I was accused of faking my brain injury for attention
There is no way to soften the blow of a statement like this. I took what is arguably the toughest hit of my life, had to be rushed to the nearest trauma center with cuts, bruises, broken bones and a damaged brain – and was subsequently called a fake.
As I began my second life as a brain injury survivor, I found myself having to play defense against stunningly hurtful and relationship-ending accusations.
Brain injury is blatantly misunderstood by so many. The healing process for most injuries follows a predictable path.
When I was plowed down by a car back in 2010, my orthopedist let me know that I would be in a cast for three months and that most of my pain would be gone within six months.
Broken bones heal at a predictable rate. In fact, you could have set the Atomic Clock by his prediction. Six months after my accident, almost as if scripted, my physical pain ended.
So, this new neuropsych is kind of a pain in my ass. And that’s fine. Because the last one could be a monumental pain in my ass, sometimes, and it did me a lot of good to meet with them regularly.
Why, pray tell, would that be so? you may ask?
Well, because dealing with people who are completely off-base is good for my reasoning faculties. And it also shows me how on-track I really am, when someone I’m talking with is clearly not recognizing what’s right in front of them.
This new neuropsych, as I’ve mentioned, is 30 years younger than my former neuropsych. They are 15 years younger than I. And it shows. One of the ways that they really show their age, is that they don’t stop to listen and really understand what’s going on with me, and they jump right into fixing things before they have a strong grasp on what the situation is.
For example, I’ve been talking about how I need some help getting to-do items off my list. I have a ton of things I’ve been wanting to get done, and many things that I intended to do in the first 5 years that I had my house. But less than 2 years in, I fell and got hurt, and I was “checked out” for some time after that. I’m just now — almost 12 years later — getting back to a level that’s near (in some ways) to where I was before. In other ways, I’m nowhere near, and I’m not sure I’ll ever be again. But the basic gist of it is that I need to gear up and take care of things that have been languishing and neglected, lo these many years.
And what does my neuropsych give me, but a sheet of paper where I should write down my goal, figure out my motivation, and then do a visualization about what the reward will be, if I get it done. And then write it down in my planner, and just do it… after doing a little visualization about how rewarding it will be to get it all done.
Oh. My. God.
Someone please help me.
I am so beyond that rudimentary approach, and I need something completely different. But when I tried to explain that to them, they just dismissed me — and insisted that visualizing rewards is a cornerstone of making progress.
Okay. So, that’s their opinion. That’s fine. There’s some truth to it. But I really need help just walking through my priorities and seeing where everything fits in my life. I don’t need motivational help. I need organizational help — and getting my head around the big picture of what I’m doing — and why.
It’s not just about getting things off my plate. That’s important, so I can free up my thinking to handle things that are bigger than a breadbox. But it’s also about prioritizing and getting my head around the complexities of my day-to-day.
Unfortunately, I don’t have a lot of confidence in them, with regards to that. I’m not sure I have a lot of confidence in anyone in the healthcare professions, right now. At least, not that I’ve encountered. I’m sure there are excellent doctors and providers out there, but the only one I found who could actually work with me effectively died last year. And even they didn’t exactly do a bang-up job of covering all my bases.
Ultimately — and this is the amazingly profound irony of it all — it’s the people who need help who are on the hook for making sure we get what we need. The very people who don’t have the comprehensive knowledge about all the physiology and possible conditions that might be at work… and who are having trouble thinking and functioning, to begin with… are the ones who have to manage our situations, be our own advocates, and so forth.
If nothing else, as frustrating as my situation is, it’s good practice for me. I’m not sure I’ve ever felt like people could really wrap their heads around my situation, anyway, so this is not new. I just had unrealistic expectations that I could pick up where I’d left off with my old neuropsych and start there with this new one.
Nothing of the kind. They’re even farther back than the last one, and I feel a bit like Kevin Costner’s character in Bull Durham where he has to train an up-and-coming athlete who has a better chance than he at going to “The Show”.
But I guess that’s how things go, as you get older. I’m just not used to interacting with people younger than myself – especially healthcare providers. But news flash – that’s going to continue to happen, so I might as well get used to it.
Okay – pause – let’s see how my memory for that starting image is doing:
Not too bad — I just forgot the hash marks on the left line, and the circles are a little far apart, with the lines longer and the circles smaller.
I’ll try again later.
Anyway, it all comes back to the idea that when it comes to our health and recovery, we are often on our own. It’s sad, but true. And some days, I feel as though I’d be better off just not even dealing with any trained professionals, because the benefit I get isn’t equal to what it costs me.
Sometimes, it is equal. But you know what? Those are the times when I pull out all the stops and put my focus into my own direction and my own program, just using the experts as a reference point.
I’ve got a few weeks before I see them again. And I’ve got plenty to keep me busy. I’ll figure something out, I guess.
Don’t get me wrong. I have the utmost respect for my new neuropsych. They have great intentions, they are smart — brilliant, really — and they are driven and determined to help people who are in need of assistance. I’m lucky to have been connected with them.
Here’s the thing, though — they’ve got 30 years less experience than my former neuropsych. And that really shows. It shows in their pacing, their approach, their focus. It’s my understanding they’ve been working in clinical settings that have been largely academic, for most of their career, so far, and they’re relatively new to individual clinical practice.
My former neuropsych had 40+ years experience in clinical and rehab settings. I believe they once ran a rehab center, in fact. Or two or three. Anyway, they had decades of high-level experience in rehabbing brain injury survivors, and I benefited from that for the past 8 years or so.
Now I’m working with a “spring chicken” — it’s not the most professionally respectful term, I know, but that’s how they seem to me. They’re 15 years my junior, which just amazes me… And it shows.
Good God, do they have a lot of energy. It’s that kinetic, over-the-top-can-do kind of enthusiasm that people have before they hit a lot of walls, personally and professionally. They have an exuberance and optimism that I used to have, too.
Then I got hurt. And life happened. And a lot of crap came down the pike for me. And now I am where I am now — with a pretty big deficit where all my own exuberance and optimism used to be.
