In denial? It might be neurological

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

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

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

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

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

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

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MTBI and mental health

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Not good.

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

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

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

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

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

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

Their lives are disordered because their brains are disordered.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I’m just saying…

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

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

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

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

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

And clients should do the same.

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

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

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


Throwing nuts at the cheetah

I had a really troubling dream just before I woke up this morning.

I was walking through the woods with two friends of mine. It was almost like a jungle or rain forest – the air was very humid and the trees were huge and spaced apart, and the forest floor was quite open — not a lot of underbrush, but springy underfoot. We were walking along a wide path that was well-worn, and we were talking about this and that. I believe we were discussing possible dangers from big cats that had been seen in the area.

If I remember correctly, the woods had been cleared of all dangerous wild animals a while back, but some big animals had escaped and had returned to their habitat, so hikers were warned to be very careful and not engage them.

We walked and talked for a while, and I was picking up stones and nuts and old pieces of tropical fruit that had fallen from the trees. I was tossing them around, and my friends were getting irritated with me. They wanted me to stop, but I didn’t feel like talking with them. They were just running at the mouth, and I was getting overwhelmed with all the words.

We were passing by an open clearing that was raised up above the path, when we looked up and saw a cheetah sitting in the sunlight. It was a beautiful animal, so sleek and strong. It also looked very dangerous and wild. My friends said we should walk by it slowly and not bother it. They were both terrified of it.

I was thinking that I knew how to deal with a big cat. I’ve learned (for real, not only in the dream) that with big cats, if you come across them, you have to face them down. Make yourself as big as possible and stare them in the eye. You cannot show any fear, and you cannot turn your back on them, because when they hunt, they go for the back of their prey’s neck. If you do show them fear, or you turn your back to them, they instinctively attack and go for you. This is why joggers and cyclists are often attacked by mountain lions in California — they have their back turned to the animal or their heads are down, exposing the backs of their necks, so the big cats attack.

I wasn’t afraid of the big cat, and I felt like I needed to show it who was boss. I also felt a kind of rush from the imminent danger — Here was a cheetah! A big cat this close! We were in danger for our lives! I felt that familiar rush of adrenaline that sharpens my senses and pumps me up and makes me do things that I would not do under normal circumstances. Something in me surged with daring, and I took a nut I’d been holding and threw it at the cheetah. I felt a thrill of danger course through me, and I cursed myself for having thrown it at the cat. The nut bounced near it, and the animal flinched, and it looked like it was going to back off and leave us alone. My heart was pounding and my mind was calculating what I would do in response to it. I was watching it very, very carefully, to see what it would do, and for a few moments, it looked like the big cat was going to withdraw into the woods and leave us alone.

But then my friends got very frightened that I’d thrown the nut at the cat, and they started to freak out and panic. My one friend started to shake and quiver, and my other friend, who is a bit overweight and doesn’t move very quickly in real life, took off running down the trail. In my dream, I was thinking, “What are you doing?! You’re going to catch its attention! Why are you running from a cheetah? You can’t outrun it! You have to stare it down. You have to stand your ground!

I looked up at the big cat and saw it had suddenly spotted my friend. in an instant, it recovered its composure, sprang into action, and raced after my friend. It looked so beautiful in motion, all its sinews taut, its coat shining in the sunlight that filtered through the canopy above us. But my admiration was short-lived, as it caught up with my friend, grabbed them by the back of the neck, and started to run off with their body dangling from its jaw.

Frozen with horror for a moment, I took off running after the cheetah, yelling at the top of my lungs and willing myself to run faster. I was convinced I could catch it and wrestle my friend from its grip.

The big cat was very fast, though, and it was way ahead of me, with my friend’s body hanging from its jaws. I was horrified and mortified, and my other friend was screaming at me for throwing the nut at the cheetah and making it angry. In my head, I was trying to calculate how far the cheetah could get, carrying my friend’s heavy body, if I could catch up with it because it would be slowed down by the weight, and if I could get to it in time to save my friend. I suspected that my friend had been killed instantly, or that even if I did catch up, the cheetah would be eating them, so there wasn’t much point in my running after them.

Plus, I ran out of steam after a few hundred yards, and I had to stop. I was so upset at what had happened. On the one hand, I was upset with myself for throwing that nut, but I was also upset with my friend for not having better sense, and I was upset with the whole chain of events that was probably killing my friend.

I woke up very disturbed around 5:00, and I haven’t been able to get back to sleep.

I think that this dream has something to say about a lot of aspects of my life, these days. I have a lot of people around me who are very frightened for me, as I talk to them about my TBIs and the issues that go along with them. They’re like the friends in my dream, who just want to walk along quietly along a well-worn path in the woods, chatting about this and that, not really bothered by anything… cognizant that there are things amiss in the world, but not really eager to confront them.

There’s also a part of me that’s like that. I don’t want to be bothered by dangers in the woods. I want to just go along my merry way and not have to expend a lot of energy on things like dealing with large dangers that I come across.

