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

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

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

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

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

You can read the rest of it here.

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

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

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

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

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

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

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

Beyond the Invisible – TBI Video for and about Military Veterans

I just learned about a 4-part series about TBI from the Brain Injury Association of NY Military Veterans Project. Check it out – it’s great!

Beyond the Invisible

Part 1 http://www.youtube.com/watch?v=G5eWersQdRw&feature=related

Part 2 http://www.youtube.com/watch?v=TwsGzRLTRqY&feature=related

Part 3 http://www.youtube.com/watch?v=ADC93aoVkP8&feature=related

Part 4 http://www.youtube.com/watch?v=7QBnACJ7eAQ&feature=related

The best cure for self-pity

Just when I’m starting to really succumb to the poor-me’s, I get an excellent reminder of what I really have going for me. It’s true, being a multiple MTBI survivor hasn’t made my life any easier, and I do have a lot of issues I need to overcome. But I’m also highly functional, I have full use of my body, I’m not laid up in a hospital or rehab, and I’m able to fend for myself.

My life isn’t perfect, by any stretch, but it’s a far sight better than it might have turned out, had my falls and injuries been worse. I really believe that I was divinely spared a lot of disaster over the course of my life — for what reason, I’m not sure. I’ve come close — so close — to being badly hurt, attacked, arrested, institutionalized, even abducted (when I was a kid and wasn’t very prudent about whom to talk to and how to interact with people)… not to mention sued and fired and a lot of other things people could do to me that would really mess up my life. Time after time, when I think back, I’ve narrowly escaped serious damage, literally through no effort of my own.

And I wonder, why was I spared? Why am I walking around in okay shape, after those car accidents, those falls, those attacks? Why am I able to walk through life on my own steam, when so many others are unable to do so? Why have I been given so much and allowed to keep so much of what I could (and perhaps should) have lost along the way?

What makes me any better than, say, the thousands of troops returning from Iraq and Afghanistan, who have really severe injuries — some of which cannot be detected from outside their heads?

What gives me the right to live as fully as I do, when others who experience the kinds of car accidents I was in are watching their lives fall to pieces before them, unable to think, remember, function, or even walk around a grocery store without sunglasses on?

What can possibly justify the fact that I’ve managed to keep my house, my family, my car, my job(s), even in the face of a debilitating head injury? What makes me so deserving, so special, so… worthy of all this?

I just don’t know. I look around me at the other folks who have sustained head injuries – from mild to severe – and I marvel at their resilience. I’m not sure I could hang in there the way they have. I look at the pictures and read the accounts and try to put myself in the shoes of folks who have to overcome not only the loss of their memory and their life savings, but also their most basic bodily functions.

And I am both humbled and chastised. The problems that I have — the slowed processing speed, the lousy short-term memory, the inability to concentrate on things longer than half an hour at a time, the chronic pain, the sensory sensitivities, the temper flares, etc. — as challenging as they may be, still allow me to move about the world on my own steam. They may keep me from being fully functional, but they don’t prevent me from looking and acting fully functional (which in our superficial world, is 3/4 of the battle). And as rough as looking for more work may be, the fact that I actually can look for more work, is a gift I mustn’t take for granted.

Who can say why I was spared a worse fate?

Who can say why I was knocked out for only a few minutes, rather than a few hours?

Who can say why my fall out of that tree in 1980 didn’t break my back?

Who can say why the hits I took in high school sports weren’t more serious?

Who can say why my car accidents derailed me for a shorter time than others’ do?

Who can say why I was able to hop up after my fall in 2004 and say, “I’m okay… I’m good,” and get on with my life — even if the getting was a lot less good than it was prior to my fall?

I don’t have the answers to those questions. And there’s this little voice in my head that’s warning me away from comparing myself — favorably or unfavorably — with others and their situations. We all have our challenges, and we all have our limits, and it’s not really for us to judge which is better or worse, which is easier or harder, or even if we deserve what we got.

All I know is, things haven’t been easy for me. But they haven’t been as hard as they could have been. I’ve been spared, and while I do wonder why I rate that, the bottom line is that my difficulties have made it possible for me to understand what it’s like to struggle terribly with things that others cannot see. I know, first-hand, what it’s like to be lost and alone and afraid and totally invisible to the rest of the world. I know what it’s like to live, day after day, wondering if I’m going to lose everything because of some mysterious difficulty I can’t put my finger on. I know what it’s like to be abandoned by people who were supposed to help me, and treated like shit by mean-spirited people. I know what it’s like to be preyed upon because someone senses I am at a disadvantage in life.

