Now I don’t feel so presumptuous

I’ve been digging into the Give Back Orlando materials, for the past few days, highlighting as I go. I printed out a copy of Teaching Yourself to Prevent Head-Injured Moments by Dr. Larry Schutz and I comb-bound it at work, using the hole puncher they have there and some comb binders I’ve been toting around with myself for years, in case I need to bind something. I often find documents that are much easier to handle bound, than as a loose sheaf of papers.

I have to say, reading it has been a real relief. As someone who basically self-diagnosed my problems and came to the realization on my own that I had serious issues — and had for a long, long time — and I needed to do something about them, I’ve had my doubts at times about the veracity of my quest. What numbskull actually runs around looking for reasons to call themself “head-injured?” I’ve thought to myself more than once, over the past couple of years.

But you know what? It’s a good thing I do, because if/when I don’t, as often as not, I end up in a whole lot of trouble. With people. With work. With situations I totally misjudge without ever realizing it.

Part of me knows beyond a shadow of a doubt that getting hit on the head, falling down stairs and out of trees, having car accidents, and getting hit really hard during sports games is not a good thing for my overall life. But every now and then, it’s nice to hear someone outside of my own head — someone who is a professionally trained and qualified brain rehab person — confirm out loud what I feel in my bones to be true.

Here’s a tasty nugget from Chapter One about “Learning about the injury” (bold is my addition):

Head-injury survivors can spend their lives trying to prove that the injury has not changed them in any important way. It’s easy to do, and there is plenty of evidence. Most survivors can still do everything they could do before the injury, even their most advanced job and hobby skills. If they could run a computer before, they can still do it. If they knew how to do brain surgery or rocket science, they still do. If they could speak four languages, they still can. If they knew the whole history of ancient Sumeria or ancient Motown, they haven’t forgotten it. They are 98% the same as they always were. But they usually feel 100% the same, and often they work hard to claim to be 100% the same.

They are the ones who don’t recover.

There is another way to live after a head injury. It involves working to notice what has changed.

Most survivors don’t do this. It would be unpleasant and negative, and many people want to think positive and feel good. Besides, all survivors get a powerful feeling from inside that they are doing things correctly at all times. The injury has shut down the brain’s quality control system, jamming it in the “all clear” position. The brain says everything the survivor does, everything the survivor says, is coming out just right.

It says “I am no different than I was before the injury.” And it’s not just a weak feeling–it’s a feeling of total certainty, a lock, dead solid perfect, a slam dunk! It’s the feeling the person has always gotten when things went just right. It feels good, and it feels right. So why question it?

Some people question it because it is their style to be concerned about screwing things up. They hate to fail, and they want to be extra careful. And the moment a survivor tries to be extra careful, that feeling of being right on the money, dead solid perfect in everything you say and do doesn’t make sense. Because if you look for things you have screwed up, you can find them. There have been more errors, more missed opportunities, more things you wish you had said in another way, more bad decisions, more times when you forgot to do something important or forgot a critical message–yet each time, you felt okay about what you were doing. As soon as you look for the things you’re doing wrong, you start to find them. And once you do this, you can see that for some reason these errors don’t feel wrong when they occur. And for some strange reason, you aren’t thinking of yourself as a person who makes more mistakes now, even though you should.

As you think about that, you begin to realize that there’s something wrong with how you evaluate yourself.

The survivors who realize this are the ones who start recovering on their own.

This, my friends, is a perfect description of me and how I came to this path. I am one of those detail-crazy individuals who hates to fail. I spend an awful lot of time trying to not screw up… and when I started to turn my eye to myself and my own actions and results, rather than looking out at everyone else, well, I could see there were a lot of errors. And none of them made sense. Because I was certain, every time I was making mistakes, that I was dead-on, 100% correct — no, 1000% correct. No doubt about it. But when I took a cold, clear look at what was really, truly going on — the botched jobs, the failed relationships, the disappearance of hundreds of thousands of dollars in a very short time… well, my logical mind could not deny there was something wrong, any longer.

So, here I am.

I’m just glad that someone else — who’s not inside my sometimes-screwball head — knows how to explain, describe and articulate it.

The Magic of “Analgesic Stress”

Clearly, the human body is built to survive. And the mechanisms that kick in to save our asses are as built-in as breathing heavily after a sprint or sex, as instinctual as brushing shaggy hair out of our faces when we encounter someone or something we need to see more clearly.

What’s more, the survival mechanisms we employ to escape imminent physical doom are also important parts of less extreme, yet equally vital physiological and psychological survival strategies. Physical responses to mortal danger don’t have to originate only from physical situations, like a mother grizzly discovering you standing between her and her cubs. They can just as easily — and probably, in today’s world readily — arise from psychological ones, such as a sneaking suspicion that your boss is going to fire you at the one-on-one meeting they just scheduled, or the surprise discovery of your spouse in bed with the neighbor.

In order to trigger the biochemical cascade of fight-flight-fright, our brains don’t have to be presented with cut-and-dried physical reasons to pump our systems full of glucose, adrenaline, cortisol, etc. The juices can start flooding our systems over perceived threats, as well. And those threats can be just as existentially distressing if they’re job-related or relationship-related, as threats that involve our physical being.

If something truly threatening to any aspect of your survival is registering, your brain doesn’t particularly care whether it’s a charging bear or a discharging boss. It doesn’t matter if the grizzly is coming at you with a roar, or your spouse is coming with a scream. A threat is a threat, and the part of our brains that differentiates between different sorts of threats is offline, at the time we’re reacting to something wretched happening to us. Sure, the refined, discriminatory, gray-area-friendly parts of our brains are still there, but they are waiting till after the excitement has died down, before they start to tell the difference between a purely physical fight-flight-fright scenario and one that’s all about our emotions or our self-worth or our hopes for the future. The problem is, in the interim, while the sensible part of our brains is “down,” the survival-based part of our brains is flooding our bodies with all sorts of biochemical franticness that both hops us up and dulls us down, that pumps us full of energy, while shutting down the very systems that can regulate the rest of our delicately balanced systems.

So, where does that leave us, if we’ve experienced tons of traumatic stress over the course of our lives? Where does that leave us, if we’ve been stressed and over-taxed and put-upon in very intense ways over a long term? Chances are, it dopes us up with a pretty compelling case of Post-Traumatic Stress Disorder, that modern version of “shell shock” or “combat fatigue” or “nervous exhaustion” that clouds our judgment and heightens our reactivity.

And the more it happens, well, the more it happens. If you get sucked into a cycle of intense trauma response often enough, your reactions become so sensitized that your experience doesn’t need to be extreme to trigger a heightened stress respose. I’m no neuroscientist, and I’m not a formally trained psychologist, but it’s my understanding that if you’re put through enough trauma over the course of your life, your body can get in the habit of switching on those stress hormones at a moment’s notice, just to get you through the day. You don’t even need to be in severe mortal danger, for the action to take effect. It can just look/feel/seem like severe mortal danger to the body, and the mechanisms that prevent disaster will spring into action.