But there’s also a part of me that gets bored with all that safe stuff, and I need to occupy myself. So I do things like picking up rocks and nuts and old pieces of fruit and tossing them around. I get bored pretty quickly, so I start casting about for new things to learn and do.

And sometimes my casting about uncovers big dangers along the way. Like this diagnostic imaging I’m going to have done — an MRI this weekend, and an EEG in another week or so. Who knows what will be uncovered as a result of that? Sometimes I cast about a bit too freely, and I can end up stirring up things that are unexpected and potentially dangerous… but are actually authentic pieces of my human experience.  (The interesting thing is that the cheetah in my dream actually belonged in the woods — it was its home, and it had just returned to its rightful place.)

Sometimes I cast about too carelessly, too — like tossing a nut at the cheetah. Or, I take a calculated risk and push the limits. In my dream, I didn’t just toss the nut at the cheetah for fun — I did it partly to show it that I meant business, and I wasn’t intimidated by it. I also wanted to scare it away. And it almost worked. But my friend with the weak nerves had to take off running — doing exactly the wrong thing, in that situation. They didn’t have the same information as I, apparently, and they let their fear get the best of them. And then all is lost.

This is pretty significant to me, in my real life experiences with others, because as I move forward, I’m going to have to educate the people around me about my condition(s) — TBI, etc. — so that they learn how to respond appropriately to the situation I’m in. I really don’t need them to freak out and get all worked up over things that A) we don’t know for sure, or B) are big and dangerous but are totally manageable with the right information and the right team of caregivers. I don’t need them to lose it and put themselves — or me — in danger. I need them to be cool, be present, be able to help in a substantive and constructive way.

As I go through this next phase of diagnostic testing — maybe it will show something, maybe it won’t — I need to keep my head on. I need to take care of myself and take things slowly, and not only know why I’m doing what I’m doing, but be clear with others why I’m doing it. Everybody needs to be in the loop, and that includes the parts of myself, too, that are prone to freak out and make poor choices out of fear, rather than knowledge and courage.

But at the same time, I also need to be cognizant of my tendency to court danger, as some kind of reflex, some inner/neuropsychological/biochemical need to sharpen and brighten mylife experience… to wake me up and keep me engaged in life. I need to be aware of my tendency to overstep my bounds, when I’m bored or tired or in need of some stimulation. I need to remember that, when it comes to taking on new challenges, I’m not always as smart as I think I am, and I’m not always up to the task of overcoming what I’m presented with. I can’t afford to forget that I rarely know as much as I need to know — either about myself or the situation I’m presented with. In my dream, I couldn’t chase down the cheetah, once it had hold of my friend. And I can’t always overcome my cognitive and behavioral issues as well as I’d like, once they take hold of me and get a ‘running start’ ahead of my logic and innate abilities.

When (not if) I meet a proverbial big cat on the path through my own “woods,” I need everyone with me — the parts inside and the people outside — to remain calm, make informed choices, and keep their heads. I need to focus on the basics — take care of my body and my mind and my spirit, with adequate rest and activities that feed and sustain me and build up my strength (not to mention common sense). And I need to be aware of my limits and not push them carelessly just because I need a thrill. I need to be aware that I do have a tendency (perhaps thanks to my PTSD) to court danger, just to feel awake and alive. And I need to remember that I’m much more use to my friends and family alive and healthy, than injured or dead. No matter how dangerous a situation may seem, the right information and the intention/willingness to intelligently proceed in the proper way can mean the difference between keeping on my path and making progress, and disaster.

Note to self: Get plenty of rest over the coming days and weeks. You’re going to need it, to do a decent job of handling all this.

Watching Kung Fu Movies and Wondering…

One of my favorite things to do as a teenager, was watch Kung Fu movies on rainy Saturday afternoons. I had an active childhood, so if the weather was nice, I was usually outside. But on rainy days, the next best thing to be running around raising hell, was watching other people do it — and with poorly synchronized dubbing.

I just loved those movies, and I watched another one last night.. while eating Chinese take-out, which was perfect.

Now, it’s Saturday afternoon, and I’m hankering for watching more.

And thinking back to the movie last night, I remember noticing how very many times people in the movie got hit on the head, smacked in the face, pounded and knocked around. They all got back up immediately, of course, and went right back into the fray. And their characters never seemed to show any sign of diminshed capacity after their rigorously violent battles.

I enjoyed the movie, but I found myself cringing a lot while I watched. Knowing what I know about brain injuries and how even a minor impact can cause larger problems on down the line (which is a lot more than I knew when I was a kid), I have to wonder if it’s really such a good idea to consider that sort of thing “entertainment”.

Still, I must admit that I really do enjoy watching the fighting. The choreography. The physical prowess. The warriorship. It’s very cool. And I have to wonder, at the same time, if head trauma isn’t actually just a part of the human experience that we somehow have forgotten how to accommodate or heal in our modern society.

