PTSD from TBI – Exploring some possibilities

I’ve been giving a lot of thought to how PTSD and TBI interrelate with one another. With so many soldiers coming back from Iraq and Afghanistan with serious issues related to TBI and PTSD… and considering how ill-informed and ill-equipped our society is in dealing with these very serious issues, I do want to try to explore some of the aspects of each.

I do this as someone with a history of TBI and PTSD. My injuries started when I was a kid, and children (and women) are more susceptible to developing PTSD, so that old habit I have of saying, “Oh, that was so long ago… I must be over it by now!” doesn’t hold water anymore. The fact of the matter is, I lived in very violent conditions as a kid, and it affected me. A lot. It was traumatic. It was distressful. I had a very disordered childhood. And the other fact of the matter is, I sustained several mild traumatic brain injuries as a kid, which did not help.

I’m going to be using Belleruth Naparstek’s book Invisible Heroes: Survivors of Trauma and How they Heal as a guideline. I’m not recommending that everyone run out and buy it — tho’ I won’t stop you if you want to. Be forewarned: I personally found a lot of the stories of trauma it recounted to be, well, traumatizing. If you’re squeamish about stories of violence and sexual abuse and terrorist attacks, you may not want to read it. I’ve read it — and struggled through it — so the damage is done with me. But you won’t necessarily have to go there, as I walk through the PTSD stuff I’ll be covering here and in later posts. I’ll also be drawing from other online sources about PTSD, and I’ll add links to other things you can read. I’ll try to avoid posting links to really awful stories. I don’t want to discount anyone’s experience, but some things I have a terrible time dealing with, and I’m guessing I’m not alone in that.

Note: This nasty habit of revealing horrible accounts to make a point about trauma is a common problem I find in current PTSD literature — it’s often written by psychotherapists who are accustomed to hearing people recount horrific events, so they can work through it. But I’m not a trained and objective psychotherapist, and I can’t stand hearing about awful crap other people went through. It makes me feel awful and wretched; there’s nothing I can do for them, which is deeply frustrating. It’s also sometimes vicariously traumatizing, which is no fun. If some therapists or researchers can find a way to recount trauma without needing to go into all the disturbing personal details, they’d be doing us all a big favor. I try to do it, here, but I’m not sure I do such a great job of it.

Anyway, back to my discussion…

Let’s start with the factors in and contributors to the development of PTSD from trauma (from Chapter 4 – “Who Suffers: How, When, Where, and Why”). They are (follow the links to see what I’ve written about each one – I’ll be updating these over time):

The Nature of the Traumatic Event

Survivor Traits

  • gender
  • age
  • psychological history
  • education
  • ethnicity
  • social support

Reactions Around the Trauma

  • panic and acute stress
  • dissociation
  • biochemical anomalies
  • drinking and intoxication
  • sense of control during the event
  • self-blame and negative beliefs
  • subsequent health problems

Many of these elements of PTSD tie in with experience of traumatic brain injury — even if it’s “mild” — in what I consider significant ways. TBI has a way of exacerbating a lot of problems, to begin with, but when it heightens the impact of something like PTSD, things can get really interesting.

In the past, I’ve talked about how PTSD can lead to TBI. In the future, I’m going to talk about how TBI can contribute to the development of PTSD.

But for now, it’s a beautiful day and I need to go outside.

Till later

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EEGs show brain differences between poor and rich kids

News from UC Berkeley highlights recent research that seems pretty important to me…

University of California, Berkeley, researchers have shown for the first time that the brains of low-income children function differently from the brains of high-income kids.

In a study recently accepted for publication by the Journal of Cognitive Neuroscience, scientists at UC Berkeley’s Helen Wills Neuroscience Institute and the School of Public Health report that normal 9- and 10-year-olds differing only in socioeconomic status have detectable differences in the response of their prefrontal cortex, the part of the brain that is critical for problem solving and creativity.

You can read the entire article here.

Personally, I’m not sure why this is so surprising to people. We’ve known for years that trauma causes changes to the brain — both chemically and cognitively and physically. And poverty contributes to trauma. Of course, there may be a chicken-or-the-egg connection — which comes first, the poverty or the impaired brain function? — but at least someone is getting tangible measurements about the interplay between socioeconomic status and cognitive functioning.

This puts a new spin on haves and have-nots.

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.

TBI Symptom of the Day: Auditory (Hyper) Sensitivity

I’m not sure what’s going on with me, these days, but I have been hearing just about everything around me much more acutely and loudly and with a lot more detail, than I recall in the past. Listening to the radio, I hear all these different aspects of the music that I normally don’t… I hear the individual instruments in the background, all of them in distinct detail… to the point where it doesn’t even sound like a single song, anymore, but a group of instruments each playing their own part.

