Sequelae and Intervention Following Head Injury

A great section from Neuropsychology and the Assessment of Mild to Moderate Head Injury by Dennis P. Swiercinsky, Ph.D. Note:  “Sequelae” means

1. A pathological condition resulting from a disease.
2. A secondary consequence or result.

The American Heritage® Dictionary of the English Language, Fourth Edition

I usually call them “after-effects”. My comments are in italics below.

A mild head injury, such as from a fall, an automobile accident, or a work mishap, often brings the person to the attention of a physician or a hospital emergency room.

But sometimes this doesn’t happen. Sometimes we can’t get help, whether we refuse it, or people don’t realize something significant took place.

If there are no complications or other injuries apparent, the person is checked over and sent home, perhaps with a prescription for pain relievers and a checklist to watch for any complications that might develop.

I wonder if the checklist shows what to do, if the complications arise. Seems like that would be helpful.

Without timely, appropriate, and comprehensive follow-up diagnosis, education, and treatment, the lingering problems from uncomplicated head injury can mushroom into seemingly relentless frustration.

True – and that’s what often happens with MBTI survivors. Even moderate TBI survivors, who get no (or inadequate) medical treatment, can end up without adequate follow-up diagnosis, education, and treatment. And how those lingering problems add up…

Underdiagnosis or misdiagnosis of the multiple cognitive, behavioral, and somatic complaints following head injury is common. Ultimate recovery and maintenance of a positive attitude toward recovery, as well as adjustment to the emotional trauma of the event that caused the injury, depend on early, appropriately intensive, and comprehensive intervention.

It’s a nice thought, that early, appropriately intensive, and comprehensive intervention is a possibility for people, but TBI happens so frequently, and so few people are adequately aware of it and its “wrinkles” that it seems like hanging your hat on early intensive and comprehensive intervention is a set-up for failure — or perceived failure.

Too often, symptoms are acknowledged by health care providers but are understated or minimized.

Amen to that! My doctor thinks it’s okay for me to not get a full 8 hours of sleep a night. And I can’t tell you how many doctors and healthcare folks have shrugged off my issues — pain, fatigue, etc. It’s maddening.

The urge to get persons back to work too soon and without comprehensive understanding of the injury often creates emotional and cognitive obstacles and usually worsens the symptoms and outcome due to creation of stress, greater discomfort, chronic re-injury, and feelings of distrust and resentment.

Yeah, we’re all supposed to get back to work immediately. What makes this particularly dangerous, is that a person who has recently experienced a TBI is depending on the assistance and guidance of those around them, to help them deal with everything. We’re friggin’ brain-injured, for heavensake! The fact that education and treatment so often fall into our own hands — the very people who need help — strikes me as the ultimate irony. And yet, so many of us are put in that position. We cannot even get help, lots of times, unless we push for it. Of course, it’s difficult to push for it, when your reasoning faculties and your cognitive abilities have taken a hit.

Educating the patient, family, employer, case manager, and others involved in the lifestyle changes caused by brain injury is of extreme importance.

Yes, because like I said above, the survivor is the one in need of help — and should not be the one holding the reins of the team of horses. Making a recent TBI survivor resposible for their own diagnosis and care and survival is like asking someone who is legally blind to drive a team of  Budweiser Clydesdales down a busy boulevard. They may be able to do it, but it’s a crapshoot. Someone who isn’t brain-injured needs to be at the helm, and they need to be properly educated. Preferably, everyone in the survivor’s immediate circle of influence.

Everyone needs to understand that even though no bones may be broken, no cuts sustained, and that the injured person may look and talk just fine, there is real injury.

And people need to be a lot less afraid of brain injuries. Probably the biggest hurdle to me getting help and support from anyone in my life around my TBI’s is their mortal fear of the prospect of brain injury. It’s mighty difficult to discuss your needs and your situation with people who are frozen like deer in headlights at the sound of the words “traumatic brain injury”.

The complex injury involving cerebral contusion and diffuse axonal injury within the brain, trauma and stretching of cervical muscles and supportive tissue, abrasion within the cervical vertebrae, soft tissue injury to muscle and circulatory structures of the head, chronic muscle strain due to guarded behavior in response to pain, changes in cerebral circulation and perfusion, and potential neurochemical and neurotiming changes in brain function provides the foundation for a host of behavioral, emotional, and cognitive changes.

So, how do we educate people about this? How?! It’s a lot to consider and take in — how can we get the right information to people who need to know, in ways they can actually understand it?

Diminished self-confidence, negative self-reference, inflexibility, desire for withdrawal, slower thinking, emotional unpredictability, and frustration intolerance stem from the complexity of injury.

Yes, they do. And it’s a vicious, self-perpetuating cycle that we get sucked into. The more it’s allowed to escalate and continue, the worse things get… Sometimes until it can’t possibly get any worse…

If the patient, family, employer and others do not understand the injury and its consequent dynamics, unreasonable expectations, charges of malingering, and inappropriate treatment will typically follow. Failure to understand and appropriately treat mild to moderate brain injury can result in prolonged and less than desirable ultimate outcome.