When I think back about the past 10,000 years of human history, I come across a lot of warfare and conflict… burning and pillaging and pitched battles… invasions and conflicts… many of them hand-to-hand, not conducted at a distance with computers and remote controls. If you think about it, human history is full of head trauma, from the injuries sustained just by working jobs of hard labor — as in, most work that was done, until about 50 years ago, when so many of us migrated to inside work — but from fighting and falls and accidents and warfare that just kept coming in waves and waves of invaders.

Truly, human history has been fraught with head injuries, and the complications therefrom have probably  had a greater impact on our species’ experience than we realize.

That being said, I have to believe that head injuries are meant to be survived. If they weren’t, we’d probably all be dead — or would have never been born.

I mean, think about it — how many soldiers have come back from how many wars, with headaches and cognitive issues and mood disorders and PTSD, and still got re-integrated into society? I can think of a lot of WWII and Korean War veterans who did. In fact, I suspect that the elder generation of soldiers had a far higher incidence of head injury than they let on. But because of their cultural training and expectations, they didn’t let on. I’ve known WWII veterans who — upon close scrutiny — had the hallmarks of TBI. And yet, they participated in society, married, raised kids, had careers…

And how many children throughout history were beaten by other kids or adults, or had falls or accidents… sustained head injuries, went on to lead regular lives? Lots and lots, I believe.

Like the fighters who were on my t.v. screen last night, I’m quite sure that many, many people throughout history have had head injuries, but continued on in spite of them. Some may have fared better than others — I’m sure of it. But they fared. Hit on the head or not, they fared.

And so do I.

But still, I don’t go looking for a fight.

And I can’t help but cringe, when someone lands a hard punch and knocks someone out.

My mission for this blog – and our veterans

Well, Veternan’s Day came and went without my blogging about it, and I regret that.

In truth, I was all caught up in my own pity-pot, feeling sorry for myself and all the difficulties I’ve been having, lately. I’ve been dealing with some unexpected health issues, and I’ve been tired, so I let that get the best of me.

To all the brave wounded warrriors and able-bodied veterans and active soldiers of our great nation, the United States of America, I offer my most sincere apologies.

And I offer you my thanks and deepest gratitude. There are no words to express how much I value your commitment and valor and tireless sense of duty.

I must  — we must all — never forget that no matter what our difficulties in this amazing country of ours, countless committed, courageous individuals have made tremendous sacrifices of life and limb and mind and body and heart and soul to let us all have those difficulties in the protection and safety of a country where we can actually turn things around — both for ourselves and others.

This is America. There is no end to our story.

That being said, I am renewing my commitment to this blog, especially for the sake of our soldiers. In the course of my life, those who have been kindest and most courteous and most helpful to me, have been either active or former members of the armed services. The co-workers who most quickly went to bat for me, when I was down, were former soldiers. The colleagues who held their own the best and worked with me most closely as vital team members, were often from a military background. The most open-hearted and dignified and courteous and considerate co-workers I’ve had, hailed from the Service.

My life has been personally enriched by these individuals, whom I’ve been honored to work with.

Now, as so many return to this civilian life and struggle with the aftermath of blasts and head injuries and other neurological issues that are all too seldom recognized, diagnosed, and properly treated, I must do something. As a long-term multiple TBI survivor. As someone who knows what it’s like to not have anyone understand why you’re having such a hard time at such “simple” things. As someone who knows from personal experience that it is possible to survive hidden injuries, it is possible to live a good life even if your brain doesn’t work right, and it is possible to give and receive love and support in the world and have a future… even if the rest of the world doesn’t believe you do. What do they know, anyway?

I can’t do nearly as much as I’d like, but I can do this thing called, talk about my life. And so I shall. Because the men and women who make the ultimate sacrifice for us, deserve far more than they’re receiving — and that includes information.

So, if you’re an active duty soldier or a veteran or you live with or love someone who is, I offer this blog to you in hopes that you can see past the darkness that may surround you and see there is light ahead. It may be a ways off, and it may not be very visible right now, but it is there.

I wouldn’t be here, if it weren’t.

I have started an art gallery to explain my tbi experiences

In the course of working through my tbi issues over the past year, I’ve realized that words alone aren’t always the best way to communicate what’s going on with me. I grew up in a very verbal household — both of my parents are avid readers, and I was often found with my nose in book. I never thought of myself as an artist — my younger siblings were the “artistic” ones. I wrote stories and I focused more on words (perhaps because the act of hand-writing uses parts of the brain that are related to impulse control, and I instinctively new I needed to develop that part of my brain).

What I didn’t realize (till my mother told me within the last year) was that as a child, I had a very advanced visual “intelligence”. I drew pictures as a young kid that incorporated elements that weren’t usually seen until later in one’s development. In some ways I was a prodigy… but I think that changed, when I started to have head injuries… so that my skills and abilities were hidden behind the difficulties I had, and they were not actively developed.

In the past year, I’ve found myself drawing and painting A LOT. And I’ve found that when I draw and paint, I am actually better able to think about certain things, than if I just use words. I’ve also found myself remembering events from my life that had escaped me for many years. There’s something about the color and shapes that triggers my memories. And it also brings up a lot of emotion.