Although… maybe that’s not entirely true. Maybe I still do have that energy — just not to the same willy-nilly degree that I used to. Or maybe I do, and I just need to bring it back. Access it again. Play off the energy of this new neuropsych, who is in some ways like a breath of fresh air, compared to the dour pessimism and personal cynicism that sometimes “leaked through” with my old neuropsych.
Oh, another thing just occurred to me — I’m working around a lot of people who are my age or older. And that’s affecting my perspective, too. I work in an older environment, very established and staid, and compared to my peers, I feel like a spring chicken, myself.
So, I’m balancing out the energy of youth, as well as the balance of age. My new neuropsych is clearly still learning about things like how to pace their speaking, and how to give me space to sort things out. They move too fast for me, at times, and it’s frustrating.
But it’s good to get pushed. Again. After years of being accommodated. I need to be pushed. Quit feeling sorry for myself. Really work on my reaction time. And get back to my memory exercises. See above.
Here, let’s try to draw what I had at the start:
Not bad – I just had the proportions off a little bit, but all the elements are there. The right circle with the “x” is higher than it should be, and the vertical line off it is longer than the original. Also, the hatches on the left line are longer than they should be.
I’ll have to try again later today, and see how it goes.
Gotta get back to doing my exercises. Get myself going. And continue to make progress. Keep moving forward. Keep at it – give myself time to rest – but keep at it.
I had a full and productive weekend. I caught up on a number of things I’ve been needing to get done for weeks, now. I also got some things done around my yard that HAD to get done before it rains later this week. I feel pretty good about getting those things done. It was not a small task, but I did it. Woot.
Some important-but-delayed things I did not get done. But I got enough important things done, that it offsets the disappointment. And it gives me more motivation to get moving on those things I didn’t finish (or even start).
I’ve also been working on my breathing. Focusing on relaxing and feeling where my body is “at” — where I’m tense, where I need to loosen up, where my breath seems to have stopped. I need to keep it moving, not get stuck in fight-flight, which is what happens at times, when I hold my breath unconsciously.
Years ago, I was very intent on working with my breath and getting in touch with my body, so I could more effectively manage stress. It was a regular part of my daily practice, and it did wonders for me. Somehow, I got away from that. I got caught up in everything else, and I was in serious survival mode for several years, while I dealt with creditors and paid down my years-salary-worth-of-debt. I lost sight of the big picture with my approaches, and while some things improved in my life — like my job situation and my perception of myself in the professional world — other parts fell by the wayside.
Including my breathing. I’m working on that again. And swimming is a big part of it — since it involves both movement and breathing. And it’s great exercise. Just great, great exercise.
This week is a pretty big one for me. I have my weekly neuropsych appointment, when I work on problems with making progress and getting things done. I have a whole lot of things I need to get done on a regular basis. I’ve been doing them for years, I just haven’t been doing them as efficiently as I should – and it shows. I may need to take some of them off my to-do list and put them on my ‘would be nice to do’ list… and then not worry about them till later.
One project, in particular, has been drawing a lot of energy off the other projects I really need to do. It’s training materials for people who are in a certain part of the job market and don’t understand how things work.
The thing is, if I start on that, it’s going to be pretty all-consuming. It’s not just some training materials — the whole plan also involves public speaking, public appearances, and a lot of writing and publishing and networking. And I just don’t have time for that, now.
It’s a great prospect for me, and it could bring in a fair amount of money for me, but I have so many other things I want to be working on, I can’t really afford to spend the time on it, to do it full justice.
So, I’m tabling that — putting it on the “back burner” to simmer for a while. I’m really treating that like my backup-plan “B”, in case I lose my job or the 9-to-5 thing doesn’t work out for me. That would be the ideal time to cut this project loose and set it free — when I actually have time to fully devote to it.
I’m in the process of cooking up a number of other projects, many of which I find really inspiring and motivational. So, I need to make room for them, and find where I can fit them, while not burning out. I’ll work through this with my neuropsych this week — and in later weeks, as well.
In addition to that, I’ve got a town meeting this week, when we’ll discuss the fate of a company that wants to expand. I’ve had my ups and downs with the board I belong to — they don’t always seem to respect me, and they sometimes ignore me or talk over me. People in town have laughed at me, when I asked one of my “stupid” questions, which was completely disrespectful (and ill-advised, since the board I’m on makes decisions about what people want to do on their properties, and I’m not the sort of enemy you want to have). I let that go, though, and I continue to serve on the board. It connects me with the larger community, and it also puts me on good terms with the local authorities. It’s a lot easier dealing with the local police, when they run my personal details and realize I’m also an “enforcer” who serves the public good.
I probably would have gotten in more trouble, had the friction not dissipated when the cops realized who I was and what role I play in local government.
Another thing is, I’m seeing my neurologist later this week to talk about the headaches and my other issues. Actually, I’ll be seeing their assistant, as the neuro proper has kind of washed their hands of me. They didn’t find anything on the MRI (even the DTI-MRI) that gave them any clues about what was going on with me, and since they can’t diagnose me with anything, how are they supposed to treat me (and bill the insurance companies)? I feel for them, but I don’t appreciate being pushed aside.
Fortunately, while I was sorting through my stack of insurance statements and various papers and notices, I found a promotional flyer for one of those services that gives you access to second opinions by highly qualified physicians and healthcare experts. I’m going to check in with them, to see if they can help me, because this current neuro approach is not working. I really don’t need to take hours out of my day to drive to an office where I’m just going to be brushed off, and my concerns aren’t going to be taken seriously.
Just as an example, the neuro-in-charge told me that my concerns about falling and having a worse TBI than the one I had before, were unfounded. They told me that concussions are NOT cumulative, which contradicts just about everything I’ve read… and after weeks of consideration, I have a lot of reservations about their abilities and willingness to be of help.
Then again, I do fit the profile of someone in the “miserable minority” — I’m very much like the first individual profiled in that seminal 1996 paper, which touched off a chain-reaction of further studies and diagnostic / treatment approaches to folks with lingering post-concussive symptoms. So, maybe the neuro was referencing that profile.
