team members” are going to turn their noses up at this, but you have to understand — I have spent 30-some years specializing in exploring the innermost recesses of my psyche. I’ve got countless journals filled with self-exploration to prove it. I’ve peered into dark corners on a daily basis for decades, and I’m not afraid to confront my demons. Seriously. I’m not. And when I took a long, hard look at the chronology of my childhood and teen years and early adulthood… and up to the present time… and I compared it with the chronology of my regular-functioning siblings… and I compared how I wanted (and tried) to  behave and experience life against how things actually turned out, well it was pretty damned clear to me that there was more than psychology at work.

There had to be a logistical, systemic issue at hand that hadn’t been identified or dealt with. My difficulties stemmed — it was pretty clear to me — NOT from things that were “done to me” but rather how I interpreted and experienced the events of my life. My siblings had gone through many of the same things I had — some of them had gone through much worse — and yet they presented as (and were/are) perfectly normal. Ironically, my siblings are — in the estimation of people who know both me and them — a lot less “together” than I am. But they are/were a whole lot more functional in the most basic ways — particularly socially. They knew how to identify and communicate to others what was going on with them and what they needed in tight spots.

I, on the other hand, had my act together in many ways that they never have, and was a super achiever with a good head on my shoulders in many respects, but in others, I was just a train wreck. I had always had a hell of a time figuring out where I stood in relation to the world around me, what I was feeling, what I was thinking, and what I needed from others. And while the experiences I’d had as a kid were not unlike what others went through, I took everything incredibly hard and couldn’t deal with much of anything. Change was all but impossible for me to stomach. I took any alteration — expected or unexpected — very, very hard. Some changes I took so hard, I apparently blocked them out from my memory, and I only know about them from my parents. Social interactions were pretty much a lost cause with me. Indeed,tending to the most basic things in life were next to impossible… like following conversations, being able to follow through with the easiest of tasks, playing simple schoolyard games like kickball and four-square, interacting with others, and keeping my act together without melting down or going off on wild hyperactive sprees. I was alternately aggressive and emotionally hypersensitive, and I spent a whole lot of my childhood and youth being extremely angry and bitter, and acting out in various ways.

Now, plenty of mental health professionals could probably come up with some workable explanations for all of this, and they’d probably be right. I’m sure plenty of people would have difficulty with what I experienced. My siblings still struggle with the aftermath of similar experiences. But not to the degree that I did/do. In fact, it was the degree of my difficulties that tipped me off that there was something more going on with me. When I took an honest, truthful look at my life experiences, and I compared the outcomes with other comparable individuals, I could very plainly detect a significant difference in degree that — I’m sorry — can’t be explained as trauma or post traumatic stress or even the changing times I grew up in. There was something more going on, which complicated things then. And it was continuing to complicate things for me in the present.

Unfortunately, although many head injured persons fit the above description and thus get sent into traditional analytic or psychodynamic therapy — they often get worse, not better, to everyone’s dismay.

OMG – I wish to hell I’d read this a year ago. It explains so much. Lemme tell you, it’s no friggin’ fun sitting there, week after week, sometimes twice a week, trying “like crazy” to figure out what’s amiss, and why… to be following the standard protocol of plumbing the depths, trying to come up with examples of past distress, trying to identify what’s going on with you… doing what you think (and are told) is the right thing to do, therapeutically… only to be an emotional wreck for days afterwards. And be getting worse, not better.

That’s what happened to me. I wasn’t becoming more centered and together.  I wasn’t better able to cope with the stresses of my life. I was actually having a harder and harder time of it. And I was starting to doubt myself at every turn. I was starting to doubt my judgment, my ability to cope, my sanity. I would sit there for that 50 minutes or so, trying to come up with some examples of what I was feeling or what I had experienced, only to come up empty-handed — and feeling pretty stupid in the process.  I would try to figure out what I was feeling, how I was impacted by such-and-such an experience, what others and said or done that upset me… and try to feel my feelings in general.

Therapy was supposed to help me make sense of things, and in some ways, it did help to have someone to talk to. But it helped me most when I was just talking about my life and not processing it all in a psychotherapeutic context. When I tried to “therapize” my experience, I just ended up feeling stupid and incompetent and beset by all sorts of self-doubt. I often couldn’t follow what my therapist was saying to me, and I could react quickly enough to get them to slow down. I would rush through my sessions with them, just saying out loud what I thought should be said, rather than letting on that I wasn’t following and I wasn’t  articulating what I wanted to articulate. I was so embarrassed that I couldn’t put into words what was going on with me — and in fact, I couldn’t figure out what was going on with me — that I spent an awful lot of time spewing stuff that wasn’t necessarily accurate or reflective of where I was coming from. I had always had such a hard time interacting with people — especially in spoken conversation — I just couldn’t deal with the talk-therapy scene in a really authentic way.

I knew this on some level, though I couldn’t yet put my finger on it, and it made feel like a total fraud and a loser — both because I couldn’t seem to do better in our interactions, and because I didn’t know how to ‘fess up … and do something about it.

As a result, a lot of the problems I was having became even worse, and I started to blow up and melt down and make really stupid choices over and over and over again. I went through three or four jobs in the time I was in traditional talk-therapy, and I was stressing to the point of having spells/episodes that looked a whole lot like seizures of some sort.