I’ve started an Imagekind Gallery (tbi-survivor.imagekind.com/art/) where my artworks can be found. I only have one piece up there, right now, and it shows how I see my back yard. But there will be more coming.

I’m pretty excited about this new development — both as a way for me to express myself and show the world I live in, and to help educate people about what it’s like to live with the after-effects of mild traumatic brain injuries.

Imagekind offers prints of my work on paper and on canvas. I hope you’ll pay a visit.

Catching up with myself

It’s been a while since I last posted… there’s been a lot going on with me, actually. I have been seeing a doctor regularly for neuropsychological testing, as well as other physicians like neurologists and my general practitioner, to follow up on other health issues. I have more appointments scheduled to check out some issues that I’ve been having for a long time — and I believe are tbi-related — but I never realized were part of a larger pattern, till the past year or so.

It’s been very frustrating for me, because

  1. I’ve had a lot of trouble identifying the true issues, starting with even realizing that I had them to begin with.
  2. It’s hard for me to talk out loud about things I can conceptualize in the privacy and quiet and safety of my own mind — somehow the words don’t do justice to my thoughts.
  3. Talking with doctors and interacting in that power relationship is very stressful for me, which makes it even harder for me to express myself.
  4. People don’t like to think there’s something wrong with me — they don’t want to believe that someone with my intelligence and insight and humor and kind manner and talent and abilities might actually have something wrong with them. Even doctors get scared by that prospect, I’ve found.
  5. I don’t have medical records of my injuries. I’m one of those tbi survivors who people thought would just get over the falls, the accidents, the blows to my head, when I was a kid. And even when I was in charge of my own health and well-being, I never put two and two together to get myself to the doctor and seek help. Now, my doctors are faced with a lot of unknowns and a lot of guesswork — which they hate! — about what’s going on with me.
  6. I don’t know how to ask for help. My parents and teachers and authority figures when I was growing up never got me help for my problems, I don’t think they ever realized that my injuries might be the cause of my bad behavior (no, I wasn’t just being bad all the time! I wasn’t just bad seed, the “bad apple” in their barrel of kids — I had neurological problems that needed to be addressed!) And since I was raised in an environment that relied on discipline and force to keep me in line, I never was able to see that my issues were due to actual physical injuries, rather than some character defect. I thought it was me that was defective, rather than the processes in my brain. So, I’ve tried like crazy over the years to avoid any sort of detection and avoid drawing attention to my needs and limitations.

But while I can’t do much about most of the points above, I can do something about the last one. I’m actually learning to ask for help! I’m learning to figure out where I’m falling down (using my self-assessment sheet and other check-in approaches), and I’m learning how to express to others what my needs are, getting past the shame and horrible feeling of being so friggin’ deficient.

Yes, I’m learning to ask for help. And I’m learning to talk to doctors. Which is a big change for me. All my life, I’ve avoided them like the plague — in large part because of my communication issues. And because I never wanted anyone to know I was in the level of trouble I was in.

A little progress at a time. It’s slow going. But at least my various doctors and I have all agreed that I do have issues… which is a big step, compared to where I have been in the past, when my issues were not as pronounced, and I frankly didn’t have a clue why I was doing the things I was doing — like being unable to get going with things I needed to do… being unable to follow conversations… being emotionally volatile and tired all the time… I could go on, but I get tired just thinking about it 😉 I really need to finish this post…

The view of my back yard has changed…

my back yard

You can buy a copy of this piece at my gallery at Imagekind – click here for prints on paper and canvas

One of the things I’ve noticed, this fall, is how much my relationship with my home has changed. When I first moved into my house in 2002, I was rarin’ to go… really pro-active with everything. I worked at a pretty intense pace, getting the place in order each season. I seeded the lawn, mowed it every other week in the summer, fertilized it, put down lime, mulched the shrubbery, kept things neatly trimmed… I split a lot of firewood and really went hog-wild with cutting up fallen trees and stacking the winter wood supply… I tidied up the flowers and plantings… I fixed things around the house… I constructed different fixtures I needed… I was quite handy and used my carpentry tools regularly. And I used my workshop in the basement a lot. I kept on top of all the repairs that needed to be done, and I called workmen to do work I couldn’t handle.

Since my fall down the stairs in 2004, however, a lot of that has changed. One of my 2-1/2 baths is completely out of commission — falling apart, literally — and I haven’t used it in almost a year. The electrical wiring in my dining room is funky and I’ve stopped using the overhead light. The outside light to the back stairs is not working, and hasn’t been for some time. The trees need to be trimmed and cabled, but I haven’t made the call. I haven’t been keeping up the outside of the house, doing the same level of upkeep. I haven’t been chopping wood. I have even forgotten to cover piles of perfectly good firewood, time and time again, to the point where much of it is unusable now — a total waste. My yard is suffering, the plantings are just running wild, the ticks in the grass are out of control, and frankly I’m lucky to have gotten any leaves up last year, at all.

It’s quite dismaying, when I think about it. It’s just not like me. And I feel that loss of my old self quite keenly.

