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.

Checking my stats from the past few days…

One of the things I really like about WP vs. Blogger is — I get better ideas about how people are finding me here.

I’ve been looking at how people find this blog, and I’ve found the following searches recorded by WordPress:

  • polytrauma
  • i’m a tbi survivor
  • interview doesnt go well
  • caffeine and mild traumatic brain injury
  • “losing track of conversations”
  • anxiousness lack of appetite trouble fal(ling asleep?)
  • losing one’s mind in injury to the brain
  • tbi ptsd
  • how do you know that interview did not g(o well?)
  • mtbi blog

Apparently folks are looking for information about jobs and brain injury and ptsd, which is right up my alley, since all three of these are very interesting, important and pertinent to me.

About PTSD, I have to say that just living each day as a TBI survivor (even a mild one) can be traumatic in and of itself. We live in a culture that doesn’t understand the issues, even though it’s impacted daily (and in very violent and extreme and negative ways) by TBI’s of all kinds. Tons of people have car accidents, experience whiplash, get knocked in the head. Lots of kids hit their heads during sports matches and are never treated. Battering and domestic abuse causes brain injury, as well, not to mention fights and brawls and drug/alcohol related incidents. And then we have the falls… don’t get me started.

That being said, dealing with a world that is impacted by TBI can introduce all sorts of trauma — from dealing with folks who have had injuries themselves, but don’t realize it, to dealing with people who have been victimized by TBI survivors and are “triggered” by your demeanor and/or actions. Also, when you’re living with a hidden disability, there’s the danger of over-extending yourself without realizing it. We live in a very go-go-go culture that’s not big on getting enough rest and eating right, so when we’re fatigued, we TBI folks can make poor decisions and do things we really shouldn’t – like driving too fast or too slow… like taking risks we normally wouldn’t. And that can lead to yet mor injury, in my experience.

TBI is much more common that most people realize, but because it has to do with the brain, most folks are just plain afraid to approach the subject. But knowledge is power, people. And what we know can really help.

It can also really help therapists or folks who are treating ptsd — there’s not nearly enough experience and education with regard to tbi in therapeutic circles, in my opinion. I think there may be a reluctance to factor in neurological issues, when doing psychotherapy, which is understandable, as neurology is a somewhat esoteric field — especially for LICSW’s and MSW’s and other sorts of counselors who don’t have medical backgrounds. But it’s really, really important to realize that tbi can — and often does — play a part in certain issues. So that the real problems can be addressed, instead of trying to track down the emotional root of some issue that’s actually neurological/physiological in nature. I cannot stress this enough. I could write a whole book on this important issue… and maybe someday I will.

With regard to coffee and tbi — I was being evaluated by a neuropsychologist a while back, and when he found out I’d had some coffee, he cut the session short and told me the results wouldn’t be accurate. So, measuring the performance of the brain on caffeine is not accurate, apparently, which tells me that caffeine may cause the brain to function artificially well. Or it can skew the performance in some way. That tells me that while coffee may be useful to me as a short-term solution to fatigue, ultimately, it may cause me to have “false” confidence… and possibly lead to more poor decision-making.

losing one’s mind in injury to the brain… Yes, sometimes it feels like it can happen. But learning about tbi and recognizing what’s “just your brain playing tricks on you” can go a long way towards easing the stress. I have found that the first step towards dealing well with my strengths is recognizing my weaknesses and learning not to step into those holes. It’s like walking down a dark, rocky, washed-out path over and over again… until you realize where the rocks and holes and roots and gulleys are, you’re going to keep stepping in them. Best to find out where they are, so you can walk around them and stop injuring yourself. You don’t have to be down on yourself about it, you don’t have to beat yourself up about it. Just learn where you’re less than perfect, and work with that.

You can’t fix something, if you don’t know it’s broken. And there are ways to fix — or at least address — some of the issues that come along with tbi.

As for interview stuff… Well, time generally tells if the interview didn’t go well.

Stay strong, everyone.

BB

A brilliant opportunity

I woke up today thinking that the TBI survivor community has a great opportunity before it — with the power of the internet and new electronic publishing technologies like blogs and forums and emerging print-on-demand technologies, we really do have the ability to offer each other the support that we cannot (and probably will not) find from the “system” that’s supposed to help us.

The medical industry doesn’t seem to have much interest in helping us address our issues in a consistent and substantive way.

All that some can manage to tell us is, “Every TBI is different,” without mentioning the myriad similarities so many of us have — and can benefit from hearing/learning about.

And frankly, there’s not a lot of money in rehabilitating someone who is no longer “able” to function at the same level they were before…

So many of us just get sent out to pasture. We fall between the cracks. And people who are in public positions to change that, don’t seem to care. I’m sure, on some level, they do, but so much is not known about this condition, and so many other conditions are more obvious and more easily tracked and more easily conceptualized… and are less frightening to the average person, that TBI just isn’t on the radar the way, say, cancer and heart disease are.

Now, I lost one of my little sisters to breast cancer, 2-1/2 years ago. I sat at her side and held her hand during her last hours of dying, so I’m certainly not opposed to cancer getting as much attention and funding as possible. And people close to me have had heart issues, so I’m all for addressing that, as well.

But doesn’t anyone have any attention to spare for TBI folks?

Perhaps not — but we do. We, the survivors. We, the family and friends. We, the ones with the most to lose and the most to gain. We can — and should — be there for each other and pool our resources and experience and strength and hope, for the benefit of everyone concerned.

Ultimately, the very society which doesn’t have much time for us, will ultimately benefit. But that’s not something I can prove right now, and it’s not something I can substantiate with numbers and metrics, so society at large will just have to wait and see how well we can rebound… and how well we can serve one another in the best way humanly possible.

An opportunity lies before us, to come together and pool our resources and offer one another help and support — largely in the form of information that’s distributed across the world wide web. Our info can go a long way. We can do for ourselves, what others cannot do for us. So, let’s do it!

