Emotional/Behavioural Changes after Brain Injury – Part 1

lightning striking the ground under dark clouds
Sometimes the storm seems to come out of nowhere.

From The Toronto Acquired Brain Injury Network.

My comments are in bold like this.

Emotional/Behavioural Changes

Some people are left with changes in emotional reaction or behaviour after a brain injury. These are more difficult to see than physical or cognitive changes. However, they can be the most difficult for the person and their family to deal with.

BB: I had no idea that a TBI would affect me emotionally, or change the way I acted. Like so many people, I figured that a bump on the head was just an external thing. I'd feel pain on my scalp, and maybe I'd feel a little woozy, but it would clear up in a few minutes... or hours. How wrong I was - so many times. Emotional and behavioral issues have been the bane of my existence (and my family's) for years and years, starting back in my childhood when my behavior was erratic, and my emotions were volatile.

Not everybody will experience these problems and their severity will also vary.

BB: The severity can vary from person to person, as well as from situation to situation. With me, I can be fine, one day... be not-so-great (but seem fine), the next... and then completely lose it a few days later. It's often cumulative, but nobody on the outside sees it building up. That happens inside. Where nobody can see. And when it erupts... hooo boy.
fireball explosion
The problem for me, is that when I blow up, it puts people off, and then they think that's how I always am... and then they walk on eggshells about it, all the time.

And I sometimes never get a second chance, because they've made up their minds about me in a negative way.

Agitation

This frequently occurs at a very early stage after the injury. It can be a coping mechanism for the person, who may be disorientated and very confused. It is most often a stage a person passes through, rather than a permanent change. Examples include: restlessness, pacing and pulling at intravenous tubes.

BB: I've been extremely fortunate to never having had intravenous tubes to pull at, but I know the feeling of not being able to sit still, being extremely agitated - especially after a TBI. A number of times, I can recollect getting hit in the head, and then being flooded with agitation and an overpowering need to MOVE! Like when I got hurt during an informal pick-up soccer game in high school, after the hit, when I was lying there, dazed and confused, I suddenly felt like I'd been given super-powers, and I leaped up and started playing like a crazy person. I don't think I played better than I had before I got hit, but I felt like I did. And I was ON FIRE - or so I thought.

In another soccer game, when I got my bell rung, I knew I'd been hurt, but I felt this incredible urge to GET UP AND GO!!! And I started racing around the field -- in the wrong direction, no less. I nearly scored on my own team, which I think was a red flag for everybody on the sidelines. I did get taken out of that game, and I paced the sidelines in confusion and anger, because I NEEDED TO BE IN THERE! But it was wise to pull me from the game. I was not in good shape, at all.

So, while agitation may be a coping mechanism for some, as they say above, I suspect it also has to do with the mechanism of the brain - the release of all those chemicals, and the general confusion that causes. The brain is trying to figure things out - plus, it's firing on ALL cylinders, like there's no tomorrow. In addition to being a behavioral coping mechanism, it's a result of the brain's basic function.

Explosive anger and irritability

If there has been damage to the part of the brain that controls emotional behaviour and the ability to tolerate frustration, emotions can swing to extremes. The stress of coping with even minor crises, such as misplaced shoes or a noisy vacuum cleaner, can be too much and trigger an angry outburst. If these stresses can be identified, it may be possible to reduce them.

BB: Amen to this. The part of the brain that controls emotions is particularly susceptible, as it's out in front and there are so many types of injury that can affect it. Car accidents, where your brain slams up against the inside of the skull... or tackles that snap your head back and forth... falls, etc. Minor events can turn into crises -- just being blindsided by a sudden change or something unexpected happening, can set me off. Little things can turn into huge things, in an instant. One minute, I'm fine, then all of a sudden, it's off to the races with emotional overload and over-reaction.
galloping horse
Prolonged stress will also do a number on me, as will fatigue. The more tired I am, the more irritable I get - a tired brain is an agitated brain. And when I get too agitated, it's not cool.

Sudden outbursts... extreme reactions... it's all part of a day in the life for me, sometimes. Unless I can get enough sleep and take good care of myself. If I can keep on my schedule and be smart about eating and drinking enough water, that helps. So does meditation and just taking time to chill out. 

Lack of awareness and insight

The ability to recognize your own behaviours and change them when needed is a sophisticated skill that can be affected by brain injury. This can affect someone’s ability to: be self-aware; have insight into the effects of personal actions; show sensitivity; or feel empathy. It also means that a person may not fully appreciate or understand the effect that the accident is having on their life, health or family.

BB: I honestly had no idea how my TBI was affecting my household, back in 2005. I'd gotten injured at the end of 2004, and 2005 was the start of the downhill slide. I became incredibly self-centered and obsessed with myself. Small wonder - I had to recover and build myself back up, as my Sense-Of-Self had taken a huge hit. I didn't know who I was or what I was about, anymore, and it was devastating. I didn't recognize myself, and I was so caught up in figuring it out inside my head, that I never realized the extent of the changes on people closest to me (who were outside my head).

It took talking with someone on a regular basis about what was going on with me, to help me see what an ass**** I was being, and to do something about it. Until I started talking to a neuropsych on a regular basis, I had no way to understand myself and objectively examine my behavior, because nobody I talked to actually understood how TBI affects the mind, body, and spirit... so they made all kinds of flawed assumptions about who I was and how I was. It was incredibly unhelpful for me, and it did more harm than good. 

I got lucky. A lot of others don't have that opportunity. And that's a damned shame. It's criminal, really.

I’ll continue this post in Part 2. Watch this space for notifications.

Source: www.headway.org.uk

Source: Emotional/Behavioural Changes | ABI Network

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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.

Seeking balance

Every morning I get up and exercise. I don’t always want to, but I do it anyway. As I’m working out, I often have to run through a whole list of reasons why I am doing it, why it’s a good idea, and what I will gain from the experience. I’ve made an agreement and a contract with myself  to do this each morning — in part, to avoid having to go on medication for my trouble waking up in the morning, in part, because it just feels so good to have exercised… after the fact.

One of the big payoffs that I promise myself I’ll enjoy, is improved balance. I have always had vestibular problems (which might have contributed to my falls when I was a kid?), and on and off, I still have trouble with dizziness and lightheadedness. I’m regularly concerned with the threat of additional falls or accidents, due to my intermittently poor balance.