Not good.

This happens because the disorder in their lives reflects not primarily underlying psychological conflicts, but the damage to their brains that has resulted in cognitive and executive dysfunctions.

Amen to that. I couldn’t for the life of me figure out why I was screwing up, left and right. I was getting in touch with my feelings, I was feeling them. I was talking about my difficulties. I was releasing old hurts. I was doing what was supposed to be done — or so I thought — but my life was still on a collision course with… well, me. I was making all sorts of bad decisions, and my therapist gave me room to “explore” them as I wished. The only thing was, the decisions put me on a really bad path to some serious professional peril — and I wish they’d spoken up and corrected some of the shitty thought processes that were in play. I wish they’d challenged my thinking on a bunch of subjects. I might not have made the choices I did, and done the stupid-ass things I thought were such good ideas at the time, if they’d just questioned me more closely … with the understanding that my brain tends to misfire at critical times. I was cognitively and executively dysfunctional in some pretty significant ways, but they approached my difficulties from an emotional point of view, rather than a logistical one. They seemed to think that if I just had a better sense of self, and if I overcame my low self-esteem, I would be able to get my life back on track.

Uh…. NOT. Self-esteem has nothing to do with any of it. Nor lacking sense of self. It’s basic system issues that plague me. If anything, my sense of self is my strongest suit, and my self-esteem is for the most part quite intact. But all of my self-regard is useless, if my brain is misfiring and giving me wrong bits of information about what I should do with all that self-esteem and identity stuff.

This has gotten me in trouble more times than I care to think about. I swear… I’ll be feeling really strong and good about how I can do anything I put my mind to… but I won’t realize that fatigue is getting the best of me, and I’m missing cues and clues about what’s going on in the world around me. And I’ll screw up the job I’ve started — like a spreadsheet of numbers I’ve collected, or a piece of programming code I’ve written. I won’t muck up because I don’t feel good about myself, but because I didn’t take the time to walk through the steps of the job I’m doing… and I’ll screw it all up, miscalculating and end up with the wrong answer entirely. Broken program. Wrong numbers. Messed-up results — not because I lack self-esteem, but because my form was crappy.

Low self-esteem wasn’t the source of so many of my problems. MTBI was. Low self-esteem was an effect of the underlying problems — not a cause.

My old therapist also seemed to think that if I looked too closely at the ways in which I was deficient, it would take a toll on my self-esteem. If I explored the details of my screw-ups, I’d get down on myself and lose ground, psychologically. Untrue, untrue, untrue. It was in NOT looking at how I was screwing up, that I got into trouble, because I could never correct my mistakes so I’d do better the next time.  They spent a whole lot of time trying to reassure me that “I could do it”, without empowering me to actually do it in the way I needed to. Actually, I couldn’t do it — at least, not without help. There’s no shame in that, but the way they went about things, they actually made me feel as though there was.

Their lives are disordered because their brains are disordered.

Uh, yah. And acting like I was cognitively and excutively intact, was a huge mistake. For them, and for me. I guess I just didn’t grasp the extent of my difficulties, nor did they. They seemed to think that my lack of initiative stemmed from emotionally based depression, rather than a physical slowing of the brain processes… that my difficulties socially came from low self-esteem, rather than a long history of mucked-up relationships that stemmed from behavioral issues that began around the time of my first TBI and got worse with every successive one. My life, while full and whole and complete and highly functional in some ways, was in a total shambles in others.  It seems to me that that should have raised a flag of some sort — why does someone who is such a top performer and peak achiever in significant ways, also show such profound deficits in others? It’s not emotional in nature and origin. It’s neurological.

“Talking things out” does not solve the problem and may worsen it.

Which it did for me. Talking just made everything worse — it was all talk, no action, and if I talked about my difficulties, their main approach was to reassure me that I was an okay person (which I already knew!) rather than encourage me to deal with the logistics.

This is because traditional therapy removes structure and encourages the spontaneous expression of whatever thoughts and feelings seem most important.

Yet another contributing factor. OMG — can I tell you how many sessions I just rambled on and on without any particular direction? It may have seemed like giving my emotions free rein was a good idea, but they clearly didn’t know how capricious my brain can be around thoughts and feelings. Without structure and purpose, all that cognitive energy just went flying all over the place, leaving me even more confused than before, in many ways. Which did not support my mental health.

Such a process is guaranteed to lead to further disorganization and confusion in a person whose major problem is structuring and organizing the thinking processes, while trying to keep surges of emotion from washing everything away entirely.

Amen to that. Now I can see why my present therapist, who is a neuropsych by training, is constantly steering me away from the emotional exploration I became accustomed to. This new therapist (NT) takes a totally different approach from my Old Therapist (OT), and I have to admit it confused me at first and made me angry and disoriented. I was accustomed to therapy being about venting and “releasing”, but NT was focusing on logistics. And steering me away from overly emotional responses to every little thing (which had been encouraged by OT before).

When individual “therapy” is a successful adjunct to a rehabilitation program, it is a structuring, supportive, problem-solving approach.