That’s where PTSD really digs in and becomes more persistent, more pronounced, more likely to take over. Which cycles around to exacerbate not only its own instantaneous reactiveness, but also its after-effects. And they aren’t pretty. PTSD’s symptoms can include (in no particular order, and in a bunch of different combinations):

Re-experiencing the traumatic event

• Intrusive, upsetting memories of the event
• Flashbacks (acting or feeling like the event is happening again)
• Nightmares (either of the event or of other frightening things)
• Feelings of intense distress when reminded of the trauma
• Intense physical reactions to reminders of the event (e.g. pounding heart, rapid breathing, nausea, muscle tension, sweating)

Avoidance and emotional numbing

• Avoiding activities, places, thoughts, or feelings that remind you of the trauma
• Inability to remember important aspects of the trauma
• Loss of interest in activities and life in general
• Feeling detached from others and emotionally numb
• Sense of a limited future (you don’t expect to live a normal life span, get married, have a career)

Increased arousal

• Difficulty falling or staying asleep
• Irritability or outbursts of anger
• Difficulty concentrating
• Hypervigilance (on constant “red alert”)
• Feeling jumpy and easily startled

Other common symptoms

• Anger and irritability
• Guilt, shame, or self-blame
• Substance abuse
• Depression and hopelessness
• Suicidal thoughts and feelings
• Feeling alienated and alone
• Feelings of mistrust and betrayal
• Headaches, stomach problems, chest pain

Which can all conspire to make you feel like you’re either losing your mind, or you’re not fit to live in the world, or everyone is out to get you, or you just can’t make it through the day, or all of the above. And more. I’ve had a pretty eventful life, myself, thanks at least in part to the after-effects of multiple traumatic brain injuries, so I’ve got my fair share of trauma in my past. And post-traumatic stress. And full-blown PTSD.

My brain’s biochemical reactivity has, in many cases, worked very much against me. And I freely admit that I haven’t done nearly enough tending of my parasympathetic nervous system to decompress and regain my balance on a regular basis. But where my brain has often worked against me in stressful times, it has also worked for me, thanks to stress. And the things that have worked for me are those handy endogenous opioids I talked about in my last section.

Remember, the biochemical/hormonal stress response in humans doesn’t care what the stimuli are that are freaking out the brain. All it knows is that it’s freaking out, and it needs to supply the right magic cocktail of hormonal juices, so that the taxed system can function adequately in the face of mortal danger. Even in the absence of lions and tigers and bears and horrific natural disasters, in our modern world, endogenous opioids kick in to numb us to our pain, suppress responses that would keep us from fleeing to safety, and keep us bright and alert on some level — and they can save our asses just as much as they did our Grendel-fleeing ancestors’. At least that’s my experience.

And this is not something we can necessarily stop, once it gets started. We are literally hard-wired to have these biochemicals kick into gear when we’re in danger, we’re uber-stressed, and when we’re in pain. Whether the stress is from a charging bear or an angry boss chewing us a new one in a performance review… whether we’re in danger of losing a limb or losing our job (and our house and our car and all the stuff we owe money on)… whether we’re in pain from lacerations to our legs or sleep-deprived, repetitive-stress-fried joint agony… our bodies are still sending signals via stress hormones (our messengers to/from the gods) and our instinctively hard-wired brains are going to get a shot of numbing sweetness that takes our mind off our ills and lets us live to see another day.

And so a heightened stress response becomes a self-fulfilling prophecy, a self-perpetuating loop of spontaneous over-reaction that not only jacks us up, but chills us out, as well. It’s like having an existential smoke — nicotine has the dual effect of first stimulating the system, then chilling it out (which is what makes it more addictive than heroin, I’ve been told). Getting that rush of adrenaline, feeling the mind clear, sensing the body coil and prepare to pounce or flee… and then getting that soothing rush of endorphins… It’s hard to beat that, when it comes to being fully functional.

And it does make me fully functional. In more ways than one. The net result of our inborn neuro-biochemical survival/support system is the heightened ability to respond to immediate threats, reduced pain experience, and clearer, more focused thinking. And when I am in a state of extreme agitation and sensitivity, the effect on me is like the effect of clicking the button on a morphine pump for someone who has recently come out of surgery.

Indeed, I have to say that the same survival mechanisms that let me haul my ass out of mortal danger, also enable me to function at a “normal”level in my day-to-day life. This is probably going to sound crazy to some people, even mentally ill to others, but there’s a logistical reason I find my ass in a sling, time and time again — an inborn, ingrained need, even dependency, on stress hormones to function adequately in the world, and actually feel like a normal person.

Putting myself in the direct line of danger — whether by cultivating friendships with people who are innately hostile towards me, seeking out work with employers whose environment seems custom-tailored to trashing my work-life balance, or taking on too much work at a time when my body is sorely in need of rest and rejuvenation — triggers that magic biochemical cascade of endogenous opioids, and suddenly everything is better. It’s not only BETTER, it’s just better. Normal. Regular. Boring. Standard-issue. Uneventful. Drab. Blah.

This probably sounds odd, but normal, uneventful, rote life is something I really need to work at. Whether due to my head injuries or just my nature, I seem to be hard-wired for excitement. And that tends to get in the way of living my life — especially around other people and when I’m at work. Plus, I have a raft of physical/sensory issues that really get in the way and keep me from getting on with it in a productive and steady way. I don’t need my experience to be over-the-top better, just normal. Just regular. Just standard-issue, run-of-the mill… the way everyone else’s life seems to be, and the way I wish my life were.

And analgesic stress lets me do just that.

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A Perilous Relief – Table of Contents

Basic ideas behind recovery from TBI

I’m working my way through the Give Back Orlando book Teaching Yourself to Prevent Head-Injured Moments by Dr. Larry Schutz, and making mental notes as I go. I’m also highlighting. And I also need to record some of my own impressions here. So far, I really like the book, and it’s a good reminder as well as an eye-opener about dealing with TBI.

In the “whole document” version  of the ebook, on page 1, Dr. Schutz says this (and my comments are in bold):

Here are the basic ideas behind recovery from TBI:

1. Head injuries don’t heal up. The injury continues to cause problems in your life until you recognize that you have to fix it and get it done. Fixing means finding a better way to run your brain. The fix works only as long as you run it in the new way. So fixing your brain is not a job you finish doing—it’s a way of life.

True – my injuries did cause me problems in my life. A lot of problems, as I’ve had a number of TBIs. I’ve fallen down stairs, gotten knocked out by mean kids, gotten hit on the head and fallen, had sports concussions… and let’s not forget the car accidents. Problems I encountered for practically my whole life include:

• sensory problems — painfully hypersensitive hearing, experiencing touch as pain, tactile defensiveness, crappy vestibular abilities, trouble hearing and understanding what people were saying to me
  
• memory problems & learning difficulties
• social problems — hard time deciphering what people were saying to me
• meltdowns and spells of loss of consciousness/bodily control
• trouble holding down jobs
• trouble making and keeping friends
• just trouble

It wasn’t until I started to get my head around the fact that my head injuries had led to these problems — and many more — that I started to feel like I might actually be able to have a decent life and do something about this mess I thought was all my fault.

2. Brain fixes are not obvious. The injury makes your brain send out a signal that you’re doing fine. Those who take this signal at face value don’t realize that the injury messed up their thinking skills, so they don’t learn to fix the problem no matter how many years pass. Survivors only get on top of the problem when they start to recognize that the brain injury is affecting them, and set about finding out what it has done.

Yeah, I’m fine! Or so my brain tells me. This is so true. I have gotten myself into so many tough spots, just because I wasn’t processing the signals properly. I’ve nearly been shot, and I was almost abducted (twice) when I was younger, just because I “boldly” wandered into dangerous territory without guessing things were amiss. I’ve taken on jobs that I had no business doing, and I’ve pushed myself past my limits, over and over and over again, thinking that I was fine and I could take on one more thing. The “one more thing” often pushed me over the edge and ended up frying my system horribly — and sometimes putting others in danger from my meltdowns. But my brain told me I was fine, and I could handle one more big undertaking on 4 hours of sleep!