Yes, yes, and yes. All true.

The good news is, it’s possible to recover from late-effect TBI’s, even if you never received adequate medical care or diagnosis or assistance. And it’s a difficult thing, and a pain in the butt to have to do it yourself, but with focus and intention and the right information, it IS  possible to get back on track and reclaim your life after TBI.

Like the folks at Give Back Orlando, Dr. Swiercinsky actually takes seriously the cognitive-behavioral impact that even a mild TBI can cause. And the mention of the long-term effects that are less than desirable gives me hope, as well.

The main issue I have with what Dr. S says, is the feeling that all is lost, if you don’t act quicly. People have been having head injuries since the beginning of time. Millions of us have them every year. And yet, we’re still here. Granted, there’s a lot we can do to improve our lot — and we have a long way to go, to fully understand how best to treat and support TBI survivors. But all hope is not lost, if you didn’t get immediate, intensive, extensive help.

I’m living proof that survival is possible, even with precious little help from the rest of the world. I’m not recommending it to anyone — it’s much harder than it should be — but it is  possible.

Remind me to never do THAT again…

Over New Year’s Eve, I went to a firewalking ceremony. Some friends of mine are into walking on glowing coals, and they said it would be a good experience for me to have. Personally, I was more interested in a bonfire than walking on coals, and I didn’t actually intend to “do the walk” with everyone else. I didn’t intend to sit through the little presentation that was offered before everyone walked, too.

But by the end of the evening, I had sat through the presentation, broken a board with my bare hands, and walked across glowing hot coals. By the wee morning hours, I was high as a kite. And now I’m paying for it. Big time.

Because as much as I enjoyed staying up way past my bedtime.. and as much as I enjoyed the company of the folks I was with… as powerful as I felt as that board snapped under my hand… and as much of a thrill as I got from walking barefoot across glowing coals… the benefit was short-lived, but the gut-churning after-effects are still with me.

See, one of the goals to the evening was “getting rid of old stuff that is holding you back.” Breaking the boards and walking on coals were supposedly for breaking free of limiting patterns and getting rid of untrue self-talk. The intention was to symbolically shatter misconceptions about ourselves, as well as find out we could do things we didn’t think we could. And that’s fine. We can all use that. My argument has to do with the depth, breadth, and scope of the changes we were supposed to experience, and the lasting effects on me, in light of my neurology.

I got the impression from the person leading the firewalk, that they considered firewalking a way to completely let go of “old stuff”… to break free from self-limitation, and step into a whole new way of being in the world for the new year. That’s fine, but did they honestly think that a single evening could erase a boatload of trauma for participants, just by breaking a board and walking on coals? They seemed to think so. And they really pushed participants to “get in touch with whatever is holding you back,” which included everything from things people had said to us that were untrue, to ideas we had in our heads about what we were capable of doing. It was a lot to compile. And it was totally overwhelming.

Now, maybe it’s possible for neurotypical people to do this sort of thing — list out a bunch of ideas they want to change about themselves, and then symbolically sever their “connection” with those old stories, and have their lives change for the better. But for this particular individual, the prospect of overcoming neurological, physiological, psychological, and emotional issues (many of which are intertwined, and are perpetuated in a complex cause-and-effect waterfall/chain reaction that is hard enough to track, let alone fully understand) in the course of one evening, seems a bit of a reach.

Some people left elated. Others left despondent (because their issues wouldn’t budge). Others took it all in stride and disappeared into the new year. I started out elated that I’d been able to do the things I’d done, but by this afternoon, after I’d woken up from my extended lie-in, I started to feel downright crappy.

‘Cause my “issues” aren’t quite that easy to dislodge. And I felt sort of the same way after the firewalk, that I used to feel after therapy — like I was supposed/expected to have some breakthrough by identifying my problems, but the waters just got more muddied, the more I contemplated my issues. It didn’t help. It made things worse.

With me — and countless other MTBI survivors — the emotional aspects of life are complicated by neurological ones… and the emotional aspects often camouflage the neurological sources of one’s problems. And the more you hammer away at emotional issues, tring to banish them without addressing the underlying neurological sources, the worse it makes a person feel, who’s seeking relief from emotional distress.

And the more today went on, the worse I felt. Because I was/am tired. Totally wiped out, to the point of not being able to think. And I’m also revisiting all those ideas and scenes and concepts we were focusing on last night that I supposedly overcame, unable to filter them and parse them all out, ’cause I’m so tired. I’m all for personal transformation, but there was something prefunctory and a little presumptuous about that firewalk experience. The more I think about it, the worse the taste in my mouth.

Okay, true, it’s been less than 24 hours since I got home from the shindig, and the emotional hangover will probably wear off before long. But still, the whole experience doesn’t sit right with me, and I feel a bit “behind” today — not rested, not rejuvenated, but tapped out and taxed.

I’m going to bed.

The year after the Berlin Wall came down

1990 was a big year for me. It let me see what was possible.

It was the year after the Berlin Wall came down. And the fall of the wall made all the difference in the world.

