You see, I did leave my therapist — back in 2009

firecracker
Discussions can get fiery…

An interesting thing happened yesterday. I was going through some old posts that I had un-published for some reason, and I decided to re-post them. One was from 2009, where I was debating whether to fire the therapist I was seeing. That was almost exactly six years ago, today, and long story short, I did fire them. After I figured everything out.

With me, a lot of the stuff people say doesn’t sink in right away, so I have to take some time to figure it out. I have to ask questions — and I have to ask them the right way, so I don’t sound like an idiot. Truly, there are things that block me, that keep me from understanding what’s going on, and unless I can ask questions, I get lost.

That’s probably the issue with emails, lately. I don’t talk to real people enough, and I don’t get what they’re saying in writing. How ironic, that I need to talk to people.  Writing has been my preferred mode, for as long as I can remember. But the practice at having discussions with people has really paid off — and I’m a heckuvalot more functional at getting information and processing it now, than I was, at the time I wrote that post about my therapist.

I guess everybody’s like that, to some extent — we need to bounce ideas off others, get their opinions, see what they have to say, before we make up our minds about things. It’s not a TBI thing. It’s a human thing. For some reason, my brain tells me that I’m stupid and dull and not getting things. Then again, it’s not just my brain — it’s most people I’ve ever talked to about things I didn’t get, throughout the course of my childhood and youth. People just couldn’t fathom why I was so dense about some things, why I would miss details, why I would struggle with decisions that seemed so straightforward to them. And even when people helped me without questioning me, I had a hell of a time understanding their facial and vocal expressions, and interpreting how they really felt about me. It was safer to assume the worst, because I’d assumed the best about people so many times, and I’d been wrong.

If people tell you you’re an idiot (in so many words) — or you think they believe you’re an idiot — even if you logically know you’re not stupid, it starts to take a toll.

And you shut down. Which is what I did. I just couldn’t take all the frustration of trying to talk to people, trying to express myself, trying to make myself clear.

Truth be told, I still feel that way. I am definitely making progress with extracting needed information from others, but I’m still not  great at communicating in words. There’s too much going on, that can’t be translated verbally — it’s a whole world of sensation going on in my experience, that doesn’t lend itself to words.

And I’m sick of trying — and failing — to get my meanings across.

So, I’ll look to my writing to help me put things in order. It helps with my thought process, and it’s a huge help for my head. I feel much less alone, when I’m writing things down. Talking… that’s a very different thing.

Which is ironic, because I need to start looking around for another neuropsychologist. I know my current one is not leaving till March/April, but it takes time to find a replacement, and I need the time buffer to pick carefully. I’ve been ’round the barn with a handful of different therapists, all of whom eventually annoyed the living sh*t out of me — including the last one, who (I now realize) is just an a**hole with a license to do social work.

Caveat: I’m going to rant a little bit here about the last official therapist I had — cover your ears /scroll ahead if you don’t want to hear it…

Okay, so I was seeing this therapist, in addition to my neuropsych, to handle caregiver concerns about my spouse. The whole point was for me to get support so I can be a better caregiver, and also take care of myself. And that was my expressed intention, going it. But oh no… the therapist couldn’t just work with me on that — they had to spin my marriage into some sort of competition between my spouse’s needs and my needs, and they were actually gleeful, when they asked if my spouse noticed my behavior had changed to be less helpful, less sympathetic, since I started seeing this new therapist. The therapist was constantly talking about how my  needs were their concern, vs. my spouse’s — as though the two of us were competing parties vying to get our needs met from limited resources, and both of us couldn’t be served at the same time. They treated my marriage like a zero-sum game, where only one person could win, and my spouse was just taking advantage of me. They COMPLETELY disregarded the fact of my spouse’s neurological issues — the strokes, the diabetes, the panic/anxiety issues — and they treated them like they were a manipulative sociopath. When I told them about how my spouse would get upset over things, that therapist actually smiled and was pleased. Fuck Them. Fuck them and their self-centered, divisive bullshit. You go up against my marriage, and you go up against me. So, fuck you very much, you miserable, hard-hearted, shriveled-soul idiot.

Okay, enough. Obviously, I’m none too pleased with that therapist, and I’ve had a number of other experiences that have been similar. Everybody seems to take an over-simplified approach, where my spouse is either more disabled than they are (and getting worse, because after all, they are getting on in years and they do have their own set of issues), or they are not disabled, they’re just a manipulative narcissistic sociopath.

Granted, a lot of my spouse’s behavior could qualify as the latter, but they have neurological issues. And they’re not like that ALL the time. I need help managing myself and my relationship with them, and I need someone to understand that I actually do have some issues that I need to address.

And the approach that my current neuropsych takes — I have some issues, but I really blow them out of proportion because my thinking process is screwed up — that’s getting old.

Well, this post is turning into a longer one than I planned. It’s time to take a break. Give myself a breather. And chill out. I need to stay positive and pro-active, not get sucked into negativity from external circumstances. I’ve been sick. My resistance is down — and that includes my mental resistance to negativity. Best thing I can do, is look to the good lessons I’ve learned and focus on them.

Bad stuff happens all the time. But good stuff does, too.

And that’s where I need to put my attention. Hopefully, I’ll find someone to work with who feels the same way.

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The biggest barrier to progress, is being convinced that you KNOW

Imagine what’s possible, when you just let it go — and grow

Okay, so here’s my question of the day:

In the land of mindfulness-oriented behavioral health providers, how is it that the concept of Beginner’s Mind gets lost?

I’m specifically talking about my own experience with behavioral health folks, including friends who are psychotherapists, counselors I’ve seen, as well as my neuropsychologist. In all my years of seeking out help for my issues, I have but rarely encountered individuals who were really able to suspend judgment and not get stuck in the trap of continually seeking out ways to reconfirm their own world views.

And how many times have I sat across from someone who was professionally trained to help me, watching them not listen to me for what I was saying, rather for confirmation of what they believed…?

I think it’s wonderful that there are professional tracks for people to go down, to learn how to help others. At the same time, though, people also need to not get stuck in thinking they have it all figured out.

Because the behavioral health landscape is changing dramatically, especially compared to where it was just 10 years ago. We know so much more about the brain and its mechanisms than ever before. Yet we have just only begun to scratch the surface. So, let’s not get all hoity-toity about how much we know and how clued-in we are, thanks to our specialized skills and whatnot.

To me, orthodoxy (being convinced that you’ve got THE SECRET to how things work) and rigidity (never, ever changing your world view) are even worse liabilities than a brain injury. They make it extremely hard to adapt — which is precisely what we need to do as TBI / concussion survivors. We may be changing and growing and whatnot, while our providers are still stuck in their own versions of reality — which may or may not be useful to us.