And so it is — this new approach with NT is so much more helpful to me. And to everyone around me. My family members have commented that I’m doing a whole lot better, now that I’m seeing NT, and I can tell a huge difference. NT is very supportive, but they don’t let me get away with crappy cognitive processes, and they make me stop and think things through before I take action I’m talking about. They’ve already “talked me back from the edge” of doing something really stupid, a number of times. And this in only a few months. Plus, they’ve talked me through some wrong assumptions and bad information I was working off of, for nearly 20 years. They are talking me through thought processes that have been deeply flawed — yet rote — for decades, now. And I’m revising my perceptions in the process.

That’s just huge. And it’s something that I, as an MTBI survivor, need desperately. I need to be stopped and questioned and challenged. Even if it makes me uncomfortable and mad. I need to be forced to think things through in a careful and deliberate way, not just fly into situations thinking I can do everything on reflex. I can’t. I’m not sure I ever could. But this is the first I’m realizing it fully.

But at least I’m realizing it now. So I can actually do something about it. And make some real progress!

This does not mean that head injured persons cannot have mild or severe psychological problems that either result directly from, or exist (usually existed) separately from the results of their injury.

In my case, I would say that a fair number of my psych issues have stemmed from my long history of screwing up due to MTBI problems. There’s only so many false starts and cock-ups you can commit, until you start to be convinced you’re an idiot and don’t deserve a full and fulfilling life. There’s only so many relationships you can blow away, before you start to think you’re unfit for society. And having people make fun of you and bully you and ostrasize you and tell you you’re lazy and stupid and slow and whatnot also takes a toll.

I’m not complaining and I’m not crying boo-hoo.

I’m just saying…

They can, and often do. It does mean, however, that the traditional psychodynamic approach seldom offers the head-injured person relief from their disordered life.

Yes to this. To get relief from my disordered life, I need specific coping strategies and tools in my “toolbox”. After I’ve stopped making a mess of everything I touch, I can start to rebuild my self-esteem. But not before then.

The psychotherapist who specializes in brain injury must have an appreciation of the impact of brain damage on the patient’s capacity to benefit from the process of therapy.

Which my OT didn’t, I don’t think. At least, I don’t think they understood just how deeply I’d been impacted by a lifetime of injuries and the resulting effects.

Rehabilitation professionals should seek out such specialists if their clients require psychotherapy.

And clients should do the same.

I’m really hoping that this post has offered some food for thought to therapists and clients alike. It’s just so important, and there are so many critical considerations to go into this.

If TBI isn’t considered fully in therapy, the process itself can wreak havoc in an already disordered life… making things worse in the process. Folks may disagree with what I’ve said above, but that’s just my own experience and perception.

Therapy should be helpful. I think we can all agree on that.


Snap! Anatomy of a TBI temper flare

If you’re a TBI survivor, you may be very familiar with the flares of temper that can sneak up on us unawares. It is very disconcerting, if you’re a pretty even-keel sort of person, or if you really don’t want to pitch a fit, but find yourself flying off the handle against your own will.

This has happened to me as long as I can remember — temper flares that come out of nowhere and decimate not only my relationships with people around me, but my self-esteem and self-confidence, as well.

I recently wrote a post called One Potato, Two Potato… that talks in greater detail about my experience of an intense temper flare that builds up over time.

I actually have identified a number of different kinds of flares I experience:

  1. Flares that originate inside me – and come up suddenly without any warning
  2. Flares that originate inside me, but percolate and develop over time, till I boil over. (That’s what One Potato, Two Potato… is about)
  3. Flares whose source originates very suddenly outside me – they’re knee-jerk reactions to external conditions that actively provoke me.
  4. Flares whose source comes from outside me that percolate slowly until I boil over.

There are other ones, as well, and I’m devoting a fair amount of my time, these days, to thinking about them. Of all the cognitive-behavioral issues I have, my temper flares are some of the most challenging. And since so many people reach this blog by searching for info on TBI and temper, I know I’m not the only one.

For the uninitiated, here’s a general description what happens in one of my TBI temper flares, how I deal with it, and how I pull out of it:

  1. I have a goal in mind — it can be as simple as picking up a pencil, or as complicated as making a three-course dinner.
  2. I turn my attention to the thing I want to do… think about doing it… think about not doing it… and then I decide to do it.
  3. I shift into gear — I reach for the pencil… or I start peeling vegetables for cooking.
  4. Suddenly, something stops me — I drop the pencil, or a potato slips out of my hand and skitters across the floor.
  5. A sudden wave of violent emotion sweeps through me, like a wildfire through dry California underbrush. My eyesight dims briefly, as my heart pounds and adrenaline floods through my veins. I want to strike out, lash out, hurt whatever is getting in my way. I curse the pencil… or I feel a sharp stab of rage directed at the potato. If I were able to kinesthetically direct energy at will — and if my temper had its way — the pencil or the potato would be a smoking little pile of ashes.
  6. In the back of my head, the calm, collected voice reminds me that it’s just a pencil or a potato, and that no one was harmed by this thing slipping out of my hand. I don’t need to strike out and harm anyone, just because I lost my grip.
  7. The part of me that doesn’t care for these temper flares is mortified at my intense reaction. It’s deeply ashamed that I would get so worked up over such a little thing. So what, if the pencil or the potato got away from me? What’s the big deal? The wild animal part of me that flared intensely is cowed and tries to defend its reaction, but when the logical, sensible, even-keeled part of me prevails in its reason, that little animal part of me slinks away to a corner to lick its wounds and chastise itself for being bad… again.
  8. In an attempt to de-escalate my just-add-water instantaneous rage, I pause and take a measured breath. I turn my focus back to the basics — the simple act of picking up the pencil… retrieving the potato from the other side of the kitchen. I focus on the most basic aspects of the moment, waiting till the rage subsides and I can get back to doing what I started out doing.
  9. If all goes well, I can continue with my task and not suffer too much at the hands of my self-recrimination. If things aren’t going well, like if I’m stressed or fatigued or scattered, I may throw something or curse or hit something or lash out… with the consequence of not achieving what I intended to achieve, and descending into a downward spiral of shame and blame and guilt and embarrassment. If I’m lucky, no one is around to see this. If I’m out of luck, someone I love and care for is nearby and is strongly impacted — and quite negatively so — by my sudden rage.