And since I know first-hand what all this is like… AND I am still pretty high functioning, I’m in a really great position to help. My brain is broken, sure. But my brilliant mind won’t quit. And since I can write and use this blog and I know how to get the word out online about this TBI stuff, it puts me in a really great position to educate and inspire and hopefully assist others.

God, but this world can be a lonely, confusing, depressing place. But in the worst of times, it’s so very important to identify our strengths and our gifts and pitch in to help others who are in need. I haven’t the faintest idea why I have been spared the fate of so many others like me, who had the same types of experiences but have it much worse. But it’s not for me to know.

All I can know is, I’m a survivor (dammit!), and I have abilities and talents and resolve that I can put to good use for others. I have an extra hour or two in my day that I can spend blogging before I go to work. I have a job that lets me grab a few minutes, here and there, througout the course of my day to examine my life and figure out what works — and what doesn’t — with regard to my broken brain. I have been given  wonderful gifts of resiliency, determination, stubborn faith, insatiable curiosity, and the ability to overlook my own personal pain — physical and emotional — in the service of a cause greater than myself.

I know how to function in this life, in spite of a long history of brain injuries and the personal/physical/social/emotional/financial complications that arise from them. I’ve devised coping strategies (usually from sink-or-swim situations) that have really worked for me. I’ve figured out how to find jobs and stay employed, how to make money and pay for big-ticket items, how to appear functional in the world, how to interact with people well enough to get by, how to support my memory and work with my uncooperative body, and more. I’ve had to face down a lot of real challenges, but somehow I’ve managed to overcome them. And I love to write… so what better position could I be in, than to blog about it all and hopefully toss someone a little help from my own personal experience?

So, rather than sitting around and feeling unworthy and useless and undeserving because I’m able to function well, while other flounder and founder, I think I’ll just get on with my life, get on with my day, and use what I learn for the benefit of others.

God knows, we can all use a little help. And what a shame it would be, if I were the only one who benefitted from the lessons I’ve learned!

Add Your Name to the Open Letter to the President

I just found this over at the Sgt. Sam Nichols TBI recovery blog:

Over the past year and a half, my daughter Erin has spent 8 to 14 hours a day in various military hospitals at the bedside of her husband Sam, a US Marine severely injured in Iraq by a roadside bomb.  It has become Erin’s dream to go back to school to become a speech therapist so that she can help Sam and other wounded veterans of the Iraq and Afghanistan wars learn to speak again.  She hopes to one day work in a veterans hospital.  One of the provisions of the new GI Bill is the option to allow servicemembers to transfer their GI Bill education funding to a spouse or dependent.  But—the military has been dragging its feet on getting the regulations in place, so servicemembers are still waiting for that benefit.  The Obama Administration can and must get the bureaucracy moving and make this benefit a reality.

In the coming months, President Obama has a unique opportunity to make a series of critical decisions impacting Iraq and Afghanistan veterans. Sign the open letter urging him to enact these four critical policies in his first 100 days:

    · Ensure that veterans don’t have to fight for funding for hospitals and clinics.

    · Prioritize veterans in the economic stimulus package. (Note: It may be a little late for this, but it’s still a good idea.)

    · Implement GI Bill transferability.

    · Aggressively address troops’ mental health injuries.

Add your name to the open letter here.

I just did

Army sees sharp rise in suicide rate

According to the Los Angeles Times, military officials have reported that this past year (2008), the suicide rate among Army soldiers reached its highest level in thirty years. The news came in a report that pointed to the inadequacy of anti-suicide efforts undertaken in recent years.

From the story:

At least 128 Army soldiers took their own lives last year — an estimated suicide rate of 20.2 per 100,000, a sharp increase from the 2007 rate of 16.8.

Note: That’s a nearly 20% increase in the suicide rate — and it also does not include additional folks below. I’m not sure about the total math/percentage increase (math has never been my strong suit, and I’m short on time), but 143 is more suicide casualties than 128.

It marked the first time the Army rate has exceeded the national suicide rate for the corresponding population group — 19.5 per 100,000 — since the Pentagon began systematically tracking suicides nearly 30 years ago.The 2008 figure does not include 15 additional deaths under investigation that officials suspect were suicides.

Also Thursday, Marine Corps officials revised their suicide numbers upward, reporting a rate of 19.0 per 100,000 in 2008, the highest for the Marines since 1995.

“Why do the numbers keep going up? We cannot tell you,” Army Secretary Pete Geren said.

Army officials believe that contributing factors include emotional and psychological stress caused by repeated combat deployments, along with the toll that the tours have taken on marriages.

Despite official reticence on this, there are a whole lot of people who can add insight into how and why suicide can go hand-in-hand with traumatic brain injury. I found this presentation on Suicide Attempts Following Traumatic Brain Injury that helps shed light on things.