My own feelings of insult and dismissal aside, the “miserable minority” approach may have done more to perpetuate misery, by steering away from the functional and structural issues that come along with traumatic brain injury, and focusing so deeply on the psychological factors.
I’m not saying psychological factors don’t come into play. I’m saying there’s more to it than that, and it’s my belief — after many, many years of unfruitful and counter-productive therapy approaches, followed by amazingly fantastic progress after far fewer years of basic functional retraining — that a focus on psychology, without addressing the underlying neurology, has done more to perpetuate PCS than anyone would guess.
Of course, people mean well. They’re just misguided. And they’re so caught up in proving that they’re right, and they deserve a place at the rehabilitative table, with all the respect due highly trained professionals, that they “circle the wagons” and get Balkanized — cut off from others, hostile and uncooperative and territorial, and always ready to battle over some piece of territory.
Unfortunately for those of us who need their help, we get sucked into that dynamic, and that’s no good for anyone.
But there it is.
There it is.
Friday is free and clear for me — no meetings, no appointments. I do need to do some shopping this week to pick up some black pants for my business trip next week. I’m going to be presenting at a client conference, and I need some black pants. Or maybe I don’t need to go shopping. I have a couple pairs of black pants I can probably wear. They’re just not as casual as the conference wants us to be. It’s definitely “dress down” — although we still need to present in a professional manner.
I also need to practice my presentation. I’m doing one technical talk that’s only about 10 minutes long, and I’m going to be “on call” to answer questions about the company’s full product line, which is a pretty extensive collection. I just need to have a quick 2-minute “spiel” I can launch into, for a variety of topics. That’s probably the biggest undertaking of this week, and I’ll be practicing while I’m driving to and from work, as well as to and from my appointments.
Memorizing things used to be easy for me as a kid. I can still memorize things, if I go over them 30+ times. 35 times seems to be the magic number, but I don’t have that kind of time — 35 times for each of the 10 different spiels is 350 separate practice sessions. At 2 minutes apiece, that’s 700 minutes (11.66 hours), minimum. I can break it up, sure, but it’s still a lot of time to spend.
Yesterday, I decided to do things a little differently, and go for my walk in the woods before I started writing. I intended to spend most of the day working on a piece I started about “chronic blogging”.
I had a lot of good ideas in the course of my walk, but by the time I got back, there were SO many, that I just couldn’t keep up with them all.
So, I went back to bed.
Turns out, my daily routine is a routine for a reason – it works.
I really need to stick to my standard approach of exercise, followed by breakfast, followed by writing… followed by either going to work, or having a good hike. If I hike before I write, my brain gets too muddled, and I lose the benefit I got from the vigorous exercise I did earlier.
Walking is exercise, yes. But it’s leisurely. And it’s not always conducive to my writing. I need to trust my gut and just do the thing I intended to do, to begin with.
Another thing that works for me, is talking through my daily life and logistics with my neuropsych. Not delving into my emotional landscape. Not digging up all sorts of old hurts and pains to “heal” them. I totally understand how that’s helpful. But for my purposes, I really need to focus on my day-to-day and manage the things that are functional problems for me.
I’ve been under the weather and feeling wiped out, in part due to my new NP’s fondness for “exploring emotions”.
Good God. Please save me.
Anyway, I’m not doing that anymore. I’ll set the tone and set the agenda by myself. This NP is quite a bit younger than me, and they’ve got a youthful vigor and excitement for “the hard stuff”. Please. I’m an old warhorse. I’ve done the hard stuff. Now I just need to function.
I’ve been in a bit of an energy crisis, over the winter. I just haven’t felt like doing anything much, and I’ve felt my energy waning. I haven’t been exercising as I should. I do ride my exercise bike in the mornings pretty regularly (it’s rare that I don’t, which is good), but I haven’t been lifting or swimming as much as I should be.
I start, then I feel tired and sore, and my motivation gives out.
So, I stop lifting… I stop swimming… and then I feel even worse.
The thing is, when I DO exercise — lifting and swimming and stretching — I actually feel great all day. And my energy is great. It’s just getting myself to actually do the initial work, that’s the problem.
But now it’s springtime. And with the days being longer, I feel my energy returning. I’m a real “sun person”. I love to be in it (within reason, so I don’t get sunburned or drained by the heat). And despite my sometimes painful light sensitivity, I love the sight of sunlight brightening the world around me. It just makes all the difference, as does a few extra hours of sunlight each day.
But with my energy being as low as it has been, it’s hard to work up the enthusiasm to make the most of it. Energy is a self-fulfilling prophecy — the more of it I have, the more I get… the less of it I feel, the less of it I can generate. And even if I want with all my heart to “kick it”, if I don’t have the strength and the energy and resources to do it… well, it doesn’t happen.
So, I have to do something. I need my physical body to support the wishes and desires of my mind and heart, and without conditioning, that’s not going to happen. Keeping in shape is about more than keeping the pounds off and looking good. It’s about keeping myself as functional as possible — getting myself to a place where the strength of my body is on par with the drive of my mind. It’s about never giving up, never quitting, always keeping myself functional in ways that actually let me live the life of my choosing.
Just an example: I have water delivered. In those 5-gallon bottles. A gallon of water weighs 8 pounds, so that’s a 40-pound weight I need to lift intermittently, when I change out the water cooler. It’s never really been a problem for me in the past, but over the last year or so, I’ve had less coordination and strength. It’s been an interesting challenge to A) hoist the weight up, and B) flip it over onto the top of the cooler without dousing everything around it with water.
Normally, I can do it fine. But the last couple of times, I’ve given the nearby shelf a good splash. It’s not that big of a deal, because everything can be dried off. But then it’s one more thing I have to do, and that puts a crimp in my flow. It also annoys the crap out of me. I hate that. I hate being weaker than ever. I hate being uncoordinated. I hate the disheartening sound of water splashing out of the well where it’s supposed to be.
