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.”
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?
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 reallytired 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.
I just found this poem, while looking through WordPress for blog posts on anger. It says so well in far fewer words, the same thing I’m about to elaborate on.
I’ve been studying a bit of breathing over at coherence.com and also thinking about things I’ve read there. I’ve also been studying sitting zazen, as it’s described by elders who have been practicing it for many decades, and I am struck by the similarities between the two.
Now, breathing can take may shapes and forms, and different people have different ideas about how it “should” be done. I’ve actually been criticized by friends who thought they’d been taught the “right” way to breathe. They said I was breathing too shallow, or too fast, or not having the right posture.
I appreciate their concern and wanting to help me, but … whatever.
And then there’s the formally trained respiratory therapist I came across, years ago, who said that there is no wrong way to breathe. And that was a real breath of fresh air for me — literally and figuratively.
Anyway, in my reading about Coherent Breathing, I’ve come across the concept of “Breathe… then relax.” Now, I don’t know about you, but I was usually told “Relax… then breathe” but it never quite did it for me. When I read up on coherent breathing, I understand why — because you need to give your body what it needs to relax. You can’t just order it — RELAX!! — and demand that it comply. But if you give your body what it needs to relax — a balancing of the sympathetic and parasympathetic nervous systems, which gives them both equal time and lets them work together, instead of at odds — you actually CAN relax.
I’ve come across more and more talk about the autonomic nervous system (ANS) — the combination of fight-flight sympathetic and rest-digest parasympathetic nervous systems — when I read the writings of elder (or deceased) lifetime zen / buddhism practitioners. While everybody else seems to be fixated on things like mental calm and personal peace and spiritual enlightenment, they focus in on the basic physical components of calm and peace and enlightenment — the balancing of the ANS.
This, they say, is the foundation for what so many seek. And yet so many are focused on things other than their bodies.
Now, I’m not going to spend a lot of time yammering about all the high-minded stuff right now. What I AM going to talk about is something very basic, very essential, very critical to TBI and PTSD recovery* — Anger Management (*and yes, for those who believe they are chronic lifelong conditions that you can never completely cure, I’m going to use the word “recovery” anyway — in the sense of recovering our composure, our presence of mind, our human dignity, our relationships, our futures).
My own Anger Management, I am finding, is made about 1000-times better, when I use steady, conscious breathing to keep my ANS in balance. See, here’s the thing — I hate to admit it, but I get anxious really easily. I also am prone to panic attacks, which I would never admit until this past year — heck, I didn’t even realize I was having panic attacks!
Now, I used to be pretty chill, but since my TBI in 2004, all that gradually went away. I believe it’s because of a combination of physical biochemical changes that took place when I fell, the constant restlessness that feeds my brain’s agitation, and the repeated abrupt, jarring surprises I had, time and time again, when my brain wasn’t working the way I expected it to. Any way you look at it, I can be a real ticking time bomb, if the conditions are correct.
Now, this has been a HUGE problem for me and my family — I also had a lot of problems with this when I was younger (and having a concussion or two about every year or so). But I never made the connections or figured out what would help me chill out my anger, till pretty recently.
See, the thing is, everybody I’ve ever talked about has approached anger management from a psycho/spiritual standpoint. They’ve encouraged me to “get in touch with what’s bothering me”… to “learn to love myself”, to “make peace with my shadow” and learn to “dance with my demons”. All good advice. But it’s all geared to a level of experience that is a symptom of my agitation and rage, not the cause.
The REAL cause of my anger management issues? I believe it is, was, and (almost) always has been, an out of whack Autonomic Nervous System — a hair-trigger fight-flight sympathetic nervous system taking over and pushing my rest-digest parasympathetic nervous system out of the way, like a bully shoving a “sissy” down into the mud and stomping on their head.
Flying into a rage over the slightest thing? Not because I wasn’t “my own best friend” — rather, because I was tired and agitated and I flew into fight-flight mode on an instant’s notice.