Exercise, it’s my understanding, helps with balance, by strengthening the muscles we use to keep upright. (Especially strengthening the muscles of the pelvic floor — the muscles that keep your internal organs vertical, as well as connect the parts of your pelvis/hips.) It makes sense to me.  I’ve heard that the elderly become more prone to falls if they are weak, so strengthening the muscles with some basic exercises — like I do in the morning, each day — can go a long way towards keeping you stable in a vertical position.

I recently came across the blog Balance Chicago, which talks about vestibular rehabilitation. I will be checking them out, from time to time, as losing my balance is one of the most hazardous things that can happen to me – especially if I’m at the top of a flight of stairs or I am doing something physically strenuous. Falling is a major cause of head injuries — and my most serious TBIs have been due to falling. Out of trees. Down stairs. While playing sports…

But physical balance is only one piece of my puzzle, albeit a very important one.

Just as important to me are emotional and mental balance.  Exercise helps me work out my agitation, first thing in the morning, and it helps me train myself to pay attention to what I’m doing for extended periods AND focus on my form, which also contributes to impulse control. And when I have focus and can manage my attention properly, I find myself more emotionaly and mentally centered.

That’s especially important, this time of year. Thanksgiving is coming up, and with it comes a shift in my daily activities. This could really throw me, if I’m not properly prepared, because I rely on my routine to keep myself stable and sane. Additionally, at the same time that my major support, routine, is being disrupted, more demands are being made on me, in terms of activities and more social interaction. Without proper preparation, it’s a recipe for disaster.

And the fact that I never adequately planned or prepared in the past, is probably a big reason why the holidays in general have been so challenging and traumatic for me.

This year, I’m doing it differently. Together with my spouse and my neuropsych, I am spending a fair amount of time planning and prepping and thinking through the trip out of state to see my biological family. I am walking myself through the days, ahead of time, seeing where I can fit in my exercise routine… checking the weather for the area I’ll be in, so I can tell in advance if I need to take rain gear or not, and I can tell if I’ll need to really motivate myself to get out of the house, first thing in the morning. Next Thursday through Sunday look all clear — a good thing — with highs in the 40s and 50s. So, the weather should not be a discourager for me.

This makes me so happy! 😀

The shift in schedule is also causing me (yet again) to see how important regular routines are for me — and to realize that not having a regularly scheduled time with a psychotherapist is a problem that needs to be solved. My last therapist always had me in the same time slot, with rare exceptions. That was much more doable for me. The next therapist I see needs to make a regular appointment for me. That’s non-negotiable. Well, to a certain point… within reason, of course.

Again, balance is important.

Anyway, one of the other things that’s been in the back of my mind is that this Thanksgiving weekend is the 5-year anniversary of my fall down the stairs of the house I’ll be visiting. I lost my balance at the top of a very steep staircase, and I went down hard, hitting the back of my head on the steps a number of times. And from that point on, my life changed in subtle but rapidly worsening ways, till it was almost too late before I realized something was terribly, terribly wrong with me and my life.

It upsets me so much, that I lost so much — a critical chunk of time out of my promising career, my retirement nest egg, my savings, my credit… and I almost lost my marriage in the process. My inability to parse out what was going on with me caused a lot of things to deteriorate terribly around me, and I’m just now starting to battle back. But I’m battling. And I’m getting back. I’m making amazing progress…

And I need to remind myself of that. Because if I don’t, I get out of balance again, and I start focusing on all the things I’ve done wrong and have messed up.

I don’t want to do that. I want to have a good mix of positives and negatives. I want to be able to see all the amazing progress I’ve been making, over the past few years. And I need to measure my success by new measures that recognize the hidden difficulties I have, and accurately assess my true progress.

I have another appointment with my neuropsych tomorow, who is helping me think through my plans for the holidays. I’m unbelievably fortunate to have this person in my life, and I’m glad that I can help them, too, by doing as well as I am. They’ve told me that I inspire and encourage them, though I’m sometimes not sure why they would say such a thing.

Well, it’s not for me to decide what they should or should not think of me and my progress. It’s just nice to have someone who can objectively understand my issues and truly appreciate my progress — to balance out the people can’t, won’t, and don’t.

What she said… about never giving up

Over at Unsolicited Advice, this wonderful pearl of wisdom about TBI survivors:

What these men, women, and children need is for us to believe in them. They need for us to know that they can recover. Obviously, there are varying levels of severity among brain injuries, but most patients can see at least some improvement if they work at it.

If someone feels like everyone has given up on him, he often stops trying. This is a very dangerous situation for a brain-injured person; because of the brain’s amazing plasticity, it seems that the more a person does, the more he can do.

We must expect that brain-injured persons will recover, at least to some degree, rather than telling them they will never function again. We must talk to them as though they are still people, even if they don’t understand what we are saying at this moment. We must respect them and remember that their stories began long before the injury. They had a life full of promise, just like the rest of us, and can again; but they need our help. We cannot give up on the brain-injured community!

I’ll second that.

I’ve been stewing over my worsening experiences in therapy, today. The day has been a productive one, and I’ve made tremendous progress with tasks I started earlier in the week and struggled with for several days. But in the back of my mind has been lurking this simmering frustration over my psychotherapist’s apparent decision that I’m too impaired to be repaired.

Please note, I am very wary of this being the impending holidays approaching that’s mucking with my head. The holidays are often difficult for everyone, psychotherapists included (I would think, especially them, because they have to serve a client base that’s even more in need of help that most people — and even the most “regular” amongst us gets a little squirrelly at this time of year).

But when I think back on the exchanges I’ve had with them, it hasn’t just been the past few weeks that have rendered comments that suggested I wasn’t up to the task of doing my job, or advancing my career, or sustaining my marriage, or keeping my house, or having the standard of living that I am accustomed to. Those comments have been peppered throughout our conversations, and I think it’s finally just reached a breaking point with me. It could be that, rather than being a burdensome strain on me that’s taxing my ability to reason, the holidays are actually clarifying a lot for me and bringing into very clear focus what I will and will not tolerate in my life.

Being dismissed and diminished by someone who doesn’t seem to want to really get to know me or listen to what I have to say, is not the kind of experience I want to continue in my life. It’s just so debilitating. And it makes you want to give up. Just going through a 50-minute session with my shrink, who winds up the time trying to get me to accept that I’m just not good enough, anymore, is enough to make me want to crawl under a rock.