It really is a problem. But I’m not the one to run around telling people that they’re too stuck in their ways. They have to see and realize it for themselves, and let go of their pride, arrogance, hubris. I’m sure it can be very, very difficult, dealing with brain-injured folks and their families/loved-ones, not to mention the healthcare system. It can put you into a state of perpetual fight-flight, which makes you even more susceptible to egotistical tendencies, arrogance, and prideful blindness.

I think especially for those folks who have been on the leading edge for many years, who were ridiculed and marginalized and made to feel “less than” because of their forward-looking stance. When you’re continually attacked and thwarted, it can do a number on you. I know how that is, and it’s no fun.

So, that cannot help but affect you. It cannot help but color your world view and make you biochemically and neurologically inclined to behave in ways that are defensive and self-supporting. Especially if you’ve had to shore up your own self-confidence and self-image and professional reputation, lo these many years, that can train you to be a certain way… a way which is intent on finding proof that you’re right, that you were right all along, and “they” were all wrong to doubt and thwart you.

Yes, I get how that shapes and conditions you.

At the same time, the higher purpose (of being of genuine help to others) needs to trump the hunger of your ego.

In the end, isn’t it more fulfilling to continue to learn and grow, rather than being someone  whose main purpose is to ease the pain of the daily stresses of life and prove their “rightness” to themself and others?

I’m not a behavioral health provider, but personally I think I’d rather be learning and growing than constantly being on the defensive about my own convictions.

In the end, it can much more interesting to find out you’re wrong… and expand your concept of what’s right. There is so much more to discover about the human systems, the brain, and how they all interact.

I hope I’m not alone in this.

Brain Injury and Lying – The Rest of the Story

Summary: Brain injury and lying can go hand-in-hand. First, there is confabulation, where the brain-injured individual genuinely thinks they are telling the truth, but they have their details confused. Second, there is the outright lying, which can come from experiencing an intensely emotional “catastrophic response” to situations which seem insurmountable. This is an account of how a good friend of mine changed from a basically honest person to a compulsive liar after experiencing several strokes.

It seems so innocent...
It seems so innocent…

I’d like to write this morning about a friend of mine who had several strokes back in 2007, a couple years after I had my last TBI. In fact, I’d say that working with them after their strokes really make me aware of brain injury issues… so that I could recognize and deal with my long-standing issues, at last.

I have known this individual for more than 20 years, and we’ve worked together on a number of occasions. We have common friends and we have similar senses of humor, so it’s been pretty easy to become – and stay – friends with this person. I am friendly with a lot of people and I make a lot of effort to really be a good person, but this particular friendship is closer than most others I have. This individual knows things about me that I wouldn’t tell most other people. And I know more about them than most others do.

The one exception to this is TBI. When they had their strokes – two of them, a week apart – in 2007, I was one of the few people who didn’t back away from them and run. I have actually known a number of people who had strokes and TBIs, and even before I knew that I myself had traumatic brain injury issues, I was willing and able to hang in there with them. So, this time was no different really. Different strokes for different folks, y’know? 😉 But when I was dealing with my TBI stuff, they just couldn’t deal with hearing about it. It was like they thought that it meant I couldn’t be there for them – and since I was one of their main supports after their strokes, the idea that I had neurological issues must have been pretty frightening for them.

Anyway, despite not getting any support from them, I really went out of my way to make time for this friend, to help them get back on their feet and rehabilitate. I have always been a firm believer that the human brain and body and spirit are incredibly plastic — and they can and will recover to a much greater degree than the “experts” believe, if you give them a chance, keep working, and don’t give up.

Working with this friend, we got them on a regular eating and sleeping routine… we got their weight down about 30 pounds… we managed, changed and then regulated their meds… we restored the strength and coordination in their right side… we got their speech and organization together… and – together – we got them back to functioning again.

We had to do it ourselves, and we had to do it alone. Because even though the MRI showed even more damage to their brain than “just” the strokes — they had other evidence of brain injuries that they couldn’t remember having — the doctors never gave them any indication that they needed any neurological or neuropsychological help, and their strokes weren’t “disabling” enough to warrant official rehab.

The impact was pretty noticeable to me, though. Their processing speed had really slowed down. They got confused a lot more than before. They had extreme emotional reactions to things that are sad or frustrating but aren’t exactly the catastrophes they thought they were. They had trouble keeping a conversation going. Their ability to multi-task was pretty much out the window. They basically went from having six gears, to having two, one of which was reverse, and when pressed to do more, they blew up or broke down in tears.  But since I’m not an “official” family member, there was only so much the doctors could offer me. Unfortunately, they and their family weren’t really emotionally or logistically able to deal with all of it. They just wanted things to go back to normal.

Out of everyone, I turned out to be the only one who was A) able to deal with the fact that they’d had several strokes (and evidence of previous TBI), and B) willing to do something about it. I’ve worked with relatives who had strokes and TBIs in the past, and this time was a repeat of those past experiences.

It took several years to get them back on track, but we did it.  And it was really gratifying to see. Plus, in the process of helping them, I realized I had my own set of issues I needed to deal with — which I’ve written about plenty in the past. Again, it’s taken me years to get back on track — more years than my friend, actually — but I’ve done it.

The only thing is, this friend of mine didn’t continue to take care of themself. They didn’t have the support of their family and friends, and I couldn’t be with them 24/7. One of the reasons that I’ve “gone off” on therapists in the past, was that I was being actively undermined by their friends who were therapists, who kept telling them that their issues had to with their terrible father, their hell-on-wheels mother, or other past relationship issues. When I tried to get support from these therapist friends, to deal with the neurological issues, I got either blank stares or active opposition, because they were so sure it was an emotional thing, not a neurological thing.

So, with family pressuring them to just get back to how things were, their friends telling them that they just needed to make peace with their parents, and me not being able to be around as much as I wanted to, because I had a lot of work commitments, they just went back to how things were before.

They stopped eating the right things and they stopped eating at regular hours.They started eating the wrong things, too — lots of sugar and fats and junk food, which has put the weight back on them — and is how they got into their situation to begin with. They let their sleeping schedule go all to hell, and by now they are pretty much nocturnal and they are rarely available during daylight hours.They stopped cleaning up after themself, and they live surrounded by piles of stuff that they can’t seem to figure out how to clear away.

It’s been really weird — it’s like they just got to a point where they decided, “Oh well, I’ve had some strokes, and I’m getting old like my parents did (my friend is  now in their 60s, and their parents both died in their late 60s/early 70s)…. so I really don’t feel like doing all this work anymore. I’m going to take a break, because I’m going to die pretty soon, anyway.