I think that a wide array of issues play into this — the times we live in, when a state of war is pretty much constant (be it on battlefields abroad or at home, where the War On Terror is inescapable), so much intense pressure is placed on military personnel whose service is more needed/desired/required than ever before (and on so many more levels), and there is far less social and cultural support for our walking wounded, once they return home. The fact that soldiers are being deployed out of reserve ranks — not career military — complicates things, too, I believe. Plus, our whole society’s treatment of our soldiers is a recipe for disaster — on the one hand, those who serve are given no choice but to go, often leaving dependent families behind, but the society which requires their unquestioning service insists on preying on those left behind. Banks foreclose on soldiers’ homes. Employers refuse to allow families and loved ones any leeway in seeing these soldiers — I used to work with a woman who quit a job she needed because her employer wouldn’t give her a few days off to spend with her son who was being redeployed to Iraq. And once our service members return, they are all too often NOT given proper care by those charged with their well-being, and they are returned to an ignorant, self-absorbed society which doesn’t understand their injuries, their needs, their unique circumstances — all created in the name of protecting the very ignorant, self-obsessed society that treats them like crap.

And adding insult to injury, the wounds that many of our soldiers sustain are hidden from the rest of the world — TBI & PTSD — or are considered signs of “bad behavior” or “poor discipline”, rather than bona fide injuries with real physical and mental health consequences. So, rather than being able to find help, these folks — and their families, who may or may not know about TBI and how it can and does affect them — are marginalized even more from society, forced to fend for themselves in our “information society” with injuries that A) keep them from participating fully, B) keep them from realizing the extent of their difficulties, and C) keep them from reaching out effectively to get the help they need.

The truly frightening thing — as if all this isn’t horrifying enough — is that their problems will ultimately become all of society’s problems, sooner or later. As though it weren’t bad enough that our men and women in uniform are being severely injured in ways that prevent them from accessing help, but their injuries over the long term can morph and evolve and become far more serious and far more intractable than they might be, if they were able to get help up front. And that has ramifications for their families, their employers, their communities, law enforcement, public services… really, anyone who has anything to do with them if/when they’re having bad days on down the line. And some lobbyist-compromised politician in Washington will propose harsher, longer, more draconian laws and prison terms as a “solution” to all these “bad people” who “can’t control themselves”.

Of course (and I’m being sarcastic now), this is all very well and good for the prison industry, which can hire out inmates to corporations that need cheap labor. In the absence of illegal aliens and people willing to work under the table and cheap offshore personnel, there could eventually be an abundance of prison-based workers whose labor is available for pennies on the dollar, all within the borders of these United States.

Okay, I’ve stopped being sarcastic. For those who are concerned about the possibility of a loved one who’s sustained a TBI and PTSD during deployment, there is a lot of help available out there online that you can access for free. There are lots of websites that talk about TBI, there is a lot of information to read. There are videos on You Tube you can watch. And there are online forums for vets and their families where you can turn for support.

You do not need to suffer alone. There are many, many people — military and otherwise (I’m not military) — who have lots of life experience with TBI and dealing with it constructively. You don’t have to be at the mercy of the VA or officials who aren’t able to be forthcoming with the facts and details about TBI (and PTSD) and how they affect people’s lives. So, reach out. Speak up. Participate and contribute. We cannot change the injuries we’ve sustained, but we need not suffer in isolation. We may not be able to 100% cure our conditions, but in some way or another, we can heal.

God bless.

Blast overpressure is generated from the firing of weapons and may cause brain injury

InteBIC has a post on how Blast overpressure is generated from the firing of weapons and may cause brain injury.

Text from a press release from University of Gothenburg in Sweden, which publicized the findings is below:

The brain may be injured by the noise, which is produced when, for example, an anti-tank weapon (Bazooka, Karl Gustav) or a howitzer (Haubits) is fired. Scientists at the Sahlgrenska Academy demonstrated mild injury to brain tissue. In response to this, the Swedish Armed Forces restricted the number of rounds per day Swedish personnel can be exposed to.

A number of reports, which have appeared during the last few years, have shown that the brain is sensitive to blast. This study determines whether the occupational standards for the highest levels of blast exposure were valid enough to avoid brain injuries. Traumatic brain injury is very common among war veterans from Iraq and Afghanistan and the majority has been exposed to explosions. The soldiers have symptoms of disorders of memory, mental processes, emotion, sleep, speech, vision and hearing. The symptoms may be similar to those of post traumatic stress syndrome, which may be caused by factors other than combat experience.

