The Importance of Team Support on the Road to Recovery

It would be nice to think they exist

I found an interesting article today — about a Marine who did something about the isolation that veterans go through when returning with injuries – especially TBI.

They train together. They fight together. So if wounded, why shouldn’t they go through recovery together? This was the question that Lt. Col. Tim Maxwell asked about his fellow marines being discharged from the hospital and left alone to recover from injuries of war.

“When you’re in the hospital, you are with other wounded warriors. But once you are out of the hospital, it’s tough,” explains Maxwell.

He should know. While on his sixth combat deployment, Maxwell sustained a severe traumatic brain injury (TBI) during a mortar attack in Iraq. When he awoke a month later at the Bethesda Naval Medical Center, doctors didn’t think he would survive. The
shrapnel that penetrated his skull inflicted severe damage to his brain, impairing his vision and leaving him unable to talk or walk.”

Read the full article here (it’s a PDF download). >>

This is the kind of news I love to read – the kind of forward thinking that comes from within the ranks of TBI survivors. I understand that Lt. Col. Tim Maxwell is now retired, but I believe Maxwell Hall is still going.

And I have to wonder if these things are still going on, if they are still holding up under present circumstances, or if the resources and halls and support networks are able to stand on their own, after their founders retire or just can’t do it anymore. I wonder if the “superfriends” ever get replaced when the original members bow out or fade away. Of course, in the comics, none of the Superfriends die or are destroyed. I think… But in real life, does that really happen?

Seldom.

I suppose in a way we are all on our own, and we all have to take it upon ourselves to take steps to get better, when we get hurt or injured. But what about those who just cannot find it in themselves to do that? What about those whose brains are damaged in ways that keep them from even wanting to get better… or that keep them from even realizing they need to improve?

And what about those who go back to lives after their injuries, surrounded by people who neither know – nor care to learn – about what TBI / concussion can do to a person, and who just can’t bring themselves to help.

Yesterday I spent much of the day with a friend who has been through some serious sh*t and could relate to some of the difficulties I have, now and then, with fatigue and light/sound sensitivity. All through their growing-up years, they were in and out of trouble, in and out of institutions, so when I talk about having a tough time at this or that, they seem to get it. And they don’t judge.

I don’t know how much they know about my TBI history – I’ve never brought it up, but my spouse may have mentioned it in past years when I was having a much more difficult time than I’m having now. I just don’t have the heart to bring it up in person. Whenever I try to discuss it with people who didn’t know before, they usually either make some blanket statement about how “smart” I am and how it’s just not possible that I could have any brain issues… or they back away from me, become distant, don’t bother with me the same way the did before. So, I haven’t said anything about it, specifically.

But that didn’t actually matter yesterday, because I could talk about the difficulties I have with getting tired and then having everything crash in on me… or losing my cool and freaking out… or whatever various difficulties come up in the course of my everyday thanks to TBI stuff. I could talk about these things not as TBI-related, specifically, but just generally in my life. The “why” about it didn’t matter as much as the “what” — in other words, I could just discuss the issues without getting into the root causes, and get some feedback about what to do.

And that’s the thing that I have learned will help me, when I need feedback or support — not getting specifically into the TBI-nature of my issues, but just talking about them as I experience them.  So long as I don’t go down the road of “I was brain-injured in 2004, and nothing has been the same since”, and I talk about the things that happening with me just for what they are, I can actually get some useful feedback from people.

It’s the “brain injury” thing that keeps me cut off from the rest of the world. It’s the root cause that is the problem with people, I have found. But when I don’t get into the causes, and I stick with the end result that I need to manage, people can actually hear me and help me out. Or at least not push me till I’m crazy.

And it’s funny – when I first learned about TBI and finally had an explanation for why I was so screwed up and everything was falling to pieces around me, it was like I was finally free. And I thought that telling others and educating them would help them the way it had helped me. But all it did was freak them out. They just couldn’t deal. And everything got lonely really quick. Then I got to a point where I made peace with this loneliness and just focused on my own TBI recovery, understanding how it affected me, and getting a handle on what I really wanted to change in my life. Then I got to a point where I was less focused on the brain aspects and more concerned with the end results and managing them, getting them better. And now I’m at a point where I am mainly interested in having the best life possible, without making everything that goes wrong about my brain’s problems, and making it more about getting on with my life, picking myself up after I fall… and being able to talk to people about my issues in ways that they can hear and support – instead of getting all freaked out about it.

That’s how I get my support, these days. I’m still learning the best way of doing these things, and I still don’t have a lot of friends I can actually talk to about what I’m experiencing. But at least I’ve learned a thing or two in the past four years.

Actually, you know what…? I’m really tired and foggy. I’m really struggling to put words together, right now, and my head feels like it’s packed over-full of cotton. I have been at this computer for the past 2 hours, reading and writing, and I need a break. So, I’m going to pick myself up, change my clothes, then get out and walk in the woods for a while… and be quiet and settled and not worry about much of anything.

And that, my friends, is probably the best support I can give myself today.

From Drama to Trauma in a few easy steps

Drama... trauma... not too far removed

When it comes to understanding the connections between TBI and Traumatic Stress, it’s important to think in terms of the whole person and their whole experience. Neither conditions exists in a vacuum, and they both feed directly into each other in really sinister ways. What’s more, with TBI, you don’t need a particularly bad experience to produce bad results in your life. Even good stress can contribute to a downward spiral that just is NOT good.

Here’s a picture:

From drama to trauma, the TBI way - click the image to see a larger version

And here’s how it all shakes out:

All the Excitement! The drama can be good or bad, positive or “negative”. It can be invigorating, or depleting, but ultimately with TBI, when you have way too much excitement, you can get into trouble.

First you have The Rush

Then you have The Physical Toll

Then you get The Cognitive Collective THREAT to the person & their survival

Then you get Trauma (and hence, traumatic stress)

Here it is, step-by-step:

The Rush

  • Adrenaline is flowing big-time. It feels great! Or maybe it doesn’t. The adrenaline might be in response to something dangerous, something unwelcome.
  • Excitement is the elixir of life. Woo hoo! Many times, the degree of excitement we feel depends on how we interpret the experience. If we are convinced we can handle whatever comes across our path, it can be exhilarating. If we’re convinced we can’t handle anything, it can be depleting.
  • Thrills, chills, and adventure – makes you feel more alive than ever. In the case where there are unwelcome forces at play, this can dull the anxiety you feel. Or in the case where there are welcome things happening, it can make them feel even more interesting.
  • Fear plays into it a little bit — or a lot. What’s a thrilling situation without a little fear?
  • Biochemical floods douse your body with all sorts of complexity-dampening goodness that clears your mind and brings your body to life. Only the most critical things come through, which can be a relief. You also get all pumped up, which in itself can feel good.
  • Whole system ON so you can handle whatever comes your way.