Now, I’ve noticed that if I have built up a lot of momentum around Step 2, my rage response is much more intense, than if I proceed with measured pace, taking things one at a time. I also need to be careful not to indulge every reaction that comes to mind.

It’s helpful if I can sit back and just observe myself, not participate 100% in the whole unfolding drama. But observation doesn’t always work. Especially if I’m tired.

Over the coming weeks (early 2009), I’ll be writing more on this. It may be helpful to others who are dealing with the challenges of TBI temper flares… with greater or lesser success. In fact, some folks have said that what I’ve written so far, is very helpful to them, so it’s my hope that I can help more.

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A reply to a comment that took on a life of its own

I had started to respond to NEDream’s comment and the reply really took off… I’m incredibly tired, these days, but I did want to post this…

NEDream, I hear you… There is a lot I would love to be able to do, but given that I’m coming from a place that’s impaired — and often in ways I don’t even realize — it’s hard to know just what to do. I’d love to be able to go on lecture tours, meet with professional caregivers who know far too little about tbi, consult with best-practices people, and generally contribute to the widening knowledgebase for professionals — the front-line care providers and experts in these extreme health matters. But I tend to run out of steam (my high energy notwithstanding). Plus, I’m dealing with additional health issues that had escaped me as being real problems, also I think in part due to my cognitive issues.

How ironic, after all these years of being beaten up by others for being “less capable” because of injuries and deficits I myself could not detect, now I’m able to detect my deficits and identify my injuries, but the people who would/could help me are totally thrown off by my ability to deal… Catch 22, if ever I heard one. And it makes me absolutely NUTS to think of how much good I (and others) might be able to do others like us — I know I would have benefitted greatly from someone like me crossing my path about 10 years ago!!! — yet the experts and people who are guarding the castle of acute health care are barring us from crossing the threshold because, ironically, we’ve been injured. That’s what it feels like, anyway. I might be totally off-base about this, but whenever I talk to a professional psychologist or neurologist or neuropsychologist, I get the sense that they are looking down their nose at me… even though I hold in my possession a vast amount of experience and knowledge that could probably help them become better practitioners… if only they’d let me help them. I do want to help. But I get the impression, I’m not “allowed”. After all, I am brain-injured 😉

I too am really torn about what to do to help. I think that people like you and I are extremely well-placed for this time in history. Not only do we have access to technologies that put our words in front of total strangers and people who may be looking for information we have, but we also have the kinds of experiences that people used to NEVER (and I mean NEVER) talk about. I should know — I came from that world. And I’ve been dealing with this –crap– complicated situation for most of my 43 years. My family was so ashamed of me, they didn’t understand why I did the things I did, why I couldn’t figure stuff out as quickly as others, why I would say one thing and act like I was totally right, when I was totally wrong… why I couldn’t finish any chores they had me do, and I would always miss some detail — like a corner of the hedge I forgot to trim or a portion of the yard I forgot to mow or the leaves I raked into a pile, but couldn’t manage to haul away to the compost heap. They just didn’t understand, they thought — I guess — that it was God’s will that I suffer like that, and I was just their cross to bear. They were grateful to have other children who didn’t have all the issues I did, but I was always there to remind them that something was amiss… even if they didn’t understand what that something was, or why it was.

Now people are talking about this… and I think that as people look back, they will see that head trauma is much more a part of human experience, than we thought, before. My father-in-law was in WWII (he passed away over 10 years ago), and from the stories I heard about how he was when my spouse was growing up, it sounds like he totally had a TBI — if not several — when he was at war, if not earlier in life. He was always a real fighter — always getting in brawls, beating on other guys and getting beaten on — and the stories I heard about his temper, his violent outbursts, his need for silence at the end of a long day, his sensitivities, his quietness that would suddenly explode, his troubles with drugs and alcohol, and his constant remorse over what he’d done wrong in life… well, it sounds pretty familiar to me, and I suspect that he had sustained TBI’s throughout his life that colored his experience. But back then, when he was active as an adult, men were supposed to be the strong, silent types, not show any emotion, not betray anything about what was going on inside him. I think back now, and I can totally see how he just suffered and suffered and suffered in silence, because he — and everyone else — didn’t understand the nature of his injuries.