3. The only good fix for a damaged brain is self-therapy. No doctor or psychologist or therapist, or for that matter, family member or friend or priest or minister or rabbi can fix you, because what is wrong with you is happening inside your head. You are running the programs you created to run your old brain. Those programs don’t work properly on your new brain. Until you learn to re-program the things you do, you’ll go on having head-injured moments, unexpected foul-ups that make your life harder.

It’s good to hear someone say this. I know my neuropsychologist and my therapist would love me to seek as much professional help as I can, and I shall. But there’s only so much someone else can do for me, and they can’t walk around with me, every waking minute, holding my hand, making sure I’m okay. Nor should they. I need to learn to stand on my own feet. Plus, even if I did have someone to assist me at a moment’s notice, they aren’t mind-readers, and they can’t fix what’s wrong — and what only I  know is going on, in there. It’s all happening inside my head, and I usually need to adjust and fix things on a moment’s notice. Trying to explain to another person WTF is going on with me, the context, the texture, the subtleties, is just not practical — or practice-able.

4. Most survivors never figure out how to fix the injury; they go on to have the problems for the rest of their lives. Fixing a head injury is unnatural, and it’s not easy to do. It’s not a common-sense process—if it were, most people would be doing it on their own. It requires watching yourself closely, changing your habits, and developing self-discipline. However, once you set up the new habits, it’s not complicated like rocket science. Once you set up a basic program of self-therapy, recovery begins to grow from there. Your recovery gains momentum, becomes more real to you, and feels more rewarding, the more you work your program.

How true, how true! The one “fix” I’ve found for my own issues, is constant vigilance and developing the habit of paying attention to my thought processes — and my actions. It’s not a natural thing to do, and it’s not easy. But it has to be done. Or else. The good thing is, once I got in the habit of paying attention to those things that were causing me problems, and adjusting as I went, it did become habitual. And my recovery has gained momentum.

5. Most people are accustomed to looking to their doctors to fix them when the problem is an illness or an injury. That is not likely to be a good strategy when it comes to TBI. Doctors receive no training on how to fix this injury, even if they specialized in neurology, psychiatry, or rehabilitation. In the United States, only a handful of doctors and other professionals are experts on how to fix TBI. You probably don’t have any in your home town. Your best bet is to learn how to do the fix yourself, and to get your family to help.

It’s a good thing I’ve never been that dependent on doctors. I guess my long history of TBI contrived to make me too ornery and too spacey and non-compliant, to be a good patient. Which is ironically what has saved my ass, up to a couple of years ago.

But ’round about 2007, I started down this diagnostic path, and I started to really dig into the whole medical thing with TBI and other medical issues I’ve been having. I got it in my head that I needed to give doctors what they needed to help me. But they haven’t had the willingness (the training?) to be of much help to me. Mostly, what I’ve heard from them has been “It’s just stress” or “It’s psychological” or (they don’t say this, but they imply it and their actions say it loud and clear) “You’re just trying to get attention, when there’s really nothing wrong with you.” Maddening. And my little brain has ingested that input and made my failure to get adequate medical help about me, rather than about the shortcomings of the medical system and typical medical training.

I may rail and rant about the problems with doctors, but there’s a part of me that thinks the real problem is me. I’m a bad patient. I’m a head-case. I’m not really in need of help. There are many other people who have real problems, and I need to get out of the way for them to get the help they need.

Unfortunately, after dealing with doctors for the past year and a half, I’ve gotten it into my head that being a bad patient makes me a bad person, that I’m not being helpful enough, that I’m not being “good”. But I have to seriously rethink this. And I have to say that, given my ability to recover and get on with my life, it actually saved me a whole lot of pain and suffering, to avoid the medical establishment, to not expect much from doctors and avoid them like the plague (except when absolutely necessary), and to find my own way in the world.

So far, it’s enabled me to just live my life. Which is more than I can say for how I’ve been feeling (and functioning) for the past year and a half.

6. You should not believe what anyone tells you about TBI. It has become a hot topic lately, so there are now many Web sites distributing partially accurate or even totally bogus information. Everyone claims to be an expert. If you have good sense, you won’t take what I say on faith, either. There are only a few reasonable ways to put confidence in what people tell you. The first one is the approval of professional credentialing organizations. <snip for brevity’s sake> These are major league accrediting bodies in TBI. However, there are also bogus accrediting bodies, so when you check out credentials, you also need to check out the accrediting agencies. Information is also likely to be more reliable if it has been published in a major professional journal. This manual provides you with a set of articles, chapters, and books that are expert sources for the information presented. Watch for the most important journals, such as the Journal of Head Trauma Rehabilitation and Brain Injury. Getting bad advice is awfully easy to do, and it can harm your recovery.

I’ll say! I’m starting to see more and more how lucky I am that I’ve been able to build my recovery outside of the medical/rehab context. Granted, it may have been helpful for me to realize that I had serious issues going on with me as a direct result of head injuries, but I think that not growing up with the idea that I was brain damaged did me a whole lot of good. Even though my brain was telling me everything was okay, when it wasn’t, the fact that I have grown up and moved through my adulthood with this blissfully ignorant self-confidence of mine, has worked in my favor. I haven’t been in the unfortunate position of soliciting information from charlatans and snake oil salesmen. I haven’t made myself dependent on “experts” for my strategies. I’ve been a lone wolf, for the most part, and while things have NOT been easy, I’m sure they’ve been a whole lot less hard, than if I’d been seeking out help on my own resources.

One of the big problems with TBI that I see, is that it makes it all the harder for us to seek out qualified expert help. It makes it hard for us to see what our problems are, in the first place. In order to ask for help, you need to know what exactly the problem is. That’s one of the problems with TBI and the medical establishment, from where I’m sitting — they rely on us telling them what the problem is, but if you are a TBI survivor, you may not even know what the problem is. Conundrum! So you and your doctor end up sitting there looking at each other like idiots, not sure where to begin, or even how to begin.

That’s been my experience, anyway.

So, the next problem that comes up, is that there are these charlatans and poseurs who claim to know WTF is going on with you and how to fix it. They prey on us, telling us what we want to hear, offering us what we so desperately need — “answers” of some kind about what’s going on inside our brains. They give us false hope, and/or they point us in some bogus direction, and/or they take our money, and/or they misrepresent us to insurance companies, so we can’t get coverage or additional help. And we’re screwed. Because we need help, but we don’t know how to get it. And the people who offer us the most are the ones who have the least to offer — and in fact, take away the most.

Like I said, conundrum!

7. You can get rehabilitation for TBI in almost any town in the USA, but most of it is not fully specialized. We have had effective rehabilitation in this country since 1978, and the knowledge of how to do it has spread slowly. I trained under one of designers of the original high-tech program. That approach is still the most effective method we have. If you have the $70,000, you should consider attending that program. It is located at New York University’s Rusk Institute of Rehabilitation Medicine, under the field’s founder, Dr. Yehuda Ben-Yishay. Expert programs are also offered at Barrow Neurologic Institute in Phoenix, Arizona, under Dr. George Prigatano, Robert Wood Johnson Rehabilitation Institute in Edison, New Jersey (where I trained), under Dr. Keith Cicerone, or Mount Sinai Hospital in New York, under Dr. Wayne Gordon.

This just blows my mind — as though it needs to be blown any more. We all have brains. Thousands upon thousands of people suffer brain injury each year. There are ways to fix what’s wrong. But yet, we can’t get easy access to this rehab, unless we have $70,000 and/or insurance that will cover it. Good grief. It’s so crazy and distressing, I can’t even comment on it further.