And it hasn’t had good consequences. A lot of times when I see them these days — which is more rarely than before, because I’m on a “real world” sleep-wake schedule — they look more and more like a “stroke victim” — and less and less like the person I know they are. I try to bring up their progress with them, but they always shut me down. I try to hint that they may want to take better care of themself, but they either start to yell at me, or they change the subject, or they start to cry. It’s that catastrophic response, for sure — a reaction that is just dripping with the emotion of fear and overwhelm.

Fear that there is something terribly wrong with them.

Fear that they are damaged beyond repair.

Fear that others will hate and look down on them because of the strokes.

Fear that they will never be “normal” again.

Fear that they’re going to die a horrible death and go to hell forever.

Fear that it is all TOO MUCH to handle.

So, even though I have seen changes in their behavior and their functionality, I am helpless to change any of it. I can’t even bring it up – not with them, not with their family, not with their friends. People tell me that I have no control over others, and that I should take care of myself first, but it is so painful to watch them do this to themself. Not only do they have physical and logistical issues, but there’s more.

There’s the lying.

I’ve written before about confabulation and how traumatic brain injury can mix things up in your head and make you think you’ve got it right, when you have it completely wrong. I have a had a long history, myself, of accidentally “lying” about things  — it wasn’t my intention to lie, and I didn’t actually think I was lying, but I had my facts all turned around… which looked a lot like lying. I still do it today — I miscalculate, or I get things turned around — but fortunately I have a lot of people around me who genuinely care about me and want to help, and they don’t hold it against me. So, the consequences are less, even if the problem persists.

I have seen confabulation happen with my friend, as well. They were so sure they had things exactly right… but they didn’t. Not even close. Over the past few years, however, I have seen their accounts turn into outright lies — some of them more extreme than others. They know they’re lying, but they either can’t seem to help themself or they just LIE, and then make excuses.

It’s getting really bad. On a number of levels.

First, there’s the routine lying to people about what they do with themself all day — they paint a picture that makes them look quite functional, when the opposite is true. They talk about doing things that they aren’t even close to doing — like running errands or working on important projects and going about their business like they’re “supposed to”. They’re just thinking about doing them, but they tell others that they actually have done them.

And then there’s the deeper sorts of lies — the adulterous affairs, where they aren’t only sneaking around behind their spouse’s back and flirting with people who seem intriguing, but they are actually having sex — a lot of it, and really wild stuff — with these adulterous interests, lying about it, getting hotel rooms, visiting the long-time family vacation spots with the object(s) of their adulterous affairs, and openly talking about their affairs with people who know both them and their spouse. I found out about it by accident, and I got a lot more details than I wanted to. I almost wish I’d never found out, to tell the truth.

And that’s a pretty extreme turn of affairs. Not only are they spending money that they (and their spouse) cannot afford to spend on hotels and meals and entertainment, but they are also doing it in plain view of people who know them and their spouse. But when I have confronted them about it, my friend has lied right to my face about what was going on. They have sworn – up – down – left – right – that there was nothing untoward happening, just a “close friendship”, and when I have pushed them, they claimed it was just for “emotional support”.

Right. Emotional support. Unfortunately, I know differently.

This, dear readers, is very out-of-character for my friend. For as long as I have known them, they have been stable and loving and committed to their spouse. And they’ve at least tried to be honest. Until the strokes. Since the strokes, and especially they stopped taking care of themself, their behavior has become so erratic, so chaotic, so extreme — with the cursing and laughing and crying and lying — that I frankly don’t want to be around them much. I can’t just abandon them, but it’s hard to be around it all. And when I try to bring this up and discuss with them, they just can’t hear anything about how their strokes have affected them. It’s too much. It’s just too much for them to handle. And they pitch headlong into yet another mother-of-all-catastrophic-reactions. Yelling, cursing, crying… and more lying.

Watching someone who used to be level-headed, strong, secure, and self-confident burst into tears or blow up in a rage or come up with some cockamamie fantastical version of “reality”, because you’ve drawn their attention to something that everyone else on the planet can see clearly… something that is really and truly wrecking their life (how long till their spouse finds out about the affair(s)?)… well, that’s a pretty bitter pill. Trying to reach out and help one of your best friends — only to have them freak out on you and become threatening… it’s a hard one.

And it’s complicated. There are a lot of factors in play. And I can understand why a lot of this happens. But the lying doesn’t help matters any. It’s one thing to confabulate, but outright telling a falsehood deliberately is something that doesn’t sit right with me.

It’s just wrong. And to see them do it so compulsively… that’s pretty hard to take. I am almost neurotic about telling the truth — I get myself in trouble all the time, because I’m not willing to lie to people. And when someone who matters this much to me just runs around lying through their teeth, left and right, to everyone — including their spouse — it really works on my nerves.

But when I look at this in terms of catastrophic reaction, it starts to make sense. It’s like there’s all this conflicting stuff rattling ’round in their head that they can’t make sense of, and it puts them on edge. They have a history of trauma, too, with a father AND a mother who were each a real piece of work, so that personal history has biochemically primed them to go into fight-flight over just about anything that looks like a threat. From what I’ve seen, they are geared towards a fight-flight response to life in general… and their blood sugar is out of whack, so that it’s making that fight-flight even worse, and every little uncertainty looks like an enormous THREAT!!!

So, being on edge, and having the perception that there are things that are too big for them to handle, and they’re not going to be able to handle them, and they are in DANGER because they can’t handle them… well, that sets up the perfect “petri dish” for growing lies. Because lying is the one (and only) way they can immediately cope with an imminent threat — which of course everything looks like, especially when a social situation calls for the kind of quick thinking they cannot do anymore.

When I look at this whole business through a neuropsychological “lens”, I can understand the reasons for their behavior. And bottom line, knowing what I know, I actually don’t blame them. Yes, they are an adult, and yes they are responsible for their actions, but this is a neurological condition, not a psychological or emotional one. I’m not letting them off the hook — lying is still wrong, and I am still very uncomfortable with it.

At the same time, I’m seeing the real reasons behind it. I’ve discussed this a few times with my neuropsych, and they propose that their brain might be experiencing further vascular damage, because not only do they have a history of strokes, but their blood sugar is on the diabetic side, as well, which can cause more vascular “insults”. And that’s a whole other ball of wax to deal with.

But still, the lying… I keep coming back to that. It’s really tough to watch, really hard to handle. One of my best friends is self-destructing before my very eyes, and I am helpless to do anything about it. All I can do, is learn from their actions and their mistakes, and do what I can to help them as best I can. To be honest, it motivates me to take even better care of myself and better manage my physical and neurological health, because I don’t want to end up like them. I have noticed myself lying at times, when I felt cornered and felt I couldn’t handle everything that was coming at me. That is something I DON’T want to make a habit of, and seeing my friend go through everything they’re going through, is lighting a fire under me to do better. To be better.

None of us has control over others, which is probably a good thing. But we do have control over ourselves, which is an even better thing.

Here’s to life – onward.