The Swedish Armed Forces sponsored a study, which has been carried out by scientists at the Sahlgrenska Academy, University of Gothenburg, Sweden. They have examined the effects of noise after the firing of a Haubits, an anti tank weapon (Karl Gustav) and an automatic rifle and by the detonation of plastic explosives underwater. The study was done on anaesthetized pigs and rats.

“We examined the maximal peak level of the blast in the brain transmitted from the blast in the air, as well as, brain tissue changes that were detected with the microscope, says Annette Säljö, one of the scientists who conducted the study.

The noise produced by the firing of both the haubits and the anti-tank weapon exceeds the occupational standards for highest levels of blast exposure. The scientists found that the maximal peak levels of the blast were unexpectedly high in the brain, i.e. that skin and bone appeared to protect the brain poorly. The results suggest that the degree of transmission of a pressure wave from air or water to the brain depends on the dominating frequencies in the frequency spectrum of the noise; low frequencies are transmitted considerably better than high frequencies.

The microscopic examination of the brain showed that the blast from certain weapons produces small haemorrhages (bleeding) in the brain tissue and the meninges (lining of the brain). The examination also suggested that blast exposure leads to the development of brain edema, i.e. increased fluid content. The scientists were later able to support this finding with other measurements. The results are in agreement with findings in the brains of soldiers who had been injured or died after being exposed to explosions in wars, from WW1 to the war in Iraq.

In summary, the study shows that the maximal peak levels of blast generated by the firing of certain weapons led to a small but measurable effect on the brains of pigs and rats.

The study also showed that this effect on the brain becomes worse with increasing maximal peak blast levels. The results poses the question as to whether exposure to even lower levels of blast than previous thought injurious might be contributing to the large numbers of mild traumatic brain injuries in American military personnel.

“This is of course an occupational question for Swedish Armed Forces. In light of the results of the study, the Swedish military has instituted restrictions in the number of firing rounds a person is allowed to be exposed to in a single day”, says Annette Säljö.

Direct studies on humans are difficult to perform, since biomarkers of injury in cerebrospinal fluid or blood and imaging studies such as computed tomography (CT) and magnetic resonance imaging (MRI) do not appear to be specific or sensitive enough to detect mild brain injury.

This being the case, I’m inclined to wonder if TBI is the signature wound of only the recent Iraq and Afghanistan wars, or if it’s been a hidden wound and disability that’s never gotten proper attention in wider society, once soldiers got home.

Big guns and explosions have been hallmarks of war for a lot longer than the past 10 years, and I suspect that a number of social ills that plague us today can be traced back to brain injuries sustained in military service (and in other areas), which were never recognized or addressed, and which continued to cause problems for veterans after their return home.

I think, perhaps, the prevalence of domestic violence, crime, drug and alcohol addiction, and a whole host of other extreme cognitive and behavioral problems in the general populace may have some (tho’ not all) origin in head injuries sustained in earlier generations.

I have been personally impacted a number of times, by what I believe were head injuries sustained in wartime by earlier generations. The father of a dear friend of mine made his family’s life a living hell, with drugs and alcohol and violence and all sorts of intepersonal issues he never got help for, after having done several tours in WWII, having been injured several times, patched up and shipped back to the front. His father was a WWI veteran, too. From what I heard about them both, they exhibited a lot of the symptoms that go with TBI.

Another friend of mine had a father who was also a WWII vet, and while he wasn’t nearly as extreme as the other man, he still showed a great many signs of having sustained TBI(s) during his tour of duty.

At the risk of drastically oversimplifying a complex chain of events and trivializing the mysteries of authentic human experience, consider this scenario:

Dad marches off to war, is exposed to multiple blasts and head traumas in the line of duty, returns home to his family, starts having interpersonal trouble, gets in trouble with the law, drinks heavily, hits his wife and kids (who may also sustain brain injuries from his violence), and has a history of interpersonal and vocational problems throughout the course of his life. His children, who sustained mild traumatic brain injuries from his beatings, get into trouble, get into fights, get hit on the head more, have continued cognitive/behavioral/emotional problems, and end up either in jail or in problematic relationships or in a string of ill-fated jobs, or all of the above. For some of them, the only place they can really turn for structure and dependability is the military, which is particularly well-suited to providing a hospitable environment to wounded warriors.

One generation after another reaps what the prior generation sowed. And the cycle continues.

I’m not saying it’s always so, just that it might just be possible. War and TBI — even if you never get hit by a blast, but man a big gun — go hand in hand, as far as I’m concerned.

As if life itself isn’t rough enough on us, our repeated military conflicts and the scores of wounded warriors returning, in virtually every American generation, seems to provide a steady stream of head-injured individuals who are then expected to just fit back into society. But it doesn’t work. Not without help.

