TBI Recovery – Please speak my language

There are lots of ways to say things

I had an interesting appointment with my neuropsych on Friday. I had been feeling really bad all week, and we talked about it. I was trying to figure out the physiological/neurological causes of why I had such a bad reaction to what was going on — because I believe that our “wiring” sets the stage for our actions and reactions, and I was hoping to gain more insight from someone who has specialized in studying people’s wiring.

However, I was to be disappointed. My NP seems to take the approach that psychology can explain everything — and having the right psychological approach and practice, is the way to fix everything. Well, everything that was bothering me, anyway.

It’s fine that they think this way. I agree to some extent. Additionally, I have the perspective that our bodies and our neurology really set the stage for our state of mind, and our “neuroceptive” state can practically hijack our thinking, even before we’re aware of it.

My NP does not agree. They have their perspective, and they are very invested in that perspective. I’ve suggested a number of times that there might be something else underlying my intense reactions. But they keep telling me that I’m doing a head trip on myself and I’m buying into flawed information about myself (which I developed when I was very young) and that the way out of it is to identify those flawed messages and then replace them with something else.

Yah, okay. Whatever. I don’t want to be disrespectful (because I do see their point to some extent), but I really need something more advanced and evolved than that narrow approach. Everything important doesn’t happen from the neck up – a whole lot of information and intelligence is processed in the heart, as well as in the gut. The science tells us that, loud and clear, and I’m not sure why they’re not on board with this.

So, I’m going to have to find that sort of orientation somewhere else. Like in the Polyvagal Theory, which is much more in synch with what I feel and believe. And the other scientists who are working on heart-based intelligence and gut-based intelligence.There are more and more of these folks around, nowadays, and finding their writings is getting easier and easier.

It’s disappointing, that I’m working with someone who is so invested in their own way of thinking about things, that they won’t consider anything else. And it’s frustrating for me to hear them use all their lingo and psycho-speak to describe my situation. Because it’s only part of the story. Their part. Not my part, too.

Well, people are limited, and it’s unrealistic for me to expect them to have it all together in every single respect. They have helped me a lot — and in fact some of the times they’ve helped me the most, were when they were the farthest off track, and I had to come up with my own solutions.

What bothers me, is that I know I’m not the only one who struggles with this. And it bothers me that my own NP is missing out on a whole other dimension of TBI recovery that could help them as well. They have health issues, too, which I am convinced could be helped with a broader view of what constitutes “intelligence” in our bodies, not just our minds.

But they’re so locked into their own concepts and their own language, that they’re closed off to that possibility. And so I spend yet more time hoping that they’ll be able to offer me the kind of input they’re probably never going to offer.

My bad. Gotta fix that.

The thing I have to remember in my clinical/therapeutic working relationship with this individual is that they have their own language which has been shaped by their upbringing in an urban professional household. Their parents were psychologists/psychiatrists, so there’s no great surprise that they think the skull-based brain is the answer to everything. One of the issues around their upbringing (my own was half urban, half rural, and both sides of my family come from a long line of farmers) is that it taught them to talk and think along certain terms — I read some interesting research, a while back, about how rural societies prize introverted, homogenized, self-effacing ways of relating and behaving, while urban societies prize extroverted uniqueness that draws attention to itself. And I can definitely see the difference between my own way of relating and my NP’s way of relating – they probably have no idea how deeply I disagree with their point of view in some respects, because I have not been that forthcoming about my own unique perspective. I never really learned how to have those kinds of conversations, and frankly I don’t care to learn, because they don’t appeal to me that much. I’m definitely more rural-leaning in that respect.

On the other hand, my NP seems pretty oblivious to my differences of opinion, probably in part because I don’t shout it out loud… and they seem to believe that their way of thinking about things is, well, the right way to think about things. They seem to have an awful lot of skin in that philosophical game, when it comes to these topics we’ve been talking about — what makes people do what they do, what makes us tick, what makes us well and what makes us sick  – how’s that for today’s poem? 😉 I can understand their point of view, but they don’t seem to understand mine. Or maybe because they’re the highly educated expert and I’m the TBI survivor, they consider my point of view fundamentally flawed and awaiting their remedy.

Whatever the root cause, whatever the reason, I think that my recovery has sometimes not been helped by their one-sided belief system. I need people to be able to entertain different possibilities, and explore alternative options and explanations. I need them to suspend judgment and disbelief, every now and then, not stay locked into a conceptual framework that is their comfort zone. I also need them to be willing to stretch a little bit — as I often do — to find a new and different way of approaching intractable problems that resist being solved. My life often feels like a friggin’ intractable problem that resists all attempts at solution; to approach it well, I need to get creative. And that can’t happen if only one person in the room is willing to color outside the conceptual lines.

Don’t get me wrong — I have experienced a pretty amazing transformation in the past several years, thanks in large part to my NP. But now that I’m past the most rudimentary understanding rebuilding of basic skills, I need to keep growing and learning, so my recovery can continue. That’s going to require more creative thinking, more inventive solutions. Conceptual brittleness is a problem — and I need to figure out how to work around it with my NP.