But I’m not going to do that. I’m going to buckle down and work all the harder. I’m going to follow through and make good on my promise. I’m going to do everything in my power — head injury and all — to live up to my potential.

And so I think about what this woman wrote, and I am comforted that at least one person in the world (other than my neuropsych) can see what we need, and is willing to offer it to us.

But I’m not afraid…

Well, it looks like I’m going to be dropping my current psychotherapist. After working with them for 6+ months, I’m seeing a regular pattern that I’m not comfortable with — every new piece of information I reveal about my past injuries and difficulties, and my present challenges, increases their trepidation about my present activities and my future prospects.

How many times can you sit in a room and have someone tell you that your hopes and dreams are unrealistic, given your neurological profile?

How many more weeks am I supposed to spend making room in my schedule for someone who actively discourages me from living my life — and paying them to do it?

Okay, granted, I do have a lot of difficulties and challenges, and no, it’s not easy. But the thing is, I flatly refuse to give in to the lot of it. I just refuse. I am not afraid to live my life, I am not afraid to stumble and fall. I am not afraid to take on new challenges and see what I’m capable of doing. I’m more afraid of never trying something, never taking a risk, never finding out just what I’m made of.

I have been injured, this I know. I have my challenges and difficulties. That much is clear. But I’m not afraid to step out and do what I need to do, to move myself along my life’s path. I have one life, and one chance to live it. If I sit by the sidelines, like this therapist apparently expects me to, I just don’t think I can live with myself. That’s not living — that’s surviving. Subsisting. And I’m built of better stuff than that.

I also have excellent resources on hand to help me along — namely, information and promising stories from Give Back Orlando and other sources — that provide me tools and orientation to get my life back in order. The vast majority of the issues I have are logistical, and if I just modify how I do things, tweak the execution a bit, I can get myself on the right track, and keep myself there.

There’s no mystery to it, no matter how mystifying the brain is. Bottom line is, my mind is what runs things, not just my brain. And when I devote more attention to being mindful, well, that solves a ton of problems out of the gate.

It’s when I’m not mindful — when my broken brain gets the upper hand and convinces the rest of me that it’s just fine, going it alone — that I get into trouble.

Real trouble.

So, my problems are by and large fixable. And the ones that aren’t, I just avoid like the plague. I delegate things to others who know better how to do them. I solicit help from people who are just dying to lend a hand. And I richly reward people with ample thanks and a ton of praise. I feed them, and they help me. And vice versa. It’s all good.

The one major problem I have, is I’ve got a psychotherapist who seems to be afraid of their own shadow. I dunno — I think within a certain context, they’re perfectly fine. At least, they were, three months ago. Maybe I’ve just grown a bit. Maybe I’ve just evolved. And their orientation is no longer helpful to me. That could be. I have been known to shift very quickly, and it wouldn’t surprise me if I were advancing in a sudden burst along my recovery.

But they don’t seem to recognize that, and they keep cautioning me against doing things like taking on responsibility and following down a career path that leads to more money. Just yesterday, they were telling me (as though I don’t know it) that more financially rewarding jobs entail more sacrifices from those who hold them. Uh, excuse me? Is that something they think I don’t know? I’m not so sure they realize who I am and what I’ve done with my life. I’m not sure they realize that it’s possible to live productively and radically well, even after a bunch of concussions. But even with me sitting right in front of them, telling them about how well I’ve been doing lately, they can’t seem to see it. Or they distrust it. Or they distrust me.

This makes me nervous. It makes me very nervous, indeed. And I woke up last night from a nightmare about a wildfire sweeping through my neighborhood, driving all these wild animals ahead of it. (Not sure how the lizards and wildcats and wildfowl got into the suburban neighborhood in my dream, but I’m sure that symbolism is all about me and the less “civilized” aspects of my personality.)

Warning bells are going off, and it looks like I’m going to be shopping for a new psychotherapist again… Fortunately, I’m seeing my neuropsych this afternoon, so I can ask them if they know anyone who specializes in therapy within a brain injury recovery context. They’re on the same page as me — totally devoted to realizing all the amazing possibilities of life, and refusing to settle for less — so I have more faith in the resources they might recommend.

The bummer is, the current therapist I have is listed as someone the Brain Injury Association in my state recommends. I’m not sure if I should mention my experience to them, as I don’t want to trash them. But if they’re running this head trip on me, what might they be doing to others?

I have to wonder.

Anyway, it actually feels good to be coming to this decision. I’ll talk it over wiht my neuropsych and see what they have to say about it, and then I’ll move from there.

{ Sigh }  This rehabilitation process can be a tiresome road at times. But it sure beats the alternative!

Onward.

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

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

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

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

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

You can read the rest of it here.

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

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

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

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

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

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

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

Protecting the ones I love… from me

I’ve been thinking a lot, lately, about how well people respond to me, when I am bold and brave and daring and don’t let anything get in my way. I seem to have a sort of mystique about me, that causes people to have innate trust in my capabilities and “powers”… even if they have only just gotten to know me.

And likewise, when I am less than my best, when I am faltering, when I am struggling with my life, and I am in full contact with my failings, people around me tend to get miffed. As though I am intentionally being that way to piss them off. Or I’m being a lazy-ass and slacking off. Or I’ve decided to intentionally not live up to my potential.

What’s more, the people closest to me have an extremely bad reaction when I don’t take the high road — they get a bit anxious and agitated, as though I’m about to eat them, or something. It’s an either-or, all-on-all-off thing with me, this adoration of my “secret powers”, and frankly, it kind of irritates me, that I’ve always got to be superhuman, or I can’t be anything at all.

Over the past week, I’ve been deliberately sticking with my mystique thing – being the bold old soul I used to be, before I had my fall in 2004, and my life went to shit. I guess I just gave up on trying to be sensitive to my own needs, and I jumped off the bandwagon that a lot of my therapist friends are on — getting into the victim mentality and concentrating on my needs… my wants… my hurts… my… my… my…

Okay, so I was a bit into that frame of mind for a while. My previous therapist was really into “helping” me get in touch with my own needs and all that, for fear that I was being trampled by the all-too-needy world. My current therapist is on the opposite end of the spectrum — they’re really into me not going off on my sore spots and getting all mired in them. I’ve been re-adjusting, over the past six months or so, and I think it’s been really good for me. Sometimes, I do wish I could get a more sympathetic ear in my current shrink, but I’d rather deal with a hard-ass than someone who coddles me and turns me into an infant, ‘cuz my inner child needs attention.