Getting pissed off while in traffic and getting aggressive towards other drivers? Not because I projected my own insecurities onto them — rather because I was already on edge about being in traffic, I was already in fight-flight mode with my amped-up SNS, and all that adrenaline just fed on itself to make itself even more virulent and aggressive.
Melting down and flipping out over seemingly small issues? Not because I was spiritually damaged or had some character flaw — rather, because I panicked, plain and simple, and it came out as a melt-down.
Holy smokes… if I’d known this just five years ago, how much different could my life be right now? I’m telling you, seeing my anger outbursts and hair triggers as a physiological phenomenon, not some sign of psycho-spiritual disturbance, makes all the difference in the world. It instantly makes the challenges about something other than my broken self, and turns it into a physical situation that I have the tools to manage.
Again, let me say it loud and clear:
Anger issues, for me, are NOT about psychological problems, emotional damage, mental illness, or a defective character. They are about my fight-flight sympathetic nervous system being in an uproar that drowns out my system-balancing parasympathetic nervous system. Anger issues, temper outbursts, rage attacks are all reliable signs that the innermost “wiring” of my body is in need of some attention. And when I give it the attention it needs, it chills everything out in a way that doesn’t just fix it once — it lasts.
So, how do I give it the attention it needs? By breathing consciously. I breathe slow and steady into my gut, feeling my belly expand when I inhale, and filling up my whole chest cavity too. I count my breaths, focusing on them instead of all the crap that’s going on outside, and it keeps my mind from falling into the trap of someone else’s mind games, or some mistaken perception I have. When I focus on my breath, not only do I take a break from the soul-sucking drama, but I am also strengthening my whole system for future times when I need to keep balanced and sane.
I am training myself for future times when I am so bombarded, I have trouble keeping my presence of mind to breathe. The more I practice, the easier it becomes. So, it’s important for me to practice.
On the one hand, this really excites me that I have figured this out. On the other hand, it really bothers me that it’s not more widely known and used. Rehab facilities could be using this… recovery groups could be using this… hospitals could be using this… therapists and counselors could be using this… occupational therapists and physical therapists could be using this… and so could family members who want to help both their injured loved ones as well as themselves. Trauma survivors of all kinds could be using this, including traumatic brain injury survivors, particularly mild traumatic brain injury survivors, who often lose more in the long run than you’d ever guess or expect.
I think part of the problem is that when people find something that works, they instantly become very strict, rigid, and orthodox about it — they decide what the rules are, they tell people the rules (with the best of intentions), and then they enforce those rules to no end.
I’m in the position, myself, where I’m not a big fan of strict rules and regulations. I think everyone is different, and we all need to find our own ways. What works for me, might not work for you, so you have to figure out what’s most appropriate for your situation.
But I do think it’s helpful to understand the underlying “mechanics” of how this all works — to understand the physical principles behind what you want to achieve, so you can figure out the best way to do it for yourself.
Try the conscious breathing thing… counting your breaths, or just noticing how you feel when you’re taking slow, measured breaths. It’s free, it doesn’t require a trained professional to teach you to do it, you can do it anytime — no scheduling required — and you can keep practicing in many different situations, to gain your composure and strengthen your sense of self.
Conscious breathing for anger management… Try it. You might like it.
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:
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 TheCognitive Collective THREAT to the person & their survival
Then you get Trauma (and hence, traumatic stress)
Here it is, step-by-step:
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.
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.
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.
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.
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.
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.”
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…
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:
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:
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.
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.
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!
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.
Okay, so this post is purely self-serving, in that I need to remind myself that I am indeed a high-functioning mild traumatic brain injury survivor, who has managed to build a pretty incredible life for myself and my family, despite my injuries at age 7-8 and three years ago at age 39.