But as I was saying — and I’ll finish this thought sooner or later 😉 — now people are talking about TBI and they’re starting to lobby for assistance. They’re starting to raise awareness. They’re advocating and agitating, especially on the internet. Now that we have the web at our disposal, we can get the word out there about our experiences. And even though we may be “pedestrians” and “lay” people, we are still experts in our own experience, and we can share with others what it’s like to live — and live well — with (and in spite of, or even bacause of) our injuries. There’s that whole “wounded healer” paradigm that some therapist friends of mine love to talk about. And when it comes to giving people hope, there’s nothing like hearing from others that they’re in the same boat as you, more or less.

One of the things I really disagree with, in regard to current thinking about TBIs is the concept that “every TBI is different”. That may be true, but I think that some health care providers use it as an excuse to not fully engage with TBI survivors and not explore all the options. I think they also say that to cover their asses, so we don’t get our hopes up and have “unrealistic” expectations of them. I totally agree with the author of “Brain Heal Thyself” (I think that’s they title) who really takes issue with that “ever brain injury is different” attitude. Yes, we are all different. Yes, we all have different injuries. Yes, our brains are all different. But we share common traits with one another — in particular, the part of ourselves that’s been hurt — that can unite us and give us a sense of belonging and community. To impose a sense of isolation and alienation on someone whose most prized physical resource has been damaged, is not only unfair, it also strikes me as being a little cruel. All because doctors don’t want to admit that they don’t have all the answers, and they might actually learn something from us… I know I’m over-simplifying and I’m venting. I’m tired, after a long day of being tired… But I think my complaint has merit.

And I’ve got lots of complaints. (I do vote, after all 😉 ) I’m one of those people who cannot help but think critically… not because I hate everyone and everything (though I have my moments), but because I feel that criticism is one of the highest forms of flattery — if I didn’t care, I wouldn’t bother to criticize. I’d just let people wallow and rot. But I do care. I want to help shed light and explore things that people cannot see or have overlooked. Unfortunately, my combination of injuries and personality conspire to make me look different than how I feel, and I often don’t realize that I’m coming across as rough as I am. That’s why I prefer to write — it gives me a chance to edit before I post what I say. Sometimes I speak/write too quickly and I get in hot water, but that’s just par for the course.

I’ve been writing a lot lately, because I’ve been pretty freaked out by some health stuff that’s come up, and I’m worried. No, I think terrified is a better word for it. I’m sure it will all work out, but given my pathetically limited ability to communicate verbally with doctors, I’m really concerned that I won’t be able to communicate with them, and I won’t get the proper care. It’s not a small thing I’m dealing with — and I need to deal with it — but I’m just not sure how I will be able to do it.

I’ll post more about that later, but right now I need to stay on topic and move this along. A lot of things are coming up with me, so it’s not difficult to move *something*. Ironically, the more fatigued and uptight I am, the more I’m driven to write and create and comment on any- and everything that crosses my path. That, and with Veteran’s Day and thinking about how shafted so many of our brain-injured wounded warriors are being… how alone they can be… how lost and alone they are, without sometimes even knowing WHY… it nudged me into action. For my father-in-law, who was wounded multiple times in Europe, and got sent back, time and time again, to be shot up and patched up and sent back in… For the fallen who gave their lives… For the walking wounded who fall through the cracks… for all of us who have been knocked around in this rough-and-tumble world, and may not always have a fighting chance to recover…

I can’t believe that story about your mom’s friend’s husband’s son… I would like to be all cynical and jaded and not be affected, but I literally cannot believe that this actually happened. Pardon my French, but… Oh, for Chrissakes! Holy f*ing sh*t — WTF!?!?!?!? That just totally freaks me out. A neurologist suggested that the guy remove a *vertebra* to deal with the pain?!?!?! WTF?!?!? I mean, is this what they teach people in med school? I have a relative who’s a freshly minted doctor, and they have very little positive to say about neurologists. They just don’t trust them. And after the stuff I’ve been through with some supposedly very good ones, I have to say I’m starting to agree. Of course, there’s also something to be said for second opinions, and personally, even if I was in horrific pain, I’m not sure I’d have the balls to have one of my vertabrae removed(!). That just sounds so extreme. I guess I’m just a wuss, but, man, oh, man — that’s just HORRIBLE.

Okay, I’ll calm down, now, but I get SO upset when I hear about people’s lives being ruined even more than they already are, because some doctor — who is in a position of trust — gives them BAD information, for whatever reason. It’s all the more upsetting, because I really believe it’s avoidable. There are so many of us walking around with this vast amount of life experience, who could open some eyes — if people (including doctors) would only listen. And the experience we carry around with us can apply on both sides of our issues — both towards informing caregivers and experts about what the deal with us REALLY is… and towards informing the walking wounded that their doctor is NOT God, and they can be wrong about so many things.