Actually, I have to say, I’m a whole lot happier now, and I’m a whole lot more functional — and leaning towards increased functionality — than I was for about a year. That whole victim orientation makes me a little nervous, and I also have to say that getting in touch with my needs is vastly overrated. To tell the truth, I’m so self-obsessed at times (I credit my right-hemisphere brain injury) that the whole rest of the world takes a back seat to my needs. The weird thing is, half the time, I don’t even realize it, ‘cuz I’m so deep in my own crap, I can’t see the fact that I’m being pathologically ego-centric. Truly, I have so many needs, there is literally no end to them… and the more I “get in touch” with them, the more I find I need, and it rapidly becomes an endless cycle of identifying my newest and most novel needs, and trying to figure out how to get them met. Which is a never-ending cycle of self-perpetuating ego-centricity of the highest order.

Sigh…

Anyway, what I’m realizing more and more all the time, is that sometimes it’s not such a great idea to focus on myself. And in fact, if I want to do my friends and family a favor, I’ll take the focus off me for a little bit. Or a lot. When I’m given free rein, I can be petulant and childish, foolish and self-serving, needy beyond words, spiteful, bitchy, cranky, and aggressive. It’s not pretty.

So, this trip I’m doing now, with being the strong silent type and holding my shit, even when I feel like I’m about to come apart inside… (which, by the way, is a trip I was on for many, many years, until some well-meaning but head-injury-oblivious person encouraged me to start thinking more about myself and consider what I wanted in life. Then, my literal head jumped on that bandwagon and we were off to the races)…  well, that old stoicism, that warrior composure, that ability to just remain calm in the midst of everything… it’s actually a very good trip, which has really good consequences, and it gets me back on the good foot, even when everything around me feels like it’s going to pot.

And this self-sacrificing trip also lets me keep my friends and family from living with a madperson, a crazy-ass nut-case who jumps at every sound and attacks their own shadow. When left to my own devices and allowed to act like a child, there’s a part of me that will jump at the chance. But when someone — like my current shrink — pushes me to buck up and grow up… well, even if that costs me my warm-fuzzy in-touch-ness with all my feelings, it does make me a better person.

And that’s a good thing.

Yes, I’m back…

Well, that was interesting…

I stepped away from regular posting for a little while, thinking that I was going to make a change (a number of changes, actually) in how and when I write, how and when I post, and what I write and post about. My motivation was the intent to err on the side of caution, as I was starting to feel, well, exposed by all these posts. I’ve shared a lot of personal information here, and frankly, it started to spook me out a bit. It’s always been my intention to speak fairly personally here, to share details about my life that might be considered “intimate” by some, but to just let it all hang out, because when it comes to personal health issues, especially TBI, there aren’t a lot of sources that speak directly to us as human beings, and put a real face on our experiences.

All too often (especially given the state of healthcare in the US at this time), we are assigned patient IDs, given little plastic cards with our numbers on them, added to hospital and clinic databases, issued either a prescription for pills or told to ‘get more exercise’ and more actively control our stress. That’s if we get any help at all. Lots and lots of us never get the help we need when we need it – or if we get it, it’s not till much, much later, after considerable damage has been done. And we’re left to struggle along, muddle through, and generally find our way by trial and error.

It’s been my hope that this blog would help alleviate some of that. Give people a bit of hope. Offer my own experiences as a resource for others who don’t know where to turn. It hasn’t been perfect, by any stretch. But as of today, I’ve had 35,928 different page views. Not bad, for about 18 months of work.

And when I announced that I was going to be shifting my focus (I wasn’t really specific), I did hear from some folks about how they wished I wouldn’t go away and quit keeping this blog. It gave me pause. And over coffee this morning, I decided, “Oh, what the hell — I’m come this far, why pull out now?”

Interestingly, a lot of the page views are for posts I wrote many months ago, so the content has value for people (apparently) beyond the immediate moment when I write it. That’s one of my goals — to have “evergreen” material here that people can find useful, even if they are stumbling across the info many months after I first wrote it. These issues of ours are, unfortunately, very tenacious, and they don’t go away.  So, as long as I’m not a complete and total narcissist about this, and do it just for ego-casting, it makes sense for me to continue.

So, given that I believe in this work, and others have told me it’s needed, I’ve decided to restore my past posts for folks who are looking for info on dealing with mild TBI or PTSD. It’s pretty important work, whether or not I’m doing it. And I realized over the past days of not doing it, how much I love it. It’s not just about me and my life — it’s about chronicling human experience and finding workable solutions to tenacious problems, to share with others.

I do love the work, so yes, I’m back.

Now, I need to tell you why I pulled away so abruptly in the first place.

There are several reasons, which are actually closely related — and everyone who does health research and posting online needs to think about this very carefully. Please pay attention to this, as it may pertain to you, as well.

First, there are basic survival issues at stake.

I’m in a position where I may need to look for a new job in another three months or so. My COBRA-supported health insurance stops being subsidized at the end of this year, which means my health insurance costs are going to more than triple.  I have been offered lower cost coverage, but it doesn’t provide ample coverage for me, and I cannot, under any circumstances, get lousy health insurance, if I’m going to continue to see my neuropsych and psychotherapist.

The job I am in now, which is just a contract, may not pay me the money I need to keep going, so that means, I need to do some hard thinking about what work I do for a living. I have been needing to branch out from what I’ve been doing, for the past 15 years, and see where else my technical skills can take me. I need to update my skillset and expand my resume and portfolio, and that takes time. It takes time to keep this blog. I have regularly spent the first hour or two of most days in the week posting here, and that is time I could be spending on developing my skills.

I have a hell of a time keeping focused and sharp. I only have so many resources, and I only have so much energy. I need to feed my family and keep a roof over our heads, and I have to take my professional performance to the next level. That means something may have to give, and until this morning, I was convinced it was this blog. I only have time for really essential things, these days — given how much longer it takes me to read and comprehend and learn and keep my act together (compared to how I was before I fell in 2004), I have to carefully pick and choose what I do, and save my best energy for my most lucrative and financially beneficial activities.