And these days, especially, we need to come up with new ways of helping. Because the old social institutions of church and lifelong jobs with the same employer and morality codes and common social standards, which used to provide a predictable set of rules for what is right and what is not — and hence helped individuals who had issues figure out where they were in the world — are pretty much gone. Or they don’t have the same validity they once did. I believe that the old institutions actually did us some good, in that they made it possible for people like me to function adequately in the world.

There’s a reason I gravitate to working for large, well-established corporations — they give me the structure and social framework within which I can work productively and know my place. Working for little companies doesn’t help me. It unsettles me and makes me very unsure of myself. And being raised with a strong religious influence and a strict moral code made it possible for me to participate in life as a person who “knew” the difference between right and wrong. Because it was drilled into my broken brain, till I didn’t need to think about it anymore.

Speaking of work, I’ve got to get going to my job, right now, but I did want to post this piece of information about the weapons impact on brains.

It’s important.

An Army of Lost Souls

Great post over here — http://uoflama.blogspot.com/2009/01/army-of-lost-souls.html talking about Veterans’ issues, specifically PTSD.

It’s incredibly troubling to me, that so many veterans are lost between the cracks, and that so many are returning from the wars we have going on in Iraq and Afghanistan, with serious, life-altering injuries that are not only invisible to the rest of the world (until they show up in their behavior and changed abilities), but may also be invisible to them, depending on how aware they are about their TBI(s) and how they deal with it.

The VA may intend to help our veterans, and our society may in fact have promised to provide lifelong healthcare to them, but the complexities of not only PTSD but also TBI, and the fact that they can so often co-incide, doesn’t make me very hopeful about the prospect of this happening with nearly as much effectiveness as it should.

In the absence of adequate medical care (which suffers not only from beurocratic red tape, politics and organizational inefficiencies, but also from the criminal dearth of information about these very-common conditions — I mean, come on people, folks have been getting royally screwed up by war and smashed in the head for as long as there has been armed conflict!), I think that we as a society need to come up with some better ways of dealing with this.

One way that I can think of, is the blogosphere. The internet. Say what you will about “egocentric amateur bloggers with nothing better to do than blog, and no professional reportage qualifications to speak of”, but we’re actually the ones who are making valuable, pragmatic, experience-based information we possess available to others in need of help. And we’re offering it for free, without requiring an appointment set or a referral from a primary care physician or specific insurance coverage. We have the most precious thing(s) to offer to someone in despearte need — information, experience, and proof that someone can — and does — survive terrible things. We’re laying our personal experience, strengths, hopes, fears, realities, coping mechanisms, out there in full view for all to see, and we’re doing it not only out of ego, but from a genuine desire to help others. And anyone who knows how to find us — at the local library, on their work computer, on their home laptop — can access what we have to give.

It’s Sunday, which in the world where I was raised, it’s a day of rest. And I will rest soon. But for now, I’ll perform an act of service and put links to search results for tbi and ptsd-related blog posts in the left margin of this blog.

It’s the least I can do for the folks who sacrificed their very brains for our nation — as well as anyone else who needs to find help.

A reply to a comment that took on a life of its own

I had started to respond to NEDream’s comment and the reply really took off… I’m incredibly tired, these days, but I did want to post this…

NEDream, I hear you… There is a lot I would love to be able to do, but given that I’m coming from a place that’s impaired — and often in ways I don’t even realize — it’s hard to know just what to do. I’d love to be able to go on lecture tours, meet with professional caregivers who know far too little about tbi, consult with best-practices people, and generally contribute to the widening knowledgebase for professionals — the front-line care providers and experts in these extreme health matters. But I tend to run out of steam (my high energy notwithstanding). Plus, I’m dealing with additional health issues that had escaped me as being real problems, also I think in part due to my cognitive issues.

How ironic, after all these years of being beaten up by others for being “less capable” because of injuries and deficits I myself could not detect, now I’m able to detect my deficits and identify my injuries, but the people who would/could help me are totally thrown off by my ability to deal… Catch 22, if ever I heard one. And it makes me absolutely NUTS to think of how much good I (and others) might be able to do others like us — I know I would have benefitted greatly from someone like me crossing my path about 10 years ago!!! — yet the experts and people who are guarding the castle of acute health care are barring us from crossing the threshold because, ironically, we’ve been injured. That’s what it feels like, anyway. I might be totally off-base about this, but whenever I talk to a professional psychologist or neurologist or neuropsychologist, I get the sense that they are looking down their nose at me… even though I hold in my possession a vast amount of experience and knowledge that could probably help them become better practitioners… if only they’d let me help them. I do want to help. But I get the impression, I’m not “allowed”. After all, I am brain-injured 😉