With Adrenaline, you eventually get a little wired. Maybe a little, maybe a lot. Your body can get taxed from all the adrenaline, if it goes on for a while without taking a break. Like if you’re in combat, day after day. Like if you’re working on a huge, critical project that will have an impact on your career. And with TBI, if you’re not thinking very clearly and you get nervous/scared/anxious about the choices you’re making and your ability to handle the situation you’re in, you can get even more flooded with adrenaline.

All the Excitement at first makes you ALERT, but eventually you get Fatigued. It can’t go on forever without some sort of relief. It’s like driving your car at 95 mph, mile after mile. You need to stop and refuel, every now and then. But with all the excitement, you can lose sight of that and want to just stay in the “zone” where you’re charged up.

Thrills may keep you Always-on, so that you eventually Cannot Rest – you’re like a machine that’s jammed in high gear. You can end up in a self-perpetuating cycle of action/adventure that feeds itself and wants to stay ON, to keep as sharp as it thinks it is.

Fear can be healthy in small doses, but too much of it over a period of time gets you Strung out. Remember all those biochemicals flooding you? They’re not going anywhere until you can take your foot off the gas pedal. But doing that can put you into a fear state, which can plunge you into exaggerated responses to fairly minor provocations. Fear tends to feed itself.

Biochemical floods leave you Physically depleted, and that in itself can make you depressed and unwell. Physical depletion includes the brain — it needs about 20% of the energy in your body, so if your body is low on energy, so is your brain.

Having your Whole system ON over an extended period of time leaves your Whole system TAPPED OUT like nothing else.

As a result of all this excitement and depletion, you can end up having a ard time processing complex ideas. The Excitement and ALERT state leaves you Fatigued, which then can lead to Cognitive fatigue … and that leads to increased agitation/restlessness. 

The Thrills, Always-on state, and lacking rest can put you into a Hyper-alert, hyper-vigilant frame of mind, driven by Strung out Fear, Anxiety and thoughts shaded by yet more fear.

In response, Biochemical floods pick up, leaving you even more Physically depleted, and when your Body is that taxed, it can distract the mind with pains, aches, sensitivities… which makes you even less cognitively capable. It can cut down on your capability, your ability to think clearly, your processing speed, and your overall experience of life.

Ultimately, your whose System starts to slow down, you can’t continue at that pace. When you have a Hard time processing complex ideas, you can find yourself thinking, “Why can’t I think? What’s wrong with me?” Cognitive fatigue, agitation/restlessness, can leave you not feeling right — Something is wrong. And you can over-compensate for that sense by being even more Hyper-alert, hyper-vigilant — telling yourself, “I have to be careful, I have to be cautious — WATCH OUT!”

Anxiety and thoughts shaded by fear can practically shout, “Something is going to go wrong! I’m going to be screwed!” Enter paranoia and dread. All that stress leaves your body taxed and hurting, distracting the mind with pains, aches, sensitivities, insomnia, etc. You can’t focus, can’t stay on track. Can’t keep your sh*t together.

Meanwhile, your system is slowing down even more. You push yourself harder, but you just can’t continue at that pace. You can’t keep up, you feel like you’re losing your mind, you can’t seem to hold your own with others. Your life is going to hell in a handbag… and you’re not quite sure why.

And you decide “I’m useless and nobody cares.

All of these things — this cascade of experiences — contribute to trauma on multiple levels. Physical trauma. Mental trauma. When your system is threatened and you can’t get free, you feel like you’re going to be destroyed — on some level or another. And that’s traumatizing. It’s too much for our systems to take. And if we don’t understand what’s going on, why we’re acting/reacting the way we are, it can put us in a real state of existential threat.

This trauma — the daily experience of having your life, your person, your identity endangered — is very real and needs to be addressed. It needs to be specifically “treated” with proper food and rest and exercise, with information that tells you about your situation, with a positive feedback loop from trusted friends who are there for you and can help you (or some other support group). It needs to be taken seriously by healthcare professionals, and it needs to be integrated into the treatment of mild traumatic brain injury.

Based on my own life experience, and what I’ve learned and contemplated about trauma and the human system over the past three years, I have to say that the traumatizing effects of unaddressed mild traumatic brain injury, is one of the key ingredients in long-term difficulties. And it’s not just the results of the trauma that need to be addressed, but also the somewhat preventable conditions that contribute to the trauma.

Mild traumatic brain injury, in my opinion is a chronically re-traumatizing condition which can be progressive. It’s a little like addiction, in that it’s not going away just by wishing, and the main thing you need to do is not fix it completely, but manage the ongoing impact it has to your life. Many of the traumas, I believe, can be avoided. But to do so requires information and support of some kind. It’s not the sort of thing we can sort out on our own, or that we can handle all by our lonesome. We need to have resources and connections outside ourselves, and we need to have support in regularly using those resources.

This is — again — an area where mTBI folks face challenges. Because so many of our friends and loved-ones just want this to be over with. They want to get back to the way things were. They want to get back to “normal” — whatever that may be. And they often don’t understand that we need ongoing support and resources far beyond the timeframe of our initial injury. Something fundamental about us has changed, and if we don’t incorporate that change into our lives then we’re going to find ourselves in trouble again and again, without really understanding why.

This TBI stuff won’t just go away for good. And it can rear its ugly head, time and time again. Realizing this is a good part of the battle. And using that realization to prevent further traumatization, as we go on with our lives, is yet another part.

After the war – battling off that pesky PCS

Cleanup time...

Headache today. Headache for the past few days. I suspect it’s a combination of lack of sleep last night, bone-weary fatigue that reaches far beyond the past few days, being dizzy and having to hold my head in certain positions so I don’t fall over, and a variety of other stressors that are adding to my tension and tightness.

I haven’t been to see my chiropractor in several weeks. That might have something to do with it, too.

I also haven’t been exercising as much as I normally do. Something in me is rebelling. Just doesn’t want to do it. So, this is what I get – headache.

The interesting thing about this is that I have gone for at least a year without that nagging headache that was always with me, day in and day out, to the point where I didn’t even notice it anymore.