My second neuro visit OR If only they could walk in my shoes…

Here are details from my most recent neuro visit, I believe back in August. As you can see, it was a less than stellar experience, and I’m still recovering a bit from it. It’s hard to believe that someone who specializes in neurological disorders can be so callous, but here we have it…

I had a 9:30 appointment scheduled with Dr. X to discuss headaches I’ve been having. I had been to see another neurologist about my series of mTBI’s some time back, but the results had not been conclusive, and I felt I’d just been shoved off. I didn’t mention this past visit to this new neuro — In retrospect, that was probably a tactical error, but I wasn’t sure how to explain what had happened, so I decided it was better to say nothing. When in doubt, I tend to do/say nothing, rather than initiating and seeing things blow up in my face. Plus, I wanted to start with a clean slate and get this doctor’s opinion without input from anyone else.

I had been to see this neuro on other occasions with a friend of mine who has some issues of their own. I thought it would be a good idea to work with someone who already knew me in a different capacity. I thought it would be easier for me to work with someone with whom I was already familiar. So, I had high hopes for this meeting. Hopes that didn’t pan out.

Here’s what I recall happening:

I arrived early at 9:20 and finished filling out my paperwork.

The receptionist was unpacking boxes at the time. I settled up with her for the co-pay and gave her my license and insurance card. I thought that the co-pay was $15, and when she corrected me that it was $25, I felt as though she thought I was trying to “get one over on them” and get out of paying the $10. I felt as though she was treating me like I was hostile. It was an innocent mistake on my part, and not intentional.

Around 9:30, the receptionist  had me go in to Dr. X’s office. I wasn’t sure about which door to go in, and she said “You know which one it is.” I honestly didn’t. I couldn’t remember which one was his, but when she pointed me to the door, I walked in and took a seat.

Dr. X greeted me cordially, shook my hand, and we chatted a little while.

He asked me why I was there, and I said I’d been having constant headaches.

He looked over my papers and told me that I had forgotten to fill in my employer and my occupation. He seemed miffed that I’d forgotten. It wasn’t intentional on my part. I gave him the information then, and he filled it in. We chatted a little about my work.

He asked me how old I was, and I hesitated when I answered. I don’t tend to think of myself as any certain age, and I will usually have to calculate how old I am, based in the year it is, less 1965, and then figuring out where in the calendar year I am. Dr. X commented that it took me a while to answer, as though there were something wrong with that, and I told him I usually have to do math to figure that out.

He then started to look over my information sheet, which I’d taken great pains to complete as thoroughly as possible. He flipped through the pages, and then started to work his way down through.

I pulled out my notebook with my family medical history, my history of injuries, my symptoms, and other information I’d collected which I thought might be important to know. I also had many pages of a headache journal I’d been keeping for a number of months, which showed exactly where and with what intensity I’d been having headaches. I had compiled this information over a period of more than 6 months, and it contained my most complete understanding of my cognitive situation. I also brought the notes with me to consult, so I could be accurate in my accounts. I tend to get turned around and unintentionally confabulate when I try to recount things (more when I’m under stress, but even under regular conditions, I have had a lifelong issue with unintentional confabulation), and I had hoped that I could rely on my notes to help me be as accurate as possible.

Dr. X told me to put away the notes. He didn’t want to see them. He also didn’t allow me to refer to them.

He proceeded to ask me questions about my headaches, the intensity, the frequency, the nature, the duration, and when I took a while to answer him, he became very impatient and told me I was over-thinking things.

He told me not to over-think my answers, but just to answer off the top of my head, which is very difficult for me to do.

I had to pause a lot to think, and my answers were not instantaneous. I could not verbalize my answers as quickly as he wanted me to, apparently, because he kept telling me to just answer with averages.

It’s very difficult for me to answer that simply, because nothing is that simple to me. I do not think in terms of a “bottom line” and I have a very precise and logical thinking process that sometimes takes longer than “normal” to complete. Being accurate and truthful is very important to me, and when I cannot be accurate, I become anxious. He really pressed me for quicker answers. “Just off the top of your head,” he said. “Just on average.”

It felt as though he were intentionally trying to trip me up and make me contradict myself, or find some “hole” in my “alibi”. I felt like I was being grilled, and I had done something wrong.

I had to stop and think a lot — I could see the answers to his questoins right in front of me — when he asked me about timeframes and durations of my headaches, I saaw images of calendars with days marked, and the severity of my headaches marked on the calendar (some were in colors). I could also see the pages of the calendars flipping by, and I tried to see what information was where. It was very hard for me, though, because he was moving faster than I could go, and I kept losing my place with the images. I had to close my eyes a lot to think, and I had to look down at the ground. I couldn’t look him in the eye AND figure things out, because looking at him distracted me from my thinking — and I started trying to “clue in” to him, instead of the answers to my questions.

At one point, he appeared to be very frustrated and said I needed to speed things up, or “We would be here till next Tuesday” before we got all the answers to the questions. I agreed with him, but I told him that I had to translate my visuals into words, and I am not a primarily verbal person. I tried to explain that I see the answers as images, and then I need to translate them into words, but I’m not sure it sank in with him. I was getting very frustrated, and I was tearing up, which seemed to annoy him.

He also asked me about any addiction background, and I told him I had quit drinking in 1989. It had been 19 years since my last drink, and I had not touched a single drop since. He asked if I’d taken drugs, and I told him a little bit — speed in high school, but only a few times a week, as it made me too speedy and upset my stomach. I told him had smoked marijuana while I was drinking during high school and college.

I may have left the addiction piece of information off my form, but it was not intentional. It was an oversight. He didn’t seem to see it that way.

He asked about any medication I was on, and I told him that I didn’t take any, and I was not a big medication person. I told him that I took Advil, now and then, and I had once taken it for headaches, but it had since stopped working at all.

We talked about my head injury experiences, and I gave him details from what I knew and could remember. It was very difficult for me to think on my feet, and I was becoming increasingly anxious. He was moving very fast, so I’m not sure I answered everything completely. I had my notes, but he would not allow me to consult them. When I tried to pull them out, he told me to put them away.

Dr. X seemed to become increasingly impatient with me, and he said we were just going to focus on my headaches.