It’s not the end of the world, but it bothers me. And it’s something I can actually fix.
So, it’s time to do something about it. I need to get my behind in gear and get serious about my strength routine. It’s for the sake of being more conditioned and capable, as well as better balance. Plus, I need to be smart about it and not injure myself by doing too much too soon.
Visualization in sport is a training technique that forms a part of the larger science of sports psychology. Visualization is also known as mental imagery and rehearsal. Visualization is used primarily as a training tool, one that improves the quality of athletic movement, increases the power of concentration, and serves to reduce the pressures of competition on the athlete while building athletic confidence.
Visualization occurs when athletes are able to create an image or a series of images relevant to their sport, without any external prompts or stimulation; the images are mentally generated by the athlete alone. Visual images are usually the most important to athletic training and may be employed as the sole mental training method. Athletes may also depend on auditory images (sounds), kinesthetic images (movements), tactile sensations (touch), and purely emotional stimulation, in combination with visualization or as freestanding training aids, as may be appropriate to the effort to elevate the performance of the athlete.
There is a powerful relationship between mental and physical performance in sport. The development of a wide range of mental powers, such as focus and concentration, elevates athletic performance; over-analyzing detracts from the athlete’s ability to react instinctively, an attribute that is usually a more desirable quality than the ability to reason through every sporting circumstance.
Visualization is intended to take the athlete to an image that conveys what perfection represents in the particular aspect of the sport. During visualization, the brain is directing the target muscles to work in a desired way. This direction creates a neural pattern in the brain, a pattern identical to the network created by the actual physical performance of the movements. A neural pattern is similar to diagramming the specific wiring and circuits necessary to transmit an electrical current. Alexander Bain (1818–1903) of Great Britain was the first scientist to develop a theory as to how the brain built such patterns to direct and control repeated physical movement. Numerous researchers since that time have expanded on the concept. Visualization alone will not develop the most effective mechanisms in the brain to later perform the desired action, but physical training coupled with visualization will create better recognition of the required nervous system response than physical training alone.
This technique has been around for a long, long time. And I used to do it, when I was competing in high school sports. Somehow, the practice didn’t always translate properly to my regular life away from sports, and somehow I thought that because my non-athletic visualizations just weren’t working, I was either doing it wrong… or it just doesn’t work.
I’ve modified my beliefs about visualization — down-sized them a bit, you could say. Now, instead of using it to shape my entire life, I’m focusing on visualization of basic physical activities, those very kinesthetic behaviors that actually respond to the brain’s visualizations.
I’m visualizing proper form while I lift weights. I’m thinking about the feeling of my body as it moves the weights up and down, back and forth. I’m visualizing workouts, and I’m imagining how good it feels to do it. And this morning, after I lay in bed for 20 minutes, waking up gradually and thinking through my workout, I felt really good, doing the workout itself. And at the end, it was even more satisfying than ever.
So, this is good. I know I’ve done it before — I’ve started out strong, then I lost my focus and stopped doing the visualizations… and some of the exercise. Part of the problem in the past, is that I would get over-tired, push myself too hard, then get injured, and I’d take time off to heal… and then I’d never get back to my former practice.
I’d just forget about it. As though it didn’t even exist.
And by the time I remembered it, I would be de-conditioned again, and have to start all over.
Now, though, it doesn’t feel demoralizing. I feel energized. And I know I’m doing the right thing by taking it easy and just getting used to the motions again. I am working with either very light weights, or no weights at all, to re-develop my kinesthetic and proprioceptive sense. I also have access to a strength trainer at work who consults with employees about exercises and nutrition. So, I’m going to take advantage of that benefit.
I’ll carve out time in my schedule, and I’ll just do it.
Because I can.
Spring is here. Summer’s coming. Then fall. Three seasons — followed by winter, which I actually love. All of them ready for me to get moving into.
Every now and then, I come across a mention of the loss of Self after brain injury. But not all the time. I come across mentions of poor judgment, poor risk assessment, diminished coordination, sensory issues, mood changes, depression, and a host of other cognitive-behavioral issues.
But not much discussion of the Self – of your Sense-Of-Self.
I distinguish between Self and Sense-Of-Self, in that the Self is a constantly shifting entity — our identities are in constant flux over the course of our lives. But our Sense is what we actually rely on. Our Sense of our Selves is what makes it possible for us live fluidly in the world.
Our Sense of who we are is what I consider a “precursor” to how we live our lives. When it’s stable, it allows us to plan and take action, without constantly second-guessing ourselves. A stable sense of who we are and what we are all about makes it possible for us to simply live our lives. The feeling that we can rely on ourselves to respond in predictable ways that are consistent with our deepest values and beliefs is at the very core of it. Most people take it for granted. But when TBI / concussion sets in, it can have a profoundly disruptive effect.
All of a sudden, you don’t know who you are. You don’t recognize your words, your thoughts, your actions. No matter what you do, things don’t seem right. Even if you are doing things that have been familiar for a long time, in situations that you know well from years of practice, a disruption to your Sense-Of-Self can turn even the most familiar activity into an emotional and logistical gauntlet.
I’m not talking about having trouble navigating new experiences. I’m talking about having long-familiar experiences suddenly seem brand new. We save a huge amount of energy, just by repeating what we know. Our systems are designed to acclimate and then follow the “ruts” we’ve grooved for ourselves. It cuts down on friction, it makes our lives considerably more fluid. But a TBI can disrupt so many parts of a once-fluid process, that even something as simple as making lunch or going for a walk, can become a trial-and-error process.
It’s a real Trial… that’s full of Errors… the kinds of errors we never used to make — and we don’t feel we should even make.
The smooth processes we developed along the way of maturing to adulthood… and then on through the rest of our lives… are so invisible and automatic, we never realize just how important they are. We have no idea how central they are to our identity, our ability to live fully in the world.
Only when they go away after TBI, do we realize just how important they were. But we’ve long since lost the orientation that lets us understand them, one piece at a time.