How can you not notice a headache? Well, if it’s always there with you, it just becomes part of your life — a part of your “new normal” that you sometimes end up having to accept and adapt to. I figured the headaches were just part of my “new normal” and I had to just live with them. Then I started exercising regularly. And I started going to a chiropractor. And I started practicing consciously relaxing. Who knows exactly why, but the headaches subsided, then completely went away.

And I had to adjust to yet another “new normal” where I wasn’t in constant pain anymore.

But something in me, I think, needs to push the envelope. And something in me needs to have some level of constant stress. I need it to keep me a little sharper than I am when I’m totally relaxed. I need it to keep me engaged. I need it to keep me feeling alive. This is a problem. Because logically I know that this is why I’ve gotten hurt a bunch of times — I’ve pushed myself when I should have taken it a little easier. I exceeded the limits of my capacity, and I fell. Or I got in an accident. Or I got knocked around. I tend to push it. So, I tend to get hurt.

I also tend to fight. I mean, really battle. I used to go after people — individuals who seemed like they were in my way. People I worked with, who I felt competitive with. People in my life, who I felt were making me feel less-than. People I encountered who had something I wanted, or who were what I wanted to be. I was always going after people, literally or figuratively, setting up competitive scenarios where I could either come out on top, or I could at the very least knock the other person down a bit. I wanted a fight. I wanted to fight. And there were plenty of people who obliged me. But too often, I’ve been a bit of a wuss and have either backed down or deflected someone’s counter-attack. I’m not proud of it, but that’s what’s happened, time and again.

Okay, so it’s embarrassing, but there it is. I’m human, after all.

But back to the war… and my PCS, which is what this feels like — a resurgence of post-concussion syndrome. The Mayo Clinic website says this about PCS:

Post-concussion symptoms, which vary, include:

  • Headaches
  • Dizziness
  • Fatigue
  • Irritability
  • Anxiety
  • Insomnia
  • Loss of concentration and memory
  • Noise and light sensitivity

Headaches that occur after a concussion can vary and may feel like tension-type headaches, cluster headaches or migraines. Most, however, are tension-type headaches, which may be due to a neck injury that happened at the same time as the head injury. In some cases, people experience behavior or emotional changes after a mild traumatic brain injury. Family members may notice that the person has become more irritable, suspicious, argumentative or stubborn.

That’s pretty much where I’m at right now.

  • Headaches – a sick, migraine-y feeling behind my eyes, a thickness in the front of my head that feels like my skull is too small for my brain, and my brain is trying to get out through my eyes.
  • Dizziness – wobbly and lightheaded, I have to keep my attention focused on ONE THING AT A TIME, or I feel like I’m going to fall over. And throw up.
  • Fatigue – It’s so deep, it’s in my bones, pulling on me, dragging me down. I’m so tired, that I am having trouble sleeping.
  • Irritability – Edgy at work, edgy at home, I have been having issues keeping my irritability under wraps.
  • Anxiety – Yeah, that too. It’s a little embarrassing to admit — why does everything make me anxious — but it does. I’ve got this low-level anxiety that’s been crowding out intelligent thought for some time.
  • Insomnia – Yeah, that too. Waking up at 3:30… 4:00 a.m., and not being able to get back to sleep. And having trouble falling asleep to begin with, now and then. It’s more about having trouble staying asleep than getting to sleep, but in any case, I can’t sleep nearly as well as I have been in the past.
  • Loss of concentration and memory – Yeah, well, I’m getting by, I suppose. I’m trying to stay flexible and responsive to what the hell is going on around me, but I’m having real challenges remembering some things. I try not to let it get to me, because that makes a difficult situation even harder. But it’s a real pain in my ass, these days. I’ve done pretty well with accepting that I can’t remember some things, so I have to ask again and again and again, and ignore the strange looks that people are giving me.
  • Noise and light sensitivity – Makes staying asleep hard, if I don’t have my earplugs in. ‘Cause I’m so sensitive to sound, that if I hear something off in the distance when I’m half-asleep, it sounds like it’s right there in the room with me, and it wakes me up.

So, the war is back again. And I say that with both a humility towards the veterans and soldiers who have served in actual wars, knowing that the “war” I am fighting pales in comparison to what they have gone through overseas… and I also say it with the sense that no matter what your experience in actual combat, there is an element after TBI that is war-like.

My neuropsych hates it when I talk about battling through things. They want me to think about my experience in terms of a dance or a game. They don’t want me to get so hung up on things, and to ease up on the intensity in my life. I get that. It’s not such a great thing for me to be so god-awful tweaked about every little thing. And I understand they want me to keep the agitation levels down as much as humanly possible. They want me to manage my situation with forethought and insight and mindfulness. They want me to approach my situation like a dance. Better yet, as a game.

Certainly you can think about it in other terms, like it’s a dance or it’s a game, but in my experience, it’s more like a battle. Because this is not some game that has no consequence. This is my life. My survival is at stake. In a dance or a game, you can always walk away from the situation and get back to normal. But with my situation, I AM the situation. And I can’t just walk away from myself and find some more normal way to be.

And in a dance or a game, you don’t acquire post-traumatic stress and have horrible, terrible biochemical consequences of your “adventures”. You don’t have that constant cascade of fight-flight stress chemicals marinating you from the inside-out. You don’t have that repeated surprise(!) experience of having things turn out completely differently than you expected/planned — without having any idea why that happened. You don’t feel like you’ve lost yourself — sometimes the most important parts of yourself — and you have no idea how to get them back. You don’t feel like you’re cut off from the parts of you that once mattered so much.

Treating the challenges of life like a dance or a game may be fine for some (and some days it seems that way) , but it’s just not my experience, and my experience speaks louder than words.

It has been a battle. On and off. It has been a struggle at times. It has not been easy. Sometimes things have come together, but many times they have not and I have had to make do after the fact — scramble to sort out my snafu’s and fubar situations. Scramble I do — I sure know how to do that! And I can usually come out on the up-side. But then comes the post-traumatic stress. Even if the outcome is good, there can still be post-traumatic stress, when you’re hopped up on all the excitement, and the excitement seems to connect directly to your survival.

Excitation cascade to stress

Good stress, bad stress… it’s still a stress on your system, no matter how positive the outcome is.

And when you perceive the action to be directly related to your survival, and it feels like your life is in danger (perhaps because you’re going to lose your house if you don’t get this right so you can keep your job), it is no dance, and it is no game. It feels bigger and badder than that. And you get traumatic stress. Plenty of it.