More on this later…

The second reason I decided to give up this blog, was because of privacy issues and my concerns over this information working against me in this job market.

Let’s face it, traumatic brain injury is not the sort of thing that most employers embrace wholeheartedly. It’s highly stigmatized and people just do not understand it. It’s one thing, if you’re a veteran returning from the front lines of the War On Terror, and you come back after having been head-injured in a roadside IED blast while safeguarding our freedom. That’s something that (many) people can see as worthy of respect and consideration. People support troops. They have compassion for victims of insurgent attacks — Important Note: Please don’t think I am making light of combat TBI, or assuming that every returning soldier gets the full compassion and cooperation from the normal world upon their return. I only wish it were so. — But a traumatic brain injury sustained in a car accident or a fall down some stairs or having something fall on your head is harder to explain as the serious issue it can be — especially when popular culture (including Pepsi during the Super Bowl) makes light of head injury and promotes the perception that you can just shake it off, say “I’m OK — I’m good” and everything is hunky dory.

Even if people do understand that TBI (mild, moderate, or severe) can cause tremendous difficulties at the start, plenty of folks are of the belief that things should just sort themselves out over time. Indeed, many neurologists believe just that — including one I had the misfortune to visit when I was just starting out on this serious diagnostic/rehab quest of mine.

Now, given the types of information I have posted here, and given the breadth and depth of my own issues which I have willingly and eagerly chronicled here, I am admittedly putting myself in a very vulnerable position. No joke. Every so often, news comes out of some blogger being “outed” by their hosting service, because they’ve said something that pissed off someone with a vested interest in what they were discussing. And that blogger — like Valerie Plame — is exposed and banished from their position and/or blog. Recently, a Scottish policeman who blogged very candidly about his work, was exposed and dismissed from his job, and down came the blog. Which was a loss for everyone, especially him.

I have no interest in repeating his performance. I want to speak freely and do my part to support others, but at what potential cost? I’ve got to keep the money coming in. I have a grown-up life in the grown-up world, and I have a family to support. Thinking about the possibility of being fingered and stigmatized by what folks read here spooked me pretty badly, so I decided to back off the posting.

Third, all this personal health/medical information floating around online might not be such a great idea.

I mean, seriously. This whole “Health 2.0 — community-driven health research and open-source information sharing” strikes me as possibly the worst idea to come along since, oh, the collusion of church and state. There are many health information sites and communities which give people the chance to post personal information about their health concerns as well as engage in discussions with others. Some of the conditions are serious, some of them are relatively benign. But they are all personal. And lots and lots of people are not very careful about hiding their identities when they post to them. In my visits to various Health 2.0 sites, I see a lot of people using their real names, talking about their real conditions, and I wonder if they realize their information is visible to as many people as it is — including potential employers and insurers… not to mention the government.

Now, I am not a conspiracy theorist, and I’m not the kind of person who thinks the government is out to get us all, in some Matrix-movie-type of blue-pill-induced power grab, where everyone is walking around like zombies, feeding the machine unwittingly with their vital life force. I think real life is a lot more complicated than that. But I do believe that if unscrupulous individuals and organizations have free access to lots of personal information, they have plenty of opportunity to do unscrupulous things with that data.  It’s not a question of the right people having access to the right information (like members of a forum or online community) or the wrong people having access to the wrong information (like private investigators trying to dig up dirt on genuinely injured people who the insurance company doesn’t want to cover). It’s a question of all the information being accessible to any people who care to get at it.

And believe you me, people who really want to get to it, will. It’s not that hard — either they can do it by trickery (like in phishing emails from Big Banks that have links to them pointing to some .ru website that looks really official), or they can do it by hackery. I’m not paranoid. I’m just a highly experienced information technology veteran who has been active in a highly regulated and highly sensitive sector for quite some time. Wait — maybe I am paranoid 😉 Can you blame me?

Anyway, the thought that my own personal information is floating around out there — albeit in an anonymous fashion — sorta kinda spooked me, so I yanked it in a hurry, one frantic afternoon. I hadn’t been sleeping well, I was in a lot of pain, and I was contemplating the prospect of a potential employer finding out all about me and saying, “Why the hell would I hire some washed-up, brain-damaged has-been who runs around telling everyone how much difficulty they have doing basic stuff? Where’s the ROI on that?” In my mind, my whole way of life was seriously threatened, and I had to do somethign to take the pressure off.

So, I disappeared. And I thought it would make me feel better.

But, as you can see, it didn’t. I felt like I’d abandoned my post. I felt like I’d deserted those  who trusted me, and I felt like a total loser.

So, I turned around and came back. And here I am.

I am still a bit uncomfortable with being this vulnerable, but it’s the only way that really works for me. The truth is not a simple thing, and the full range of human experience is not a cut-and-dried, clean and tidy topic. It’s messy. It’s inconvenient. It’s exposing. It’s vulnerable. And at its very best, when it’s done properly and honestly, it turns us all into deeply fragile creatures whose lives literally hang by a thread at times.

Le’ts be honest, people. The very fact that a lot of us are alive is proof of miracles. The fact that any of us emerges from the womb with 10 fingers and 10 toes and all our organs intact, is nothing less than amazing. The very fact that countless people, over the course of human history, have been terribly, terribly injured — both within and without — and yet have survived, or even thrived, is further proof that we frankly don’t know shit about how everything is put together, and trying to come up with pat answers or reduce the deepest mysteries of the human spirit to reproducible, mechanized formulas is an exercise in futility.

Certainly, we will never stop trying to decode life’s intricacies, but deep down inside, we all have to admit that there’s way too much mystery surrounding us, for any of our arbitrary rules to apply for long.

So, that being said, I’m going to reverse my former position and venture back out into the light of day with this blog. I am still very concerned by the Health 2.0 movement to get everyone to put their health information online. Google Health, and other publicly available patient records management programs, scare the living daylights out of me. And the fact that people are embracing this innately non-secure, non-private, non-controllable new trend — which can have personally devastating consequences for individuals whose privacy is compromised — worries me deeply.

But I’m still going to keep blogging. I’m still going to keep talking.  Above all, I’m not going to stop believing that the power of the mind and the human spirit can — and do — work together to triumph over the injuries of the brain.