8. People who find a knowledgeable self-therapy teacher don’t always learn self-therapy. Many of them are not willing to learn. To learn self-therapy, you need to admit that you don’t know everything you need to know about your brain. Some people believe they already know themselves and reject the idea that someone else can teach them about themselves. If you believe this, self-therapy will not work for you. This guide book can help you only if you are open to learning things about yourself that you don’t already know.

Well, I am open to learning new things about myself. I am more than willing to learn. I have over 35 years of evidence that all is not right with me, and I need to make some changes. I’m not proud in this respect. I’m borderline desperate. Which makes me a pretty good candidate for this kind of work. Self-therapy is, as far as I’m concerned, just about the only viable alternative for me at this point, and I’m willing to do what needs to be done. Yes, I’ll seek out help from qualified therapists. Yes, I’ll get help from neuropsychologists. Yes, I’ll do everything I can to avail myself of the resources available to me. But at some level, I’ve got to do the work myself to fix myself. No, I’m not crazy for thinking this stuff can be fixed. It can. People do it. It’s been done. Why not me?

Indeed, why not me? I’m brain-injured, I’m in more trouble than I care to admit, I get into trouble constantly, I have plenty of head-injured moments through the course of each week, and I’m more than willing to do what needs to be done to address the situation. Most importantly, I am not prepared to live my life marginally, missing out on all the opportunities out there to learn and live and experience.

I am not prepared to be anything less than fully functional as a living, breathing, involved human being.

So, it’s time to kick it into gear and get on with the work.

Onward…

90% of the people who have head injuries don’t get brain rehabilitation

I’m working my way (slowly but surely) through Give Back Orlando’s ebook Self-Therapy for Head Injury: Teaching Yourself to Prevent Head-Injured Momentsby Dr. Larry Schutz.

What a great book this is!  Dr. Schutz has been studying neuropsychology and brain rehabilitation since the early 80’s, and he’s collected a lot of information in this book, which can be downloaded for free in parts or in its entirety here.

From the book:

Brain rehabilitation has always been done in a hospital, clinic, or professional office, never as self-help. However, over 90% of the people who have these injuries don’t get brain rehabilitation, and over 99.9% do not get the advanced methods that have proven to work best. Since I have been teaching patients how to fix their own injuries in my programs for many years, I saw no reason why the methods couldn’t be put into a book–this book–and used on a selfhelp basis. I wrote this book in 2003-2004, putting into it every technique I regularly used for TBI patients.

Lucky for us. I’ve only gotten a chapter or two into it… and now I need to back up and review it, so I can take a highlighter to the parts that apply to me.

I highly recommend this ebook. At least, so far, I do. If I get to a point where I stop recommending it, I’ll let you know.

Give Back Orlando Rocks!!!

I’m a big fan of Give Back Orlando’s great TBI Self-Therapy Information.

They have a great collection of info at their site, including;

Self-Therapy for Head Injury: Teaching Yourself to Prevent Head-Injured Moments
– Head-Injured Moment Analysis Form
– Day Planner Form
– Treatment Plan Form

Helping Your Family Member To Recover From A Head Injury

Head Injury Recovery in Real Life

What Makes it So Hard to Get Expert Head Injury Treatment

A Fairly Simple Introduction to How the Brain Works
Written for Survivors of Head Injuries and Their Families

Models of Exceptional Adaptation in Recovery After Traumatic Brian Injury: A Case Study

Evaluation of Cognitive Rehabilitation as a Treatment Paradigm

Successful Educational Re-Entry After Severe Traumatic Brain Injury: The Contribution of Cognitive Compensation Strategies

And other Recommended Reading Material

The best thing is, they are folks who know what this is like, what it’s about, and they have figured out how to deal with it effectively.

Check it out – it’s well worth the visit!

Picking and choosing and trimming the fat

I’ve been taking a long, hard look at how I’ve been living my life for the past 20 years. I suppose that’s to be expected, as I have a birthday coming up, and I’m in a living situation that needs some work. My marriage is good. It’s great, in fact. In spite of everything, we’re still going strong, and the relationship continues to evolve and grow and change and stretch and do whatever it has to do, to keep going. Because, well, we love each other. We’re really well-suited for one another. And we both realize just how vital each is to our individual and mutual well-being.

To do anything less than tend to this relationship and keep it going, no matter what, would be self-destructive. And neither of us – head injuries or no – is that.

But in a number of areas of my life, I need some real work. I have indulged an awful lot of fantasies and schemes over the course of the past two decades, some of which have been mildly disrupting, others of which have completely derailed my progress. I have started – and abandoned – countless little projects, sketching them out and scoping them and putting all the plans in place to make it happen… only to lose focus, lose interest, and end up wandering away to do something else.  And all my hours of planning and thinking and BIG IDEAS just went to waste.

The wild thing is, I just didn’t care, when I let them go. I found that I had almost no investment in actually following through with them. It was the busy-ness that appealed to me. The process of imagining. The activity of dreaming, not taking action, that really moved me. And when I got to the point where it was time to actually do something… well, then I just lost my mojo.

Which is fine, if you just want to twiddle away your life, spinning your wheels and passing the time. It’s fine, if you’re either independently wealthy with a trust fund that’s hermetically sealed and shielded from market conditions, or you’re not particularly invested in keeping a house and home and lifestyle running. If you’re either extremely wealthy or materially indifferent, you can spend your life just jumping from one Big Thing to the next.

But I’m not in that situation. And every day, it hits home a little harder, how much my bad habits of “recreational busy-ness” have cost me. They cost me every day, in fact, in terms of lost focus, lost productivity, lost effectiveness. These aren’t just corporate-speak weasel-words. These are real things. I haven’t been able to complete tasks I’ve promised I’d do. I haven’t been able to finish jobs in the timeframe I said I would. I haven’t even been able to concentrate on things long enough (in advance) to figure out exactly how long they will take will take me to complete. For someone in my kind of job, doing my kind of work, on my kind of team, this is a bad thing.

And it needs to get fixed.

You see, I like my job, and I want to keep it. I need to figure out how to settle in and do the work, already. Quit being so danged fancy-pants and focus on the basics. The fundamentals. The boring-ass stuff that requires a great deal of concentration and focus, but that has to get done. I need to figure out how to just do it.

This has been sorta kinda nagging in the back of my mind for weeks, now. But I’ve managed to just kind of gloss over it. Things at work have been really disorienting, and that has been emotionally draining for me. I get it in my head that this is my One Chance, my One Shot to Make It, and I get fixated on the idea that if I screw this situation up, I’ll be out of work permanently. That crazy-ass one-sided thinking picks up speed very quickly, and before you know it, I’ve convinced myself that one more screw-up is going to land me back on the streets, I’ll lose everything, including my marriage, and I won’t be able to even open a bank account. When my head gets going like that, it’s not a pretty thing. But I go there so quickly…

The thing is, that thought process really keeps me from just doing what I need to do — focus in and get the job done. It keeps me focused on details — and implausible ones, at that — and it swamps me in minutiae that are not only distracting but extraneous and not central to my core issues.

So, what are my core issues?

After watching myself pretty closely for the past year and a half, I have to say that the biggest problem I have, that affects me all across the board is… (drum roll please…)

Fatigue+Distracting Busy-ness+Fatigue+Distracting Busy-ness

You see, when I get tired, I tend to get agitated. When I get agitated, I tend to want to do something. Anything. Just something to get my restless mind off my agitation and mounting anxiety. And so, I find something “important” to do — like a new project or some ground-breaking discovery — and I launch into that with all my might.