Which introduces a whole host of problems — which I have found can be most “tolerable” when I am adding more stress to my situation. When I don’t have enough downtime to get my balance back (literally), I can end up making things even worse, on down the line. Because I crave the soothing effects of stress hormones, adrenaline, and those complexity-dampening chemicals that make everything in my life seem more simple, more basic, less complicated and confusing.

I know I’m not the only one. And I really believe this is a big reason why people are “compelled to repeat” their choices that put them in bad situations. Because they may not have the time or the resources to sit down and take a breath and sort things through and make sense of all of them. So, they jump head-first into more stress, without even realizing what they are doing. And they put themselves back in situations that traumatized them to begin with — bad relationships, bad jobs, redeployment, crime, etc.

I think TBI ups the ante on this, because it turns up the volume on Everything. Think you’re stressed? Try being stressed on a TBI. Think you’re confused now? Get hit on the head. You don’t even need to be knocked out. Any alteration in consciousness can have an effect.

Sensitivities can go through the roof, when your brain has been injured. Welcome to the party! The one way you can take the edge off, is by going extreme — extreme sports, extreme fun, extreme danger, extreme jobs… that’ll settle you down and focus you in.

The only problem is, you eventually have to come out of those woods, and you eventually have to go about your life again.

Which is when the PCS sets in. The headaches, the dizziness, the irritability, the sensitivities. It makes me crazy, and I feel like I’m back to where I started, several years ago. And it seems like the only thing that can take the edge off, is plunging back into the types of situations that caused the trauma to begin with.

I can’t tell you how tempted I am, to dive back into another massive project at work, and just lose myself in that.

Maybe then I won’t notice the headaches…

Putting my soul back together, one act at a time

These things take time

I recently came across a really interesting and important article — Beyond PTSD: Soldiers Have Injured Souls. It says a lot of really important things, including:

The trauma of war doesn’t just harm your body and mind. It also damages the soul. When you regularly violate your own inner moral code, you harm yourself in a deep and lasting way. From the article:

The psychological toll taken by war is obvious. For the second year in a row, more active-duty troops committed suicide in 2010 (468) than werekilled in combat in Iraq and Afghanistan (462). A 2008 RAND Corporation study reported that nearly 1 in 5 troops who had returned from Iraq and Afghanistan reported symptoms of post-traumatic stress or major depression.

Since the American Psychiatric Association added post-traumatic stress disorder, or PTSD, to its diagnostic manual in 1980, the diagnosis has most often focused on trauma associated with threats to a soldier’s life. Today, however, therapists such as Jonathan Shay, a retired VA psychiatrist and recipient of a MacArthur Foundation “genius” grant; Edward Tick, director of the private group Soldier’s Heart; and Brett Litz, a VA psychologist, argue that this concept is too limited. What sometimes happens in war may more accurately be called a moral injury — a deep soul wound that pierces a person’s identity, sense of morality and relationship to society. In short, a threat in a solder’s life.

“My colleagues and I suspect that the greatest lasting harm is from moral injury,” says Litz, director of the Mental Health Core of the Massachusetts Veterans Epidemiological Research and Information Center. He and six colleagues published an article on the topic in the December 2009 Clinical Psychological Review, in which they define moral injury as a wound that can occur when troops participate in, witness or fall victim to actions that transgress their most deeply held moral beliefs.

While the severity of this kind of wound differs from person to person, moral injury can lead to deep despair.

“They have lost their sense that virtue is even possible,” Shay says. “It corrodes the soul.”

….

In Europe, post-traumatic stress disorder researcher Ulrike Schmidt even seeks evidence of the moral injury in brain tissue itself. As she told Miller-McCune.com recently, “They need to know that it’s a recognized disorder. They are not weak, they’re sick, they have a spiritual wound. … And it’s important that they aren’t treated like outsiders, which is how many soldiers were treated in Europe in the ’40s and ’50s.”

Read the whole article here >>

The article goes into more detail about specific instances of moral injuring, and then it wraps up with some descriptions of what individuals have done to heal from their moral injuries, including centuries-old ceremonies for returning soldiers, visits to religious sites, and other concrete steps soldiers have taken to overcome their trauma. I really recommend you read – and really digest it.

Now, I’m not a soldier. I’ve never been in armed combat, and I’m not part of the armed forces. Yet this article speaks to me on a deeper and wider scale.

The traumas that these soldiers experienced came from a part of their innermost selves being violated in some fundamental way that made them unrecognizable (and sometimes unforgivable) to themselves.

And that sounds eerily familiar. Because what do you often get when you experience a TBI (or head injury or concussion or ABI, etc)  that erases fundamental parts of who you are and understand yourself to be?

Precisely this: a wound that can occur when [individuals] participate in, witness or fall victim to actions that transgress their most deeply held moral beliefs.

I’m really happy to find people talking about this — even if it’s specific to soldiers and military situations. To be honest, now that it’s sinking in and I’m getting it more and more, I’m fighting back some tears. Because this is true. I really believe with all my heart that this is a critical piece of what happens in TBI / concussion / head injury — you can lose parts of yourself that you have long relied on, and which make it possible for you to live in ways that are consistent with your moral code. And when those parts are damaged or harmed or disappear completely (for short or long periods of time, maybe even permanently), you can find yourself doing and saying things that are just not you. And you can find yourself doing and saying things that go directly against who you are, what you believe is right and good – your moral sense and identity.

You can’t seem to control it. You try, but it’s just not working. Your mouth isn’t doing what you tell it to. Your actions aren’t doing what you want them to. Your behavior isn’t being like you know you are. Your reactions are way off the charts, to the point of being unrecognizable.

And that causes a deeply traumatizing wound that no amount of talk and analysis will fix. Talk therapy won’t repair it. Neurologists won’t repair it. Even loving friends and family won’t necessarily make it right again. These are wounds we need to address within ourselves, with concrete actions, rituals or ceremonies of some kind (preferably the kinds of rituals and ceremonies in groups of like-minded individuals, which have taken place with traumatized people, including soldiers, since the beginning of time) — conscious acts which help us get our souls back.

PTSD soul loss doesn’t just happen on battlefields in faraway countries. It happens in the kitchens and family rooms and cubicle farms and factory floors and bar-rooms and train stations of the world. It happens in banks and football stadiums, on little league baseball sidelines, at the grocery store, on freeway on-ramps and in shopping malls. It can happen in public and in private — whenever we seem to betray our deepest-held beliefs and moral code, with behavior we cannot control or understand. It happens when we blow up over stupid little shit that shouldn’t bother us at all.