Connections between pain and PTSD

The past couple of weeks have been crazy for me, and it’s taken somewhat of a toll. I’ve been busy with work, busy with other activities, busy, busy, and more busy. I also did some traveling for about a week to out-of-state relatives, for a big family get-together. In and of itself, it was a great time. But the change in my schedule, the long hours of driving — over 30 hours, all told, in the car — not being able to get enough sleep, and the change in food choices (how do they eat that stuff?) all threw me off, big-time.

I managed to keep it together and not completely blow-out/melt down during the trip, or immediately afterwards, which often happens when I travel to this particular branch of the family tree. But the past few weeks have been packed full of crazy-busy-ness that I now realize has been a pretty concerted effort to dull the pain of the trip.

I’m not talking about emotional pain… though it’s never easy to spend time as an outsider, when everyone else is connecting and having a wonderful time being together — I’m the oddest bird in the family, and between my difficulties in keeping up with what’s going on around me and my narrow and intense interests that aren’t run-of-the-mill, people often don’t know what to do with me.

What I’m talking about is physical pain.

Yes, physical pain — the kind that burns, that aches, that throbs, that stings. The kind that makes my clothing hurt me, that rakes my legs when my pants rub against them… the kind that makes me jump whenever someone touches me… the kind that sends a shock wave of smacking ache to the marrow of my bones when my spouse puts their hand on my forearm… the kind that keeps me from sleeping, because I can’t stand the feel of sheets on me, but I also can’t stand the feel of air-conditioning blowing across my skin… the kind htat gets worse when I am stressed or tired or upset or all of the above… the kind that I often don’t even know is there until someone makes contact with me, and I jump, and they feel like they’ve done something to hurt me. They have. They didn’t mean to, and they would never do it on purpose. But they hurt me.

It’s not just the emotional pain of family visits that gest me. It’s the physical pain, as well.

Here’s the deal — for as long as I can remember, I have had issues with a whole slew of sensory problems, the most disruptive of which was body-wide pain. I can remember, ever since I was a little kid, feeling like I was being hit, when people would just reach out to touch me in very innocent, social, appropriate ways. I would shrink back from them, and they would often take offense or get angry with me for “rejecting” them. It sorta kinda messes with your head, when the people who love you the most cause you intense pain when they try to show their affection for you. And it tends to muck up your relationship with them, when you can’t accept their (appropriate) affection, but they don’t understand why.

To tell the truth, I didn’t even understand why. It’s hard to explain, unless you’ve been there, but the experience of painful touch is such a visceral, physical thing, it sometimes doesn’t translate into words. It’s just there. You can’t describe it, you can’t even really pinpoint it. Sometimes you have no idea it’s there, until someone makes contact with you. Then, all you know is, it hurts, and you pull away to avoid it, so you can just get on with your life.

And you do things to avoid/mitigate it. You steer clear of expressive people. You avoid demonstrative friends. You always keep more than arms’ length away from other people, just in case they reach out to you. You spend time with people who either don’t like you or couldn’t care less about you, because the chances of them touching you is small to none — and it’s easier to be around those types of people, than the friendly ones who like to make contact.

These things are done on a subconscious, instinctive level, and sometimes they don’t even register with you when you’re doing them. Like pulling away from people when they come close. Like shrinking back from a hug someone is trying to give you. Like jerking away quickly when someone touches you accidentally.

And depending on how sudden or shocking the pain is, it can trigger a whole cascade of other sensations/symptoms/reactions that look a whole lot like PTSD.

Over at Helpguide.org, I found this list of symptoms

Re-experiencing the traumatic event

  • Intrusive, upsetting memories of the event — memories of past painful contact tend to show up suddenly
  • Flashbacks (acting or feeling like the event is happening again) — yes, it does feel like it’s happening all over again
  • Nightmares (either of the event or of other frightening things) — sometimes nightmares do follow an extremely painful episode, tho’ that’s rare
  • Feelings of intense distress when reminded of the trauma — yes, it is intensely distressing to be reminded of it, it just sends me in a downward spiral
  • Intense physical reactions to reminders of the event (e.g. pounding heart, rapid breathing, nausea, muscle tension, sweating) — my heart sometimes starts pounding, I tense up, and I feel sick to my stomach, when people touch me, sometimes

PTSD symptoms of avoidance and emotional numbing

  • Avoiding activities, places, thoughts, or feelings that remind you of the trauma — I tend to avoid physical human contact of any kind; women frighten me, because they tend to be so tactile, and it’s literally too painful at times, to interact with them
  • Inability to remember important aspects of the trauma — I tend to block out the particulars of painful experiences. All I know is, it’s hurt me before, like it’s doing now
  • Loss of interest in activities and life in general — Why should I get involved, if it’s just going to hurt like the dickens?
  • Feeling detached from others and emotionally numb — Oh, yes… ’nuff said.
  • Sense of a limited future (you don’t expect to live a normal life span, get married, have a career) — how precisely am I supposed to live fully, if the experience of basic human interactions promises me pain?

PTSD symptoms of increased arousal

  • Difficulty falling or staying asleep — could have something to do with my insomnia?
  • Irritability or outbursts of anger — yet one more contributing factor
  • Difficulty concentrating — it’s tough to concentrate, when you’re on high alert. Especially if you’re working with tactile people.
  • Hypervigilance (on constant “red alert”) — someone might be approaching…
  • Feeling jumpy and easily startled — but of course

Other common symptoms of post-traumatic stress disorder

  • Anger and irritability — not being able to establish comfortable human contact makes me nuts and pisses me off
  • Guilt, shame, or self-blame — why can’t I just be normal like everyone else and tolerate a hand on my shoulder?
  • Substance abuse — been there. Thank heavens that’s behind me.
  • Depression and hopelessness — my occasional visitors
  • Suicidal thoughts and feelings — once upon a time, occasional visitors. Now, very rarely.
  • Feeling alienated and alone — not just feeling… BEING alienated and alone
  • Feelings of mistrust and betrayal — it’s hard to not feel that way, when everyone around you might possibly cause you pain
  • Headaches, stomach problems, chest pain — the first two, yes. The third, not so much

So there we have it — PTSD arising from chronic body-wide pain. Painful touch. There’s even a word for it — Allodynia (meaning “other pain”) — a painful response to a usually non-painful (innocuous) stimulus. I haven’t been formally diagnosed. That would require that I talk about it to my doctor. And talking about it out loud to anyone has never really been an option for me, except for with my last therapist who is long gone by now. It’s just too painful. Emotionally and physically.