Thing is, I get so swamped in details that my brain starts getting turned around, and I start to fixate on the wrong things. I get consumed by minor aspects of a project, get pulled off on associational tangents, and my thoughts spin out in all directions, picking up speed, the more overwhelmed they get and the more agitated and restless and anxious they get.

It’s really something to watch, objectively speaking.

Subjectively speaking, it’s a wretched downward spiral into the breaking-point zone of my cognitive behavioral swampland.

The more tired I get, the less well I can think. The less well I can think, the more keyed up I get. The more keyed up I get, the more frantic I become, and the busier I get, and the less that actually gets done.

At the time it’s all happening, it seems like I’m just cooking along, making good progress. But I’m not making progress at all — quite the opposite. And eventually I melt down in a shaking, sputtering pile of profanity-spewing wreckage.

So much for my pet projects, my “cutting edge” concepts, my pioneering initiatives.

That all being said, now I’m taking a close look at what I’m really working on, these days. I’m removing a whole lot from my plate — and I’m seeing how many new projects I’ve started, just in the past six months. I also see how little I’ve actually finished in the past year. This is depressing me, as some of those projects are near and dear to my heart. Two of them, in fact, I am still very excited about. And there are a few others that are close behind. I need to finish them. I have needed to finish them for months, now. But it didn’t get done.

What’s more, there are things I need to do for work that haven’t been done properly. Not yet. It’s really bad. My job is to produce, and I all that I have been producing has been promises. My job is to deliver, and that’s been lagging.

Granted, life happens, and there have been a number of things that have kept me busy outside of my various projects. But this is just getting to be ridiculous. Something must be done.

So, I’m doing something about it.

1. I’m working through all the different things I’ve got going on — personal and professional — and I’m getting more disciplined about them.
2. I’m making sure that I’m only working on things that actually serve a long-term purpose, like sharpening key job skills, or teaching me new ones.
3. I’m making lists of the things I’m working on and figuring out where they fit. And if they fit.
4. I’m pitching out the things I started on a whim — as an effort to do nothing more than soothe my jangled nerves.
5. For the things that fit, I’m coming up with some new tools — since I’m a software engineer, I’m engineering my own tools — and I’m designing/building a truly good-looking project management program that I can use without pain (the standard-issue ones are so visually unappealing, they actually make it hard to use them).
6. I’m consolidating what projects I can, and I’m prioritizing them according to:

• how much I want/need/have to do them
• how long they’ll take to get done
• when I originally wanted them to be done
• when they are required to be done
• which ones will totally screw me up, if I don’t do them
• etc.

There’s more, but I need to get on with my day and do some of this stuff, instead of thinking about it all the time.

One thing is certain, I cannot continue to work as I have been — willy-nilly floating from one thing to another. I need to dig in and finish one thing before I start another. I can’t just keep starting new projects as “stress-management” techniques. If I need to burn some energy and work off steam, then I need to exercise, rather than doing more strategizing. If I need to take a break from one thing I’m doing, then I need to take a break from that kind of activity, not that specific activity.

Where I tend to fall down is, I “take a break” in ways that are not breaks at all — rather than resting to let my brain catch up, I drive it harder to get the stress hormones pumping that take the edge of my cognitive discomfort. I tend to push myself even harder, rather than letting up, and my broken brain thinks everything is just fine — simply because I can’t feel the pain anymore.

But it’s not fine. It’s anything but. I’m distracting myself, not restoring myself. I’m adding to my cognitive load, not lightening it. And ultimately, I get overwhelmed. Again. And it’s back to the drawing board… again… with even less self-confidence and self-esteem than before.

So, there it is. Time to prune back. Time to restore focus. Time to get my scattered brain together and make some real progress.

Any time I devote to activities should be an investment, not an expense. I just can’t afford — literally and figuratively — to waste my precious life force, anymore.

The adventure continues

Spent the day yesterday recuperating from my meltdown a few nights before. Sick, blazing headache… nausea… feeling wiped out and down and depressed. I took the day off work, tho’, which helped. And I’m taking another day off, today. It’s just not worth my health and my sanity and my family life, to drive myself for no good reason. I’ve been putting in extra hours, anyway, so it’s not like I haven’t put in any billable time.

I’m due for a break, which I’m finally giving myself.

I have been sleeping, on and off, more frequently, over the past few days. Just lying down for a quick nap — half an hour, 45 minutes… a hour or so — and then getting up to get on with it. I’m pretty happy about this, because despite my best efforts, I haven’t been able to really get the sleep I’ve been needing to, over the past months. Ever since I made a firm commitment to getting more sleep, I’ve actually been getting less. And that’s a problem. Because when I don’t sleep, bad things happen. Almost like clockwork. I’m so predictable, it’s quite boring.

But over the past few days, I’ve gotten more sleep. And I am slowly but surely finding out what works for me, with regard to timing out my naps. Ironically (and totally surprisingly to me – tho’ I’ not sure why it surprises me), I do better getting more sleep when I’m not on rigid schedule. When I’m going with the flow. When I’m relaxed and not driving myself.

Like I said, I’m not sure why this suprises me, but it does.

I have had it in my head that I need to follow a strict schedule in my daily routine… that I need to schedule everything out and stick to my timetable, in order to be effective and get everything done. I’ve had it in my head that I need to do things a specific way, in order to catch up on my sleep. When I’m working in the city, I need to get up at such-and-such a time, work such-and-such hours, and then come home and go to bed at such-and-such a time. When I’m working from home, I should work from such-and-such a time in the a.m., then eat lunch, then lie down for a nap, and then get up and get back to work. And on the weekends, I should do this, that, the other thing… nap… do this, that, the other thing, and go to bed.

But as appealing as the idea of a cleanly regimented schedule may be, this is not working out for me. Yes, I do need to get certain things done each day. And yes, I do need to catch up on my sleep. But trying to stick with a specific schedule is getting to be draining and problematic, and I need to find a better way.

I need to find more flow. I need to be cool with adventure.

I mean, let’s be honest — life doesn’t go on forever, and when all is said and done, do I want to look back and pride myself in having kept to a set routine, having been “productive” in popularly acceptable ways, having made x-amount of money, and having been the most reliable neighbor on the block? Or do I want something else?

It’s true — TBI has totally mucked with my processing. It’s scrambled things  and diminished capabilities that I’m convinced I should be able to take for granted. It’s made me wilder, less tame, less easy to control, less compliant, less able to keep focused on specific set tasks for extended periods of time, and it’s made me different from how I was used to being.

But the changes aren’t all bad. And in fact, I’m starting to realize that the changes I’ve experienced are actually of a certain type that I can identify and deal with. And even though I have had setbacks in certain areas, my brain has actually re-wired itself to use other areas… and my strengths in those areas have increased, at the same time the old, familiar capabilities have decreased.

Fortuitously, I’ve come across an increasing amount of literature about thinking and learning styles that really seems to apply to me. And it’s given me pause to reconsider what’s really going on with this brain o’ mine.

Here’s the latest conclusion I’ve reached: In the course of my TBI’s, I have been diminished in my sequential-linear processing abilities, but I have improved my visual-spatial processing abilities. The head injuries that I’ve sustained have wreaked havoc with my standard-issue brain, but — perhaps due to a temporo-limbic abundance of energy — the rest of my brain has hungered to keep up, to live, to experience, to have adventures, to learn and grow and understand and take in every piece of life I can get my hands on. And that hunger, that eagerness, that life-force has propelled me forward in developing additional skills and abilities that I didn’t need to have or use before my TBIs.