I think the medical establishment, as it now stands, needs a good deal of work, not least of which is a good dose of humility and the recognition that something is systemically wrong with the AMA and how it trains its doctors. If there were something I would change, right off the bat, it would be the practice of teaching doctors about the human body by using cadavers. I think the practice of studying a dead corpse to learn about the living body is a BAD IDEA, and it starts you off on the wrong foot. Of course, I’m not a doctor, so who is going to listen to me? I’m an engineer and I make my living from creating solutions based on logic, not mystique and precedence-based assumption and a sleep-deprived sense of entitlement, so I’m probably not the sort of person a medical person will listen to. But it seems to me, if you’re going to treat living people, you need to learn how living beings survive and thrive. Call me crazy…

I know I’m just venting, here, and I’m not being supportive and productive and making a positive contribution, but I just don’t understand this whole dynamic with doctors. I don’t understand why they think they’re all that… why they think they can tell people to remove a vertebra… why they think they can toss around diagnoses (correct or not) and pretend that they are God. I just don’t get it. It seems really dangerous to me. Really dangerous and not very bright. I suspect all that sleep deprivation during their training does something to their thought processes, and the fact that so many of them deal with crises so much… and their limbic systems get whacked… amygdala alerts 24-7 can’t be good for the human system. So I think they may end up getting turned into medical machines of sorts. I’m just thinking out loud, here. I do have tremendous compassion for the folks we turn to for our life-and-death decision-making. And I would never have the nerve to step into that role. It must take a very special kind of person to do it properly. Problem is, I’ve met precious few doctors who I’d trust with my life — I do know a few, and I literally would trust them with my life. But the majority… I just don’t know how our society has gotten to a point where we value human life so little, that we turn our fate over to people whose egos are clearly driving their decision-making, no matter what anyone else has to say about it. “They’re the doctor…” And that’s supposed to be enough?

What can we do about this… indeed? The more I think about it, the more impotent and ineffectual I feel. There are SO MANY PEOPLE SUFFERING, because they cannot get the right information, and when they do get information, they cannot decipher it, and they’re left to their own limited devices… just when they need more help than ever. I fell so deeply for the suffering folks — tbi survivors and family/friends alike — who are struggling with this seemingly insurmountable obstacle, given no hope, told that they have lost just about everything, and whatever is left, they’re going to lose, too. I almost can’t bear the thought of all that suffering — especially in the lives of our returning veterans… and their families, too.

It’s just so hard. And I speak from many years of experience. IT IS HARD!!! It is harder than anyone with a fully functioning brain can imagine. It is harder than anyone who has not been through it can possibly comprehend. TBI — by its very definition — defies comprehension. And it leaves us to fend for ourselves, come what may. Some days, I can’t believe I’m still here. All the bad decisions, the run-ins with cops, the accidents, the screw-ups, the near-misses, the close calls… And all the people I’ve totally pissed off and alienated, who had once been valued allies and friends… Man oh man, am I blessed to still be here and be able to write this! I am so deeply grateful to whatever higher power out there thinks my life is worth saving. I am so profoundly grateful to all the strangers who helped me (or who just resisted the urge to take advantage of me)… the friends who bore with me… the (few) family members managed to love and accept me… the partners who — for however long — put up with me. And the person who has managed to hang in there with me for the past 18 years. I am indeed blessed. And I can’t account for it at all. I mean, when I’m in a bad way, I’m REALLY in a bad way… just impossible to live with… How I still have what I have, is nothing short of a miracle.

Now, I can’t speak for anyone else, but I feel utterly compelled to help. To do something. And my “thing” is writing — detailing my life experience in as much depth and breadth as I can. I don’t care much for fame and fortune — well, fortune would be nice, and I won’t turn away financial contributions to help me dedicate my life to educating people about how to live well in spite of TBI — I just want things to change. I want people to hear about someone who has sustained multiple TBI’s throughout their life and has managed to put together a really, really “normal” sort of existence that nobody — especially not my parents — ever thought I would have. I want people to know that they don’t HAVE to lose it all, just because they have a brain injury, and in some ways, they may even find themselves able to do different things better than ever. It takes a long while for a lot of us. It took a long while for me, to sort through everything. But it can be done. TBI doesn’t have to be a death sentence. And it doesn’t need to mean the end of everything you care about and love to do. Yes, you may need to part with some things that used to mean a lot to you. I lost a bunch of stuff, after my last injury, including my ability to spend time in open spaces, be comfortable around strangers, my love of reading fiction, and a really, really good job. My injury cost me hundreds of thousands of dollars in personal net worth. And I lost a lot of friends along the way. But you know what? I’m still here!!! And I’m still loving my life! I’ve let that old shit go, about how I was so wronged and life is so unfair. Of course I was! Of course it is! No kidding. But I’ll be damned, if I’m going to let that stop  me from living my life.

Seriously, money can be replaced. And every day, I’m finding ways of regaining/restoring the things that mean most to me. I don’t WANT to dread reading stories, anymore, so I’m practicing reading story-driven books, like autobiographies and personal memoirs of people who have overcome things like me. I’m also starting to read fiction online, which I can take in shorter bits and pieces, while I’m at work. I’m coming to terms with the anxiety and fear that’s been driving me all my life, learning new techniques for how to deal with it all — the first part being, just realizing how driven I am by anxiety and fear… I never realized it till this past year, when I really started coming to terms with my TBI’s. And now that I’m aware of it, I can actually do something about it!

I’ve also got new friends who love and accept me for the odd and sometimes bizarre creature I am. Jobs come, jobs go. I’m still breathing, I’m still able to put one foot in front of the other. And as long as I don’t hold myself to unrealistic expectations, including the expectations of others who have some pretty superficial values, and I give myself a break and remember I STILL MATTER AS A HUMAN BEING!!! well… I’m fine.