I’m in the job market again, and I’m looking at my job prospecting with a whole new eye — keeping tabs on my stressors and trying to navigate the world of recruiters and headhunters, who are all so incredibly DRIVEN and don’t give themselves, let alone me, a chance to breathe. Take a deep breath, folks. Honestly…
I’ve been talking to headhunters, on and off, for a few days, and they’re starting to make me crazy. All that go-go-go stuff and the constant pressure to schedule something with them… to make it happen… make it happen! Can-do shit and all that. I have to admit, I’m a bit tired of all that pushy crap, and it’s making me antsy and short-tempered. I actually snapped at a headhunter today who was just pushing too hard. People can’t push me hard, anymore. Not anymore. No thanks. Give it a break.
Still, one must work, one must earn money, one must pay the bills… If only I could find a job I could do from home, instead of going out into the world. I’ve been thinking I really need to work for a company that can offer me structure and reliability and some sort of regular schedule. I’ve been in and out of the regular job scene for a while, back and forth to a part-time job and futzing around for the past year or so. I’ve been thinking that I need more than that — more structure, more involvement…
But the more I talk to people in the working world, especially recruiters for technology companies, the more it gives me the willies. And I don’t relish the idea of going back to a 9-to-5 position. Especially if it involves driving an hour each way. Just too much.
Especially since I’m starting into dealing with this TBI stuff. I really don’t want to have to put my diagnostic testing and rehab on the back burner, while I try to figure things out. I don’t have an unlimited amount of money in the bank, so something must be done. But really, I’d prefer to work at home… telecommute. Work remotely. Not have to go into an office.
Better yet, I’d prefer not to have to work at all.
But that’s not really in the cards, at this point. Unless people buy so many of my headache journals that I can retire. Or they purchase more of my writing/research/resource guides. That’s always a possibility. A slim and distant one, but a possibility, no less.
But seriously, folks, there must be a better way for tbi survivors to make a living, than having to schlep into an office and be surrounded by people who neither understand nor care about your condition. I’ve worked with disabled people before, and while our employer did accommodate them, and they were great friends with everyone they worked with, the simple fact is, they had to work like the dickens just to get by “normally.” And while people did help and reach out to them, there was always that undercurrent of pity that makes my skin crawl.
I just can’t bring myself to “play the disabled card” as a tbi survivor. I’m still up in the air about whether I’d even mention it to an employer. I certainly will not mention it to consulting clients. That would totally work against me, I believe.
I just need to keep it to myself, unless there’s an expressed need to let people know what’s going on. I guess it’s all in a day’s work for a tbi survivor… trying to figure out how to navigate the working world. Or the world in general.
But I don’t think I started this post to bitch and moan about my job situation… where was I? Oh, yes, now I remember: ruminations of a high-functioning mtbi survivor. That means I’m supposed to focus on my strengths, I suppose 😉
The oddly conflicting fact of the matter is, being a high-functioning tbi person can make things all the more difficult, because if you don’t “present” like a tbi person (like me), it can be pretty difficult to get people to take your limitations seriously. I’m having a getting-to-know-you meeting with a counselor who’s seeing a friend of mine, who’s really struggling with my newly discovered tbi status. This counselor knows a bit about tbi, and they don’t think I look or act like a tbi survivor, whatever that may be like. So, I need to sit down and explain things and hopefully elucidate my situation.
I’ve invested a whole lot of time and energy in making sure that nobody, but nobody, realizes I’ve got a disability, and now I have to sit down and explain to someone how my front is often just a front, which makes me a fraud and a fake, I suppose, on a certain level. I’m not nearly as smart as I pretend to be. Or as quick. Or as inspired. I just do a great job of imitating someone who is. Or maybe that makes me a highly resourceful survivor extraordinaire, who just doesn’t want to miss out on life and sucks at self-assessment, so they can’t see that they’re not quite as smart/quick/inspired as they think they are.
It’s all very confusing, and I’m not helping myself any, right now. I’m actually very tired. And stressed. And worried about these interviews I have coming up over the next few days.
Just remember, on the internet, nobody knows you’re a dog…
I just checked my blog stats, and somebody came over to this site while Googling for info on soldiers and PTSD.