It also doesn’t only happen in pitched battle. It can happen in quiet, seemingly “normal” moments when the disconnect between what IS and what “should be” is as deep and as wide as any Utah canyon. It happens when we lose our cool over trivial things that somehow turn into massive sources of panic. It happens when we forget to do important things we have been entrusted with doing. It happens when we fail to be adequate team members to people who are relying on us. It happens when we stop doing the things that used to define us — keeping a well-maintained car or home, taking care of our appearance, conducting ourselves in a respectable manner, and/or making a decent living at work we enjoy.

It happens when we lose our shit. It happens when we lose our keys. It happens when we lose our perspective on the most important things in life and are cut loose to wander through life, wondering why the hell everything is so f’ed up for no good reason. It happens when we attack those closest to us and betray their trust and love with behavior and actions and attitudes that don’t reflect who we know ourselves to be, yet we cannot seem to control or even understand.

I think there’s a very good reason that TBI rage, anger, and temper are some of the highest ranking search terms here at BBBM — it’s eating away at the souls of many of the 1.7 million TBI survivors who enter the US population yearly. It undermining the lives, loves, and livelihoods of thousands upon thousands of individuals, many of whom have no idea that they need help — or they know they need help, but they don’t know what kind, and they don’t know where to get it. And even the people who are trying to help them, don’t fully understand the extent of their hurt.

Because it IS hurt. It is a wound of the soul. It’s a wound of the heart, yes — of the mind, yes… and of the body, most certainly — but most problematic of all, is the harm to the soul, the spirit, the very core of what makes us human, that makes us believe we are worth something.

Working through this has not been easy. The healing of my spirit, my soul… dealing with the ongoing, recurring traumas of a life that’s very different from how it used to be, has by far been the biggest challenge for me in my own recovery from TBI — and I will say recovery, because I believe that when we come back from TBI, we have to regain both specific functions and fundamental parts our very selves. And I believe we can.

This effort-ful repair also been the area where I’ve been most on my own. People just don’t get it. Not my spouse, not my neuropsychologist, not my former therapist(s), not my friends. They don’t understand what it’s like to be totally screwed in this invisible, unpredictable way — looking fine on the outside, while things inside are a tangled jumble of confusion and disorientation and rising panic. They don’t seem to get what it’s like to watch your life take on qualities that you never, ever thought they would have — and watch yourself inexplicably become something you’ve worked very hard for many years to NOT be like.

Not everyone knows what it’s like to become a raving lunatic, an unwitting “liar”, a problem… a monster… against every single one of your own wishes. And thank heaven for that.

They don’t get it, and they often don’t take it seriously. But this IS serious. It’s probably the hardest, most frustrating, most defeating experience that comes with TBI. Forget about the headaches and pain and light/sound/touch sensitivities for a moment. Forget about the panic and rage fits and anxiety for just a little bit. What’s beyond that? What’s beneath that? The self. The soul. The spirit. The very essence of who you are. When you take that away, even if there is no pain or panic or rage bubbling on the surface, what then is life all about? What foundation do you have? What hope can you have for your future?

Indeed, based on what I know about the human system and the effects that mental experience can have on the physical — and vice versa — I’d have to say that this traumatic loss of soul could very well form the basis for other physical/mental/cognitive/behavioral conditions. For when you have lost your sense of self – SOS – it can plunge you into an abyss of serious despair. And that can contribute to a “cascade effect” of all sorts of other conditions. The confusion and frustration and loss of sense of self feed into anxiety and panic, which can heighten physical issues, as well as cognitive-behavioral ones, as well.

Here, let me draw a picture of it…

The TBI Traumatic Soul Injuring Cycle (click the image to see a bigger version)

It’s all related, no matter what the specializing experts may say. And it’s a real bitch. Even the smallest things can set that cycle in motion.

For example, TBI can screw up your sleeping patterns, which in turn can screw up your ability to think. The brain needs a lot of rest to not only repair damage but also to recover from the added load of having to work harder at certain things. And fatigue is a major factor in agitation and anger issues with TBI. Being tired can make you confused and/or make it harder to think, period. So, you end up getting turned around and lashing out at others for no apparent reason, which adds to the stress of living – both for yourself and others. Which then leads to more problems… including sleeping.

Here’s another picture:

How TBI feeds sleep issues and other problems (click the image to see a bigger version)

So no, you’re not crazy, while you’re feeling your whole life falling apart, and you feel like you’re losing the very essence of who you are… you’re caught up in a whole cycle that starts with TBI and has unidentified stresses incorporated into the whole progression. And because your injury is hidden from others, and everyone wants to believe you’ll be okay (and/or they don’t want to think about the possibility you’ve got something bigger going on with you), managing it is very difficult… and you end up pulled into the cycle of losing yourself, your sense of self, your very soul, in the process of trying to get back to some semblance of normalcy.

The BIG problem is… there are all these unresolved issues behind the scenes that are slowly but surely sucking away at your understanding of who you are and what you’re about. And as you go through each day, watching yourself do and say things that don’t seem like “you” and who you understand/need yourself to be, you feel farther and farther removed from yourself. You feel like your soul is slipping through your fingers, like sand out of a broken wicker basket. And there’s nothing you can do about it. Every day, you get up an vow to try again … and the same shit happens all over again. You’re losing it. You’re losing your spirit. You’re losing your soul. You’re losing everything that ever meant anything to you.

Or so it seems.

What’s really happening, is that you’re fashioning a new understanding and version of who you are. All the while, patterns emerge in your behavior which “inform” you about who you now are. And it’s not all good news. When you keep screwing up, it can be easy to think that, “Well, this is me now — I’m a screw-up, and that’s that.” The fact of the matter is, that can change. But we TBI folks can be quite rigid and literal in our thinking, so we may never give ourselves the chance to come up with a different idea. And we re-inforce our misunderstanding of ourselves, creating a self-fulfilling prophecy in the meantime, getting farther and farther away from our core selves, wounding our already aching souls even more in the process.

Who we think we are is not always the truth. But by God, we’re sure we’ve got it figured out. And so, we cheat ourselves of a larger truth… and everyone around us pays the price, along with us.

I say this because I know what it’s like. I’ve lived it. And in many ways, I still do live it each day. I don’t know when I’m going to learn that I am not the same person I was, ten years ago… Even five years ago (anybody who says mild traumatic brain injury is not a progressive condition, is welcome to speak to me anytime). But I still keep making assumptions about my capacity, my abilities, based on what I “knew” about myself before. Those things have changed, sometimes imperceptibly. But even the slightest deviation from what I “know” to be “true” about myself, is enough to plunge me into a crisis — and send me off the deep end.