He asked about the nature of them, if anything helped, if I exercised regularly, if I was under stress.

I told him that I’ve had a lot of stress, and that my headaches have gotten worse over the past 6 months. He asked if I’d been under more stress, and I told him I’d been in a very stressful job for 3 months.

He said he’s not a big “pill person”, and I said I was not, either. I prefer to deal with my aches and pains in other ways, and sometimes I’d rather just live with pain, instead of taking medications that gave me side effects.

He asked about the vertigo, and I told him it was worse when I had allergies. I told him that it was very intense and I had to hold onto things to keep from falling over at times.

He asked about my history with other injuries or conditions, and I told him about a diagnosis of lupus diagnosis in the late 1980’s, early 1990’s. He asked if it was discoid or systemic, and I believed it was systemic, but when I told him about the skin rash, he said that sounded like discoid, not systemic, and I became confused and said it may have been discoid, but not tests were ever conclusive. Also, the medications I’d been on had not helped.

After a while, we went into the examination room, and he conducted a physical neurological exam. It was standard, and he seemed to go very quickly — more quickly than I’d seen him go with a friend of mine. He seemed to be in a rush, and it was painful when he checked the reflexes on the bottoms of my feet. It was hard for me to answer quickly, when he pricked me with the pin, and sometimes it took a little while for me to verbalize I’d had the sensation. He seemed to think that I was “fixing” my answer to fit what he wanted to hear. I was getting confused and felt like the room was pulling away from me, and my reaction time was slowing.

During the exam, he asked me again if I had taken drugs recently. I told him no, I had not taken any drugs since stopping drinking in 1989. I believe he repeated the question, and I answered him again in the negative. I couldn’t figure out why he was asking me if I’d taken any drugs. It didn’t seem like the kind of thing he’d be asking me while he was checking my reflexes.

He told me that my exam was normal, and everything looked good.

We went back into his office, and he said that my exam looks clear – no indication of a tumor or vascular issues. He said he believed my headaches are tension headaches and he wrote some notes on a piece of paper. He gave it to me, and he said that my headaches are probably muscular in nature, related to stress. He also said that he thinks the vertigo is probably BPPV (Benign Paroxysmal Positional Vertigo) or Meniere’s Syndrome, and I could check with an Ear-Nose-Throat (ENT) specialist if I chose to. He didn’t seem to think I needed to see someone, but my ears have been hurting me a lot, and I said I would like to talk to an ENT specialist. He referred me to a doctor he knew and believed was good. He wrote that down on a piece of paper (his prescription pad?), as well, and gave me that.

He said that he didn’t think that medication would necessarily help, as it may cause side effects, and I agreed with him. He also said he didn’t think an MRI or EEG would show anything, which was really disappointing. I mean, I have a whole lot of issues, and I have trouble sorting them out, and the one way I can think of reducing some of the mystery, is to have an MRI or an EEG or something like that. I really didn’t know what to say at that point. All I could manage, was to agree with him, which irritated me when I did it, but I was helpless to do anything else. My thinking process had slowed considerably by that time, and I was feeling very overwhelmed and confused by everything. I wasn’t sure if he was being congenial or if he was upset with me. He seemed distant. But I couldn’t really tell for sure how he was being with me.

He asked if I exercise, and I didn’t know what to say. I lead a pretty active life, and I move a lot through the course of each day. I could see myself walking and moving a lot at work, walking across parking lots, and making extra effort to incorporate exercise into my daily life, but I couldn’t just come up with a simple “yes” or “no”. I had to think about whether or not I was going for walks. I eventually answered “Not regularly,” and he said, “No” and wrote that down. He said he wanted to see me exercising on a regular basis, nothing really heavy, just maybe going for a brisk walk with a friend several times a week. I saw a friend of mine and me walking along a road near my home, but I didn’t know when that would or could happen, as I work such long hours during the week. Dr. X appeared a little exasperated with me, as though he thought I wasn’t being fully cooperative.

He asked me if there was anything I do that relaxes me, but I was having a hard time processing at that point. I couldn’t think of anything — I was drawing a blank. I told him I draw and I write, and he recommended I draw 15 minutes a day. I couldn’t figure out how to explain that when I draw, I get very absorbed in my work, and I lose track of time, but there was no time for me to figure out how to say that. He also recommended that I exercise regularly, go for a brisk walk with a friend on a regular basis. Again, there was no time for me to respond in a way I felt was adequate.

I told him I was going to see another doctor for a neuropsychological exam, and he said he would like to know the results of that. I told him I would keep him apprised.

He said he wanted to see me again in 7 weeks, to see how I was doing.

I made an appointment with his receptionist. I had a hard time thinking through my schedule at the end of August, beginning of September, and she was not very patient with me. She acted like I was pretending to be “slow”.

Basically, I felt completely humiliated and treated like I was a liar who was seeing him under false pretenses — as though I had been an addict showing drug-seeking behavior. I left in a daze, and I went to the nearest bathroom, locked the door tightly, crouched down in a fetal position, and cried… and cried again in the car before I drove to run an errand. And felt like crap for the rest of the day. I did collect myself and manage to get on with my day, but the flow of my day was completely disrupted, as was my weekend. It was too disruptive for words, and I in retrospect, I really resent the implications that I think were in play.

Sometimes, it just sucks when nobody can tell you’ve got issues… and they treat you like a criminal, just because you’re trying to get some answers (and they apparently can’t help you, but don’t want to say so).

It also sucks to have processing difficulties that might be making things look worse — or better — than they are, and that keep you from being able to ask for help.

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 😉

Putting the logic in “neurological”

Okay, here’s my next question:

If neurologists are trained in a “scientific” sort of method and they specialize in studying the brain, why is it that there seem to be so few neurologists out there who truly “get” TBI?

This is quite distressing… and by “this”, I mean all the stories I’ve heard and read about how people who have sustained TBI’s are either dismissed or misdiagnosed or just plain mistreated. My own story is among them.