I want to quickly put in a word for military folks who are seeking help for post-combat/deployment issues, who may be headed down the PTSD treatment road, but may miss TBI treatment in the process.
I started professional counseling about six months ago for “coping issues” that I couldn’t get my head around. Everything in life had just gotten so difficult, and I couldn’t understand why I kept running into dead ends with jobs and relationships and why I couldn’t seem to advance in life. All my peers have “moved on” and “grown up” — many of them now with grandkids and advanced careers, long-term homeownership, and all the accoutrements of adult life… while I languished in a no-man’s-land of false starts, scattered ideas, and a long line of failed or aborted attempts at living a normal life.
Now, don’t get me wrong — on the surface, my life looks like it’s highly advanced. I’ve got a great home, a wonderful marriage, and two cars in the garage. My resume looks fabulous, and I’ve got a lot of respect from folks. But my external circumstances don’t match my internal state… and they haven’t for a long time. Nobody really knows just how deep the self-doubt, anxiety, self-criticism, abysmally low self-esteem, and constant invisible struggle really goes.
Except me. And I don’t breathe a word of it to anyone. Not if I can help it.
So, when my health and career and personal life all started to tank in a very big way, this past year, I sought professional help. The counselor I found is highly experienced, compassionate, insightful, kind, caring, and very adept at what they do. But I found myself over time feeling as though they were looking for some sort of horrific trauma in my past that would cause me to lose big chunks of my memory, be uncertain around people, and erode my emotional and behavioral (and cognitive) foundation.
I got the distinct impression they were looking for emotional trauma. Abuse. Neglect. Some sort of terrible thing(s) others did/do to me that cause me to have PTSD. Or some life-threatening event that brought on PTSD.
We had talked about post-traumatic stress a good deal, and both of us accepted that it could have a part in my difficulties. But no matter how closely I looked at my life, I couldn’t for the life of me find THE Event(s) that had wrecked me for “normal” life.
It just didn’t make any sense to me. And when I dug deep and did my own research and realized that sustaining a traumatic brain injury at the age of 8 (and possibly other times), as well as another TBI three years ago, did actually fill in a huge, gaping missing piece of the puzzle.
It’s not that my counselor was incapable or incompetent. They were just looking for the wrong thing in the wrong place. They’re a wonderful resource for me, and I really value their input, but in the case of TBI, I had to come up with my own diagnosis.
If you’re in the same boat I am/was, you may need to do your own research & preliminary diagnosis, too. After all, TBI tends to make it very difficult for people to tell what’s going on inside our heads — and it can make it tough for us to figure that out, too. Doing research online is a great way to make a start.
I’m finding that TBI is not particularly well-known in the psychotherapeutic community — I have a bunch of friends and associates who are therapists, and when I’ve talked about TBI, I’ve gotten blank stares. That’s not entirely their fault. They aren’t always trained to look for physical ailments, which are the domain of medical doctors. If anything, they’re taught to look away, in terms of medical issues — liability issues, I suppose. Unfortunately, there seem to be a lot of highly trained individuals who simply don’t have the kind of physiological orientation that treats cognitive-behavioral symptoms as possible neuro-physiological phenomena. They are accustomed to looking at emotionally traumatic life experiences as the root of PTSD problems. They’re looking for the right thing… but they’re looking in the wrong place.
I really want to devote a fair amount of time and energy on this site to explaining to psychotherapeutic professionals the personal realities of living with TBI, as it relates to trauma. There are different aspects of the condition that both mask post-traumatic stress and exacerbate it. TBI adds another wrinkle to the whole scene that complicates matters and requires greater sensitivity to our situation.
When I informed my counselor about my TBI, they seemed a bit concerned that I wouldn’t need their help anymore… or that I’d terminate my sessions with them. They seemed to think that TBI work would replace the cognitive-behavioral work I was doing with them. But in fact, the TBI aspect makes it even more important to do cognitive-behavioral counseling. It doesn’t make counselors superfluous. If anything, it makes them all the more essential.