I’d rather keep my own counsel and just live my life. Pain-free. Alone, but pain-free.

Being alone not only keeps me out of arms’ reach (literally) from people who may hurt me, but it also keeps emotional upheaval at a minimum. It’s hard to get worked into a state, when you don’t have much contact with people who affect you emotionally. I can block out all the politics and social drama pretty well. But the emotional connections I have with people… well, they’re trickier. So, I steer clear of them, by and large. And I steer clear of emotionally charged subjects with people — like avoiding talking about my chronic pain issues with my doctor.

It’s wild, how emotional distress can heighten physical pain. Emotional pain sets off an alarm state with me, and that alarm state unleases a whole avalanche of stress hormones and hypersensitive biochemical agents into my system. And the buildup of all the stuff that gets “stuck” in my system does not help me. Not one bit.

Over at Healthjourneys.com, Belleruth Naparstek quotes from her book Invisible Heroes and describes it well:

Chronic Pain Conditions
This constant activation of the alarm state leads to an accumulation of metabolic waste products in the muscle fibers, and the release of kinins and other chemical pain generators in the tissue, resulting in myofascial pain and the appearance of those seemingly intractable chronic conditions such as fibromyalgia, chronic fatigue, irritable bowel syndrome, chronic headache, TMJ and more.

And because these conditions are generated in the brain stem and the motor reflex centers in the spinal column, and routed through a perturbed, automatic, arousal circuitry, peripheral forms of treatment provide only temporary relief.  Constantly activated by everyday sensory cues, normal muscle movement and spontaneous memories, symptoms grow and become more and more entrenched over time.  In other words, this is one nasty gift from the kindled feedback loop that, if not interrupted, will just keep on giving.

Our epidemiology research has already shown us an astounding percentage of people with baffling chronic pain conditions and “functional” diseases that have no obvious causes, who have been found to have prior histories of severe trauma.  Probably if we could tease out the subset of traumatized people who experienced substantial dissociation during their trauma, and a truncated freeze response in the midst of it, we might find closer to one hundred percent suffering from posttraumatic stress.  Unfortunately for them, they are often assumed to be malingering or engaged in attention-seeking behavior for neurotic reasons, instead of suffering from a very serious, self perpetuating condition with a potentially worsening trajectory.

Included in this group of maligned and misunderstood patients would be scores of people suffering from pelvic and low back pain, orofacial and myofascial pain, genito-urinary and abdominal pain; interstitial cystitis; and the previously mentioned headache, fibromyalgia (FM), chronic fatigue syndrome (CFS), and reflex sympathetic dystrophy (RSD); irritable bowel syndrome (IBS), inflammatory bowel disorder (IBD), multiple chemical sensitivity (MCS) and migraine.

And there it is — in part, anyway. The post over at Belleruth Naparstek’s blog asks Is There a Connection Between Fibromyalgia and Traumatic Stress? but it’s not just about Fibro, to me. It’s about the “and more” she mentions. It’s about the “whole lot more”.

So, what the hell can I do about this? I’m of the mind that the best reason to talk about anything difficult, is to figure out what to do about it to make it better. To reduce the quotient of human suffering in the world. That includes my suffering (I’m in the world, after all). What can I do about this pain business?

Well, first, I need to get back on my schedule. I need to get back to my sleeping routine, which I’ve been doing pretty well with. I need to get back to eating the right kinds of foods at the right times of day — and I’ve been doing that pretty well, too. I also need to exercise and do other things that will enable me to discharge some of the built-up stress from the trip. I tried explaining to my new therapist how disruptive that sort of travel is to me, but they didn’t seem to “get” the intensity of it, so I’m not getting much support there. Screw it. I’ll support myself. I’ve been having a lot of good long cries, in the privacy of my own company, over the past few days, and that seems to be helping me. I also need to get back to my regular work schedule and just get some stuff done. Being productive has a way of chilling me out nicely, so I’ll do that.

And drink plenty of water. Take some Advil before I go to sleep. Listen to the Healing Trauma CD from Belleruth Naparstek to deal with the PTSD. Have a good cry. And another. And another. And make sure I let loose in my own company, away from others who neither understand nor want to understand just how hard things are for me… and end up minimizing and negating and invalidating my feelings about what I really go through, and tell me I’m fine and I don’t have a problem and I shouldn’t worry about this stuff,  just because they either don’t have the emotional resources to hang with me, or they’d be too traumatized, themselves, if they knew what it’s really like to live in this body.

Most of all, I need to keep it simple. Count my blessings. Remember just much good there is, along with the bad. And remember, tomorrow is another day, and all things considered, I’m pretty lucky to be alive.

The perils of pseudo-psychological problems

Something has occurred to me repeatedly, over the past month, as my sleeping habits have improved. Namely, that many of the “mental health” issues I’ve been experiencing over the past several years, have had a distinctly physiological component to them. In fact, at the risk of sounding radical, presumptuous, and heretical – though I’m seldom reluctant to be just that 😉 – I suspect that a ton of my “psychological” issues have actually been physical ones.

I’m sure I’m going to really piss off some of the psychotherapists in the room by saying this, but I have to say that catching up on my sleep and figuring out how to get a full night’s sleep more than one night in a row, has done more for my mental health than two years of therapy.

And no, I did not have a bad therapist. They were great – awesome – and they really helped me a great deal, if only by sitting there and not making fun of me when I talked about this and that.

But let me tell you – as a TBI survivor who had/has a whole raft of physical ailments (chronic pain, insomnia, sensory hypersensitivities, weight fluctuations, heart palpitations, vertigo, tinnitus, and more…), just living with all those issues can really mess with your head. And as long as only the symptoms of my physical distress were being addressed, not much moved.

I did get in touch with my feelings. That’s for sure. I figured out that I actually mattered, and that it was important for me to take care of my own health and well-being, not constantly do the martyr-hero thing and sacrifice my own safety for the sake of others. I had space to learn to look at myself and my life through a less negatively critical eye and consider that maybe, just maybe, I had a right to do more that survive in life. I had/have a right to thrive.