Before I start, I just want to say, this is not intended to be a rant about the terrible experiences I’ve had with neurologists. I have had some pretty distressing ones, but I really think it’s more productive to seek solutions and embrace the lessons, rather than gunning for revenge. We’ve all been hurt by someone or something, along the way, and if we’ve got TBI-related issues, the situation tends to be muddied — both by the ignorance of the general populace (and a lot of “experts”) and by our own altered cognitive processes. I realize, as a result of my TBI’s, that my mind can play tricks on me. So sometimes things aren’t as bad — or as good — as I think they are, so please take what I’m about to say with a grain of salt.

My own neurological saga began nearly a year ago, when I started to put two and two together and realized that there was something fundamentally wrong with my cognitive process. Something that had gone unrecognized and undetected for almost my entire life, but had been a persistent problem and issue for many, many years.

In the process of talking with my therapist, I took a very close look at the events of my childhood and how they had affected me. I’ve had a lot of behavioral and cognitive and emotional problems over the course of my life — I’ve been able to mask the cognitive and emotional ones really well, mostly by just keeping quiet and being very vigilant about people’s reactions to me, but the behavioral ones were a real problem when I was a kid — it’s what people could see: the temper tantrums, the meltdowns, the bad moods, the lashing out, the yelling, the acting out… Yikes.

Anyway, I was trying to figure out why my siblings had similar experiences to mine — some of them had worse ones, in fact — but I had the most trouble with things. One day, I just mentioned to my therapist, off-hand and very matter-of-factly, that I’d been hit in the head with a rock when I was 7 or 8 years old. She didn’t follow up with that, but that started me thinking. And it occurred to me that that injury, which I recall knocked me out briefly, might have affected me more than I realized.

I went about collecting and recording as much information as I could about my observations of my life — using valuable guidelines over at www.headinjury.com as a starting point. (Thanks! to them for their great info! What a great resource they are!) I wrote down as much information as I could about my childhood experiences that seemed to be directly related to my injury at age 8… and then I collected as much info as I could about how it appeared my adult life had been impacted by that injury. I started to see a lot of patterns that bore a really close resemblance to things I read about other people experiencing. (I’ll post some of what I collected, so you can see what I came across.)

Then I systematically kept track of my daily experiences, and I recorded what went on with me on a regular basis, tracking it to the symptoms of TBI. And I read a lot online about how people can be affected by brain injuries.

Now, all this was happening behind the scenes of my regular life — sort of on the QT. I did reach out to local brain injury associations, as well as some support groups. I was still really searching for some understanding of what had happened to me, and how it affected me. All of a sudden, I had a plausible explanation for all the difficulties I’d had as a kid, why I was so erratic, why things that were easy for other kids were hard for me… and why I’d made the kinds of decisions and taken the sorts of actions I had as a teenager and an adult. So many things could be explained by this! It was both euphoric and disconcerting. A lot of information came into my life in a relatively short period of time. And I was pretty much doing it on my own.

Knowing that I have a long history of being mistaken or downright wrong about things that seemed pretty “obvious” to me, and knowing that going it alone was perhaps not the best way to do things, I decided to seek out help. I was given some great information from other TBI survivors about finding a neuropsychologist to do an assessment of my situation and help me formulate a plan to rehabilitate myself. The only problem was, someone warned me, my insurance company was notoriously difficult about covering neuropsych exams (NPE), unless they were medically warranted.

I knew I needed an NPE — really for the sake of getting some professional corroboration about my situation, so I wasn’t just running around saying “This is what happened to me!” and making a total fool of myself in the process (It’s happened too often before, sadly). But how to qualify to get one?

I asked around, and people said that a neurologist would be the one person to determine if you needed one — anything less might not be honored by the insurance company. The problem was, not all neurologists have a clue about TBI, and some of them are downright hostile, when it comes to brain injury. I’m not sure why this is, if they’re neurologists and it’s their job to know about the brain, but there we have it.

So, off I went in search of a neurologist who specialized in TBI. I searched high and low, pulled data from listings from support groups and organizations, then cross-referenced that list with the neuros my insurance company listed on their website. It was a painstaking process, but eventually I found a neuro who specialized in TBI who seemed like a decent sort of fellow.

I compiled all my notes and edited them down and collected them in a three-ring binder. I listed my symptoms, my history of head injuries (which had actually lengthened — the more I thought about things, the more injuries I realized I’d had), my issues, and information I thought would be helpful for him to make some sort of diagnosis. I genuinely thought he would be open to it, and that he would appreciate the information, without having to sit and ask me all the questions. Plus, I was afraid I’d get turned around and not be able to answer accurately, so I wanted to make sure I had the right information recorded. I take my health very seriously, and I take my integrity seriously, too. I didn’t want to be misstating or confabulating or confusing the issue.

Well, I don’t have the time here to describe exactly what happened, but the end result was me feeling incredibly dismissed and my difficulties downplayed. (I’ve got to write more on this — it’s a great story and an educational tale — but not for this post.) Bottom line was, the neuro wouldn’t pay any attention to the information I’d collected, he ruled out the benefits of an MRI, he tossed my book aside, and he reached the eventual conclusion that I had “emotional problems” and I needed to see a cognitive-behavioral therapist and possibly go on Ritalin or some other stimulant.

He basically told me that my situation was “more complex” than he liked to deal with, and there wasn’t much he could tell me, so I should go see a neuropsychologist.

Well, yuh, I already knew that. I had been hoping he could at least confirm or deny the extent and possible impact of my injuries. But apparently, it’s kind of hard to tell what’s up with someone when they’re talking about multiple injuries sustained over the course of more than 30 years.

In retrospect, I think that my emotional state at that time didn’t help. I was very stressed when I went in to see the doctor, and I wasn’t really clear about the answers I was giving. I also didn’t feel as though he was in the least bit sympathetic to me, and I had a lot of trouble verbalizing the answers to his questions — either I gave him too much information, or too little. It just wasn’t good. Plus, he only had 50 minutes to spend with me, so there wasn’t much either of us could accomplish in the meantime. He did give me a neurological exam, and I came out looking pretty normal, from what I can tell.