But there’s a big part of me that just doesn’t care. That part of me looks out at the yard (which isn’t horrible looking, by any stretch, but still needs help) and just notices that it needs help. It doesn’t actually want to do anything about it. I work around the lighting issues in the dining room and the back stairs, using lamps and lanterns instead of the light switches.  All the repairs that need to be done just have to wait, as the part of me that’s usually motivated to do something about these things just tries to get through the day.

Truly, even the most basic things — like getting up and out into the day — are so much of a challenge, I just haven’t got the energy to tend to other things. It’s such a challenge to just get to work, do my job, and then come home, that the extra stuff like raking and calling contractors and fixing and patching and hammering and what-not, just tend to fall by the wayside.

But as I’m increasingly aware of these things, I find myself better able to deal with them. Like when I do my self-assessment sheets, and I check in about how I’m really doing… if I’m angry, if I’m anxious, if I’m distracted, if I’m tired, what kind of headache I have today… when I take a look at myself and my life and it sinks in about what I need to do, then I can start taking some action.

I just need to be aware. i just need to watch my energy. I just need to sleep when I need to sleep, and not worry about it. And I need to ask for help, when I need it.

Because I do need help. And there’s no shame in that.

Invisible Me – The interactive dynamics of a doubly-hidden disability.

Hidden disability is an “interesting” phenomenon. On the one hand, a person can have real and serious issues with interacting with the world around them, be it due to a neurological issue or a physical one. But on the other, the rest of the world cannot see what’s going on, and because people tend to be very visual — especially when they first meet someone — and they work off visual clues to figure out how to interact with someone, if they cannot see your difficulties, they may have a hard time:

  1. believing you have something going on with you
  2. figuring out how to interact with you effectively

I have heard of an individual who was legally deaf — couldn’t hear a thing — but had become so adept at reading lips, nobody believed they were deaf when they first met them. And stories abound about people who are autistic or have some learning differences, who are not recognized as having difficulties by the mainstream, and so cannot get the help they need.

Having a brain injury can be about the most extreme form of hidden disability I can think of — and that’s not just because I’ve had ’em. Think about it — the brain is something we ALL take for granted. It’s perhaps(?) THE most important organ in the body, when it comes to regular functioning. Yes, you need properly functioning lungs and heart and other internal organs to stay alive. But the brain is what pulls it all together and keeps us off life-support and a (semi)vegetative state.

Our brain is what makes us human, in my own estimation.

And yet, we know so little about it. I’m dumbfounded by the degree of ignorance that prevails about how our brain works and what it does. We all have one, we all rely on it, we all use it constantly. Yet, how many of us truly understand our own brain? And how many of us are prepared and equipped to explore its inner workings? It just amazes me, that we don’t know more about it, in this age of digital imaging and info gathering. We can collect moon dust and photograph stars and new planets in distant galaxies, but we don’t know how our friggin’ brain works? What’s up with that?!

Anyway, I’ll redirect my outrage, now…  Hmmm… what would be a more productive use of my energy? I know — I’ll get back on topic! 😉

Anyway, when the brain starts to malfunction — especially after a relatively long time of behaving normally — things can get very difficult, both inside and outside. The rest of the world can’t necessarily see that you’ve got hurdles to cross in your daily life — cognitive issues, physiological issues, emotional issues… And when you slip up, people can be pretty hard on you. If they can see that you’ve got a limp or you’ve lost an arm, they can adjust their interaction with you (tho’ lots of people don’t do a very good job of adjusting in a positive way, and some mean-spirited people just use that as an invitation to be cruel or ignorant). But if they can’t see you’ve got issues, then your interactions with them can become… well, problematic.

Now, let’s add to that mix some of the interior problems that come with having an impaired brain.

Take, for example, the condition called “anosognosia“. This really fascinating condition is literally not knowing that there is something wrong with you. The injured brain doesn’t register that there are difficulties in its experience. It won’t realize that, for example, the left side of the body is not moving, that you’re not taking care of one side of yourself, that you cannot do certain things, that your judgment is impaired… all sorts of things can slip through the cracks of an injured brain that’s “anosognosic” (I think that’s how you’d describe it). It’s a pretty common, but not very well-understood condition that some people are studying and have written about. One of the folks I’m a real fan of is George Prigatano, M.D., who (I believe) works out of the Barrow Neurological Institute in Arizona. He’s written a fair amount about anosognosia, and I really like his style. He also seems like a decent fellow — from his photo and his writing style. (Then again, as with most things, I could be wrong — my brain could be playing tricks on me)

So, when your own disability is hidden even from you, it can make things really interesting… frustrating… confounding… infuriating… confusing… amusing… hazardous… adventurous… you name it. With brain injuries, everybody in the mix can be at a loss about what’s going on with you, and how best to handle things.

I’m thinking in particular about many conversations I’ve had with people over the course of my life that went very badly due to my penchant for confabulation. Confabulation is when you get the details of a story wrong, when you think you’re getting it right. You think you’re being 100% accurate, but you’re actually missing important details, getting them turned around, or whatever. I would be talking to someone and I would get the facts and figures turned around — like times I was at a place… or things I did… or people I saw… or the progression of events. I would get so turned around, without even knowing it, and by the end of the conversation, I sounded like I was either a pathological liar, a fabulist, or I was trying to impress them with bogus information.