But one of the things I really got in touch with was the fact that my physical well-being is a huge contributor to (and predictor of) how well my mental well-being holds up. When I’m tired and in pain and weak, my ears are ringing like the dickens, and my head spins wildly and I feel like I’m going to fall over every time I move, it’s pretty damned difficult to maintain a positive mental outlook and count my blessings. When I’m not feeling well physically, the chances of me feeling well mentally and emotionally decrease exponentially.

There are some people who manage to keep a cheery, chipper outlook, despite significant physical issues. I’m usually one of those  people, and I usually manage to not let my physical problems bother me. But when I haven’t had enough sleep for weeks and months on end, chances are pretty good that I’m going to feel depressed, anxious, irritable, low — and show other signs of clinical depression.

Okay, so here’s the thing — when I was in therapy with my prior therapist, they repeatedly came back to the suspicion that I was depressed. They asked me a number of times if I thought I was depressed, and if I’d said “Yes,” I’m sure they would have followed up on that, however a therapist does that. And they probably would have plumbed the depths, looking for what it was that made me depressed — some repressed past trauma, some childhood violation, some incident that I’d blocked out to keep from being unhappy.

And lots of talk would probably have ensued. Talk, talk, and more talk.

Now, talking is all very well and good, but as Belleruth Naparstek said at a conference I once attended (and I believe she’s said in her book “Invisible Heroes”), sometimes talking does more harm than good, by dredging up old traumas and forcing you to relive them. That can be very unpleasant, as I’m sure everyone is aware. And for me it’s really problematic, because I prefer to dwell on problems with a solution in mind, and if I’m dwelling on a past incident which cannot be changed (it’s already over and done), I get even more agitated and irate over it.

Some people might say that I’m just not willing to deal with the emotional fallout of misfortune, but I say I’m a solutions-oriented individual and the main reason I think about things, is so that I can change them, so why in the hell would I spend all this time thinking about stuff that cannot be changed? The therapists in the room who would say I’m emotionally “blocked” would probably try to treat me… with more talking about shit that makes no sense for me to talk about.

Make no mistake — I’m not at all reluctant to discuss misfortunes I’ve experienced in the past. But any discussion that takes place with me, has to be about devising solutions and coping mechanisms for the problems I have as a result. I’ve had some really shitty things happen to me, but you know what? It’s over, and I’ve managed to forgive just about everybody in my past for their shortcomings… even myself. The problem is not that I’m represssed. It’s that people want to process the wrong type of stuff with me — problems, problems, and more problems — and my reluctance to discuss stuff I’ve already been through a thousand times in my head is interpreted as repression or avoidance or some other psychological/emotional impairment.

What’s more, when pressed to explore the nether regions of my soul with talk therapy, I tend to get turned around. As good as I am at writing, I’m can be kind of pathetic when it comes to spoken conversation. I have an intensely visual mind, which follows conversations and spoken communication with series’ of images that are like an associational, disjointed movie in my head. I literally see pictures of what people are talking about, and when people start talking about things for which I have no picture — or I have several of them to choose from — it takes me a while to catch up and keep up. It’s not that I’m stupid. Or that I’m slow. I’m just incredibly visual in my own mind, when it comes to spoken language, and visual processing doesn’t lend itself as well to spontaneous conversation.

So, when I’m talking to someone about what’s going on with me, and they start talking about things that aren’t immediately famliar to me — or that I’m not expecting them to talk about — it’s really easy for me to get agitated and introveted. I need time to catch up. I need time to keep up. I need time to translate their words into pictures and process the information visually, so that I can make sense of what they’re saying to me. But I don’t always have that much time, and over the course of my life, I’ve gotten into the bad-but-pragmatic habit of just pretending I know what’s going on, while making mental notes in the back of my mind about what was just said, so I can go back to it later and rethink it all and hopefully make sense of things.

The problem is, in a therapeutic situation where I’m supposed to be making some sort of progress and addressing issues, this really works against me. It tends to make me look reticent and/or like I’m deliberately withholding. I’m not — I’m just trying to process the information and make sense of it. Believe me, if I could answer immediately like other people, I would. But my brain just doesn’t work that way.

I also tend to get really frustrated with myself and get agitated, which looks like I’m uncomfortable talking about certain things. It’s not that  I don’t want to let other people in. I do — more than I can say. But I get so turned around in my head, and I get so upset with myself for not being able to follow, that I start to flail and spin and then shut down. I feel like I’m getting backed into a corner, and I get revved… and by the end of the session, I look like a totally basket case who needs to spend years sitting across the room from someone, before I can get in touch with my feelings.

This sucks on so many levels, I can’t even begin to tell you. The worst thing of all is having someone who is supposedly trained and experienced in these matters misunderstanding, miscalculating, misdiagnosing, and mis-treating conditions which don’t even exist the way they think they do. On the surface, you’re exhibiting classic signs of clinical depression and post-traumatic stress disorder, but underneath it all you’re struggling for words that will explain exactly what is going on with you, and why you’re acting the way you do. And the bitch of it is, because you’re the (sick) client and they are the (trained, experienced, licensed) therapist, you’re not in a position to be taken totally seriously when you do manage to tell them a little bit about what’s up with you. ‘Cause they think you’re seriously mentally ill and you can’t possibly know what your real problems are.

After all, you probably have no recollection of what that nasty-ass uncle did to you as a toddler when your mother’s back was turned.

It’s a problem. I hear plenty of stories about therapists who don’t know  what they’re doing… as well as those who know very well what they’re up to but have no scruples or morals. I hear plenty of tales about over-prescription of medications, as well as  misdiagnosis of mental health issues that have more to do with fundamental differences of information processing, than pathology. The mental health profession has been pathologizing the diversity of human experience for as long as it’s been around — perhaps that’s a hallmark of any helping/caring profession that’s trying to get on its feet. Applying labels like “hysterical” or “deviant” or “sick” to people who are just different from the norm is a time-honored tradition in the mental health field, so there are no surprises there. But it’s a problem that’s been shifting and changing over the past 30 years, and that’s a good thing.

Now, if I can figure out a way to explain to my new therapist the nature and degree of my physical issues, so they can see my issues in light of my insomnia, pain, and physical sensitivities… and not spend an inordinate amount of time focusing exclusively on my past emotional trauma, that will be a good thing.