I left that visit feeling genuinely unnerved. At the very least, I had expected at least a little indication of interest in my situation, but the doctor seemed more interested in seeing people with “real” problems — as though a lifetime of catastrophic relationship failures, a patchwork job history, constant headaches and ringing in my ears, mood and behavioral issues, and a complete and utter failure to fully realize my potential is not much of a problem at all.

Maybe he was looking for something more dramatic. Like a tumor. Or cancer. Or a Phineas Gage-like iron spike through my skull. Or some sort of medical data, which I did not have, since I’ve never gone to the hospital or sought medical treatment for any of my injuries.

Anyway, I was pretty torn up about the experience, and I continue to be bothered by it. It doesn’t help that this TBI business is wreaking havoc with my perceptions, but there seemed to be an alarming lack of intellectual curiosity, or even logic, to the doctor’s demeanor.

So, I buckled down and went ahead with finding a neuropsychologist who could perform an NPE on me, per the doctor’s directive. Again, like Diogenes with proverbial lantern in hand, I searched high and low, seeking a qualified individual who had a clue about my type of situation. Again, I had to cull out the ones who were flagged as “trouble” by a brain injury support group info packet (like the ones who testified for insurance companies to discredit TBI survivors in court). And then I had to cross-reference them against the insurance company’s website. And then I had to research their background and their professional reputation, if I could find it.

I found someone, at last, but he couldn’t fit me in until September. This was back in April, or so.

So, I sat and waited. And lined up another job. And totally screwed up that job and had to go find another one, so I wouldn’t lose my house.

All the while, it was getting harder and harder for me to deal with being so brushed off by that first neuro. So, I thought I’d see another one — someone a friend of mine had been seeing, whom she liked pretty well. I made an appointment with him and went to see him, thinking that I might get farther with him, if I just focused on one issue, rather than the whole kit-n-kaboodle.

I made up another version of my notes for this doctor and took it with me to reference. I wasn’t going to make the same mistake I’d made with the last doctor and just run my mouth without anything positive coming out of it.

But this guy was even worse than the last one. I think he may have either talked to the other doctor or he saw some of my notes from my PCP, who got a letter from the first doctor, and he treated me like a “hostile witness”. He wouldn’t let me use any of my notes, and he just grilled me over and over about details I wasn’t clear about, or I had to take time to think about. He announced that an MRI would be pointless to do, and he said my headaches were just stress. I had no time to gather my thoughts or describe the full spectrum of my issues, and I left feeling totally bulldozed and dismissed… and a little mistreated. (Again, I’m sure my TBIs didn’t help my processing at all — I’ll post more details on my experiences later — it’s really a very informative story.)

In the end, I didn’t get anywhere with these doctors. Maybe I was looking for the wrong thing from them. Maybe I was expecting too much, hoping for sympathy or at least a little curiosity about me and my situation. But still, it seems to me that a neurologist (for heavens sake!) would exhibit at least a little interest in someone like me — someone who has sustained multiple mild traumatic brain injuries over the course of my life, and has still managed to put together a life that a lot of people would be happy to have — with a loving spouse, a great house in a great town in a great state, pretty decent facility at getting along in the world, a career that looks great from the outside, the ability to be employed, and to be fully engaged in my life (my limitations notwithstanding).

But in the end, I got nothing. Worse than nothing. I got dismissed. Shunted off. Sent away to someone else.

I’m a TBI survivor who needs help understanding exactly what is up with me, and why my brain doesn’t work the way it should. I sought the help of neurologists… who just couldn’t be bothered with me. They dismissed me without so much as a second thought, from what I could tell. It’s their job to help people with neurological issues… I’ve been under the impression that it’s their job to identify the issues and be of assistance. And yet, both of these guys exhibit precious little interest in my situation.

Where’s the logic in that?

Working my way through all this…

It’s been a few months, since I first put 2 and 2 together and realized that there was actually an “umbrella” that I could collect all my internal issues under — Mild Traumatic Brain Injury, or MTBI.

I’ve been talking to folks in support groups and medical professionals, and it just amazes me how little information is readily available, unless you’re “locked on target” and deliberately seeking it out. I am locked on target and I’m on a mission to figure all this out, and it’s my hope that my writing on this blog will help others who are pretty much clueless about what TBI is and how it can affect your life and that of others.

I came across a great book, which I’m gradually working my way through, called Brain, Heal Thyself by a caretaker for a stroke survivor, who helped her friend return to functional health — despite what the medical establishment said was possible. I’m still reading, but on page xvi of the Introduction, one of the great things she says is how medical professionals like to say “Every stroke is different,” as a way to get out of answering our “weird” questions. Amen to that! I am so sick and tired of that lame cop-out, where people who go to school for many years, studying the dead and the dying (they start out with cadavers, after all, and often see only people who are so far gone they can no longer avoid visiting a doctor), can’t bring themselves to study the living… or give us the credence to take in the information we pass along to them, because it can’t be standardized, categorized and controlled the way they’d like.

I am just so sick of it. The conflicting information, the arrogance of a medical establishment that will say, one month — with all confidence — that eggs are undoubtedy very bad for you and will probably kill you if you eat too many of them… And then turn around the next month (apparently, when the Egg Growers Lobby raises a hue and cry and funds a conflicting study) and tells us — with absolutely certainty — that eggs are actually not bad for you, and you’ll probably suffer health defects and slide slowly downhill in a state of painful, irreversible physical decline, if you don’t eat three eggs a week.

These same people are running around doing studies and using advanced equipment for research, and either keeping their findings to themselves — locked away behind the wall of medical terminology — or discouraging “lay” people from finding out about it for themselves. I can’t tell you how many weird looks I get from doctors and clinicians, when I talk about research I’ve read or things I’ve observed in my own life.

And, as was the case yesterday, sometimes I’m contradicted on my findings by doctors who freely admit that they are not experts in TBI — and actually say they know next to nothing about it — but they’re sure I must be wrong about my symptoms. Probably because I’m not a doctor.