If you’ve ever tried to give people exact instructions on something as simple as making a peanut butter sandwich, you may know the frustration of losing the fluidity that should be central to your regular life. After concussion / TBI — especially for those who have excelled at their chosen pursuits — the steps for doing things are different. Maybe some of the steps have stopped working entirely, and you have to figure out something different. So many the skills you once knew by rote… now you don’t. And the fact that they should be easy — but aren’t — is the unkindest cut of all.
And you have no idea who you are. You don’t trust yourself anymore. You may not feel like you even know yourself anymore. You’re cut loose… lost… and you have no idea how to get yourself back. All you know is, things are weird and slow, and you don’t know how to make them stop being weird and slow. Some days are better than others, but they’re definitely not like they used to be.
This is not a small thing. It’s a terrible loss. It’s not just a “narcisstic injury”, it’s a blow to your very existence. It threatens everything you do on a logistical basis — not just a psychological/emotional one. It literally makes it harder to function. And professionals who file it neatly under a psychological disorder are missing the point.
We literally cannot function — because we don’t have the clear sense of ourselves that’s necessary to do so.
And I believe it sits at the very heart of the struggle of many mild TBI survivors’ struggles.
I also believe it sits at the heart of “self-destructive” behavior exhibited by folks recovering from concussion / mild TBI. I believe it’s what drives us to make the risky choices we make, to take the dangerous actions we take. We’re not feeling bad about ourselves and trying to punish ourselves. We’re trying to help ourselves, by using stress hormones to regular our systems and feel like ourselves again.
As a onetime top performer in my field, nothing has been more debilitating for me in the past years, than losing my well-honed edge… losing that sense of myself as being capable and competent. I was once an important contributor in my field — on the front lines. And I had a sense of flow and fluidity that was second to none. I could just do what I did, without concern for the outcome, because my skills ensured that even if it didn’t turn out 100% right the first time, I could continue to have at it — and eventually things would be set right.
After my fall in 2004, that all changed. No more confidence, no more innate skill. Things got rearranged, and what used to come so naturally to me, now had to be thought through. A lot. Painstakingly. Painfully.
It was crushing. And the only thing that made it better, was a constant “diet” of stress and risk and danger, which kept my system primed for action with all those stress hormones. Adrenaline. Epinephrine. Norepinephrine. And more. Heaven only knows what else.
Of course, it took a toll. It delayed my recovery. But it was the only way I could figure out how to get myself feeling regulated again. It was the only way I could have some sense of control in my life. I know I’m not alone in this. Countless concussed folks “bounce back” from their injuries too soon and dive right into risky behavior that’s misunderstood — and mis-treated — as a sign of self-destructiveness, bipolar disorder, or some other mental health issue.
It completely misses the point. Because people don’t understand the nature of TBI and how it affects us at a core, functional level. They’re quite invested in the standard-issue approaches, and the fact that those approaches don’t produce the kinds of results they seek, seems to indicate a problem with the patient/client — not the approach.
In many ways, we’re still in the dark ages with this stuff. Still blaming the issues on the wrong danged thing, still looking for answers far from their actual source. This may change… if I have anything to say about it. Of course, I’m only one person, but with any luck, others will pick up a baton from the pile that’s lying in the middle of our proverbial living room, and carry it along with me.
To date, I’ve counted 10 consciousness-altering impacts to my head, as well as rotational and acceleration/deceleration scenarios, and those are only the ones I specifically remember. There were probably many, many more — because I used to play sports in order to hit my head. The “brain silence” that came immediately after the impact, followed by the mad rush of energy, made me feel like myself again. It quieted the noise around me, and it also gave me energy and focus that I didn’t have under regular conditions. Getting concussed wasn’t a bad thing for me. It was a welcome break from the distractions and confusions of the world around me, and I sought it out regularly.
Now, I never played football on an organized team, so I didn’t have that constant slamming in one practice after another. That gives me some comfort, because it’s not like I had hundreds and thousands of subconcussive hits over the years. But I had plenty — even more than most people can guess.
The other thing worth mentioning is that I used to be a head-banger. This started when I was a little kid. I remember my mother coming into my room, when I was young and stopping me from hitting my head against the wall. She probably heard the impact on the other side of the house, I hit it so hard. I’m not sure why I did it, but I can tell you that it always made me feel better. There was something about the banging that made all the noise get quiet. And I would keep banging until I could feel myself get hurt… and that post-impact silence would set in… followed by the rush of energy (which may have come from the neurometabolic cascade that happens after concussion – if you haven’t read the paper, I highly recommend it (click here for free access) — it’s a lot of science, but you can certainly pick some things up).
Anyway, the last time I banged my head was around 2010. I was incredibly stressed out by my living situation. My spouse was having a lot of health issues, and I was alone in dealing with them. I didn’t dare tell anyone about them, because they’re a public figure and if others knew the details, it could wreck their reputation, as well as their ability to do their own work in the world. So, I was alone. And stressed. And at the end of my rope.
So, I banged my head. The crazy stopped, the silence set in… followed by the biochemical magic that follows a consciousness-altering impact. And I immediately started to feel better.
Then I remembered what concussion does to you, and I remembers what it had done to me and my life.
I haven’t banged my head since. And that’s a good thing.
Of course, I can’t help but wonder if this is going to screw me up in the future… dementia and all that. But I can’t worry about it. I just need to keep moving forward, keep my focus on being of help and service to others. Nothing else works for me.
And certainly, banging my head doesn’t work for me. I can’t necessarily control it happening to me ever again by accident.
Here’s an interview with Ken Collins with Michael Shaughnessy at Eastern New Mexico University. It’s incredibly important information about controlling stress in TBI recovery so the limbic system fight or flight response isn’t triggered:
Q: Ken, first of all, what is your exact title, and what would you say you do?