What we can do to help — and yes, now I’ll finish the thought 😉 — is write all this stuff down. Everything. As much as we can record. Put it out there. Spread the word. Make it possible for people to do the social networking thing with our blogs and do social bookmarking and all that. Do podcasts. Do teleseminars. Do webinars. I, myself, have to really watch my energy, and I have such a hard time dealing with people in person, that I’m pretty much excluded from the public speaker circuit. And I get so turned around when I’m actually talking to another person, at times, that I can’t get my words out, and I sound like a real space-cadet. That’s not who I am, but that’s how I present, a lot of times. So, I recognize my limits, realize what I cannot and should not do… and I do something else. Like blog. The things that I cannot do, I really should not do. But the things that I can do, I can do really, really well. So, I figure out what works, and I just stick with that. I let the other people out there do the things I cannot — like public appearances and YouTube videos and podcasts and whatnot. We all have something to offer, no matter how severe our array of deficits. The trick is finding out what works for you, and doing that as well as you can (without completely exhausting yourself, which I am prone to do).

Very, very cool. Wow — something that actually works. Imagine that… I hope it continues to work for you. By all means, do post info about this here, if you get a chance.

What happened in the field that day

Here’s what I remember:

I was about 8 years old and I was playing up at a field near my family’s house. I was with my younger sibling. The field lay right between two different neighborhoods, and we never went into the other neighborhood by ourselves. We rarely went there at all, period. We were playing about 50-100 feet from the entrance on our side of the field. The line of garages that flanked the alley on the other side of the field were behind us, and we were facing the direction that our one-way street went.

The field was bounded on the other side by a high (maybe 20-foot) chain link fence, and our side was the only “real” entrance to the area.

My sibling and I were there by ourselves for a little while, then two kids appeared on the other side of the field. They crawled under the bottom edge of the fence, slipping through a depression in the ground and looked over at us.

We looked over at them — I’m not sure if we called over to them and said hello. I’m not sure if we even acknowledged their presence.  I suspect we didn’t. The kids weren’t supposed to be there — they had crawled under a fence that was built to keep them out, after all. As I recall, we decided to mind our own business and keep playing.

The kids called over to us a couple of times, but we ignored them and just kept playing. Then they started yelling at us — calling us names. We didn’t respond, and after a while they started throwing rocks at us.

At first the rocks didn’t fall very close to us. It was a bright afternoon, and we wanted to play. We decided we were going to stay put. My sibling wanted to go home and pulled at me to go back home. But I said we needed to stay. Or maybe I just thought that, and my sibling just went along with me. Our dad was really into standing your ground and not backing down from your position, if you were threatened, and I wanted to make my dad proud of me and not give in to bullies. I remember the thought going through my head, that we needed to stand our ground and not just run away.

Several rocks fell closer and closer to us. I think the other kids threw 3 or 4 rocks before they got close. While they were throwing the rocks at us, I remember them laughing and urging each other to get closer. I remember focusing on just ignoring them and not being intimidated by them. It didn’t occur to me that I could be hurt — or maybe I didn’t care?

After a number of times of trying to hit us, they succeeded. I remember the distant feeling of a rock hitting my head — then everything went dark.

The next thing I remember, was looking up to see my sibling sitting beside me, crying. They hovered over me, tears streaming down their face, looking terrified.

I remember being really dazed and foggy as I came to. But I did finally know we needed to go home. The kids on the other side of the field were laughing and cheering that they’d hit me, and when we left the field they were jeering at us. I remember feeling like I’d failed, like I’d given in to being bullied, and I was really disappointed with myself.

I recall being wobbly and woozy on the way home, and my sibling was very upset and crying the whole way there. I was embarrassed by the display of emotion. I wanted to be stoic and take it like a grown-up. I didn’t want to be injured. I didn’t want to be woozy. I didn’t want to be wobbly. And I certainly didn’t want to cry.

When we got home, I remember my sibling telling our mom and dad what had happened. I was embarrassed that I’d been hurt and needed attention, and I was upset that I worried them. I remember Dad telling me to lie down on the couch, and he looked at my head — I don’t remember bleeding — but I recall that I did have a huge lump on my head.

The bump on my head was above my hairline, which made it difficult for my mom and dad to see where I was hurt. The bump was pretty prominent, and they got some ice to put on it, which hurt, because the edges of the ice cubes were hard and felt sharp. I really just wanted to not attract attention and not be fussed over. I just wanted the whole experience to go away, so  wouldn’t worry everyone. My sibling was so upset and crying, our mom had to take them out of the room and get them away from me.

My parents called a friend of theirs who was a registered nurse, and she told them to get a flashlight and check my eyes for any dilation. I seem to remember something about them not being sure if my pupils were dilated or not, but in any case, they had me lie on my left side, facing the back of the couch, and put ice on the bump.

I remember I was so tired, and I wanted to sleep, but my dad made sure I stayed awake. I remember him looking in my eyes several times to see if I had a concussion, and both my parents discussed whether or not I should go to the hospital. If I remember correctly, my dad said he didn’t think I had a concussion, so they didn’t take me.