But I live in this body. I am living this life. And if anyone should know what’s going on inside my little head, it would be me… provided, of course, I can apply unsparingly rigorous “reality checks” to what I think I’m seeing/hearing/thinking/experiencing.

That’s the pecadillo about impaired self-awareness. The one person who should/could be the expert on their brain, might not be. It’s maddening. But there are ways around this — when you know you’ve got limitations, you can plan for them, work around them, accommodate them, and adjust your standard deviation metrics.

So, I’m just working my way through all this. Trying not to get locked into one “set” way of thinking about how my brain functions, sticking with the facts of the matter:

  • I was struck in the head by a rock around age 8, was knocked out briefly/dazed and groggy afterwards, and I noticed significant changes in my behavior, moods, and cognitive abilities thereafter.
  • I fell down a flight of stairs in 2004, hit the back of my head several times, was intensely dazed/nearly knocked out for a few second, and thereafter found myself missing key information (like not recognizing people I worked with), unable to get a full night’s sleep, having intensified temper flares, and a whole raft of cognitive problems (like suddenly being unable to multitask and switch gears like I used to very fluidly), which I attributed to job stress, but which continued after I left the job (which imploded around me, when I couldn’t keep up with the pace).

I can’t keep second-guessing myself on my TBI(s), and I can’t give in to people who assume that because I do a really good impression of a normal person, it means there’s nothing wrong with me. There’s a whole lot wrong with me. Inside this head. That I can’t articulate very well with other people, when speaking. And I’ll have to work through this, one issue at a time.

If there’s anything I have, it’s time.

TBI and Mental Illness

I found an interesting post over at Lawyers Attorneys: Brain Injury and Schizophrenia: How to Deal

For victims of a traumatic brain injury (TBI) and their families, side effects such as bipolar disorder and memory loss are tragic, but well known and well understood. But in the last decades, scientists have begun to study another serious side effect of brain damage that may go undetected: schizophrenia.

What is Schizophrenia?

Schizophrenia (Greek for “shattered mind”) is a psychotic disorder that affects behavior, mood and thinking. The term was originally coined as “the schizophrenias” because of the wide variety of symptoms characterizing the condition. A misperception that all schizophrenics hear voices is actually untrue. It is a symptom in some suffering from schizophrenia but not all. Psychologists break symptoms of schizophrenia into three categories:

. Positive symptoms are behaviors that are not present in normal individuals. Other symptoms include hearing things, delusional though as well as sporadic thought.

. Negative symptoms are symptoms showing loss of normal abilities. They include loss of ability to show or feel emotion, lack of motivation and trouble with speaking.

. Neurocognitive defects are problems with brain function in areas such as memory, problem-solving, attention and social functioning.

Schizophrenia Related to Brain Injury in Patients

Scientists have established that psychiatric conditions such as bipolar and anxiety disorders are more common in patients who have suffered from traumatic brain injuries. Schizophrenia itself has been associated with individuals who have previously suffered brain damage regardless of family history. But it is only since the early 1990s that researchers have begun to explore in depth that connection between brain damage caused by traumatic brain injury and schizophrenia.

Schizophrenia and Brain Injury: Recent Studies

. Among the findings of those studies:

. TBI-associated schizophrenia is true schizophrenia, not another disorder with similar symptoms, according to a 2001 study by Columbia University. Schizophrenia and TBI are now being associated as hand-in-hand illnesses, one usually occurs in the victim of the other.

. Another study in the same year at the University of New South Wales in Australia discovered that TBI patients with schizophrenia-like psychosis had more widespread brain damage and cognitive impairment than TBI patients without psychosis. It also suggested that a family history of schizophrenia and the severity of the brain damage sustained during TBI increased the risk of schizophrenia.

. Scientists at the Hawaii State Hospital found in 2002 that it took an average of four to five years after a traumatic brain injury for psychosis to manifest, with most cases arriving within two years. Psychosis may be the result of trauma and blunt force to temporal and frontal lobes, for which researchers are attempting to determine.

While the complex nature of schizophrenia makes its cause unclear, as the last study suggests, there is evidence to believe that brain injury directly causes schizophrenia, by damaging the areas of the brain that control higher functions. There is also evidence that a traumatic brain injury may cause psychosis indirectly. Scientists believe that schizophrenia is caused by a combination of genetic susceptibility to the disease and an emotionally or physically traumatic experience that triggers this susceptibility. Researchers are finding that TBI and the trauma that can occur can actually trigger schizophrenia.

Many physicians know a traumatic brain injur may cause neurocognitive disorders such as trouble with speech, and psychiatric problems like bipolar disorder, but not all are aware of the growing evidence linking schizophrenia with brain damage. It is imperative that after a TBI accident, that a victim consult a psychiatrist to ensure that they return to normal behavior. In addition, brain injury patients and their families should consult an experienced brain injury attorney as they seek to recover costs for expenses such as lost wages, current medical costs and future medical care.

A couple of things came to mind when I read this:

  • Okay, so does it mean I’m going to lose my mind, because I sustained a TBI? Am I headed for a psychotic break?
  • If head-injured folks are given proper treatment, rest, nutrition, and time to heal after their injury, will that help prevent a later development of mental illness?
  • How is that these symptoms are ascribed to schizophrenia:

. Positive symptoms are behaviors that are not present in normal individuals. Other symptoms include hearing things, delusional though as well as sporadic thought.

. Negative symptoms are symptoms showing loss of normal abilities. They include loss of ability to show or feel emotion, lack of motivation and trouble with speaking.

. Neurocognitive defects are problems with brain function in areas such as memory, problem-solving, attention and social functioning.

I don’t know nearly enough about schizophrenia, but it seems to me that calling a neuro-physical condition a psychological one not only makes it difficult to properly diagnose, but also makes it difficult, even dangerous, to treat. Approaching an actual physical condition (or a neurological one) with a psychological approach might actually do more harm than good — convincing the specialist and the patient that there’s something wrong with them rather than something wrong with their bodily system.