All I wanted to do, was relate an interesting story or tidbit, and I ended up looking like an idiot.

Now, until about a year ago, I had no clue that the head traumas I’ve experienced over the course of my life had affected me the way they had. I didn’t realize A) that I had issues, and B) why that could be. I figured I just wasn’t trying hard enough to think things through, and I really beat myself up over this stuff a lot. No one else realized that I sustained multiple tbi’s, either — it wasn’t something I talked about, and it wasn’t something I thought was worth mentioning. And no one around me seemed to realize that my confabulation issues were possibly neurological, and not character-flaw-based.

So everyone in the mix — myself and others — went around with the belief that I had trouble telling the truth at times. And that’s a hard thing to bear. Especially when you don’t mean to mis-speak.

Yes, the doubly-hidden disability of brain injury can complicate things in so many logistical ways, when it comes to interacting with a world that cannot see the problems you’re having… and you yourself cannot tell what the problem is (if you can even tell there is a problem).

In my case, my problems are often not obvious to everyone around me. I they “seem fine” but I’m not processing information as fast as everyone around me. I tend to think visually, using pictures and “little movies” of past experiences to understand what’s going on around me. And that visual processing — while it’s more in-depth and full-spectrum than purely verbal thinking for me — takes longer than just thinking in worlds. Or I might be having trouble with sensory processing — when I’m not able to tolerate the lights/sounds/smells or other stimuli that everyone else is fine with, and I can experience a lot of distress that others cannot relate to because they just don’t have that experience. If you have light sensitivity or you’ve got high tactile defensiveness, you know what I’m talking about. If you seize when you hear certain sounds or smell certain things, you now what I’m talking about. But most of the neurotypical world, which isn’t subject to such disruptive experiences, may not be able to fully grasp what it’s like, which makes it hard to figure out how to relate to someone like me.

But how does it look?

I’ve been thinking hard about how to express the dynamics that take place between a person with hidden disabilities interacts with the ‘normal’ world. A picture’s worth lots and lots of words, so I’ll try to illustrate. Using my own experience as a guideline, here’s how I conceptualize my own situation:
invisible me - I'm on my own

I’ve got all these different internal parts of me that are unique to me and that take up space in me. They aren’t ALL there is to me, but they are significant parts. Things like mood volatility (lability). Things like slowed mental processing speed. Things like non-verbal social communication preference and difficulty decoding auditory input. Things like not being able to take a lot of noise and light. Things like needing to rest more than most people I know. They’re not bad things, per se. They just are. But they do make up a substantial part of me.

Now…

Enter the world…

invisible me - the rest of the world shows up

People around me have a different “color” to them, a different “shape” to their lives. They seem different to me, and while I recognize them and relate to them as other forms in the world, they are definitely different than me. Of course, everyone outside of me, being “shaded” they way they are, with their own “hues” of perception, have plenty in common with others, but they don’t always realize that I’m not like them.

And so they tend to encroach on me…

invisible me - the rest of the world encroaches on me

I don’t think they necessarily mean to encroach on me and impose their own specific sensibilities on me, but that’s what they do. I think that’s what most regular people do with everyone they meet. People need to feel included. They need to feel like they’re part of something. They need to feel a connection with others. There’s nothing wrong with that — it’s one of the things that makes us human, and it’s good. But a lot of times, in their intention to include others in their circles, they jump to conclusions about how other people are — how they should be — how they can be. How I should/can be.

They make a lot of assumptions about who I am and what matters to me, and what I want to do with my time and my attention. They tend to impose their views on me, thinking that I’m just like everyone else. What they don’t see, is that the shapes that make up my inner life are not shaded like theirs with the same hues. I am a “different color” than them, but because I don’t have the same hue as they, my own personal “flavor” of personality is invisible. And they don’t realize I’m not like them at all.

But I do.

And sometimes I need to “take my space” and carve out a piece of the world that is mine, all mine.

invisible me - I carve out my space and say what isn't me

I am often so busy trying to decode the sensations and stimuli and hidden clues of the world around me, that things like politics and economics and gossip and star-studded newscasts are either too much for me to take, or they’re so extraneous and irrelevant to my daily functioning, that they’re an annoyance at best and a draining distraction at worst.

I just have to block it all out, to remember who I am, and keep on top of my processing and functional difficulties… to just maintain a daily way of life without becoming completely exhausted and depleted, and then screw up my life all over again.

So, sometimes, I have to just come right out and tell people, “I don’t understand a word you’re saying.”

Or… “I would like to join you for drinks after work, but I’m exhausted. Yes, I know it’s only Thursday, but I’m really beat.”

Or… “I know you’re really excited about seeing that movie on opening night, but I can’t take being in a crowd of people waiting in line for tickets… and then being in a closed dark space with lots of different smells and sounds for hours on end.”