I too am really torn about what to do to help. I think that people like you and I are extremely well-placed for this time in history. Not only do we have access to technologies that put our words in front of total strangers and people who may be looking for information we have, but we also have the kinds of experiences that people used to NEVER (and I mean NEVER) talk about. I should know — I came from that world. And I’ve been dealing with this –crap– complicated situation for most of my 43 years. My family was so ashamed of me, they didn’t understand why I did the things I did, why I couldn’t figure stuff out as quickly as others, why I would say one thing and act like I was totally right, when I was totally wrong… why I couldn’t finish any chores they had me do, and I would always miss some detail — like a corner of the hedge I forgot to trim or a portion of the yard I forgot to mow or the leaves I raked into a pile, but couldn’t manage to haul away to the compost heap. They just didn’t understand, they thought — I guess — that it was God’s will that I suffer like that, and I was just their cross to bear. They were grateful to have other children who didn’t have all the issues I did, but I was always there to remind them that something was amiss… even if they didn’t understand what that something was, or why it was.

Now people are talking about this… and I think that as people look back, they will see that head trauma is much more a part of human experience, than we thought, before. My father-in-law was in WWII (he passed away over 10 years ago), and from the stories I heard about how he was when my spouse was growing up, it sounds like he totally had a TBI — if not several — when he was at war, if not earlier in life. He was always a real fighter — always getting in brawls, beating on other guys and getting beaten on — and the stories I heard about his temper, his violent outbursts, his need for silence at the end of a long day, his sensitivities, his quietness that would suddenly explode, his troubles with drugs and alcohol, and his constant remorse over what he’d done wrong in life… well, it sounds pretty familiar to me, and I suspect that he had sustained TBI’s throughout his life that colored his experience. But back then, when he was active as an adult, men were supposed to be the strong, silent types, not show any emotion, not betray anything about what was going on inside him. I think back now, and I can totally see how he just suffered and suffered and suffered in silence, because he — and everyone else — didn’t understand the nature of his injuries.

But as I was saying — and I’ll finish this thought sooner or later 😉 — now people are talking about TBI and they’re starting to lobby for assistance. They’re starting to raise awareness. They’re advocating and agitating, especially on the internet. Now that we have the web at our disposal, we can get the word out there about our experiences. And even though we may be “pedestrians” and “lay” people, we are still experts in our own experience, and we can share with others what it’s like to live — and live well — with (and in spite of, or even bacause of) our injuries. There’s that whole “wounded healer” paradigm that some therapist friends of mine love to talk about. And when it comes to giving people hope, there’s nothing like hearing from others that they’re in the same boat as you, more or less.

One of the things I really disagree with, in regard to current thinking about TBIs is the concept that “every TBI is different”. That may be true, but I think that some health care providers use it as an excuse to not fully engage with TBI survivors and not explore all the options. I think they also say that to cover their asses, so we don’t get our hopes up and have “unrealistic” expectations of them. I totally agree with the author of “Brain Heal Thyself” (I think that’s they title) who really takes issue with that “ever brain injury is different” attitude. Yes, we are all different. Yes, we all have different injuries. Yes, our brains are all different. But we share common traits with one another — in particular, the part of ourselves that’s been hurt — that can unite us and give us a sense of belonging and community. To impose a sense of isolation and alienation on someone whose most prized physical resource has been damaged, is not only unfair, it also strikes me as being a little cruel. All because doctors don’t want to admit that they don’t have all the answers, and they might actually learn something from us… I know I’m over-simplifying and I’m venting. I’m tired, after a long day of being tired… But I think my complaint has merit.

And I’ve got lots of complaints. (I do vote, after all 😉 ) I’m one of those people who cannot help but think critically… not because I hate everyone and everything (though I have my moments), but because I feel that criticism is one of the highest forms of flattery — if I didn’t care, I wouldn’t bother to criticize. I’d just let people wallow and rot. But I do care. I want to help shed light and explore things that people cannot see or have overlooked. Unfortunately, my combination of injuries and personality conspire to make me look different than how I feel, and I often don’t realize that I’m coming across as rough as I am. That’s why I prefer to write — it gives me a chance to edit before I post what I say. Sometimes I speak/write too quickly and I get in hot water, but that’s just par for the course.

I’ve been writing a lot lately, because I’ve been pretty freaked out by some health stuff that’s come up, and I’m worried. No, I think terrified is a better word for it. I’m sure it will all work out, but given my pathetically limited ability to communicate verbally with doctors, I’m really concerned that I won’t be able to communicate with them, and I won’t get the proper care. It’s not a small thing I’m dealing with — and I need to deal with it — but I’m just not sure how I will be able to do it.