Trauma + TBI = Trouble

I am writing this after several conversations and some reading — one conversation with a former soldier who was in Iraq during the first Gulf War, several conversations with a friend of mine who sustained a brain injury about three years ago, but has never gotten help for their injury — and is making increasingly poor choices about their life, their relationships, etc… all the while saying they need to find a therapist to help them deal with childhood trauma. They need a neuropsychologist, more like… As for the reading, check this out: Two Must Reads: The struggle for comprehensive PTSD and TBI treatment. I skimmed through it quickly, but I’ll have to go back to it. And I recommend you check it out, as well.

In thinking about the conversation I had with the ex-Marine, what struck me is how he talked about dealing with the incredible challenge of having to do things that were against his own morality, like kill people and destroy things. I was reminded of my post a while back about how war damages the souls of soldiers when I was talking to him, and he said there were several things that he and other military members of his family have done to cope.

The first is talk to somebody who understands — veterans in the family with whom he and other soldiers in his family can talk, have been so critical. The other is to find a way to make peace with things. Find a way to make it okay, on some level, that this is happening. Through faith. Or some sort of belief system.

In thinking about the conversations with my BI friend, I am starting to take notice that all their talk about trauma and dealing with it, is set against a backdrop of the BI they sustained five years ago. We have mutual friends who are therapists who are convinced that a lot of people are walking around with suppressed memories of terrible abuse in their childhoods, and that those repressed memories are making them do the things they do. With my BI friend, I suspect that they have been getting the “party line” that they are dealing with old memories coming up, and they don’t know how to emotionally deal with them. Now, I know for a fact that this friend didn’t just sustain a BI three years ago… Back around 1999, they also slipped on some ice, fell and hit their head pretty badly. They were dizzy and disoriented after it, and I noticed them being more volatile afterwards. Then they seemed to get better (although their marriage has been a bit rocky over the years). In the past three years, they’ve made an amazing recovery, and if you didn’t know them before, you probably would never guess that they have this going on with them. But I can tell. Maybe because I’m more sensitive to it — and better educated.

Anyway, this friend of mine is in pretty bad shape, financially, yet they don’t quite seem to get it. They have serious impulse control issues with money, and their spouse doesn’t actively monitor what they are spending on, how much, and how often. So, they have ended up in a jam that might cost them their car or their house. But they keep going along just doing what they do. Whenever I suggest that they might want to take a look at their spending, they get defensive, aggressive, combative. Not pretty. They just blow up like crazy. So, I stopped talking to them about it. They think they’ve found a good therapist, but like the others they have gone to in the past, they may end up not mentioning the BIs, and they may start treating their symptoms as purely psychological or emotional ones.

I really need to say something more to them about this. I think I need to discuss it with my neuropsych. My NP is probably not going to be able to say much, but I do need to ask them if they know anyone like them who has the same orientation towards healing and recovery. I suspect that along with my friend’s childhood trauma, there are some neuropsychological issues that need to be addressed — and it could be that by simply changing a few of the ways they go about doing things, they could benefit immensely.

I just need to find a good way to bring up the subject. They know about my recovery, and they have said many times that they are amazed by how far I’ve come. And, come to think of it, they have also said they wished they could find someone who is like my NP for themself. The thing they have going for them, is they have documented medical evidence of their most recent brain injury. It’s all there, complete with MRI showing the places where they have lesions. So they could get medical coverage to help them defray the costs. That’s huge, considering they have almost no money. Maybe getting some help will help them change that.

So yes, I do need to bring up the possibility of them seeing a neuropsychologist. They can get pretty paranoid, so I need to be careful how I phrase things. But I at least need to try. They need help. And I might be able to help/support them.

One of the things I hear them say is that they’re “too old”. They’re in their 60s and they feel like they’re getting old. But I really believe that they can turn things around. With some basic logistical changes similar to what I’ve done, I suspect they can revitalize their life and not only add years to their life, but add life to their years.

I just hope they don’t end up with a therapist who stirs everything up, tries to get them to “feel their feelings” (trust me, they have no problem doing that), and disregards their TBI history, because they are convinced that all their problems are trauma related.  They might only be partly right — trauma includes traumatic brain injury, and I would hate to see that piece of their puzzle ignored.

Therapy + TBI = Disaster

"My therapist told me the way to achieve true inner peace is to finish what I start. So far today, I have finished 2 bags of M&M's and a chocolate cake. I feel better already"

I’d like to propose something controversial here that probably won’t be well-received in psychotherapeutic circles. I’ve said it before, I believe, but I’m going to say it more emphatically now. Someone recently commented on another one of my posts, right when I’ve been thinking about it a lot, so I’ll say it again:

Therapists/mental health counselors (without a strong grounding in neurological information) are about the last people who are able to effectively deal with mTBI. And in the early stages of recovery, seeing a therapist to “figure things out” can do more harm than good. Much more harm than good.

It’s unfortunate, and I hate to say it, but I believe it to be true, based on personal experience with therapists and with friends/acquaintances who are therapists. What I’m about to say comes from years and years of observation, and no matter how seriously therapists may question my point of view (after all, I might be mentally impaired), I still believe it and I stand by it.

See, here’s the thing — TBI seriously screws with the functioning of your brain. Even a “minor” concussion and shear and shred axons and synapses and all those connectors that you’ve built up over the years to learn to live your life. Plus, it releases interesting chemicals into the brain that kill cells. Don’t be alarmed – the brain is a marvelously resilient organ that ingeniously figures out how to re-route connections, recruit other parts of the brain to do the jobs of parts that can’t do it anymore, and generally adapts to changing conditions in ways we are only beginning to recognize and understand.

The thing is, in the early stages of injury (and by early, I also mean the first couple of years after the incident — TBI is a gift that keeps on giving 😉 ) your brain is still trying to figure things out and it is organizing itself around a new way of needing to live your life. Generally folks with TBI don’t have a full and complete understanding of how they’ve been impacted and how it’s affecting their life – we just thing that the world has suddenly gotten all screwed up for no apparent reason. So, our brains are floundering and confused and not quite sure how to find their way out of the messes we’ve gotten into.

And the reorganization that normally takes place as a natural part of recovering from an injury — the reorganization of our brains along certain lines, so that we can resume some level of functionality — can be a bit haywire. The “plastic” brain is a lot like modeling clay. If you press it into a certain mold and leave it there, it will assume that shape and become like its environment. If you leave a lump of it lying on a table and walk away, when you come back a week later, it will be hardened into a chunk that may shatter if you drop it. If you stretch it into lots of thin, haphazard shapes and you leave it that way, it will harden into those thin and haphazard shapes.