[picapp src=”2/b/9/7/Germany_To_Mark_6c63.jpg?adImageId=7420051&imageId=6401834″ width=”500″ height=”333″ /] It was so ironic… and so unexpected to me. I had lived in western Europe (before the wall fell) in the mid 1980’s, and if there was one virtually undisputable, unassailable “fact” of life, it was that the East and West were permanently divided. Germany would never reunite. Both sides distrusted and disliked each other far too much to ever get together again. After all, they had a wall right through the heart of their nation.

So, when I heard that the Wall was coming down, I was flabbergasted. I could hardly conceive of it. How was it possible?! It wasn’t! What was going on?! How could this be?!

I puzzled and puzzled over it for days and weeks and months… hardly able to get my head around it. But in the end, there it was — the Berlin Wall had fallen. Germany was reuniting. It was the end of an old order that had utterly failed to live up to its dread promise.

And I began to think. In the last weeks of 1989, when my life was in a shambles, and I was more keenly aware, with each passing day, how skewed my path had become… in those final weeks of that year, as I contemplated the fall of the wall, I began to seriously question the other “absolutes” of my life that I — and everyone around me treated like divinely ordained directives.

I began to think that maybe, just maybe, I could extricate myself from the bad domestic situation I was in. I began to think that maybe, just maybe, I could do more with my life than I had, up to that point. I began to think that maybe, just maybe, I did NOT have to live as a dependent on another person who controlled all the money and time and activities and told me what I should and should not do with my life.  I began to think… to believe that radical, life-transforming change was indeed possible, and I didn’t need to accept “inevitable truths” about my life.

I began to hope.

And I began to change. Over the course of 1990, I changed my activities, I changed my friends, I changed my job. I changed my living arrangement, stepping out onto cold, cold inner city streets with just a duffel bag of clothes, and heading to the home of an acquaintance who’d offered me their couch, in case I needed to step away from that life. I had seen that the Germans had done the “impossible”… the “unthinkable”… and lived to not only tell the tale, but celebrate it, as well.

I changed. First, I changed my choices, then I changed my actions. Then I changed my exoectations, and the results of these changes started to show up. It didn’t happen overnight and it wasn’t the easiest thing in the world, but I’ve never been afraid of hard work, and I knew in my heart it was bound to pay off.

And it did.

I’m presently reading The Art of Possibility by Ben and Rosamund Zander.  I tried reading it, 3-4 years ago, but I found it hard to digest. I also found some of the content somewhat academic and mildly annoying. But I think I was too focused on the idea that I had to pick up every single point they were making, and that over-attention to too many details threw me off.

Now, I’m just sort of skimming my way through, letting my eye catch different pices. I may not “get” the whole message, but it’s a lot more enjoyable, this time around. And I’m actually reading, which is a huge thing.

Thinking back over my life, there are a whole lot of years I spent living with my own version of a Berlin Wall running through my heart. Not knowing why I was doing the things I was, why I couldn’t manage to complete things I started, not understanding why I was having so many difficulties, led me to section off pieces of my life from the view of others. I screwed up so many interpersonal interactions, I failed at so many different activities, and yes, I had such a hard time, on and off, finishing reading what I’d started — and understanding what I did manage to read — that I figured the only way to keep viable in the world was to hide those parts of me away. To wall them off and not let the rest of the world in. I was a mix of bravado and intermittently crescendo’ing anxiety, and there were large parts of me that others had no idea were there. How could they know? I had walled them off, because I didn’t understand that the difficulties I was having were because of my neurology, not because of my innate nature.

Now, 20 years after the Berlin Wall came down, I am again thinking about the aspects of my life that mimicked that wall. I am thinking about the parts of me that have made me (and others) nervous for a very, very long time. And I am thinking about how to (re)incorporate them into my life. Now that I understand the true nature of my issues, I can go about addressing them. Now that I know that my most persistent difficulties are NOT a result of a flawed character or “sin”, I can approach them as logistical challenges, as learning experiences, rather than sources of shame and disgrace.

When I do this — when I take down the wall and look at what’s behind it, with an eye that is both accepting and inquisitive… and critical in the most positive sense — I transform my difficulties from burdens to teachers. In the Give Back Orlando material, they talk about how your Head Injured Moments are like gold — full of value for study and examination and learning.

When I first read that, I thought they were crazy, but now I see that the difference between my difficulties being burdens or bonuses, is how I approach them. If I stand off at a distance and keep the wall up, they become threatening and ominous… dark shadows that threaten the very fiber of my existence. But if I engage with them, if I take down the wall and let in the light of day, and I eagerly accept them as teachers, instead of dread skeletons in my closet, they become the compost that feeds the garden of my life. They’re the stuff that makes up fertile ground for future growth — and many, many abundant harvests.

As Thanksgiving approaches, I am deeply grateful for all that life has brought me. There has been plenty of pain and suffering, but there’s also been incredible joy and delight. And as I think back on the changes I went through, 20 years ago, I think about that Berlin Wall, how suddenly and unexpectedly it came down, and I think about how that sort of sudden, dramatic, positive, life-altering change can — and has — and will — take place in my own life.