A: San Juan Center for Independence-Gallup, Program Director, where I supervise three staff members and oversee independent living skills, peer support, advocacy, information and referral, nursing home transition, personal care option services to people with disabilities and elders in McKinley County. SJCI-Gallup is a non-residential, cross disability organization and is one of eight different independent living centers in New Mexico. All independent living centers are private non-profit tax exempt, 501 (c) (3) organizations with their own board of directors who oversee each independent living center programs and services. All independent living centers are funded through the Department of Education and provide the core services I mentioned above. However, some centers don’t provide the personal care option. New Vista’s in Santa Fe is one of those centers.
Q: How did you first get involved in brain injury and head trauma?
A: I received my brain injury 38 years ago on December 31, 1976, after running a snowmobile headfirst into the side of a parked car. I have a month missing from this accident and only remember Christmas Eve and then don’t know anything until I woke up about six inches from a mirror in my parent’s bathroom picking the wires in my mouth. I came out of darkness through a fog to clarity. I knew I was home, I played baseball and my name was Ken, but I didn’t know anything about home, baseball or Ken. My mouth was wired shut because when I hit the car I broke my jaw below my chin on the left side and rammed my right jaw bone into my ear canal, separated my skull completely (cap fracture) and knocked out a tooth and broke a rib. My rehabilitation was trying out for the Seattle Mariners Baseball team nine months after my brain injury that helped with kick starting my neuroplasticity and recovery. Lucky for me I had collected a big box of personal items from when I was in the 7th grade till being 26 when the accident happened. Every day for about six months I went through that box to put myself back together. There were old get well cards, love notes from old sweethearts in Jr. High and high school, stuff that only meant things to me and newspaper articles from sports – stuff like that. and then over the next five years conducting business as a community organizer where I helped establish the Westfir Workers Association in its attempt to purchase the closing Chicago-based Edward Hines Lumber Company in Westfir, Oregon and other non-profit community organizations. This provided me with the structure I needed and provided me with a sense of purpose and meaning that is critical during the early stages of recovery from a brain injury. In 1983, I got hired at one of the first residential brain injury programs in the country (Center for Neuro Educational Therapies) that began my formal training about brain injury. In 1985, I was a founding member of the Oregon Head Injury Foundation – in 1988 was elected to the National Head Injury Foundation and served on the NHIF board for 6 years. From 1990 to 1992 I was elected vice president of the NHIF Survivor’s Council. As a VISTA Volunteer I was a VISTA Volunteer where I helped to establish the first independent living program in the US for people with brain injuries (Uhlhorn Apartments) and also helped to get a congressional investigation of the head injury rehabilitation industry that resulted in FBI raids on New Medico which resulted in New Medico facilities closing across America.
Q: Can you talk about the impact of stress on a person that has suffered either an open or closed head injury?
A: Stress is something that affects everyone – it is a biologic event and why it is something very important for people with brain injuries to be aware of and control. This is especially true since it is well known that whatever problems someone has before their injuries these problems are magnified. This is true for the limbic system fight or flight response too since stress is what triggers the fight or flight response. Life in general is pretty stressful after a brain injury. Stress is something that all people with brain injuries experience. Relationships are stressful. Short term and long term memory issues are stressful. The loss of not being the same after your brain injury is stressful. Having friends leave because they don’t understand brain injury and don’t come to visit anymore is stressful. Not being able to go back to work after your brain injury is stressful. Having people treat you differently after a brain injury is stressful. The stigma of brain injury is stressful. Having to go to appointments and doctors visits is stressful. I first noticed how stress affected me when my friends came to visit me at home after my brain injury. I couldn’t always remember their names. I knew they were my friends because I could recognize their faces but the harder I tried to remember their names the harder it was and I could feel my body tense up as I tried my hardest to remember their names. The more my muscles tensed up the harder it was for me to remember their names. This was also true when I went through those years of “word find” issues. The harder I tried to find the missing word in what I was saying the harder it was to remember. Before my injury, I was a professional baseball pitcher and learned about biofeedback so this is why I was so in tuned to my muscles tensing up. A pitcher has to remain relaxed during stressful situations i.e. runners on base with no one out and a one run lead in the bottom of the ninth inning. It is very important to keep your poise in these situations and stay cool, calm and collected. Be in the moment and relax because if you don’t stay relaxed your wrist will stiffen up and when you pitch the ball it will not have any movement on it and will straighten out and your fastball will become easier to hit. Because I had this knowledge and awareness of biofeedback it has made it easy for me to understand the dynamics that stress has on my life and this has provided me with some insights about how stress affects my brain injury recovery. Deep breathing and relaxing is something I do naturally and this has played a useful role in my brain injury recovery process.
Q: You have spoken at several conferences about head injury. Tell us about a few of them, and your reception.
A: This will be my 5th year in a row presenting at the Southwest Conference on Disability. Much of what I’ve talked about over the years has been giving people attending my presentations an historical perspective in terms of what I’ve done over the years so they know I’m not talking about theory but experience in doing it. I have also talked about how things have changed since I first got involved with head injury rehabilitation in 1983. Back in those days there were very few services available in the community and the place I got hired was one of the first residential programs in the country for people with head injuries – Center for Neuro-Educational Therapies (CNET). I was a founding member of the Oregon Head Injury Foundation in 1985 and got involved on a national level in 1988 with the National Head Injury Foundation. I sat on the NHIF board of directors for six years and resigned in 1995 to start working with people with developmental disabilities for five years in Oregon before moving to New Mexico in 2000, to work at San Juan Center for Independence (SJCI) for three years before going to work for another developmental disability provider in Gallup for five years and then being asked to come back to SJCI as the program manager. In 2010, I presented on creating supportive housing for people with brain injuries modeled after the Uhlhorn Apartments program in Eugene, Oregon I helped start as a VISTA Volunteer. The Uhlhorn Apartments in Eugene, Oregon uses some common sense technology to help people with brain injuries live in a stress free environment as possible. Example: Timers on the wall of the apartment close to the stove. Before the burners on the stove can be turned on a timer must be activated. The timer is set so that the person with the brain injury doesn’t leave their stove on and cause a fire. Once the timer runs down the stove is turned off. Cupboards in all the apartments are open so the residents can see where their food and close are stored. These simple environmental adaptations make it easier and less stressful for brain injured residents to start their days off so they aren’t confronted by short term memory problems. Back in the early years of my recovery when my day started off on the wrong foot it would take me the whole day to start getting back on track. Now I know this was because of the limbic system fight or flight response that was triggered by the stress of having something go wrong.