I’ll post more about that later, but right now I need to stay on topic and move this along. A lot of things are coming up with me, so it’s not difficult to move *something*. Ironically, the more fatigued and uptight I am, the more I’m driven to write and create and comment on any- and everything that crosses my path. That, and with Veteran’s Day and thinking about how shafted so many of our brain-injured wounded warriors are being… how alone they can be… how lost and alone they are, without sometimes even knowing WHY… it nudged me into action. For my father-in-law, who was wounded multiple times in Europe, and got sent back, time and time again, to be shot up and patched up and sent back in… For the fallen who gave their lives… For the walking wounded who fall through the cracks… for all of us who have been knocked around in this rough-and-tumble world, and may not always have a fighting chance to recover…

I can’t believe that story about your mom’s friend’s husband’s son… I would like to be all cynical and jaded and not be affected, but I literally cannot believe that this actually happened. Pardon my French, but… Oh, for Chrissakes! Holy f*ing sh*t — WTF!?!?!?!? That just totally freaks me out. A neurologist suggested that the guy remove a *vertebra* to deal with the pain?!?!?! WTF?!?!? I mean, is this what they teach people in med school? I have a relative who’s a freshly minted doctor, and they have very little positive to say about neurologists. They just don’t trust them. And after the stuff I’ve been through with some supposedly very good ones, I have to say I’m starting to agree. Of course, there’s also something to be said for second opinions, and personally, even if I was in horrific pain, I’m not sure I’d have the balls to have one of my vertabrae removed(!). That just sounds so extreme. I guess I’m just a wuss, but, man, oh, man — that’s just HORRIBLE.

Okay, I’ll calm down, now, but I get SO upset when I hear about people’s lives being ruined even more than they already are, because some doctor — who is in a position of trust — gives them BAD information, for whatever reason. It’s all the more upsetting, because I really believe it’s avoidable. There are so many of us walking around with this vast amount of life experience, who could open some eyes — if people (including doctors) would only listen. And the experience we carry around with us can apply on both sides of our issues — both towards informing caregivers and experts about what the deal with us REALLY is… and towards informing the walking wounded that their doctor is NOT God, and they can be wrong about so many things.

I think the medical establishment, as it now stands, needs a good deal of work, not least of which is a good dose of humility and the recognition that something is systemically wrong with the AMA and how it trains its doctors. If there were something I would change, right off the bat, it would be the practice of teaching doctors about the human body by using cadavers. I think the practice of studying a dead corpse to learn about the living body is a BAD IDEA, and it starts you off on the wrong foot. Of course, I’m not a doctor, so who is going to listen to me? I’m an engineer and I make my living from creating solutions based on logic, not mystique and precedence-based assumption and a sleep-deprived sense of entitlement, so I’m probably not the sort of person a medical person will listen to. But it seems to me, if you’re going to treat living people, you need to learn how living beings survive and thrive. Call me crazy…

I know I’m just venting, here, and I’m not being supportive and productive and making a positive contribution, but I just don’t understand this whole dynamic with doctors. I don’t understand why they think they’re all that… why they think they can tell people to remove a vertebra… why they think they can toss around diagnoses (correct or not) and pretend that they are God. I just don’t get it. It seems really dangerous to me. Really dangerous and not very bright. I suspect all that sleep deprivation during their training does something to their thought processes, and the fact that so many of them deal with crises so much… and their limbic systems get whacked… amygdala alerts 24-7 can’t be good for the human system. So I think they may end up getting turned into medical machines of sorts. I’m just thinking out loud, here. I do have tremendous compassion for the folks we turn to for our life-and-death decision-making. And I would never have the nerve to step into that role. It must take a very special kind of person to do it properly. Problem is, I’ve met precious few doctors who I’d trust with my life — I do know a few, and I literally would trust them with my life. But the majority… I just don’t know how our society has gotten to a point where we value human life so little, that we turn our fate over to people whose egos are clearly driving their decision-making, no matter what anyone else has to say about it. “They’re the doctor…” And that’s supposed to be enough?

What can we do about this… indeed? The more I think about it, the more impotent and ineffectual I feel. There are SO MANY PEOPLE SUFFERING, because they cannot get the right information, and when they do get information, they cannot decipher it, and they’re left to their own limited devices… just when they need more help than ever. I fell so deeply for the suffering folks — tbi survivors and family/friends alike — who are struggling with this seemingly insurmountable obstacle, given no hope, told that they have lost just about everything, and whatever is left, they’re going to lose, too. I almost can’t bear the thought of all that suffering — especially in the lives of our returning veterans… and their families, too.