It’s very trippy. I keep thinking I’m hearing my cell phone go off, but it’s electronic background melodies and harmonies of the songs I’m listening to.

I’ve been hearing my cubicle neighbors really clearly, too, which is fine, except that they’re driving me nuts with their conversations about their trivia calendars. I try to listen to music with headphones on, but somehow their conversations bleed through. I like the people I work with. A lot. And it irritates me that I’m so irritated by them.

I haven’t been much fun, lately.

I’m coming up on my 4-year anniversary of my most recent tbi (I fell down a flight of stairs a few days after Thanksgiving in 2004), and I haven’t been sleeping very well. I try to relax, I try to chill out, I try all sorts of things. But I haven’t been able to really REST, which is a problem.

When I’m tired, everything gets amplified around me. My vision, too. All the colors look brighter. The sounds are louder. The tastes of things I rarely notice are now very noticeable — like the candy bar I was eating the other day — I could taste every major ingredient, and it occurred to me that the chocolate wasn’t the highest quality.

Which is weird. Because I’m not a real candy connoisseur. But I noticed the relative quality of the chocolate.

If I drank, now would be a good time to impress people with my palate for fine wines. But I don’t drink, so I guess that leaves me with candy. Oh, well. The price we have to pay 😉

People seem to think I’m depressed. And the other day someone hinted at whether I might be thinking about ending it all. That really bothered me. WTF? Of course not! Just because I’m low, these days, doesn’t mean I’m planning to check out! Don’t get me wrong… the thought has crossed my mind in the past… especially at times when I realized that the net worth of my life insurance policy was greater than my living worth, and I was feeling like I was letting my family down by not being a better provider. But those thoughts pass. Seriously. I’m not a danger to myself. Am I protesting too much? Perhaps, but no, I don’t want to kill myself.

Not when I’m finally figuring out what’s going on with me and I’m getting help! Fer Chrissakes, it’s taken me 40-some years to get to this place, and I’m not about to just check out because I’m feeling low.

Besides, I feel as though I’ve really been divinely spared a lot of terrible things in my life. Things that went badly for me could have gone a whole lot worse, but they didn’t. And I hung in there, and they got better. When all is said and done, that’s really my whole life philosophy/strategy — just hang in there. Things change. They either get better or they get worse, or they go both ways at the same time. But you never know when things are going to go in your favor, so why not stick around and find out what happens…?

It’s not the most sophisticated or complex philosophy, but it works for me.

Now, if only my hearing would change. Seriously, it’s driving me nuts, hearing every little thing. The sound of the keys clicking as I type is not just the usual clicking. I can hear my fingers making contact with the plastic of the keys, I can hear my thumb brushing along the space bar, I can hear the keys depressing and then clicking against the keyboard base… and the wiggling of the keys has a weird clicky plastic sound that’s very “reedy” and faint. But it’s there.

I just heard my furnace kick in, which is good. It’s getting cold, these days, and heat is good. I hear cars driving on the road near my house, whooshing down the hill as they head into the woods… I hear the baseboard heat kicking in… and the distant sound of a radio  playing. And of course there’s the ringing in my ears. Tinnitus they call it. I call it constant.

“Ringing” is the wrong word for it. It’s not ringing. It’s a constant high-pitched whine that has an almost metallic quality to it. Beneath the high-pitched whine — like a huge honkin’ mosquito always hovering beside my ears — there’s another tone… lower, fuller… again, always there. I’ve had this since I was a kid — when I was a teenager, it used to drive me NUTS!!! I couldn’t stand it!!! But oddly, I got used to it.

It’s really never gone. It just varies in intensity. And when I’m tired and my allergies are acting up, it gets way out of control. The weird thing is, it doesn’t keep me from hearing everything else. It’s like it’s in a different “space” that I hear in… always in the background, but never keeping me from hearing every other sound on God’s good earth.

Good grief!

Well, I know I’m tired, and it’s been a long day, and I have a doctor’s appointment in the a.m., when I’m going to discuss some of my concerns with my pcp, who I actually really like. My doc has got a good manner, and I feel comfortable talking things through with them. I need to do a reality check about some things I’ve been noticing… to make sure I’m not in imminent danger. It sounds serious(?) and it might be. But I won’t know, till I check in.

And it’s definitely tbi-related, so I’m actually looking forward, in a way, to getting to the bottom of the mystery.

I’m being cryptic, I know. I’ll write more later, when I know more. Later

Yes, I’m tired. And overtaxed. I really need to chill for the evening. Eat my supper. Go to bed.

Then go to the doctor and get on with my day.

Onward…

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.

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 😉

TBI & Polytrauma Single-Topic Issue in JRRD

The US Dept of Veterans Affairs has some great information at http://www.rehab.research.va.gov/jour/07/44/7/contents.html

Here’s hoping that folks suffering from TBI will be better served — especially our veterans.