So… to finally get to the gist of this post “Putting my soul back together, one act at a time” here’s what I’ve been doing to help myself rebuild and address the loss of my soul, my sense of self, my “center” (as some of my more alternative friends call it):

First, I get clear on what my values are and what matters to me. I identify my core values, my beliefs, my commitments, my principles. I figure out what makes me “tick” and what gives meaning and purpose to my life.

I write it all down periodically, and I remind myself what my values are all about. My neuropsych has been working with me to help me get these clear in my head. I have actually always done this (perhaps as an instinctive response to my neuro challenges over the years), but after my last fall in 2004, I pretty much stopped doing that, and I have felt the ill effects. It was really then, that I started to lose myself (though the whole story is bigger than just this one aspect).

I addition to writing my values and ideals down, I try to repeat them in my head while I go about my daily business. I think about them while I am driving to and from work. I think about them after I am done with work for the day. I really meditate on them, when I get a chance. They are my lifeline.

Some of my core values are:

  • Treat all (including myself) with dignity and respect, as creations of a loving God/Spirit/Universe.
  • Devote myself to purposes that are larger than myself — the success of my co-workers and teams at work, the different projects I help others with.
  • Make the world a better place (by treating others well, and by offering them something of myself that helps them live their lives a little better).
  • Stand up for what I believe in, no matter what people may say at work or in life.
  • Hold true to my dearest beliefs and defend them from cowards and cheats and liars and others who seek to undermine me.
  • Remember my ancestors, my grandparents, all those who have gone before me, who look to me to continue the values and beliefs they held, and to continue and protect the world they helped to build before me. Stay true to their legacy, and do them proud. On some level, they are watching… waiting for us to do great things.

Next, I take concrete action. I do things that I know are consistent with my beliefs and values. These things are not always easy to do, and I have to keep that in mind. Part of me thinks, if something is difficult, that must mean there’s something wrong with me. I’m not good enough, or I’m not capable enough. But I believe that all important things are difficult to do, so the fact that I’m challenged actually means I’m living up to my potential — and beyond. All important, complex things take time to learn, and I am learning and practicing each day.

Some of the concrete things I do are:

  • Exercise regularly.
  • Eat good food.
  • Keep to a daily schedule as much as possible — get up, exercise, have breakfast, then get on with my day.
  • Go out of my way to be especially patient and courteous with my spouse.
  • Try to treat everyone I encounter with respect and dignity.
  • Stand up for what I believe is right at work – and don’t give in to peer pressure to cut corners and make excuses.
  • Connect with others who share my beliefs and communicate with them regularly.
  • Take time to plan my activities, so that I can make the most of them.
  • Do my best to follow through on my promises and what others expect of me.
  • Be easy with myself, give myself the benefit of the doubt.
  • Don’t get caught up in making up stories about what things mean or what people are all about. Don’t get paranoid and defensive just ’cause of what I think might be going on.

All these things are important to me. And all of these things help me take steps each day to getting back to where I’m comfortable in my own skin. I don’t do them perfectly each day, but they’re a priority with me, so I keep trying.

Most of all, I try to be patient with myself and give myself the benefit of the doubt. Rebuilding a life that you feel like you’ve lost is not easy going, but I try to keep focused on taking things a day at a time (sometimes an hour at a time). Sometimes I get in over my head, and I have to shovel out from under all the “compost” I’ve acquired, but I’ve gotten in the habit of telling myself that means I’m doing better. If I weren’t doing better, I wouldn’t be taking on the challenges that get me turned around, confused, and frustrated.

That’s how I do it – a little bit at a time. And with concrete steps. When I slip and fall and feel like I’m back to Square One, I check myself and make a list of all the things I have to be grateful for. And I focus objectively and realistically on the progress I have made.

The fact of the matter is, my anger isn’t constantly out of control anymore. My spouse is not afraid to be in the same room with me, anymore. I am not bouncing from job to job, leaving positions quicker than people can figure out that I’m faking my way through and I really don’t know what I’m doing. I am not spending money hand over fist without regard to my future. I am not waking up at 3 a.m. every night, unable to get back to sleep. I am not staggering around like an adrenaline-hopped-up zombie, fueled on pure agitation and nerves. I am not picking fights with police officers. I am not going for walks in the woods down deer trails during the early morning hours of deer hunting season.

I am absolutely positively getting better. Through concrete, definite steps that run contrary to the out-of-control live I once lived on a daily basis.

When it comes to getting my spirit back and healing my injured moral soul, that counts for something.

Onward.

The Warrior Ethos and Traumatic Brain Injury

The other day, I was surfing around and found this over at SignatureInjury:

Soldier
A Warrior's Creed Matters

“I will always place the mission first.

I will never accept defeat.

I will never quit.

I will never leave a fallen comrade.”

It is this ethos that has been drilled into (soldiers) from the moment (they) step off the bus; it is this ethos that is the underpinning of (their) survival in combat.

What signatureinjury intends to do is answer the question of how this ethos obstructs many service men and women from seeking help for their traumatic brain injury. …

Mission First; Self Last

This is essential to the safety and success of any military operation. It compels the soldier to regard his unit and its mission as greater than him or herself. Many of the soldiers in the combat arms not only agree with this superficially but live it instinctively. It has become an integral part of who they are to the extent that even casual decisions are influenced by this principle. The problem with this type of mentality is that it prevents many from seeking help because the mission or unit will suffer from a potential loss in manpower. “Isn’t this subversive treatment; dangerous indoctrination?” Yes and no. On the one hand battles cannot be won with everyone looking out for their own welfare, yet on the other, it can cause those who strongly embraced the concept to unwittingly shrug off the symptoms of TBI in order to fulfill his or her mission.

How true this is.

Even beyond the combat arms, a lot of us live by this. I know I certainly do. Maybe it’s just how I was raised, but in my own world, the measure of my worth is based on how much I contribute to others — how much I give, not how much I get. That being said, the times when I have gotten hurt, I did not seek help for my injuries because I placed my own welfare secondary to the welfare of others, and I believed with all my heart that stepping away from the game or stopping what I was doing to take care of myself would have harmed others who were depending on me.