In 2011, I talked about the lessons I learned over the last 34 years of living with a brain injury to help professionals, service providers and state agency representatives recognize the positive benefits for people with brain injuries to relieve stress so they can achieve happiness and joy during their recovery process.
Happiness & Joy after Brain Injury @ 61 from Chaos & Turmoil to Balance & Harmony
Happiness and joy is a journey with many obstacles and barriers to overcome.
Finding happiness and joy in your life after brain injury – is healing.
Relieving stress and anxiety will make the journey easier.
Relieving stress and anxiety in your life – is healing.
Setting a routine will help relieve stress and anxiety and will provide you structure to make planning and problem solving easier.
Setting a routine and sticking to it – is healing.
Finding purpose and meaning in your life will help motivate you and provide the means to persevere and move on and hope for a better day.
Hope is healing.
Finding discipline will help you follow though and be accountable for yourself and help regulate the impulsive behavior sometimes caused by most brain injuries.
Being accountable for your actions – is healing.
Respect for others and self-respect will help you regain self-confidence.
Regaining self-respect and self-confidence – is healing.
Exercise everyday and good nutrition makes life easier.
Exercise and good nutrition – is healing.
A supportive family and friends helps build trust in yourself and others.
Trust is healing.
Learning about your brain injury and talking about it makes life easier.
Making life easier – is healing.
Finding a support group or a good friend to speak with about this is a good idea and helps you heal the unseen injuries caused by your brain injury.
Talking to others about your unseen injuries – is healing.
Being content with who you are and how you live is very important after a brain injury.
Being content – is healing.
Finding happiness and joy after brain injury is the key to recovery.
Happiness and joy – is healing
In 2012, I presented on Accessing Life after Brain Injury – Public Service, Political Action & Community Organizing. After sustaining a brain injury in 1976, I had to start life all over again. Through public service, political action and community organizing, I regained meaning and purpose in my life and overcame many obstacles and barriers placed before me through hard work, self-determination in structured settings. After I tried out with the Seattle Mariners nine months after my brain injury in 1977, I helped organize the Westfir Workers Association (WWA) to purchase the closing Chicago-based, Edward Hines Lumber Company operations in Westfir, Oregon. Lane County came in a did a feasibility study that lead to the establishment of a local economic development corporation – Upper Willamette Economic Development Corporation (UWEDC) where I became it’s executive director for four years. This provided me with the structure and neuroplasticity I needed to set the stage for my recovery process to take place.
In 2013, my presentation was: Brain Injury Recovery Using: Emotional Freedom Techniques (EFT Tapping) Eye Movement Desensitization and Reprocessing (EMDR) and Mindfulness Meditation Training. I used the expertice of three practioners to explain what each therapy does and how it benefits people they work with.
Ken Collins will discuss how he utilized Emotional Freedom Techniques (EFT Tapping), Eye Movement Desensitization and Reprocessing (EMDR) Techniques and Mindfulness Meditation Training to overcome problems with my brain injury he experienced after being attacked by a burglar with two knifes at his home on June 20, 2013.
Ken took 6 weeks off on medical leave because the PTSD from this incident brought back several issues with his brain injury he had resolved 15-20 years ago. His vision, balance, equilibrium and memory were all affected negatively after the attack. Ken was unable to overcome these issues by himself and started counseling with to assist him with these challenges.
His counselor used EFT, EMDR and Mindfulness Meditation Training to help him overcome the problems he was experiencing and then after going back to work in August, his attacker came by his worksite to harass him and wasn’t arrested. The DA’s office lawyer had told Ken on several occasions during court proceedings that if his assailant came by his home or office to call the police and he would be arrested. So when he did and Ken found out that the DA’s office failed to get him the protection order he needed to keep him safe. This event sent Ken into a tailspin and magnified the issues he was working on from the knife attack. Now, in addition to those issues Ken was very angry and felt vulnerable because he felt unsafe at work and at home.
Ken’s counselor continued to offer him Mindfulness Meditation Training, EFT and EMDR for 12 weeks after this and now Ken has regained his composure and has returned to work and regained his self-confidence so he can continue down the road to recovering from his brain injury.
Ken Collins will discuss what happened to him during and after the knife attack and how this affected his brain injury. Ken will also show how Mindfulness Meditation Training, EFT tapping and EMDR techniques can help other people with brain injuries with their recovery process.
Last year I did a Poster Board Presentation at the Southwest Conference on Disability: Creating a Quality Life for People with Brain Injuries Using Neuroplasticity, Mindfulness Meditation and Mindfulness-based Stress Reduction. I also did a presentation on the Uhlhorn Apartments in Eugene, Oregon where I talked about the environmental stress reduction features of the program.
This year I will presenting at the Southwest Conference on Disability on The Biology of Brain Injury – Controlling the Limbic System Fight or Flight Response. I will discuss the critical need for people with brain injuries to learn about the role the mid-brain and limbic system plays in triggering the “fight or flight” response under stress. When fight or flight is triggered people with brain injuries are in a reactionary mode which affects everything they do – processing, problem solving, decision making, planning, memory, etc.
Q) I understand that you are slated to speak in August at a very special conference. What will you be speaking on and what is the exact title of the conference?
A) I will be presenting at the Native American Brain Injury Summit in August. My presentation will be about controlling the fight or flight response for Native Americans with brain injuries.
Q) What kinds of information do survivors of head injury and brain trauma need?