Or… “I have absolutely no interest in what you’re discussing. I really don’t care about American Idol, I really don’t care who gets voted off the island, I really don’t care about someone’s clothes, I really don’t care about their hair. I don’t care who is best-dressed and who is worst-dressed.”

Of course, this doesn’t always sit well with the rest of the world.

Sometimes people react with surprise. Sometimes they react with offense. Sometimes they’re amused and have to admit they secretly agree with me. But whatever their reaction, I can tell that it sets me apart from them.

invisible me - the rest of the world gets pissed off at me

Regular people who aren’t dealing with disability, I’ve found, sometimes really dislike being told that their pet peeves and attachments are not essential to me.

They may feel invalidated, and they don’t like being invalidated.

They don’t like being excluded from the world of others — from my world. They want to interact with me, but I just can’t…

They don’t like feeling dismissed, and sometimes when I brush them off they seem to feel that way. They don’t realize that I just don’t have the bandwidth to be interacting with them the way they need me to.

And some especially insecure folks really dislike having it brought to their attention that they are not necessarily in the right all the time, and some people have other things to think about, than all the stuff we’re fed on a regular basis through the news and media.

So, people tend to get mad at me. They get upset that I’m not validating their fears and insecurities. They get upset that I’m not participating in their conversations. They get tweaked that I’ve got other things to think about than American Idol and Survivor and the Atkins Diet. They can’t see why I don’t compliment their car or their clothes or their job title.

It’s not that I don’t want to — well, sometimes I don’t — it’s that I am trying to keep myself stable in a world that constantly bombards me with all sorts of stimuli that I have a really hard time managing. People look at me and think, “They’re so together… they’re so mellow and calm and intelligent and thoughtful… ” And they interact with me as though I had everything together, because they cannot see the frayed wiring in my brain, they cannot detect the subtle clues that I’m having trouble with my sensory input, they cannot see the intense pain that simple contact with my clothing causes me. They cannot see the pain in my head that never, ever goes away.

They have no way of knowing what difficulties I’m having, and if they did, it would probably freak them out. If people knew half of what my daily experience is like, I suspect they would weep. I’ve done my share of weeping, but it’s not the most productive use of my time. I have a life to live.

And so I capitulate.

For the sake of navigating the seas of social interaction, I pretend to care about the details of their lives. I pretend to care about their hobbies, their travels, their children, their houses, their pets. I pretend to care about the stock market. I pretend to care about the election. I feign interest in their lives. I mirror their statement with carefully re-phrased repetitions of what they say to me.

invisible me - what happens when I cave to the pressure

It’s actually quite easy to do — all you have to do, when someone says something to you, is repeat it back to them in a different words, with a “punch” of positive emotion that validates them and makes them think you’re on the same wavelength as them.

Case in point:

Guy on the street says, “Hey – did you see the game the other night?”

I say, “No, but I heard about it.” (which is true, because he just mentioned it)

Guy on the street says, “The team is doing great this year!”

I say, “You bet! They’re kickin’ ass!”

Guy on the street says, “We’re going all the way! Can you feel it?!”

I say, “Go Pats!!/Go Lions!!/Go Bears!!” or “Go ________ (whatever team) is local!!!” and I give it a real punch, to make him think I’m totally on board.

Guy on the street goes his own way, feeling like he’s just had a personal exchange with another fan, and I go my own way, having had a successful interaction with someone who needed to connect with someone.

I don’t do it to deceive people. I do it to let them feel like they’re participating in my life. In some cases — especially if the interaction feels a little edgy or dangerous — I do it to assuage them, to pacify them, to make them think I agree with them, when to disagree might result in an argument — an argument that I cannot and will not win, and which may get me in trouble.

It’s not 100% socially accurate, but it works. They’re happy, I’m off the hook.

But in a more in-depth relationship, in my closer friendships and intimate connections, following this strategy compromises the parts of me that are true to me. It’s one thing, to have a casual conversation with people on the street whom I’ll never see again. But in my real life, in my deeper life, in my genuine life, this strategy just works against me, and I lose out.

When I “act the part” that other people expect of me, the parts of me that need special attention, the parts of me that are different and unusual and full of nuance, can get blurred and full of noise. And the parts of others that I try to emulate, as I’m pretending they’re part of me, are just blurred and full of noise

Ultimately, in the end, who is truly served by my attempts at simulating normalcy? In the outside world, it may serve to keep me safe and buffered from the dangers that come from being radically different and deeply defenseless. But in my real life, the up-close-and-personal sides of me, all that is achieved is that the folks around me who cannot — will not — recognize my differences, are placated and appeased and made to feel a little less uncomfortable around me, while I am left at an internal disadvantage in the world.