Defeat is not an Option

This tenant is not only central to the armed forces but is a trait characteristic of most men in particular. Defeat shows weakness and speaks against what men think men should be. We see this readily in sports. No one likes to win or admit defeat because it somehow means that we were inadequate in our performance. In the novel The Old Man and the Sea, Ernest Hemingway spoke of defeat this way, “But man is not made for defeat. A man can be destroyed but not defeated.” This is a common view that enables warriors to endure the hardships of combat and continue fighting; however, it is this trait that prevents many from seeking help because it can feel as if you’re accepting defeat. What compounds the issue is the fact that many with TBI have no visible marks of their injury. It is one thing to go to the medic for a gunshot wound and totally another to seek help for problems that make you look mentally unstable.

No, defeat is NOT an option

Even if it means I get bruised and battered and get the crap kicked out of me, I will keep going. I will not relent. For the record, I know both men and women who live like this. Maybe it’s because I was raised in a rural environment, where people just put the welfare of the community ahead of their own personal successes and failures. They just kept going. We just kept going. And no, defeat was not an option.

One of the things that makes seeking TBI treatment tricky, is that it can be very hard to understand and articulate what you’re experiencing after your injury, so when you do go to the doctor, all your thoughts can be jumbled up, and you can end up sounding — and feeling — crazy. Plus, with so many genuinely ignorant doctors out there, some of whom just want to give you a pill and send you away, you can end up dealing with someone who makes matters worse. This is where it’s important to seek out expertise, especially from an advocacy organization like the Brain Injury Association. They can sometimes point you towards people who can help.

I Never Quit

To quit is to lower your standards and expectations for success. This is one principle that is physically implanted in the soldier through various exercises and drills that are usually painful in nature and the option to quit even more so. Quitting becomes unacceptable. When I was in basic training it was winter and I was training in temps of around 10 degrees. I soon developed pneumonia and even though I struggled to breathe on our four-mile runs and ten-mile ruck-marches, I refused to quit. I had the choice to but it wasn’t an option. It is the same for many with TBI because to risk being pulled from your duties because of an “invisible” injury feels too much like quitting. It may also appear to your peers that you are too weak to endure and so you find an excuse to quit.

Never quitting can be rewarding

The people running the show will never punish you for doing your part. And your comrades and co-workers will always appreciate you following through. This is a hard thing to overcome – the loss of that reinforcement. And when others around you don’t understand the nature of TBI, it can be pretty rough going. You go from hero to villain in one fell swoop. Plus, many other people sustain TBIs/concussions/head injuries, don’t report them, and keep going. So, they expect you to do the same. I have a theory that a lot of people who are the hardest on TBI survivors who are taking care of their recovery have sustained head injuries, themselves, and they take it out on others, expecting them to do the same thing they did — keep going and not “quit” — and keep running the risk of getting worse. A lot worse.

Never Leave a Fallen Comrade

As far as TBI goes, this state of mind is not a barrier to treatment but a consequence for those who wind up leaving their unit for lighter duty or medical discharge. Before being removed from my unit, I had a particular soldier in my squad that was good at heart but gave me grief for the decisions he made. I spent countless days working with him to make him a better more disciplined soldier. A year later, my unit deployed back to Iraq for the third time, a deployment I should have been on. I received word from a friend that Zapasnik, my soldier, died in combat along with three others from my platoon. It was at that moment that I truly felt I left a fallen comrade because I should have been there with him.

Leaving is always a loss

Anytime we step away from something, we lose a bit of ourselves. When we step away from our company of peers, we lose our part in that group, and we lose the chance to contribute. And we lose the opportunity to be of service to others. This is probably one of the most challenging aspects — the loss of community that’s based on you going above and beyond. That loss of identity, that loss of purpose. Dealing with this loss can be tremendously difficult.

Traumatic brain injury is a complex issue, one that affects multiple areas of life and is influenced by many factors. It is an injury that lies in stark contrast to the way the military is trained because the majority of cases lack substantial visible evidence of injury. Many, if not all, of the points I have made may happen on a latent level that those with TBI may not realize. Understanding these points will enable those in the related health fields to develop better programs to educate a treat those that may be apprehensive in seeking treatment.

The warrior life necessarily involves prevailing in the face of injury, defeat, potential destruction

And when we commit our lives to pursuing goals, no matter what, when we step outside of that, we go into uncharted territory that goes directly against the grain of our being.

For me, I had to realize that taking care of myself was an integral part of me being able to be a quality member of a tight-knit group who worked together. Realizing that brain injury had compromised my ability to handle things the way I once had, made it imperative for me to seek help. Only when I realized that the best way I could help my community, my team, my co-workers, my company, was by learning to recognize my challenges and get myself back on track, was I able to seek help.

It’s made an immense difference, too. Getting help was one of the best things I’ve ever done. It’s not just good for me, either — it’s good for everyone in my life, family, friends, co-workers — all of us.

Stop saying PTSD (and TBI) is incurable

I came across a great post by Belleruth Naparstek over at Huffington Post about how well-intentioned professionals are running around saying that PTSD is incurable — an intractable condition.

Huh. How about that. Sounds to me like we’re all screwed, because a ton of people have PTSD, and it affects their families and friends and coworkers, and if it’s an intractable, incurable condition, we’re all stuck dealing with it for all time.

Which doesn’t sound right to me.

So, I’m glad Belleruth is talking about non-standard ways of dealing with it. And I have to think, also, about how I employ similar techniques to deal with the stresses of my TBI-related difficulties.

I strongly recommend the article. And the piece I’m taking away is:

[There are] consistent threads running through these approaches:
1. They first and foremost find ways to re-regulate the nervous system.
2. They destigmatize and normalize the experience by explaining PTS as the somatic and neurophysiologic condition it is.
3. They offer simple, self-administer-able tools that empower the end-user and confer a sense of mastery and control.
4. The interventions are cast as training in skill sets, not the healing of pathology.

They treat PTSD as a physical condition, first, and they teach people how to deal with that aspect of their lives.

I have found, in my own dealings with TBI-related stress, that this same kind of orientation helps a whole lot. I have to take seriously the physiological aspects of my condition, which tweak the psychological parts of me. And when I approach the situation with a physical orientation, the results really are like magic.

Except they’re not magic — they’re physiology. Which well-trained psychological professionals miss, because it all happens in realm of  a “frozen, primitive, pre-language experience – sensation, perception, emotion, images and motor reactivity – in the survival-based structures of the brain.”

I wonder… if people treated the stresses of TBI the same way that they treat the stresses of combat and other traumas, with this non-standard, non-talk-therapy approach, how much of a difference would it make? If I’m any indicator, that would be a whole lot of difference.