So, when your brain is coming back from an injury and it’s looking for different ways to reshape itself, it can get all pulled in a gazillion different directions, because in the aftermath of TBI, things can be crazy and confusing, and we can come up with all sorts of skewed perceptions of ourselves. And if those perceptions are not questioned, challenged and corrected, they can harden into “truth” — which leads us even further down an erring path — into yet more trouble.

Hm. So, the crazier things get, the crazier you feel, and you wonder if you’re just plain losing your mind. You feel depressed and confused and out of sorts, and you don’t know why. So, you do the “logical” thing and you seek professional help. Your friends and family applaud you, because you’ve been getting harder and harder to deal with, and it seems like you have “emotional problems”. (Well, duh – emotional lability and impulse control are often “bundled” with TBI, as a neat little package of insult, injury, and humiliation for everyone involved.)

The only problem is, the therapist you start to see doesn’t know jack about TBI, and they come from the camp of “repressed memory” and how an unhappy childhood marked by long-forgotten/denied/overlooked abuse and neglect is to blame for adult issues. They believe with all their professional soul that most people are walking around in life cut off from their emotions, and that the true path to happiness is to connect with your inner hurt, name your pain, confront the things you are avoiding, and learn to love your demons.

There’s only one problem — none of what they say actually applies to you. The issues you have didn’t start until after your traumatic brain injury, and prior to that head injury, you were a reasonably happy and functional person with their share of troubles, but no “ticking time bomb” of forgotten abuse and neglect to throw you off course. They think that like certain childhood abuse survivors, you have been in denial most of your life, until you reached a certain point in your life when you had “advanced” enough to confront the challenges of resolving a difficult childhood… and they’re going to help you do just that — get in touch with your repressed memories, love the shadow, dance with your demons, and ultimately come to accept and love yourself, no matter what.

Great.

What they don’t realize, however, is that your brain is still recovering, still changing, still modifying itself to the world as it now is (rather than as it was before your injury). It’s volatile and highly subject to suggestion, and you’ve been wrestling for so long with not knowing for sure what’s going on with you or how best to deal with it, that your system is highly tweaked and on an emotional hair trigger. They think you’re in need of emotional “tough love” — but what you really need is some good regular exercise, a daily routine to take the guesswork out of your life, and extra patience and rest.

So, they push you. They challenge you. They test your limits. They try to get you to open up to them… pushing and pushing to get you to “admit” what’s going on inside of you, when internally, you’re in storm of emotion that’s neurologically based and totally inexplicable from a purely psychological point of view. They think you’re in denial and resisting necessary change, and you’re sitting there, week after week, looking at them like they’re from another planet, wondering “What’s wrong with me?!” and getting more and more confused and depressed by the week. You take it out on your friends and family, who have really had it with you, by now, and pull even farther away from you than before, thinking you’re just not trying hard enough.

Your therapist thinks you’re making great progress, getting in touch with your feelings and emotions, letting them come up and processing them. But you’re sinking farther and farther into a morass of emotional confusion, volatility, self-doubt, even desperation. Of course, this is all helping to create repeat business for the therapist who is “helping” you, and they can add even more diagnoses to the insurance bill, so what do they care? (Okay, in fairness, I’m sure that not all therapists are interested in creating repeat business, but any time you combine “care” with making a living, you get into gray areas and tricky territory.)

You’re increasingly worried about your emotional and mental health, and that’s keeping you stressed. You’re not sleeping well, which is taking a toll on your ability to self-regulate — your ability to do, well, everything. You’ve got all of the following TBI after-effects in abundance:

emotions, moods, agitated, can’t settle down, anger, anxiety, feeling vague fear, worry, anticipation of doom, depression, feeling down, excitability, everything feels like an effort, feeling unsure of yourself, feelings of dread, feeling like you’re observing yourself from afar, feelings of well-being, feeling guilty, feeling hostile towards others, impatience, irritability, no desire to talk or  move, feeling lonely, nervousness, feelings of panic, rapid mood swings, restlessness, tearfulness, crying spells, feeling tense, feeling vague longing/yearning, etc…

And according to your therapist, it’s all due to mental health issues. Not brain issues. Emotional ones. It’s not your body that’s the problem. It’s your soul. You’re screwed.

Your brain is getting a steady stream of messages from your therapist and from yourself about “the way things are” — which is that you’re screwed up and in need of some serious intervention — and it’s causing your very plastic brain to re-form itself along the lines they’re suggesting. You feel like you’re getting worse, so your therapist dials up the intensity … and tells you all the drama is good — you’re “feeling things for the first time” (which is total, utter crap) and you’re acknowledging the difficult-to-handle aspects of your life (which really only emerged after your TBI). It throws you into even more of a tailspin, and before you know it, you’re planning on breaking up with your partner/spouse/lover, you’re riding the roller-coaster of withdrawal on one hand and aggression on the other, and you’re more and more convinced that you can’t live without your therapist, who is the one person who will sit in a room with you for more than a few minutes, as you’ve effectively chased everyone else away.

Anybody else have this happen to them? It happened to me, and looking back, all the advice from my friends and family about getting professional help from a licensed psychotherapist, was about the worst I could have gotten — and followed. It almost cost me my marriage, it turned my life into an extended experience in chaos, and the only reason I managed to escape the bogus-psychotherapy merry go round, was that I ended up seeing a truly well-meaning but neurologically clueless psychotherapist who scared the crap out of me because they had connections at a local mental hospital who could have me committed (against my will) at their say-so. A narrow escape, but an escape no less.

In fairness, I do believe that a lot of therapists are well-meaning and they are acting on the information and the training they have. But too often that training does NOT include a neurological element, and/or they decide that the awful ills of the world have psychological roots.

Another thing that makes it difficult is that a lot of therapists have mental health issues of their own. A lot of my therapist friends got into therapy because they were helped by counselors, themselves. While I applaud their eagerness to help others, it puts up a huge red flag for me. Because the nature of their mental health issues — incest or eating disorders or some other awful trauma — caused them to distance themselves from their bodies at a fairly early age, and they have grown up living outside their bodies. My therapist friends are by and large antagonistic towards their own bodies. They don’t really exercise, and if they do, it’s “gentle stretching” or yoga or something really non-challenging. They are not on friendly terms with their own physical selves, which closes their minds when I suggest that exercise and taking care of your body (as if your life depends on it, which it does) is key to mental health.

It’s all “mind over matter” for them — and I’ve witnessed the same mindset in other psychologists and therapists I’ve met. Not physically vigorous. Not physically healthy. Sitting all day in small rooms, gaining weight, losing muscle tone, planning on knee and shoulder replacements to repair the damage that their sedentary lifestyles have done to their bodies. And complaining all the while about stupid little things that a little exercise would make seem inconsequential.

Good grief.