What I’d really like most is this:

invisible me - what I would like most

That is, for people to recognize there are radical differences within me that prevent me from being just like everyone else… and for people to realize that every “normal” person has within them some aspects that are similar to me, that make them different from the norm. My differences do not make me a threat to others. My different information processing speeds and methodologies pose no danger to others — if anything, they actually help. And my sensory issues, while they are at times problematic and can exclude me from living a full life, heighten my abilities to detect certain details that just fly by others. My on-again-off-again coordination issues may disqualify me from professional sports, and they may cause me to knock lots of things off counters and break things I just try to pick up, but there are also lessons to be learned from slowing down and not flying around at a break-neck pace.

Ultimately, in addition to my accommodating the rest of the world by adapting myself (however superficially) to it, I would also like the “permission” and ability to carve out a space for myself in the world that is truly genuine and authentic to who and what I really am — a mild traumatic brain injury survivor whose experience is atypical and whose abilities vary from the norm. I want the right to express myself and my talents and my abilities in a way that is true to me and my essential nature. And I’d like others to find within themselves the parts of them that are not “normal” — and come to accept and integrate them as a regular part of human experience.

We all have differences, we are all varied creatures on this good earth. We all have our secrets and our hidden abilities and disabilities. My deepest hope is that we may someday create a world where all of us are able to participate in ways that make the most of our abilities and shield us from the pressures to compromise our safety and overstep our common-sense boundaries, in order to appease others or fit in with a world that cannot accept our warts along with our beauty marks.

I want a world without narrow-minded judgment… a world that has the good sense to find the best in each of us and bring that out, while forgiving us for our limitations. I want a world that cares more about its own survival, than keeping up appearances. I want something real. And I want something dignified. For all of us.

Call me crazy, but I don’t think it’s too much to ask.

How I figured out something was REALLY wrong

Yes, I picture’s worth a thousand words… Here’s a graph of what happened to my financial situation, after my fall down the stairs (I hit the back of my head on the top 3-4 stairs) in 2004:

The interesting thing about this is that I never fully realized that there was something really really wrong with me, till I looked at my finances in 2007. Prior to that, I had thought that the problems I was having with my moods, my temper, my attention, my sleeping patterns, my pain… welll, everything… were due to things outside myself.

I literally thought that it was other people who had the problem. Or, it was just job stress. Or it was an unhappy childhood. Or I didn’t realize there was something wrong at all.

But then, in 2007, I looked at my finances and I realized that something was very, very wrong. I, who had been in the financial services industry for a decade or so, who was studying to become a financial advisor, who had been all about money for years and years and years… who knew about all sorts of common sense investment and savings vehicles… I had literally forgotten to keep track of my finances. And I had forgotten to stash a large lump sum I’d received in a secure interest-bearing savings account.

People, that’s just common sense. It’s the bare minimum you do with a lump sum of money, let alone all the other things you can do with it.

But I hadn’t. Even knowing what I knew, even having the positive orientation that I had to money, even having all this domain experience in savings and investments… something had broken down. And it forced me to take a long, hard look at all the other factors that had been plaguing me in my life.

Suddenly, a pattern emerged. And I started to remember things i hadn’t thought about in years…

A few thoughts on light and enlightenment

Over at my Tough Boy Initiative I read the following about research on sensitivities after TBI

This article presents research specifically seen with TBI. I wish they posted a date it was conducted, or a link to a legit article! Legit research or not, the following statement I very much believe – just from talking to people, who know people who have struggled in similar situations. I also believe it from my own experience regulating the amount of sun/light I see each week, exposure to retail stores with fluorescent lights, and from what websites I visit most when I’m out of it. All these, and more, contribute to how comfortable I am in the moment, day and throughout the week.

Dr. Tosta stated in her research:
————
Dr. Tosta stated in her research:
It appeared that these individuals were so overwhelmed by the changes to their life that they had little awareness of the severity of the symptoms contributing to their inability to function.
————

I’ve been thinking a lot about anosognosia, lately, and this is in keeping with my current theme.

While it may be true that the overwhelm of dealing with TBI prevents us from identifying the challenges, there’s another aspect that lots of people don’t mention: a condition called “anosognosia” — basically, Latin for “not knowing there’s a problem”.

It’s a very interesting phenomenon that’s common in stroke survivors and severe TBI survivors, but in my case — a series of mild TBI’s — I can definitely tell it’s caused problems. You literally do not know there’s a problem with your processing. Other people can tell, but you can’t. Some people don’t even realize their one side is paralyzed. You can read more about it at http://discovermagazine.com/1995/may/thebrainthatmisp502 which is an article I really enjoyed.

So, while overwhelm may be part of it, there’s a cognitive aspect, as well. Dr. George Prigatano has written a great deal about this phenomenon, and Google Books has a pretty complete version of a book he contributed to: “Awareness of Deficit After Brain Injury” By George P. Prigatano, Daniel L. Schacter — you can read most of it at http://books.google.com/books?id=xze89PCLaWMC&printsec=frontcover&dq=Awareness+of+Deficit+After+Brain+Injury&client=firefox-a&sig=ACfU3U0fGDNZyDxdkuBwr4jzLwJ8_MoyGQ

It’s some of my favorite reading, these days. I feel a lot less insane/deficient/incapable, when I realize that the problem is not with ME — it’s with my brain 😉