Now, I’m not saying that my TBIs were “the best thing that ever happened to me.” No way, no how. It’s been a long, hard road, and I wouldn’t wish it on anyone. But in the midst of the wreckage, there have been some prizes along the way. There have  been treasures buried in the twisted, burned-out leftovers of the veritable train wrecks of my life. And identifying them and pulling them out has been my secondary mission in life — second only to getting by.

Thinking about the way my mind has worked over the course of my life, I can totally see how my brain has become more and more visual-spatial over time. I have some theories about how this has come to be, which came to me over the past few days, while I was “off”. I’ll be sharing them soon.* But the bottom line is, my brain has become more visual-spatial and less sequential-linear over time, and that has caused me to become less and less adept at keeping to rigid time schedules and doing things sequentially. It’s made it harder for me to break certain things down into small pieces and follow them through, bit by bit. I can do it — indeed, I do do it for a living, as a software engineer. But I have to work at it, and it’s not my “default setting” in living my life.

Still there’s something in my head that tells me, I need to live my life like that. I get it in my head that that’s how I should be (perhaps because everyone else is that way, and it’s how our society is structured), and I work like the dickens to make myself that way. And I lose sight of the fact that maybe I don’t need to be so rigid about everything.  Maybe it’s okay for me to be a little more loosey-goosey… But then I get anxious and freaked out and start to panic… My thinking gets all turned around and I can’t process my way out of a wet paper bag.

I think one of the biggest things that makes TBI problematic for me is that anxiety-based rigidity of thinking that leads to reduced fluidity. It keeps me from being able to think well and/or adequately address my life issues and challenges in a creative and productive way. I get so turned around, at times, I can’t tell which end is up, andI can’t figure out where I went wrong. I try to think it through, front to back, left to right, up and down… and I fail. I end up in a cognitive cul-de-sac, spinning ’round and ’round and going nowhere, thinking that I’m in one conceptual neighborhood, when I’m really in another… getting all disoriented by the numbers on the mailboxes that are not in the range I was expecting… never suspecting that my thinking just took a wrong turn, three blocks back.

And then I start to panic. Get worked up. Can’t think straight. And I start to melt down. I get carried down the path of panic/anxiety freakout, trying in vain to stop the slide, trying to think my way out of things… and failing…  When all along, the whole problem is trying to think my way out of things — I easily get  to a meltdown state with a fundamentally flawed assumption — that things needed to be done in a certain way, or else.

If that makes any sense.

Anyway, slowly but surely things are starting to come together, in some respects. Making the visual-spatial connection has been a huge watershed for me, this week, and I truly think it’s going to make a difference for me in my life.

So long as I don’t panic.

——————————–

* While they don’t have double-blind controlled scientific testing behind them — they totally make sense to me. And they’re multi-disciplinary and wholistic, rather than being teeny-weeny little specifics that have been observed in hermeticaly controlled circumstances. They’ve  been observed and proven out in my life, which makes them a whole lot more interesting to me, than proper “science” (which, as far as I’m concerned, doesn’t exist, in today’s commercial cultural climate).

It’s been a rough 24 hours

My fatigue and stress levels are catching up with me. And it doesn’t help that I have been on prednisone for the past week, to bring down inflammation that was kicking the crap out of me for a while.

Yesterday, I thought I was having a pretty good day. The weather wasn’t as great as I’d hoped, so I wasn’t able to get out and about like I’d hoped I would. And I didn’t get a bunch of stuff done that I had planned. I had something of an outline for my day, and I really didn’t get as much of it done as I’d hoped.

So, big deal, right? Well, actually it was. I had a TFM — Total Friggin’ Meltdown — last night, that started around 7:00 and lasted till midnight. Not good.

I have been so tired, so stressed, so agitated and nervous about my work situation and my impaired work-life balance and trying to find my footing with my new job and new schedule, trying to figure out how to pay for the commute and lunch and the rest of my life… Routine is about the only thing that keeps me sane. It may sound boring, but routine lets me operate at a very high capacity, and it lets me get through my days without having to think and re-think everything I do.

I have a tremendous amount of energy, which is great. It lets me accomplish huge amounts of work, without frying my system. But when I can’t direct that energy appropriately, when I get jammed up and stopped up, when I can’t “get my head” and get free rein, then I start to implode.

That’s what happened last night. I was supposed to do a bunch of things with a family member who has been feeling poorly, lately. We were supposed to go out and run errands and get some stuff done. We could have, too, except that my family member wanted me to take their sweet old time and just enjoy each moment, instead of getting things out of the way, and then relaxing. They wanted to amble and ramble and not rush… to just savor each moment and enjoy the springtime, chat with people, look around, just enjoy the time we had together.

I wanted to, too. I started out wanting to, with a really positive attitude. Thing is — it occurred to me at the time, but I dismissed the thought, and now I realize how right I was — I got completely overloaded with the sensory input and there was literally too much information coming in for me to process. The spring weather, changeable as it was… the sights, the sounds, the movement in town… the sunlight that was brighter than I’d expected (I left my sunglasses in the car)… the tastes of the food we ate… the words of the people we talked with… the total sensory input all proved to be too much for me.

I tried to shake it off and chill. I went for a little walk by myself to calm myself down. But I was really tired and wasn’t thinking well, and the walk wasn’t as relaxing as I was hoping it would be. When I got back to my family member, they wanted to go home right away because they were starting to feel bad again… then they wanted to stop off and do some more quick errands… then they wanted to get a DVD… then they wanted to take another detour… all the while, I was thinking they needed to go home to rest, because they were feeling sick, and I didn’t want them to feel any worse than they already did.

I was tired, myself, and I was trying to keep it together, but all of a sudden, it all bubbled up and blew up.

I just snapped. Yelled. Really yelled. Raged. Flipped out. Threw things. Accidentally hit them with what I threw, too, when I was trying to miss. I took off in the car too fast and I wasn’t driving very intelligently. Then I pulled over and said I would just walk home – they could have the car, they could have everything. I didn’t care. I was just beside myself with overwhelm and confusion and frustration and sensory overload. The whole time, there was this part of me watching from a distance, wondering what the hell I was getting so worked up over, and why was I being so extreme? Didn’t I know this family member wasn’t feeling well, to begin with? And here I was, flipping out on them… over what?

The whole danged episode lasted through most of the evening. And it left me feeling like crap. Without getting mired in the details, it pointed out pretty clearly that I need to watch my energy, I need to keep up on my sleep, and I need to make extra efforts to take care of myself, especially when I’m taking care of others. I need to wear my sunglasses when I’m out and about in the sunlight. I need to take frequent breaks when I’m walking around in town. I need to keep to something of a routine and make sure I do at least some of the things I feel I have to get done — or come up with an alternative plan. I need to step away, and take a break to calm down, too, when I start to get out of control. I need to do better at this, for sure.

Lessons learned. I only wish I’d gotten a clue earlier.

Using my physical memory

I have been working on a new technique for remembering hard-to-recall things that I have to do. I’m notorious for completely spacing out on stuff that I can’t afford to forget. People tell me that your memory gets worse as you age, but I’ve been this way since my 20’s, and I noticed a real dip in my ability to remember important things after my fall in 2004.

Over time, and after many harrowing experiences of remembering that I’ve forgotten important things (like mailing out bill payments on time, taking the lunch I made and packed the night before when I went off to work, and my wallet, cell phone, and/or keys), I’ve developed a technique for remembering important things I can’t afford to forget.