Anyway, I’ll quit ranting, now. It’s a beautiful day, and thank heaven I remembered I need to move money into my bank account to cover a monthly autobill. Just to wrap up, when it comes to deciding whether or not you really need therapy, consider your neuropsychological state, and make sure you don’t get stuck with someone who doesn’t have a clue about how neurology can make you a little crazy… but that passes with time, and with the proper training and reinforcement for what your life can really be like.

‘Cuz if you aren’t crazy when you start seeing them, regular visits can make sure you really get there.

Caveat emptor.

No, it was NOT self-sabotage

I’ve been thinking a lot about my past history with different things I’ve taken on — jobs, hobbies, projects… And I’ve been thinking about how so many times I’ve been unable to complete things or stick with them long enough to have a track record of success that lasts more than a year or two.

All my life, ever since I was a kid, I’ve been told – in one way or another – that I was responsible for my failure to complete. I was responsible for my inability to stick with things. I was the person who was making all my screw-ups happen. And the fact that I never followed through meant that I had a secret wish to sabotage myself.

Okay, here’s the thing – I have known a lot of psychologists and people in therapy over the years. I’ve known a lot of people in recovery from drug and alcohol addiction, and I’ve know a lot of people who were actively addressing childhood abuse issues. What I’ve heard from them, time and time again, is psychological explanations of why it was that I could never manage to follow through or hold steady with jobs or relationships or undertakings long enough to get established and have a foundation of success. Those explanations have been largely about some deep-seated inner loathing of myself… some secret desire to somehow punish myself for things I experienced as a child and thought I’d brought upon myself… some hidden wish to destroy the things I worked so hard to build up, because I hated myself and didn’t think I was worthy of success.

I’ve heard all sorts of explanations, ranging from suppressed memories screwing me up… to past life trauma… to this-life trauma… to mistreatment at the hands of my parents/other adults… to cultural oppression of men and women through roles enforcement and peer pressure… to plain old laziness and not being a grown-up.

And you know what? I’m pretty sick and tired of all that talk. Because when I consider my job history in light of my history of TBIs, and knowing what I now know about how TBI affects general wakefulness and processing speed, which affects attentional capacity and resistance to short-term interference, which affects performance… it all adds up to a neurological situation that is about anything but willpower and character.

I wasn’t able to carry through on my school projects in high school and college because I couldn’t be bothered to try.

I haven’t been able to piece together a single position at a single company for longer than 18 months because I secretly want to wreck my chances of making a living.

I haven’t been able to sustain my attention and focus on myriad projects I’ve started and then dropped because I was lazy or unmotivated or it was all too hard for me.

It happened for exactly the opposite reasons.

Here’s how things would always (and I mean always) happen:

  • I would get started with a new undertaking. Very excited. Totally psyched.
  • I really, really wanted to do my best, so I would dive into my work and really apply myself.
  • I would be in a state of hyper-alertness, thanks to the stress of facing something new.
  • Eventually I would settle in and get familiar and comfortable… and the pressure would be off.
  • When things started to feel familiar (and I was really tired from pushing so hard), I would start to lose the edginess and I would start to make stupid mistakes.
  • People around me would be taken aback by my “sloppiness” and start to chide me.
  • I wouldn’t realize at first that I was messing up, then I’d realize it and I would start to doubt myself.
  • I would start to worry and get anxious and spend a lot of time second-guessing myself, using up a lot of energy and cognitive resources fretting about things getting messed up.
  • Things would get tighter and tighter and harder and harder to handle, and eventually I would need to just leave, to take the pressure off. Quit. Back out. Abandon ship.
  • Once I was out of that situation, the pressure would be off, and I’d be out looking for the next adventure.
  • I’d find it, dive in head-first, and be off to the races.
  • And the cycle would continue. My resume would read yet one more job left, one more position ditched. And I’d have to explain to the next people that I didn’t really want to join them for a year, and then leave.

Now, when I was 30, I could get away with talking myself in and out of job situations. But I’m pushing 50, and it’s just ridiculous for me to continue on this way. I might have continued on indefinitely, actually, had I never learned about TBI and the effects it has on how your brain works.  And if I’d never put 2 and 2 together about the anxiety business and my energy levels and things getting messed up NOT because I wasn’t trying hard enough, but because I was trying really, really hard, I would probably have stayed stuck in that loop.

And I’d still be thinking that I had some sort of psychological complex that was about me having poor self-esteem and not feeling worthy and loathing myself.

But that mis-perception is almost as damaging as the TBIs, themselves. Because it has me believing something about myself that just isn’t true, and which takes up so much of my time and cognitive resources trying to figure out and fix something that is not true at all. Second-guessing myself is a huge time-sink that sucks the life out of me. And second-guessing myself over lies people tell me about myself is a dramatic waste of time.

I do NOT have a shitty self-image. I do NOT have a self-destructive streak that causes me to self-sabotage on a regular basis.

I DO have a neurological situation that demands that I go about things in a certain way — conserving my energy and managing my anxiety and being objectively mindful of my performance on a regular basis. And when I don’t actively monitor my cognitive situation and make regular adjustments to allow for my situation, it can cut into my cognitive capacity and pull the rug out from under my performance.

It’s not about some psychological condition. It’s about neurological circumstances. To think that I’ve been walking around for so many years, thinking it was me that was the cause of my problems, rather than a neurological situation that wasn’t recognized or actively managed…

To think that countless other people might be walking around with that same virtual monkey on their backs — a monkey that doesn’t even exist.

What a shame. What a crying shame.

Is EVERYBODY in love with their therapist?

I checked my stats, and there are all these search engine searches in my stats results for about the past year having to do with people looking for info on being in love with their therapist.

The malady seems to be going around…

Personally, I’m highly suspect of therapists. This is because I know a lot of them, and I know for a fact that none of them are any more mentally healthy than most “unhealthy” people I know.

The fact that they are dispensing mental health care to others worries me a little bit. It truly does.

One thing I’m not overly fond of, is the tendency of therapists to simulate parents or significant others, so they can establish an intimate bond with their clients.

It seems downright creepy, in fact.  I suspect it happens more with opposite-sex situations — female client, male therapist — but maybe it happens the other way around, too.

Either way, the dynamics are just too weird. Therapists need to get their own lives and stop using their clients as pseudo-lovers. And clients probably need… well… less therapy. Maybe?

The whole business of transferrence and regression raises lots of red flags for me, but it seems to be quite widespread. It’s just not the right thing to do, in my opinion, especially considering that lots of therapists have their own screwed-up issues, and it’s a rare individual who can actually manage their intimacies. When you get into a position of such power and influence over another — which therapists often do — it opens the door to a whole world of hurt that is downright dangerous.

Of course, the therapists get to charge you money for it, and they can always walk away from the situation using their “professional” discretion. They’ve been taught how to ply a powerful trade, but very few clients actually know what they’re up to.

Until it’s too late. And then, well, it’s too late.