Might this not actually make matters worse? I think psychotherapists and psychiatrists really need to think this through — familiarize themselves with TBI and its effects and realize what neuro-physical issues might truly come up along the way that mask themselves as psychological issues, and realize that they might be barking up the wrong tree.

Misdiagnosing TBI as schizophrenia or some other psychological disorder is dangerous, not only for the patient but also for the clinician, and it makes both parties chase the wrong ghosts. Not good for anyone involved.

(Note: I have more thoughts on this at this post – More thoughts on Brain Injury and Mental Illness)

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When they think your TBI is PTSD

I just checked my blog stats, and somebody came over to this site while Googling for info on soldiers and PTSD.

I want to quickly put in a word for military folks who are seeking help for post-combat/deployment issues, who may be headed down the PTSD treatment road, but may miss TBI treatment in the process.

I started professional counseling about six months ago for “coping issues” that I couldn’t get my head around. Everything in life had just gotten so difficult, and I couldn’t understand why I kept running into dead ends with jobs and relationships and why I couldn’t seem to advance in life. All my peers have “moved on” and “grown up” — many of them now with grandkids and advanced careers, long-term homeownership, and all the accoutrements of adult life… while I languished in a no-man’s-land of false starts, scattered ideas, and a long line of failed or aborted attempts at living a normal life.

Now, don’t get me wrong — on the surface, my life looks like it’s highly advanced. I’ve got a great home, a wonderful marriage, and two cars in the garage. My resume looks fabulous, and I’ve got a lot of respect from folks. But my external circumstances don’t match my internal state… and they haven’t for a long time. Nobody really knows just how deep the self-doubt, anxiety, self-criticism, abysmally low self-esteem, and constant invisible struggle really goes.

Except me. And I don’t breathe a word of it to anyone. Not if I can help it.

So, when my health and career and personal life all started to tank in a very big way, this past year, I sought professional help. The counselor I found is highly experienced, compassionate, insightful, kind, caring, and very adept at what they do. But I found myself over time feeling as though they were looking for some sort of horrific trauma in my past that would cause me to lose big chunks of my memory, be uncertain around people, and erode my emotional and behavioral (and cognitive) foundation.

I got the distinct impression they were looking for emotional trauma. Abuse. Neglect. Some sort of terrible thing(s) others did/do to me that cause me to have PTSD. Or some life-threatening event that brought on PTSD.

We had talked about post-traumatic stress a good deal, and both of us accepted that it could have a part in my difficulties. But no matter how closely I looked at my life, I couldn’t for the life of me find THE Event(s) that had wrecked me for “normal” life.

It just didn’t make any sense to me. And when I dug deep and did my own research and realized that sustaining a traumatic brain injury at the age of 8 (and possibly other times), as well as another TBI three years ago, did actually fill in a huge, gaping missing piece of the puzzle.

It’s not that my counselor was incapable or incompetent. They were just looking for the wrong thing in the wrong place. They’re a wonderful resource for me, and I really value their input, but in the case of TBI, I had to come up with my own diagnosis.

This article was very helpful:

Concerns grow about war veterans’ misdiagnoses – Brain injuries can defy easy detection” – I passed it along to my counselor, and they found it very helpful… as well as a bit disconcerting.

And the blog “A Soldier’s Mind” has some more info.

If you’re in the same boat I am/was, you may need to do your own research & preliminary diagnosis, too. After all, TBI tends to make it very difficult for people to tell what’s going on inside our heads — and it can make it tough for us to figure that out, too. Doing research online is a great way to make a start.

I’m finding that TBI is not particularly well-known in the psychotherapeutic community — I have a bunch of friends and associates who are therapists, and when I’ve talked about TBI, I’ve gotten blank stares. That’s not entirely their fault. They aren’t always trained to look for physical ailments, which are the domain of medical doctors. If anything, they’re taught to look away, in terms of medical issues — liability issues, I suppose. Unfortunately, there seem to be a lot of highly trained individuals who simply don’t have the kind of physiological orientation that treats cognitive-behavioral symptoms as possible neuro-physiological phenomena. They are accustomed to looking at emotionally traumatic life experiences as the root of PTSD problems. They’re looking for the right thing… but they’re looking in the wrong place.

I really want to devote a fair amount of time and energy on this site to explaining to psychotherapeutic professionals the personal realities of living with TBI, as it relates to trauma. There are different aspects of the condition that both mask post-traumatic stress and exacerbate it. TBI adds another wrinkle to the whole scene that complicates matters and requires greater sensitivity to our situation.

When I informed my counselor about my TBI, they seemed a bit concerned that I wouldn’t need their help anymore… or that I’d terminate my sessions with them. They seemed to think that TBI work would replace the cognitive-behavioral work I was doing with them. But in fact, the TBI aspect makes it even more important to do cognitive-behavioral counseling. It doesn’t make counselors superfluous. If anything, it makes them all the more essential.

Other posts about PTSD:

Better today… of pain and ptsd

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Greetings from inside my unusual head

Well, this is it, then. I’m actually going to do this thing called “record my experience as a long-term traumatic brain injury (TBI) survivor.”

Who am I? I’m a TBI survivor who’s extremely high-functioning. So high-functioning, in fact, that people just cannot believe that I’ve actually sustained a traumatic brain injury. I don’t “present” (as they say) as someone who’s been hit on the head. I’m quite intelligent, if I say so myself, I’m deeply curious about the world around me, outwardly, I’m socially engaging and interpersonally adept… and I’m really, really good at hiding the fact that 35 years ago, at the age of 8, I was struck on the head with a rock, knocked unconscious briefly, and then changed unalterably in subtle and confounding ways that were either interpreted as “behavior problems” and “just being difficult,” or I actively hid from my parents, siblings, friends, classmates, colleagues… the whole world, in fact, because if I let my shortcomings show, they’d land me in a whole lot of hot water.

What a long, strange trip it’s been, truly.

