PTSD/TBI Factor #5 – Threat of Dying

This is a continuation of the discussion about PTSD from TBI – Exploring some possibilities.

Obviously, the threat of dying is going to stress your system. But even more significant than the actual threat, is the perception of the threat. Belleruth Naparstek makes this point in Invisible Heroes (pp. 50-51), in particular about heart attack survivors. What makes people more likely to develop post-traumatic stress after their heart attack is not how bad it was, but how bad they perceived it to be.

This is particularly important for TBI survivors, especially mTBI (including concussion) survivors, who may have their thinking turned around — and on top of it have a hyper-active fight-flight response. Like I discussed in the last post about betrayal, you can jump to conclusions pretty quickly about situations, and your thinking can be completely wrong. But you have no idea, because your brain has been rearranged a bit.

And that just makes things worse. Because underneath it all you can have this nagging feeling that you’re missing something, and that just adds to the sense of stress and pressure. On some level, even the most minor threats can seem life-threatening. And you can become completely convinced you are in extreme danger, because you’re getting cues and clues that tell your body and your brain that you are going to die.

I believe this happens on a neurological level (or as some would say – “neuroceptively” – or the level at which your nervous system perceives things and interprets the data it gets). I also believe this amplified “death threat” interpretation happens as a result of our body-brain feedback loop, which is compromised in TBI, both in terms of our brains being less able to decipher information, and our bodies being hyper-tweaked and on hyper-alert and over-reacting to just about everything that comes along. Over thousands upon thousands of years, the human brain has learned how to interpret signals from the body that tell it that the environment is not safe, and then our brains (not our minds) kick into action and send out signals to respond. The more extreme the signals (and with a haywire autonomic nervous system, that’s what you can get), the more extreme the response we muster. And with our brains already being on alert from having to work harder to just do normal things, we’re already primed to overdo it on the reaction front. And when our over-zealous reactions send out waves in the world around us, the people we look to for support and feedback can retreat, leaving us alone to work things through — and that adds more stress, which in turn sends danger signals to our bodies and brains, which interpret them as threats to our lives.

And indeed they may be.

So we end up in a cycle of escalating worry and isolation, and all the while there’s this ever-present threat of extreme isolation — which can feel like the equivalent of death.

I really believe that this phenomenon is particularly true of mild traumatic brain injury or concussion, which “doesn’t look that bad” to most folks, and which all too often results in isolation and increasing dysfunction over the years. Having a “mild” head injury kind of disqualifies you for any sort of compassion or accommodation. After all, you should be able to get back to normal, right? You just hit your head… you didn’t crack it open or end up in a coma or anything like that. So, what’s the problem?

The problem is, some of our most fundamental characteristics (and coping mechanisms) have changed, and we can no longer rely on them. In some ways, part of us dies — or morphs into someone or something we don’t recognize or fully understand. And we lose a sense of ourselves and our connection with life as we once knew it — which on a fundamental, basic level, is the equivalent of a death threat.

Mild TBI is anything but mild, if you feel like parts of yourself have died or are dying off, and there’s not a damned thing you can do about it. Especially if you don’t realize what’s happening.

It’s this behind-the-scenes, unarticulated, unexpected, all-but-invisible quality of the life-threat that makes it so pernicious. Our bodies and our brains are getting all these signals about being in danger, and we become increasingly paranoid and antsy and, well, driven to survive.

Meanwhile, the stress is building up with nowhere to go, because half the time we don’t even realize it’s there. Or we depend on it for our energy source.

Ironic, isn’t it, that we use a life threat as a lifeline? I know I do… and I’m sure I’m not the only one.

Bottom line is, with TBI, especially mild TBI, the important thing isn’t whether or not you’re really in danger, but whether you (your body and your mind) think you are.

Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

5 thoughts on “PTSD/TBI Factor #5 – Threat of Dying”

  1. Indeed, the injury and ongoing aftershocks are anything but mild. They did, however, get the traumatic part right. I have often wondered what statistics would show as cause of death for mTBIers. My inkling is literally and figuratively heart disease/attacks because everything around us is like quicksand and working harder used to work pre-injury.

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  2. I’ll second that. I’ve been reading a study on long-term survival rates for TBI survivors, and according to their findings, “persons who experience mild TBI exhibit a small but statistically significant reduction in long-term survival compared to the general population.” I don’t think they say anything about the cause of death, just that with TBI the life expectancy of the folks they studied in Minnesota was shorter than the general population.

    Great… I’m not sure that researchers are actually looking at causes of death — but I’m sure they would find what you and I both believe — that cardiac conditions would be up there in the list. I think also diabetes would factor in, because it’s related to blood glucose issues, and a lifetime of roller-coaster living issues can (and will) produce blood sugar problems.

    There’s much to learn. And there’s also much we can do about these things. But we have to know about them before we can do something.