It’s just so hard. And I speak from many years of experience. IT IS HARD!!! It is harder than anyone with a fully functioning brain can imagine. It is harder than anyone who has not been through it can possibly comprehend. TBI — by its very definition — defies comprehension. And it leaves us to fend for ourselves, come what may. Some days, I can’t believe I’m still here. All the bad decisions, the run-ins with cops, the accidents, the screw-ups, the near-misses, the close calls… And all the people I’ve totally pissed off and alienated, who had once been valued allies and friends… Man oh man, am I blessed to still be here and be able to write this! I am so deeply grateful to whatever higher power out there thinks my life is worth saving. I am so profoundly grateful to all the strangers who helped me (or who just resisted the urge to take advantage of me)… the friends who bore with me… the (few) family members managed to love and accept me… the partners who — for however long — put up with me. And the person who has managed to hang in there with me for the past 18 years. I am indeed blessed. And I can’t account for it at all. I mean, when I’m in a bad way, I’m REALLY in a bad way… just impossible to live with… How I still have what I have, is nothing short of a miracle.

Now, I can’t speak for anyone else, but I feel utterly compelled to help. To do something. And my “thing” is writing — detailing my life experience in as much depth and breadth as I can. I don’t care much for fame and fortune — well, fortune would be nice, and I won’t turn away financial contributions to help me dedicate my life to educating people about how to live well in spite of TBI — I just want things to change. I want people to hear about someone who has sustained multiple TBI’s throughout their life and has managed to put together a really, really “normal” sort of existence that nobody — especially not my parents — ever thought I would have. I want people to know that they don’t HAVE to lose it all, just because they have a brain injury, and in some ways, they may even find themselves able to do different things better than ever. It takes a long while for a lot of us. It took a long while for me, to sort through everything. But it can be done. TBI doesn’t have to be a death sentence. And it doesn’t need to mean the end of everything you care about and love to do. Yes, you may need to part with some things that used to mean a lot to you. I lost a bunch of stuff, after my last injury, including my ability to spend time in open spaces, be comfortable around strangers, my love of reading fiction, and a really, really good job. My injury cost me hundreds of thousands of dollars in personal net worth. And I lost a lot of friends along the way. But you know what? I’m still here!!! And I’m still loving my life! I’ve let that old shit go, about how I was so wronged and life is so unfair. Of course I was! Of course it is! No kidding. But I’ll be damned, if I’m going to let that stop  me from living my life.

Seriously, money can be replaced. And every day, I’m finding ways of regaining/restoring the things that mean most to me. I don’t WANT to dread reading stories, anymore, so I’m practicing reading story-driven books, like autobiographies and personal memoirs of people who have overcome things like me. I’m also starting to read fiction online, which I can take in shorter bits and pieces, while I’m at work. I’m coming to terms with the anxiety and fear that’s been driving me all my life, learning new techniques for how to deal with it all — the first part being, just realizing how driven I am by anxiety and fear… I never realized it till this past year, when I really started coming to terms with my TBI’s. And now that I’m aware of it, I can actually do something about it!

I’ve also got new friends who love and accept me for the odd and sometimes bizarre creature I am. Jobs come, jobs go. I’m still breathing, I’m still able to put one foot in front of the other. And as long as I don’t hold myself to unrealistic expectations, including the expectations of others who have some pretty superficial values, and I give myself a break and remember I STILL MATTER AS A HUMAN BEING!!! well… I’m fine.

What we can do to help — and yes, now I’ll finish the thought 😉 — is write all this stuff down. Everything. As much as we can record. Put it out there. Spread the word. Make it possible for people to do the social networking thing with our blogs and do social bookmarking and all that. Do podcasts. Do teleseminars. Do webinars. I, myself, have to really watch my energy, and I have such a hard time dealing with people in person, that I’m pretty much excluded from the public speaker circuit. And I get so turned around when I’m actually talking to another person, at times, that I can’t get my words out, and I sound like a real space-cadet. That’s not who I am, but that’s how I present, a lot of times. So, I recognize my limits, realize what I cannot and should not do… and I do something else. Like blog. The things that I cannot do, I really should not do. But the things that I can do, I can do really, really well. So, I figure out what works, and I just stick with that. I let the other people out there do the things I cannot — like public appearances and YouTube videos and podcasts and whatnot. We all have something to offer, no matter how severe our array of deficits. The trick is finding out what works for you, and doing that as well as you can (without completely exhausting yourself, which I am prone to do).

Very, very cool. Wow — something that actually works. Imagine that… I hope it continues to work for you. By all means, do post info about this here, if you get a chance.

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.

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