What’s even stranger is that, not until six weeks ago, did I even realize that the source of so many of my problems tracked back to a TBI. Shortly before Thanksgiving, I was laid up with an upper respiratory infection, thinking about how my life had shaped up till that point. It’s a long story, getting from being head-injured at 8 to that few days of lying in bed with a notepad and antibiotics, but long story short it finally dawned on me that the cognitive and behavioral issues I’d been having all my life were, in fact, very real. And they couldn’t be easily explained by psychotherapy, pop psychology, or my colorful personal history of (mis)adventure.

When I took a close and very honest look at my 43-years on this earth and studied my history closer than I’d allowed myself to, in … well, 35 years … it became pretty clear to me that I’d been swimming uphill against a current that was never fully explained or explored or even accepted by my exasperated parents, intimidated siblings, and confounded teachers. And it became painfully clear that if I was going to continue my life on an upward trend, rather than the erratic and intermittent upward-downward spiral/corkscrew/roller-coaster ride, I was going to have to take a long, hard look at what was really going on with me, and quit hiding behind excuses and avoidance and euphemism and actively ignoring a whole range of serious but well-hidden social, emotional, behavioral, physiological, psychological, spiritual, and neurological difficulties that have interwoven themselves into my life so completely, it’s difficult to separate them out from the “normal” parts of my life.

Lying there in bed, popping amoxycillin and waiting to feel better, scribbling away in my notebook, I realized that if I was going to actually live my life, instead of hiding away in a hole and emerging every now and then to give the appearance of living a life that others would appreciate and approve of, I was going to have to bite the bullet and face my deepest, darkest demons… demons that no one else even fully realized existed… demons that I could probably keep hidden all my born days, but will necessarily keep me from living fully and being a responsible adult, partner, employee, citizen, contributor, and human being.

Make or break time… time to come out from under the rock. Time to step out and let people know what’s happening inside my head. For once.

Because living with TBI is probably one of the most alienating and isolating experiences on the planet. The part of your person that’s in charge of telling you what’s going on, is hurt, and it often doesn’t know it. The part of your body that’s responsible for monitoring your behavior is not response-able, and it likes to hide that fact.

To make matters worse, so little is known about TBI in the general populace, and so much prejudice abounds about mentally compromised individuals — especially people who exhibit classic TBI behaviors like quick flashes of violent emotion and slowed (yes, technically, retarded) mental processing powers — that it’s not very safe at all to come out from under the shields you pull around yourself and interact authentically with the world around you. And if you are quite accomplished (as I am) at hiding out from others, it becomes that much easier to hide out from yourself. And you can lose touch with what your true capabilities are… what you really can do, what you really can’t… what chances you can safely take, and what you’d better not do… what activities and responsibilities you can realistically take on and perform at, and which ones are just asking for trouble, a ticking time-bomb of failure and internal cognitive-emotional collapse.

And that’s a terrible, horrible shame. Because having a TBI doesn’t make you incapable of contributing to the world around you. In fact, it can force you to develop unique coping skills that other ‘normal’ people could really benefit from learning about. It can force you to acquire a point of view that makes it possible for you to stay afloat even in the midst of the worst shit-storm on the planet… a point of view that can really help others make it through life. As a TBI survivor, you’re thrown into a snakepit of hell (again and again, time after time), and if you learn how to climb out (again and again, time after time), well, that’s not only a tremendous accomplishment in your own right, but it’s the kind of inspirational experience that can truly help others who may be less impaired, but still very much in need of help, just getting by in life.

So, my mission with this blog is manifold:

  1. To reach out to the millions of individuals (5.8 million, I’ve heard) who have sustained a TBI, along with their friends, family, and co-workers, to help them better understand traumatic brain injury information from a “lay person’s” point of view. There is a vast sea of medical research and clinical findings available about TBI, not to mention studies, facts, and tons of websites, but it’s often confusing and can be very disorienting. Having a personal “take” on all of it, might just help to humanize this scientific information and make it accessible to the people who need it most — the folks who are living each day with the after-effects of a traumatic brain injury. I hope that in reading this blog, they may be better informed about TBI and quit being so hard on themselves and others, quit being so frightened of this manageable condition, end the silence around cognitive-behavioral issues that are neuro-physiological in nature (not due to some “character flaw”).
  2. To share my personal experiences with other TBI survivors and their families, to help them overcome the feelings they may have of wretched brokenness, to let them know they are not alone and help them see that a broken brain is not the end of the story, so long as your whole body-mind-heart-spirit “information-processing system” is intact. There is more to us than what’s between our ears, and we can live full and satisfying lives, even if they are turned upside-down by forces beyond our neurological control.
  3. To relate my experiences to the psychotherapists of the world, who may be chasing the wrong demons in their counseling sessions, trying to fix “psychological” issues of TBI survivors which are actually neuro-physiological in nature, and help these therapists address the very real emotional/cognitive/behavioral/social issues which plague TBI survivors, often in secret, often hidden behind thick, high walls of shame, fear, guilt, and anxiety. There is a lot to be done in this domain, but folks need to understand the real issues we TBI survivors face, before they embark on diagnostic and treatment courses of action that serve mainly to frustrate and discourage us, and make us feel even more screwed up than we really are.
  4. To assist our men and women in uniform, returning from active duty, who have sustained a TBI in service to this great country of ours, and who are left out in the cold by a medical and psychotherapeutic establishment that often does not understand or fully appreciate their challenges and needs as TBI survivors.
  5. To celebrate my successful long-term survival from a TBI and show others how I did it… and how I continue to do it, so they can have hope and, in the words of Winston Churcill, “Never, ever, ever give up!”

As I said (I think ;), I’ve lived a very high-functioning life for over 35 of my 43 years with an undiagnosed traumatic brain injury, and I’ve experienced more success, happiness, and fulfillment in many areas of my life, than a lot of “normal” people do, with all their fully functioning capabilities. A TBI is not the end of the world, I’m here to testify. But to live life fully, I need to face up to what’s really going on with me, address my very real deficits, and design a course of action that will enable me to not only survive, but thrive… not only get by and give a pretty good impression of a highly successful citizen and contributor, but truly live up to my full potential.

So welcome to my world. Welcome to the world inside my broken-brain head.

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