Things were very foggy for me, after that. And I recall not being allowed to play much, in the coming days.

It wasn’t long after that, that I noticed that the moon was double, when I looked up at it, at night. When I told my parents this, they were alarmed and took me to the eye doctor.

Wrong doctor, I think…

Temper, temper…

I’ve been checking my stats and seeing what search terms people are using to find this blog. “Temper” is a popular one. TBI and temper issues often go hand-in-hand… and for me, it’s been one of the biggest hurdles. I’ve lost jobs and burned bridges over temper outbursts. I’ve gotten into hot water all my life, because of my temper — starting with my parents, who really came down on me very hard for ‘not being able to control myself’.

If they had known that my falls and getting knocked out by that rock didn’t help matters, they might have been nicer to me. But they weren’t. And I was convinced all my life — till a year ago, when I realized that my multiple tbi’s had affected my cognition and behavior — that I was a BAD PERSON who wasn’t entirely fit to be around nice people.

You know what? I wasn’t BAD. I was INJURED.

That doesn’t excuse my behavior, of course, but it explains it. And knowing now that aggression, hostility, rage, temper outbursts, emotional volatility, and impulse control often go hand-in-hand with brain injury — be it mild or moderate or severe — helps me manage myself in ways that keep me and others safe from my outbursts.

So, what do I do about my temper (which has caused me to break many things, lash out, even physically assault people, to the point where I once had a restraining order against me)?

First, I remember that my tbi’s have affected my reasoning and the way my brain reacts to the world around me. I remember that there are mechanisms deep in my brain that react on a very primal level to perceived threats. There’s the amygdala, which is the fight-or-flight switch that seems to work in overdrive with me. And there’s the limbic system, which is about emotion. And then there’s the parts of the brain that control impulse, which are around the area where I got hit in the head (and knocked out briefly) with a rock, when I was eight. People used to believe that when kids’ brains were injured, they recovered better than adults, but now they’ve realized that if you injure a young brain, it affects how it develops for the rest of the child’s life.

So, I try to stay objective, and remember that my brain doesn’t work the way I really want it to.

Next, I try to stimulate my parasympathetic nervous system — the counterpart to the sympathetic nervous system — to chill everything out. The sympathetic nervous system, as I understand it, is the source of the fight-or-flight response that’s making me react so intensely and act out. So, to calm my system down, I need to trigger the parasympathetic system. I’ve been taught that deep breathing causes the lungs to expand, and when they press against the inside of the ribcage, it stimulates the parasympathetic system, so I try to breathe deeply and feel my lungs filling with air and pressing against my rib cage. Also, counting my breaths gets my mind off the turbulence and forces me to focus on something other than what’s pushing me over the edge.

I also rub my neck near the jugular vein — there’s a nerve in there called the vagus nerve that triggers the parasympathetic nervous system. It’s a huge nerve that runs through our whole body — look it up online for more info, as there’s more to it than I can come up with at this point — and one of the treatments for epilepsy to keep people chilled out and reduce danger of seizures, is actually to surgically implant a vagus nerve stimulator in their body. I’m not keen on the idea of having something implanted in me. I’d rather just massage my neck on the right side — but gently, as I’ve heard stories from doctors and nurses about people knocking themselves out by massaging it too hard.

Bottom line: I actively try to stimulate the part of my nervous system that’s built to chill me out. We all have it. We can all use it. And I do.

If this doesn’t work, I try to get my mind off things by doing something. I take a walk. Or I work in my workshop. Or I write something. Or I draw something. It doesn’t have to be perfect, but it needs to be active, and I need to really concentrate while I’m doing it, so I redirect that wild, primal energy/rage/agitation into something productive. Sometimes, I’ll clean my study, which gets to be a total wreck, at times.

I try to get my mind off things that were making me crazy, and do something  positive with my energy.

If all else fails, I remove myself from the situation, if I can, and take a breather. I physically exit the area, and I pull myself together. If I cannot stop the rush of temper with people I do NOT want to hurt (and I really don’t want to hurt anyone), I just walk away and gather myself. I give myself a talking-to. I don’t drive when I’m in that kind of a space, but if I can go into another room and close the door and have some quiet time in a darkened room, I do. I try to stop the cascade before I do/say things I cannot undo or take back.

I try to protect the ones I care about by removing my malfunctioning brain from their presence.

Most of all, I try to not judge myself and be too hard on myself. I’m a long-term multiple mild traumatic brain injury survivor, and the fact that I’m still here means I’ve done something right. I try to learn from my experiences and keep an eye out for things that may cause problems later. I make amends, whenever I can and should. And I do what I can to atone for the things I’ve done that hurt others — without my intending to or wanting to.

I have to remember that I am a good person, but my brain does not work as well as I want it to, and if I had total choice in the matter, I would definitely not do the things that my brain is prompting me to. This is not an excuse for bad behavior. It’s a warning to myself of what I have to pay even more attention to, so I can live the best life possible and, wherever and whenever possible, do no harm to others, but help in any way I can.

Not all of these approaches work 100% all of the time. And I don’t always have the presence of mind to do them when I should. But these things have worked for me and my extreme and volatile temper.

They might work for you, too.

Good luck!