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  3. That is interesting about life expectancy, I’d also have to wonder about Alzheimer’s and Dementia since we’re at higher risk post-injury. I would love to see research track our population and see how many of us have heart issues, develop cancer, etc. I completely agree with diabetes too, yes, the TBI roller coaster, and, more often than not our population lives below the poverty level with no health care whatsoever.

    We’re all pioneers on this journey. Personally I would love to find clinical trials or research specifically for multiple TBI survivors, I’d love to be able to put my experience to good use to benefit others joining us on this path.

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  4. That makes two of us. At this point, it seems like the bulk of the (publicly useful) research regarding multiple TBIs is focused on sports concussions. After all, a whole lot of parents have concerns about their kids being disabled later in life, and there’s a lot of press coverage of the NFL players’ lawsuit(s) against their employer. My main concern with this research, is it’s so sensational — it seems to really focus on the CTE (chronic traumatic encephalopathy) dangers and issues, effectively consigning all of us multiple TBI survivors to a supposed fate of punch-drunkenness and early dementia, Alzheimer’s etc. That’s unfortunate because, while it does up the ante and it does get lawmakers’ attention, it comes at the cost of discussing reasonable approaches to managing the after-effects of TBI and getting your life back after the fact. And that’s a real problem for me. When the lawyers get involved, there’s less incentive for folks to find their own way to cope and adapt, and I personally believe that this essentially forces people to stay incapacitated (or at least look that way) for as long as the case lasts. If it drags on with delays and appeals and counter-suits, then we’ve got a whole population of former NFL players (and others) who may be delaying or preventing the development of adequate coping and adaptation mechanisms, for the sake of the payout, which — I’m sorry — will never be able to compensate them for what they’ve lost. You just can’t put a price on the abilities and quality of life that go out the window when you’re stuck in that post-TBI swamp.

    Of course, things have to be boiled down as simply as possible for the sake of the case and for the sake of publicity. There’s not much room for complex discussion or alternative approaches, when it comes to the courts. If the NFL players — and others who are awaiting pending TBI-related lawsuits — get better, then it might compromise their case. But if they don’t take advantage of every opportunity to recover, then they may miss an important window and end up damaging themselves even more in the long-term.

    Awareness of TBI and the issues involved, as well as information about how to constructively approach recovery, are what’s desperately needed.

    So, back to your original comment — yes, we really need research that tracks the population. You could “crowd-source” it with a social app that people log into on a regular basis in the course of their daily lives, but then you get into problems of data quality and reliability of the study. One way someone might approach this is the same way they approached the nuns in Mankato for the long-term study on aging that’s featured in the book “Aging with Grace” which discusses how this group of nuns routinely out-lives the surrounding population by many years. It’s a fascinating book – check it out at your local library, or pick up a copy you can mark up. There’s one section that talks about Sister Bernadette, who was lucid and performed extremely well till the very end of her life. And when they autopsied her brain, they found really advanced stage Alzheimers — without any that being reflect in her test scores and her general life quality.

    It gives one something to think about.

    Personally, I think this could be an extremely tasty long-term study — start now and follow us all through the next 50 years to see how we fare… and find out what we do along the way that actually works to help us get/keep our act in order.

    Will there be funding? Will there be the will to do it? Who can say. But I’m quite sure it would benefit many, many people — to the tune of 1.7 million folks each year in the US who sustain brain injuries, not to mention everyone who’s affected by their injuries.

    I’m not sure where to look for folks like this. Maybe start with the Brain Injury Research Institute (who are focused on sports concussions — and more — and who are not funded by the NFL), and ask around? Let me know if you find anything. I might sign up myself, although the lack of medical records could be an issue…

    Anyway, have a great day. And thanks for writing.

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  5. Thanks so much for your reply, your critical thinking skills, ability to gather information and write so well – awesome! I’m not nearly as skilled in keeping details together. Finding the skills that remain post-injury can be like a vibrant rainbow in the midst of a long, dark storm.

    I will definitely have to think about who may be interested in following our paths as we age. I agree completely, this would benefit countless others worldwide.

    Oh gosh, yes, the length of litigation and that window of opportunity for healing occupy the same space and time. I know for me I ran out of auto accident insurance only months after starting rehab and then I was booted out of the nest like a baby bird not even out of its shell.

    Thanks for sharing about the Nuns in Mankato, that sounds intriguing to say the least. I’ll have to see if it’s available via inter-library loan, our library is about the size of conference rooms I’m used to seeing at libraries where I grew up!

    I’m the same way if I talk too much about the difficulties of TBI, the losses, PTSD, etc for too long I begin to go down that strenuous road that leads to nowhere. We’re still here trying to function to the best of our ability, help others, and maybe, just maybe, somewhere along the line be able to enjoy life again.

    If we can’t overcome it, we can adapt to it, but quitting is never an option. Have a good workout!

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