A) I think the most important thing is to become more aware of what stress does to them so they can play a more active role in managing their recovery process instead of reacting to it. Once the fight or flight response is triggered it is hard to turn off if people with brain injuries don’t have the skills (Mindfulness, EFT, EMDR, etc.) to relax and calm down or as I like to say: “Find Your Happy Place”. All of this takes a lot of work and won’t be easy for many people with brain injuries – unless they have some basic understanding about stress reduction like I did before my injury. As you know there is no quick fix to any of this but with awareness of the role stress plays in their lives and then an understanding about how the limbic system fight or flight response is triggered under stress most people with brain injuries can become less confused and angry. By being able to improve their wellbeing by managing stress people with brain injuries should be able to improve their self-confidence and self-esteem. This will also give people with brain injuries the opportunity to take ownership of their recovery process by not being dependent on others thus improve their self-confidence and self improve their self-esteem. Win-Win!
Q) We have all heard about the “fight or flight “syndrome back in Psych 101. But how is it relevant to those with head injury?
A) This is why what I’m saying is so promising for improving the quality of care for people with brain injuries. Since doctors, educators and professionals already know about the limbic system fight or flight response they just need to pass on the importance of regulating stress so the fight or flight response is controlled so the fight or flight response isn’t triggered. I have been living with my brain injury for 38 years and know firsthand how stress has created chaos and turmoil in my life. I thought professionals knew this already until i was at a Brain Injury Resource Center, peer mentoring training and found out different. I think professionals have been so busy treating the symptoms of brain injury (sympathetic nervous system/limbic system fight or flight response) that they haven’t looked at the causes of these symptoms. I see two problems with all of this. 1) Getting doctors, providers, educators and brain injury professionals to value this information and buy into this concept and then incorporate it into their practices. 2) Getting brain injured individuals to do the work it will take to control their stress so they start seeing a difference in their lives. I was hard wired for my brain injury recovery process to take hold because of my understanding about what stress does and how to react to it – biofeedback/deep breathing/relaxation/keeping my poise. The mindfulness of this process improved my wellbeing and has given me the hope I needed to carry on and not give up. The majority of folks with brain injuries don’t have this understanding before their injuries and it will take them time to see the results. I also have the will and self-determination it takes to improve my condition and get better. I realize understanding controlling stress so the limbic system fight or flight response is managed won’t work for everyone because of the extent of some people’s injuries. That being said, there are many who can and will use this information to improve their lives. If we can improve the lives of some people with brain injuries that will be a start and then other people with brain injuries might be more willing to give it a try. I know understanding how I have gotten better since my brain injury has helped me control the stress that triggers the limbic system fight or flight response. This information has also helped others too. Lets’ give this information to others and see what happens. Since you already know about the fight or flight syndrome from “Psych 101” it should be easy for you to spread the word about why controlling stress so the limbic system fight or flight response isn’t triggered for people with brain injuries.
Thank you for giving me the opportunity to help spread the word about my brain injury recovery process.
A funny thing happened, when I was working on my TBI S.O.S. writing… Here, I was feeling really strong and certain, starting to feel like my old self again…
And then, all of a sudden, I wasn’t. I went through a period where I really lost touch with my identity all over again, and each day I woke up wondering, “Who the hell am I, and how did I get here?”
Any talk about regaining a sense-of-self after TBI seemed, well, ironic. And unfitting. It didn’t exactly ooze integrity, from my point of view.
I guess I still needed to learn a thing or two.
So, I had to step away. And do some more work in myself. And get myself back in shape… back to a place where I actually did feel like myself again… and feeling like I could actually talk about restoring a sense of myself in terms that were true and honest and genuine (not contrived and forced).
I thought I was in a good space, back in February. And I was ready to start writing some more. But then life happened, and I got caught up in the neuro stuff, so the Sense-Of-Self stuff took the back seat again. My sleeping habits got bad. I got too tired. I got too bent out of shape over things. I really wanted to write… but there were so many other concerns coming up, and I only have so much bandwidth.
It’s been a little while, now, and I’m actually feeling much more stable. I’ve worked a lot on my sleeping patterns, lately, and I’ve also gotten settled in at my job (while keeping an eye open for any new layoffs — supposedly there are some coming next week? who knows?). My schedule is steady. I have my tools in place. And I feel like I recognize myself when I get up in the morning, and when I look at my reflection at night as I brush my teeth before bed.
TBI is a strange little m*therf*cker of a chronic condition. It takes so much from us, it steals so much, it separates us from everything we love and hold dear… and it offers us absolutely no clue as to how to get back to where we want to be. Sometimes we can never get back to where we want to be, but we can find some peace in knowing we’re back to where others need us to be.
TBI can make us incredibly self-centered. We have to be, in a way, because we have to recondition ourselves to do so much, to re-adjust to changes in so many things we used to take for granted. How ironic that the one “cure” I’ve found for that sense of rootless confusion, has been to look away from my fanatical self-centeredness and put the focus on others and what they need. Ironically, when I put my selfish concerns aside, I actually find a sense of myself that is whole and wholesome — and helpful for others.
And that focus on others absolutely has to be about helping people understand the impact that a fractured Sense-Of-Self has on TBI survivors. It is absolutely positively central to the issues we have — and I firmly believe that that S-O-S condition is a key factor in PCS and other lingering after-effects of TBI. I believe it’s an important driver behind the stress that takes over so often after a brain injury, and I’m convinced that it — rather than any self-destructive tendency or even impaired risk assessment — is behind the behaviors that result in multiple concussions / mild TBIs that accumulate over the years.
I’ve watched my own fractured Sense-Of-Self play a pivotal role in my own poor behaviors and “flawed” decision-making. Some believed it was because I felt badly about myself or I didn’t respect myself, or I wanted to harm myself in some way.
On the contrary — I actually wanted to help myself, and risky behavior was the only way I could figure out how to get the pump of biochemical goodness that “brought me back to myself”. So long as we continue to ascribe “self-destructive” risk-taking behaviors to psychological wounds, rather than biochemical impulses, treatment for mild TBI and concussion sufferers will remain incomplete — and a self-fulfilling prophecy of poor long-term outcomes.
The loss of a Sense-Of-Self lies at the heart of so much suffering in TBI — both for those who have been injured, as well as their loved-ones and social circles.
And until we “get” that and start treating it directly, it will continue to be a problem.