Basically, where my brain falls down, I let my body fill in. I actually use “physical memory” to keep myself on track, by deliberately having an “advance memory experience” in advance. I use my imagination to experience the act of remembering before the time when I’m  supposed to remember. And I rely heavily on my use of daily routine to cement this technique in place.

Here’s how it works:

Say I must remember to mail out my mother’s birthday card the next morning. I have forgotten to send her a card for the past three years in a row, and I can’t afford to miss another year.

This year, I have actually remembered her birthtday, and I have her card signed and addressed and stamped and lying on the kitchen counter in plain view, waiting for me to mail it out in the morning.

Now, I know for a fact that having something in plain view is no guarantee that I’ll actually see it. I might get busy the next day and overlook it.  Should I put it in my daily minder, so I see it when I work through my schedule the following day? Not necessarily. Many days can pass me by without my ever cracking my daily minder. I have to have the card out where I can see it, so I can put it in the mailbox on my way to work.

In order to remember to pick up the card and take it with me, the night before, I envision myself getting ready for work and remembering to get her card. I see myself going through my regular routine — putting my supplies together in my knapsack (laptop, daily minder, phone, wallet, etc), and putting on my coat.

As I see myself doing this, I imagine what it’s like to do all this. I don’t just imagine what it looks like, I imagine how it feels. I actually feel the experience ahead of time — I imagine the feel of my bag in my hand, the heaviness of it, the weight of my coat on my shoulders, and how I always have to shrug my shoulders a few times to set my coat right. I experience myself thinking through all the stuff I need to take with me, and I imagine myself checking the contents of my knapsack, as I always do each morning.

As I’m “experiencing” myself doing this, I imagine myself remembering, “Oh – Mom’s card!” I see and feel myself remembering to get the card from the counter and put it in plain view to take with me. I imagine myself flooded with a sense of relief that I’ve remembered to get it, as I get the card from the counter and put it beside my bag, then pick it up and carry it out the door with me. And I see and feel myself walking out to the street, putting it in the mailbox, and then going back to my car to drive to work.

As a back-up, in case I don’t follow the same old routine I usually do, or I’m rushed and don’t get the chance to collect myself, or I don’t wear my coat, I imagine myself unlocking the door as I head out to my car to go to work. I imagine the feel of my hand on the lock, and on the doorknob, and as I feel myself turning the doorknob, I see and feel myself remembering — Mom’s Card! I feel the rush of relief that I get when I remember something I don’t dare forget. And I feel that sense of gratitude for what memory I do have.

This generally works with me. I usually have at least one back-up “advance experiences” that I go through ahead of time. I try to supply as much physical experience as I can think of — the feel of my clothing, the weight of my bag, etc — so that I have “sensory hooks” to anchor the things I am trying to remember.

Basically, I set up the experience I want to have before I have it. And it’s the experience of remembering what I almost forgot, that’s important to me. It’s a very emotionally laden experience, remembering something at the last minute, and it always makes a strong impact. So, by having that experience in advance and planning/expecting to have the experience of remembering, and using my body’s sensations to “anchor” the experience before I have it, I’m able to boost my brain’s capacity with my body’s abilities.

Try it sometime – it might work for you, too.

The fall of the spider monkey

I actually didn’t get to see my diagnostic neuropsych yesterday. They had a family medical emergency to deal with in the p.m., so our session got pushed off a bit.

It’s a bummer, too, because I could have really used a sympathetic ear. It’s not like I want someone to sit around and pity my — that’s about the worst thing ever. But I could use an hour or two with someone who actually understands that I’ve got issues and is focused on me dealing with them in a constructive manner.

The new neuropsych therapist I’m seeing has been very helpful to me already. They’ve helped talk some sense into me and helped me deal with some logistics in my life. But they seem to be into “tough love” — urging me forward with my life to do the things I need to do in order to be a viable individual, and not cutting me a lot of slack in the process.

It’s really a change from my last therapist, who was into helping me “get in touch with my feelings.” They were really into my emotional well-being and talking about things that had happened to me in the past, and how I felt about it all was a big part of each session. It was also completely new for me to be having those kinds of conversations with another person. What I feel and how I experience emotions is something that’s always been reserved for the inside of my head and heart. I don’t wear my heart on my sleeve, and I have no interest in doing that. So, having those kinds of “how does that make you feel?” conversations with another human being was new and different for me.

And as much as I balked at it — at first, and continually over the past year or so (including today) — I kind of got used to it.

So, now it’s going away, as my “touchy feely” therapist (God love ’em!) is retiring. And my new neuropsych therapist (I’ll call them NT, versus ND, for “Neuropsychological Diagnostician” who’s done the testing with me) is completely different.

NT is way into logistics (from what I can tell), making sure I’m staying on track with my job and my marriage and my daily responsibilities and doing all the things that normal regular people do in their lives, MTBI or no. They’re part coach, part sounding board, and they don’t actually seem that comfortable talking about emotional stuff. Or maybe they’re holding back to see where my tender spots are, so they don’t push me too hard and push me over the edge.

When I first met with them, being nervous and apprehensive and anxious about starting therapy with a new person, I was on the verge of tears a few times, which I absolutely hate. I get nervous and angry with myself and feel so self-conscious that I get all teary and choked up. It’s not that I’m sad or emotionally distraught — that’s how my frustration comes out at times. How annoying…  It’s hard to have an adult discussion and feel like people are taking you seriously when you’re fighting off tears over every little thing. But that ‘s exactly what happened, the first couple of sessions I had with them.

So, maybe they think I’m really fragile and they need to handle me with kid gloves for the time being. Or maybe they think I’m unstable.

I did give them a list of my head injuries over the course of my life, so I’m sure they’re factoring that in, somehow. I get the feeling, sometimes, that they’re trying to see if I’m dangerous and prone to act out. That’s got to factor in, somewhere. I think I have told them I have a history of violent temper, and it’s only the two of us in that office, so there they are with me, being ginger and diplomatic and testing the waters.  Am I a caged animal? Am I just looking for a reason to act out? Am I a threat to myself and/or others? They may be wondering… watching… looking for a hint of threat from me.

Anyway, this starting period with NT is tricky. And it’s getting on my nerves a little bit. I want to be able to pick up where I left off with FT (“first therapist”) and just be myself and speak freely. But I have to remember NT is a new person, they don’t know me, they need to get their bearings. And I also have to remember that my sessions with FT were like this for over six months before they started to loosen up with me. And there were times when I did feel like I scared FT a little bit, so NT probably just has to get to know me, before our sessions really get some traction and we start talking about what’s going on inside me.

It’s going to take some time. I know that. NT does neuropsych testing for kids, so they must see kids coming in all the time who have real problems, and I’m not sure how many neurologically impacted adults they see in their adult counseling practice. It could be that they don’t see many at all. The thing is, I’m starting to feel like they are really very skeptical about how my head injuries have impacted me over the course of my life. It’s almost like they don’t believe me. Or they think I’m lying. Or they think I’m trying to tap the system for help from some state head injury program or get disability or somesuch.

Granted, there are a lot of people who do take advantage of the system. They do take advantage of the government and government programs. I have a sibling who does that — they’re highly educated, as is their spouse — and they have all the advantages in the world, yet neither they nor their spouse will work full-time, and they tap into government funds for help raising their kids. This is just so odious to me, I cannot even begin to say. With all the gifts and the privileges and advantages they have, they throw it all away — and their kids have been harmed by their choices. And if there were any way I could change that, I would. But they take their entitlement to the lowest extreme possible, and no one is served — least of all, them.