I was going to write about mental illness

I have a bunch of theories about mental illness, and I was going to talk about Theory #87:

Many cases of “mental illness” are artificially created, and they’re self-fulfilling prophecies.

I was going to go on about how we live in a fragmented, disjointed world, that’s increasingly driven by professionals who need to recoup their investment of dollars and years in their chosen line of work. Those professionals create frameworks of understanding, based on their research and industry standards, and then they peddle them to the unsuspecting, fairly trusting general population, which is comprised of people who have  been disenfranchised from most of what brings meaning and purpose to our lives — family, friends, community, and a connection with the natural world.

I was going to write about how, in order to feel some connection, some meaning and purpose, we turn to mental health professionals for help, and in order to help us, they have to 1) slot us into one of the many categories they use to understand their world, and2) establish for the authorities that we indeed need help, so they can get a billing code for the insurance company.

Then I was going to write about how in order to develop the connection with this new significant other person in our lives, we (patients) need to behave in a way that justifies our being there. And we have to skew the relationship with the professional in a way that makes us look genuinely ill — which eventually we may become, if we continue to behave as such. If we succeed, we develop a kind of bond that is a substitute for the bonds we can have with family, friends, community, and nature. But the bond is important to us — especially if we are very vulnerable and have done the whole regression/transference thing. Our “helper” becomes an essential part of our lives.

Then I was going to go into how, in order to continue our interactions with this essential part of our lives, we have to continue to behave in such-and-such a way, deepen the patterns we once hinted at, and before you know it, we’ve got a full-blown set of complexes, each with its own billing code, and each with a recommended “treatment” that sucks us even further into the cycles of artificial and (dare I say) contrived relating to this essential part.

We just can’t let go.

But when I thought about this whole subject, it just depressed me, and I decided not to invest more than 10 minutes today thinking about it. There, I’ve put in my 10 minutes. Now for something completely different.

While I was working out this morning, it occurred to me — yet again — that the best remedy I have for my issues is living my life to the fullest.  Taking on the things that arise in my path, and confronting squarely the challenges that come up. I have had a truckload of unfortunate things happen to me. But you know what? I’m still here. And with the right attitude and a good sense of perspective, all those things amount to a whole lot of life experience, which is what interests me far more than any measurable “success” or “failure”.

Truly, it dawned on me the other day, that in the past 5 years since my last fall, I have been devoting an awful lot of my time and energy to avoiding experience. I guess it was because the experiences I was having were really not working out as planned, and I didn’t have the wherewithal to understand how I could work them out better. My distractability and agitation had gone through the roof, I had a truly nasty case of PTSD from all the sh*tstorms of my life, and I was in severe existential angst a good deal of the time. Even though on the surface people couldn’t see that I was struggling, the fact is, I was. Internally, on a fundamental level so deep that it was extremely well-hidden, even from me.

Especially from me.

And I realize how accustomed I had become to holding my breath. Not breathing. Not giving my parasympathetic nervous system a chance to kick in. Not giving my sympathetic nervous system a chance to take a break. Not letting my system unwind and rejuvenate and restore. I was running on fumes. Constantly. Without fail… till I failed. I wasn’t exercising, I wasn’t stretching — physically, mentally, or emotionally. I wasn’t taking care of myself, and I wasn’t taking care of my life. I was getting hung up in all sorts of sidelines and getting snagged in all sorts of distractions that truly served no one. Not me, not anyone else.

And it hasn’t just been this past 5 years, when this has been my regular practice. On and off, over the years, when I’ve had accidents or falls or other head injuries, I’ve done that same kind of thing — never stopped to catch my breath and see where I was at, give myself a chance to rest and rebuilt, but race back in, guns blazing, till I was cut down by the steady onslaught of problems, issues, conundrums, failures, confusions, distractions… until I was forced to withdraw completely from the playing field of life.

In retrospect, I have to say that if there’s anything that has made my TBI experiences worse, it’s that buildup of post traumatic stress, the post traumatic stress disorder (if I may go against my non-mental-illness focus of this post and use a mental health buzzword), which caused my body to wig out and get so wired, my brain couldn’t begin to recover properly.

In fact, if I had to pick one major contributing factor that’s made traumatic brain injury such a problem for me, it’s really been the body, rather than the brain, that’s complicated things. An overly wired, strung-out sympathetic nervous system, an underutilized parasympathetic nervous system, the knee-jerk reactivity and distractability and agitation that go hand-in-hand not only with TBI, but with PTSD, as well.

I hate to oversimplify things, and I hate to boil things down to the one thing that creates the tipping point, but the more I think about it, the more experience I have with my own recovery, and the more I learn, the more I’m convinced that the physiology of TBI and PTSD — the reactions of our bodies to the world around us — is what makes TBI such a bear to deal with.

The good news is, taking care of the body can go a long, long way to helping mellow out these issues, and restore the functionality I/we crave. TBI folks are often inveterate Type A personalities, and we love to GO-GO-GO and DO-DO-DO. There’s nothing wrong with that, within reason. But after TBI, if you want to get back to being yourself again, you have to do things differently and take special steps to support the systems that once worked on autopilot.

Autopilot is done. Finis. Kaputt. Time to get a new gig.

And so I have. Part of me would love to train for elite athletic competitions. Part of me would love to train for serious activities, like those 100-mile races an acquaintance of mine used to run, or even a triathlon — the Iron Man in Hawai’i, if course, not some mid-summer mini-triathlon in a seaside town. There’s a part of me that wants to prove how well I can do, how far I can push myself, and I thrive on the challenge. However, that’s not realistic, and I have too much at stake, to go mucking things up by overdoing it… which is exactly what I would do. Again, that’s my old autopilot self — my old overachiever, do-everything-and-then-some self — talking and trying to drive things.

My new gig is one of balance — careful balance — that preserves my resources for the long haul. My new gig is not the flameout routine I used to be on — work hard, play hard, and rest when I’m dead. My new gig is much more about staying fully present and aware of my surroundings, seeing the nuances, the fine details in things, and really, truly, fully experiencing everything that comes across my path for what it is — experience. Not a conspiracy to make my life difficult. Not a gift from a beneficent deity.  Not an emotionally weighted good-or-bad vote of confidence or slam against my very core identity… just experience.

When I let things be, when I let life be what it is, and I devote some time to really delving into what is there for me to use to my benefit — even in the mist of the sh*tstorm, I can find some peace in the midst of chaos. When I embrace the chaos and let it be what it is, without judging it and getting all tied up in knots over it, and thinking that’s the last and final word on what my life is like and what I’m capable of doing… when I give myself some room to breathe and step back and reconsider my life along different lines… tell myself a different story about what’s happening around me… well, life takes on a whole new meaning, a whole new purpose. And it becomes my life, not some series of tasks I need to perform to satisfy the requirements of others.