It’s a problem. What’s more, I also think that my difficulties with dealing with my NP’s biases, is not mine alone. I think there are a lot of people just like me, who don’t necessarily get the kind of care and consideration they should be getting, at both basic and complex levels — because of cultural and communication differences that experts and clinicians are not picking up. I think that one of the biggest barriers to TBI prevention and safety is lack of education. And lack of education happens because people aren’t speaking the same language. Doctors speak urban. TBI survivors speak rural. And doctors expect us to adapt to them, without them reaching out to us.

Now, I’ve been fortunate to have been raised in a family that was very focused on education. My parents both attended college, as did my aunts and uncles, cousins and siblings. It’s just what people did. Yeah, we’re all a bunch of farmers, but we’re edji-cated hayseeds, we are! 😉 As a result, I have this rural orientation overlaid with an education-oriented vocabulary, and an eagerness to learn that has stood me in good stead. I’m comfortable reading long scientific terms, even if I have no idea on God’s good earth what they mean, the first time I read them.

But what about all the other folks out there who haven’t had the same advantages as my own background? What about all the TBI survivors who aren’t comfortable with the big words, who haven’t been educated about what TBI and concussion are all about, and who struggle with dealing with doctors who have a strongly urban point of view and conversational style? What about them?

Lost in the shuffle, that’s what. Left to their own devices, to figure things out.

It’s bad enough, when I’m going through this… and I have a lot of advantages on my side. But others? Oh, it’s tough out there. Very tough.

Still and all, it wouldn’t hurt if my NP would realize the extent to which they are biased about what makes TBI recovery possible. I can keep working with them, understanding their point of view and their apparent biases. And I can keep coming up with my own conclusions in the face of their one-sided approach. I’ve been doing that, and I can keep doing it.

But every once in a while, it might be nice, if they actually spoke my our language.

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.

8 thoughts on “TBI Recovery – Please speak my language”

  1. The only reason I am alive is I finally was put in a Hyperbartic Treatment Study. Modern medicine almost killed me and the closed minds of the medical profession.

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  2. I have often felt quite agitated for some time after visiting the neuropsychologist. It doesnt instantly help, that’s for sure. Quite the opposite. Sometimes, I’ve realised, my agitation is because my brain can’t actually switch easily and flexibly to another’s point of view. It can take several months before I take it all on board and integrate it. Sometimes, after a very long time, I get that he was right. After I’ve furiously tried to prove it wrong. I don’t think they are necessarily familiar with the practical realities sometimes, you have to slowly work those out yourself by trial and error, and in the end you trust yourself on this. Their communication can be very jargon-y. I spent years trying to understand the context of where they were coming from, in order to evaluate it. In the end I read a couple of their own textbooks eg Lezak and Prigitano. This really helped me see where they were, and think about where I was in relation to that. I’d really recommend it to those who can still read with their injury. I haven’t had this myself, but it seems from what I have read, that a psychotherapist can help, and might provide what you are looking for BB. But I would say it would have to be someone who has some knowledge and experience of brain injury.

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  3. Hey Jen – I know the feeling. I have tried talking to therapists, but they often don’t understand TBI, and the ones I’ve encountered had one-track minds — whatever their specialty was, they saw everything through that lens, and they were quite limited — and limiting. I also believe that talk therapy can really hurt folks with TBI, because of the focus on stirring up emotions that have no “basis” in what’s actually going on. My own NP tends to think of emotional volatility in terms of psychological upset. I don’t think they fully understand where I’m coming from, or the extreme volatility I’ve been experiencing due to my TBIs. For all their experience, I don’t think they fully appreciate the degree to which I experience this volatility — or they attribute it to something else. I don’t plan to stop working with them – I just need to be aware of the ways in which we are not on the same page, and not expect too much from them in these areas.

    Sometimes they have turned out to be right, but sometimes not.

    It’s a mixed bag and a double-edged sword, I suppose. In the end, I really need to be as self-sufficient as possible. I don’t want to get into a situation where they start over-treating me. That would not be good. I just need to keep a fine line… and be grateful for what they do offer me.

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  4. I’m enjoying researching your blog further after stumbling upon it a few days ago. Injured or not, I LOVE the way your brain works. This months-old post I happily unearthed today shows deep insights into human behavior and the knowledge that we are ultimately in charge of our own healing….even when we have useful, albeit flawed guides along the way who help immensely. We each have our own languages and mythologies, even NPs and physicians. Now that medicine is becoming more and more collaborative (slowly? hopefully? at least we understand the concepts?) hopefully people like your NP will wake up to the two sided-ness of the healing process. I hope that you find a way to communicate YOUR reality and your insights with your NP as you’ve done here. He or she will be touched in some way when you do. And as long as you withhold it…they are in the dark as to who you truly are. Onward! Hugs from Texas.

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