But that’ s not how I am. I have walked out of bad living situations in the past and have chosen to walk the center city streets of one of the country’s largest and meanest cities, looking for a doorway to sleep in, rather than seek help from a shelter or go find some agency to help me. That’s just how I’m built — I do for myself, or I don’t do at all. And when I talk about my problems and try to identify my issues, it’s not so that I can suck the scant resources from an already over-taxed social system. It’s so that I can come to terms with it all and get on with my own life.

I guess I just need to make that clear to NT. When I talk about the difficulties I’m having, they keep telling me things that make me think they don’t consider my losses to have been that great. Or they don’t think I have that many problems. They talk about how other people have trouble with memory… other people have trouble with physical pain… other people have trouble with understanding what people are saying to them… other people have trouble with sustained attention… Everything I talk about that is difficult for me to accept, that wasn’t there before my injuries but showed up afterwards… Everything I mention that I’m having trouble with, that I didn’t used to have trouble with… Everything that’s getting in my way, behind the scenes… Well, from what I hear NT telling me, that’s just life.

As though my problems aren’t really that extreme. Or debilitating. Or difficult to overcome. Maybe I’m making it all look too easy… Maybe I’m not being forthcoming enough about my issues and putting them in the right light. I’m not sure how to do that, though, because it’s incredibly difficult for me to actually talk about these things, to begin with. I don’t want to be afraid. I don’t want to be upset. I don’t want to be turned around and lost and have a hair-trigger temper. I don’t want this stuff to be in my life to the extent that it is, and it’s really embarrassing for me to even mention it aloud. It’s not normal for me. And it’s not acceptable for me. But when I talk about it, NT acts like it’s no big deal. Or that I should be content with what I have and not worry so much about what I’ve lost — if I’ve really lost anything at all.

It’s frustrating. And it’s why I wanted to see ND yesterday. Because the big point that ND made with me from the start, is that the injuries I’ve sustained have caused certain significant losses relative to me. Not relative to the rest of the world, which apparently often operates on a different scale than me. Relative to me and my abilities and my skills and my capabilities. My own baseline is higher than average. I have a lot of abilities that are well above average. I have God-given talents and skills and abilities that are measurably high-end (and here I always thought I was a total idiot!). But in the course of my life, getting hit on the head, falling, getting into car accidents, etc. have cut into my ability to make the most of those abilities. Sometimes,  they’ve stopped me cold. And unfortunately, my injuries have often happened at very critical times of my life, when I was about to move forward — or I could not afford, in any way, shape or form, to sustain a TBI, even an MTBI. So, the timing of them, coupled with the subtle (and unaddressed) impact of them, combined in some karmic double-whammy that knocked me out of the running, just when I was about to jump forward in my life.

I look back on my life and I see all the potential I once had. I see all the joy, all the excitement, all the vigor that propelled me through life. And I see all the hopes and the dreams I once carried. I see all the talent I had as a young kid who understood fairly complex geometric concepts from an early age, who wrote short stories and novellas from the time of grade school, who had such a consuming interest in certain topics and such an enduring ability to dig in and really relish what I learned about… I think about my teen years, when all the world was a fascinating oyster for me to explore… I think back on my early adulthood, how I was so very intent on doing the best I could do, being the best I could be… and how clear I was about what I was going to do with my life, what I was going to accomplish, what I was going to achieve… and how I always knew there was something inside of me that was so unique, so promising, that all the world felt wide open to me.

At least, that’s how it felt inside. Inside my head. Inside my heart. Once I got outside my head and started to interact with the outside world, it all fell apart. I couldn’t get my thoughts together. I couldn’t understand what people were saying to me. I couldn’t keep up with what was going on. I couldn’t follow through with much of anything. I would get so turned around, so tired, so frustrated, so backed-up, and so upset with myself for being so stupid around other people, that I could never get anywhere. I just couldn’t. I’d get my words mixed up, I would lose a lot of what people were saying to me, I’d misunderstand, but wouldn’t understand that I’d misunderstood…

And it would all go to hell. Again.

How I can explain this to NT, I’m still not sure. They don’t seem to think I have real problems understanding. Or maybe they do, and they aren’t showing it. Maybe they’re just trying to make me feel better about myself and not let me get hung up on my difficulties. Maybe they think I’m just lying about all this for some nefarious reason. All I know is, they don’t seem to think my difficulties are that big of a deal, and it’s disheartening.

It’s like having someone who’s colorblind tell me that I should be bothered by suddenly not being able to see different hues of green and red. It’s like having someone who is not physically fit telling me I shouldn’t feel bad about not being able to run up 20 flights of stairs, like I used to. It’s like having someone who has never had much money telling me I shouldn’t feel bad about losing 60% of my retirement savings to the market slide(s) of the past 10 years.

It’s all relative, certainly. But I do feel my losses grievously. And even if other people don’t know what it’s like to have what I had, I do. And I know what it’s like to lose it. And miss it.

The closest analogy I can think of is that I’m like a spider monkey who lived up in the trees all my life — swinging from trees high above the earth, eating fruit and flowers, having a grand time galavanting to and fro…

… Until I fell and hurt myself and lost my sense of balance… and then I lost a finger… and another… and another… and then my tail was chopped off… and I lost the rest of my right front paw.

Progressively, I have lost the ability to jump and swing through the branches like I used to. I can’t hang from limbs and pick and eat fruit and flowers like other spidermonkeys can. I can’t get up into the highest branches, where I used to swing without a care. I can’t just galavant, to and fro, and be a monkey.

I’m grounded. Stuck on the forest floor with the capybaras , who are content to graze and forage on the ground, who have no need for tails, and perhaps never gave a thought to spending any time up in trees. And who certainly don’t miss the sight of blue sky above the vast canopy of treetops – because they’ve never seen it.

“What’s so terrible about being on the ground?” they ask me. “Why be upset — there’s plenty of grass and plant life to eat down here… You should be grateful to have what you can get. Why would you want to be swinging around up there, anyway? And why would you want a long tail like that? Seems to me, it would just get in the way!”

It’s an imprecise analogy, I know. And it might not make sense to some. But sitting in session with NT, it’s how I feel. Being told that ‘everybody has problems’ with memory or pain or whatever other problem is holding me back, doesn’t help me come to terms with the fact that I’ve lost it. That part of my personality is gone, that my identity has been compromised. And it may not be coming back. Maybe I’ve been deluded, all these years, thinking that my life could have been any better than it was…

But you know what? My life used to be better in some ways, than it is now, and nobody can take that knowledge away from me. I have lost. And I have lost a lot. And I’m trying like crazy to build back what I can. If I just throw up my hands and say, “Oh, well, I suppose that’s my lot in life, I should just be grateful for what little I have,” it may make me feel better in the short term, but it flatly denies what I feel in my heart — that I am capable of more and better than I have been doing… that there must surely be some way for me to make the most of what I have and build back at least some of what I need… that I don’t have to settle and I don’t have to resign myself to a disabled life.

I have lost. I have lost a lot. And it sucks. But that’s not the end of the story. It never is. I am not giving up, and I am not going down this road to make less of my life than is capable. I’m going down this road to make more of myself than I am now, or was before. Even if I have fallen. Even if I have been hurt. Even if I have lost things along the way, I can’t give up. Not now. Not ever. No matter what anyone says — even a well-meaning, highly educated and professionally experienced therapist.

In the end, we all have to make peace with our limits. And make of them what we will…