Treating TBI

Treating traumatic brain injuries @ the LATimes

They can’t be set like a bone or staunched like a bleed. They can be difficult even to detect, but the military and others are working to improve care.

Larry Ewing’s life changed last year on a construction site in Victorville; Larry Carr’s changed in 2004 on a road in Iraq. Unlikely brothers in arms, both men now share the same invisible wound — traumatic brain injury.

They tire easily, forget often and lose their balance and concentration without warning. They struggle to make peace with personality changes that have made them barely recognizable to loved ones.

Read the whole story here

Giving hope its due

Okay, now that I’ve riffed on despair, it’s time to dwell on hope. And healing. And the good things that come along with brian injury.

I can almost hear you thinking, “What good things that come along with brain injury? What are you – nuts? Head trauma sucks, and long-term after effects of even a mild brain injury can be so debilitating as to ruin lives, destroy families, trash careers… and more.”

I agree. Brain injury is a national health crisis and it’s a tragedy and a disgrace that something so common (see the stats in the sidebar) is so little understood and its impact so under-estimated. It’s a travesty, in fact. Last night, I was reading the book Confronting Traumatic Brain Injury by William Winslade. The Amazon review says

Author William J. Winslade suffered from a traumatic brain injury (TBI) as a 2-year-old, when he fell from his second-story porch and landed straight on his head. He’s one of the lucky ones who’s recovered fully, both physically and emotionally; his only souvenirs of the fall are a three-inch scar and a dent in his skull. He warns that of the 2 million Americans who suffer from TBI each year (most of them from car and motorcycle accidents), up to 100,000 of them will die prematurely. More than 90,000 of them will face up to a decade of extensive rehabilitation, at a cost of up to $4 million each. Even a TBI as seemingly minor as a concussion can have devastating long-term physical consequences, causing seizures, memory loss, learning disabilities, and more. However sorry these problems may be, he writes, “the truly debilitating deficits” are the less-obvious emotional effects, “such as social isolation, [which] take their own insidious toll.”

Which is all very true. I can personally attest to it. And that book is ten years old. So why don’t more people know about this stuff? Why is our country — and the world — still forced to cope with so much trouble relating to brain injury. From violent crime to domestic abuse, from learning disabilities to physical limitations, to series of progressively more debilitating re-injuries over the course of lifetimes, brain injury plays a whole lot of havoc with our world.

The thing is — and I’ve read pieces by Dabrowskian therapists saying this is why they became interested in his work — the information we have (and we do have plenty of stats about TBI) isn’t always conducive to knowledge.  Perfectly intelligent people with lots and lost of information at their fingertips continue to overlook and ignore or downplay the impact of head injuries, and refuse to take steps to prevent it. What’s (perhaps) worse, is that perfectly intelligent people, who are capable of understanding the objective impact of head injury, persist in treating TBI survivors as though there’s something wrong with them, that they’re deliberately doing the things they do, that they’re intentionally screwing up, that they’re cheating the system, slacking, taking advantage, and doing any number of other things to “milk” a supposed injury.

Check the blogs of TBI survivors out there, and you’ll find more than a few accounts of difficulties with friends and loved-ones who refuse to factor in brain injury in the TBI survivor’s behavior.

Now, I could circle back around and delve into despair, but I’m choosing a different tack. Why do intelligent people neglect taking the facts about TBI into consideration? Why? I suspect it’s because brain injury isn’t just about facts. It’s about harm done to the singlemost important organ in the body. It’s important not just because nothing works without the brain, but because even if it is functioning somewhat well in a physical sense, if it’s not operating at peak performance, it deprives us of something even more vital to the human soul than motor function or control of our bodily functions — it deprives us of our humanity.

Truly, brain injury is terrifying for most people, because it hits us where we live, in the deepest, darkest part of our souls, where we are most vulnerable. Especially, I think, for intelligent, intellectual, fact-driven people, the emotional impact of brain injury — just contemplating it, to begin with — can be so unsettling that it causes higher reasoning and analytic function to slow, if not stop. Pondering the impact that head trauma can have is, well, traumatic. It kicks off our most basic survival responses. And our fight-flight-freeze response tends to make us abandon high reasoning for the sake of just getting away from the thing that threatens — or just frightens — us.

I suspect that this, more than anything, is what keeps brain injury from being adequately apprised and addressed in this country. And it appears that the only thing that will make us sit up and take notice are tens of thousands of returning veterans — trained warriors, wounded warriors — who are reintegrating into a society that is woefully unprepared for them… but will need to change that, if we’re going to get by in this new century, this dawning millenium.

And that’s where I think hope can help.

Certainly, hope is necessary in any tough situation, but especially in the case of TBI. Mild, moderate or severe, brain injuries certainly leave a mark on survivors and their family, friends, co-workers… often without them understanding why and/or to what extent. But we don’t have to let that keep us down. Yes, there are problems. Yes, there are issues. Yes, there are tremendous difficulties. But with the brain, you never know what’s going to happen next. Some recoveries last months, years, decades longer than anyone expected them to. But abilities can sometimes be restored, where the experts were sure they were gone for good. And where some abilities are lost for good, others can arise in their place — or show up where they weren’t before. Plenty of people have survived trauma that marked them “certainly” for death, and they’ve battled back from the brink. And I’ve heard stories of people who sustained significant brain trauma, only to find that suddenly they could paint like nobody’s business. Or they started writing one day for no apparent reason.

Looking at some of the most brilliant minds of the past thousand years, the brains inside their heads have not always been “standard issue”. Einstein was missing part of his brain. I’ve also heard that Thomas Edison’s brain was malformed. (Note: I’ll have to do more research that one — I’m not finding information about it right away.) Gifted artists and writers have been epileptic, as have some of our most effective leaders and gifted actors and athletes.

And I suspect, the more we learn about brain injury, the less afraid of it we’ll be. The more we realize that it is NOT a death sentence, that it is surivivable, that it can actually impart or uncover abilities and gifts that might otherwise go unnoticed and undeveloped, the less traumatic the mere consideration of it will be. I don’t mean to diminish the suffering of those who have really struggled with the after-effects. And I don’t want to downplay the seriousness of it. I’m just saying, there are two sides to this story — the tragedy and the triumph. And when we can pay as much attention to the triumph as we do the tragedy, and accept them both as possibilities… as parts of the whole of human experience, we might stand a better chance of confronting the challenges that go along with brain injury, and learn to integrate the experience into our collective storehouse of information… and for once, let facts — not fear — govern our understanding of the injured brain.

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