Of course, it’s an imperfect process… I’m still working out the details on how to keep myself consciously breathing on a regular basis. And I’m still working with my daily routine to ensure I don’t end up exhausting myself with all my productivity. You may laugh, but that’s exactly what I do.

But at least I’m aware of what’s going on with me, and at least I can have a sense of humor about it. I’m not perfect. Why would I want to be? And I’m not mentally ill (and you probably aren’t either). Why should I burden myself with that crap? I’m alive, I’m human, and I am either an amalgamation of all the DSM-based billing codes on the planet, or I’m none of them at all.

Sequelae and Intervention Following Head Injury

A great section from Neuropsychology and the Assessment of Mild to Moderate Head Injury by Dennis P. Swiercinsky, Ph.D. Note:  “Sequelae” means

  1. A pathological condition resulting from a disease.
  2. A secondary consequence or result.

The American Heritage® Dictionary of the English Language, Fourth Edition

I usually call them “after-effects”. My comments are in italics below.

Sequelae and Intervention Following Head Injury

A mild head injury, such as from a fall, an automobile accident, or a work mishap, often brings the person to the attention of a physician or a hospital emergency room.

But sometimes this doesn’t happen. Sometimes we can’t get help, whether we refuse it, or people don’t realize something significant took place.

If there are no complications or other injuries apparent, the person is checked over and sent home, perhaps with a prescription for pain relievers and a checklist to watch for any complications that might develop.

I wonder if the checklist shows what to do, if the complications arise. Seems like that would be helpful.

Without timely, appropriate, and comprehensive follow-up diagnosis, education, and treatment, the lingering problems from uncomplicated head injury can mushroom into seemingly relentless frustration.

True – and that’s what often happens with MBTI survivors. Even moderate TBI survivors, who get no (or inadequate) medical treatment, can end up without adequate follow-up diagnosis, education, and treatment. And how those lingering problems add up…

Underdiagnosis or misdiagnosis of the multiple cognitive, behavioral, and somatic complaints following head injury is common. Ultimate recovery and maintenance of a positive attitude toward recovery, as well as adjustment to the emotional trauma of the event that caused the injury, depend on early, appropriately intensive, and comprehensive intervention.

It’s a nice thought, that early, appropriately intensive, and comprehensive intervention is a possibility for people, but TBI happens so frequently, and so few people are adequately aware of it and its “wrinkles” that it seems like hanging your hat on early intensive and comprehensive intervention is a set-up for failure — or perceived failure.

Too often, symptoms are acknowledged by health care providers but are understated or minimized.

Amen to that! My doctor thinks it’s okay for me to not get a full 8 hours of sleep a night. And I can’t tell you how many doctors and healthcare folks have shrugged off my issues — pain, fatigue, etc. It’s maddening.

The urge to get persons back to work too soon and without comprehensive understanding of the injury often creates emotional and cognitive obstacles and usually worsens the symptoms and outcome due to creation of stress, greater discomfort, chronic re-injury, and feelings of distrust and resentment.

Yeah, we’re all supposed to get back to work immediately. What makes this particularly dangerous, is that a person who has recently experienced a TBI is depending on the assistance and guidance of those around them, to help them deal with everything. We’re friggin’ brain-injured, for heavensake! The fact that education and treatment so often fall into our own hands — the very people who need help — strikes me as the ultimate irony. And yet, so many of us are put in that position. We cannot even get help, lots of times, unless we push for it. Of course, it’s difficult to push for it, when your reasoning faculties and your cognitive abilities have taken a hit.

Educating the patient, family, employer, case manager, and others involved in the lifestyle changes caused by brain injury is of extreme importance.

Yes, because like I said above, the survivor is the one in need of help — and should not be the one holding the reins of the team of horses. Making a recent TBI survivor resposible for their own diagnosis and care and survival is like asking someone who is legally blind to drive a team of  Budweiser Clydesdales down a busy boulevard. They may be able to do it, but it’s a crapshoot. Someone who isn’t brain-injured needs to be at the helm, and they need to be properly educated. Preferably, everyone in the survivor’s immediate circle of influence.

Everyone needs to understand that even though no bones may be broken, no cuts sustained, and that the injured person may look and talk just fine, there is real injury.

And people need to be a lot less afraid of brain injuries. Probably the biggest hurdle to me getting help and support from anyone in my life around my TBI’s is their mortal fear of the prospect of brain injury. It’s mighty difficult to discuss your needs and your situation with people who are frozen like deer in headlights at the sound of the words “traumatic brain injury”.

The complex injury involving cerebral contusion and diffuse axonal injury within the brain, trauma and stretching of cervical muscles and supportive tissue, abrasion within the cervical vertebrae, soft tissue injury to muscle and circulatory structures of the head, chronic muscle strain due to guarded behavior in response to pain, changes in cerebral circulation and perfusion, and potential neurochemical and neurotiming changes in brain function provides the foundation for a host of behavioral, emotional, and cognitive changes.

So, how do we educate people about this? How?! It’s a lot to consider and take in — how can we get the right information to people who need to know, in ways they can actually understand it?

Diminished self-confidence, negative self-reference, inflexibility, desire for withdrawal, slower thinking, emotional unpredictability, and frustration intolerance stem from the complexity of injury.

Yes, they do. And it’s a vicious, self-perpetuating cycle that we get sucked into. The more it’s allowed to escalate and continue, the worse things get… Sometimes until it can’t possibly get any worse…

If the patient, family, employer and others do not understand the injury and its consequent dynamics, unreasonable expectations, charges of malingering, and inappropriate treatment will typically follow. Failure to understand and appropriately treat mild to moderate brain injury can result in prolonged and less than desirable ultimate outcome.

Yes, yes, and yes. All true.

The good news is, it’s possible to recover from late-effect TBI’s, even if you never received adequate medical care or diagnosis or assistance. And it’s a difficult thing, and a pain in the butt to have to do it yourself, but with focus and intention and the right information, it IS  possible to get back on track and reclaim your life after TBI.

Like the folks at Give Back Orlando, Dr. Swiercinsky actually takes seriously the cognitive-behavioral impact that even a mild TBI can cause. And the mention of the long-term effects that are less than desirable gives me hope, as well.

The main issue I have with what Dr. S says, is the feeling that all is lost, if you don’t act quicly. People have been having head injuries since the beginning of time. Millions of us have them every year. And yet, we’re still here. Granted, there’s a lot we can do to improve our lot — and we have a long way to go, to fully understand how best to treat and support TBI survivors. But all hope is not lost, if you didn’t get immediate, intensive, extensive help.

I’m living proof that survival is possible, even with precious little help from the rest of the world. I’m not recommending it to anyone — it’s much harder than it should be — but it is  possible.

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.