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-   -   Accepting / enjoying how we are? (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/217417-accepting-enjoying.html)

Paul B 03-15-2015 07:29 AM

Accepting / enjoying how we are?
 
… in measured time, it's been a while since my head injury – 24 years, 2 months, 2 weeks to be nearly exact. It was just about half of that time – a dozen years – before I started making enough sense of the world and of people to get by, I think.

Early on I had “lost” lots in worldly ways, maybe unnecessarily. From being worldly-successful, everything was just zipped up and taken away – friends were gone too (while some pretended), understandings, settled confidence, energy – to merge together things and people and abstracts.

Then the everlasting afterwards – sorrow then anger with the losses, struggling to regain, hardships getting by day to day, emotional rollercoasting, the purposeless exhausted stagnation, plain ordinary depression, and all a whole catalogue of misunderstandings, clashes, fury, fatigue, desolation … much that's well-remembered, unfortunately, unlike the perfect starting oblivion of being in a post-accident coma....

So what does that go to show? Anything more than another trivial human's saddish setback? So that anybody could just maybe be respectfully politely silent and move on?

Yes but, or yes and …

Very eventually, I think this way – in my individual ledger of loss and gain, I've actually done great, although maybe at big cost. I think straight now, and also positively-emotionally, which doesn't impair the logic of thinking. Much more importantly, there isn't an individual ledger of loss and gain after all. It's been nearly a quarter-century and I've met lots and lots of other people now who've had massive challenges after their brain injuries, and also people really strongly allied with their loved ones' brain injuries, and finally I think I PROPERLY understand something ultra-valuable –
it finally really comes to me, each of us AS WE ARE is interesting, worthwhile, beautiful, has very much that's develop-able, enjoyable, to be experienced with, to live in the moment with, to savour, to delight in.
Part of me automatically shrinks from vague diffuse gooey “love-speak” like this sort-of seems, but the severely practical part of me points out how very much of the “losses” and setbacks of brain injury actually come out of, or are greatly enlarged by, the human-social acceptance-rejection see-sawing and judgementalism.
Maybe there's no adequate vocabulary of love, acceptance, support. They're tiny words for the biggest parts of human potential. But maybe, just maybe, there's an insight which helps us be more effectively positive for one another, lastingly. What d'you say? :icon_exclaim:

Galaxy1012 03-15-2015 10:18 AM

I agree with you completely. It's all about what we make of the situation. Either we let it strengthen us or distroy us. How severe was your brain injury ? What did the MRI show? Have you had more than one concussion ? May I know what physical symptoms you have?

Paul B 03-15-2015 11:16 AM

Thanks for replying / asking.

In the classification system, my TBI was "very severe" which usually has a basket of 3 criteria, I believe. They're Glasgow Coma Scale score at the beginning, then length of coma (though many people can have a medically prolonged coma, = "induced coma" -- to relieve intracranial pressure, which can further injure your brain squeezing itself up against the inside of your skull), and then length of post-traumatic amnesia (= how long after the TBI it takes to track anything day by day). I scored bad enough on those three.

I don't really know how my MRIs looked at the time -- presumably not good -- but a reason came up for some more MRI-ing about 2-3 years after (and I believe your brain changes a lot over time, in the immediate aftermath of TBI-ing). Those later MRI images apparently showed extensive scarring in the frontal lobes.

It seems to me (from people I've met over the years) that both the severity measures and the MRIs don't necessarily foretell "outcomes". Generally, the worse they are, the tougher things will be, but it seems like it's a loose sort of a match-up. For example or in general, some people who say they had not-so-serious injuries and have clear MRIs don't do well, while others can be the other way around. Acute measures and MRIs may be the least bad predicting tools so far, but they're not great.

My physical symptoms were VERY light. In only the early months, I was very clumsy and poorly coordinated (and I could get to feel nauseous) but that got better, (although I wouldn't have stamina). As I understand it (which of course I may not perfectly), the physical "command posts" in the brain and coordinating spots are fairly localized and discrete. Anyway, my physical signs/symptoms cleared up. ...There's another issue about perception of physical risks, plus speed-control-coordination, which we may not be good at, but the other issue would be about deciding/planning to risk-avoid, which is pretty important.

+ I had one later concussion, knocked out for some time -- I don't know for how long but probably less than an hour before I was found. I went to A & E, was able to tell them that I'd had a previous, but they did zero in testing/assessing/scanning, and I was too zonked to appeal/ask/repeat things. I think I was pretty "lucky" (how I hate that word!) with re-concussing and I got to feel ok after just a couple of weeks -- but it did certainly convince me to stay away from physically risky activities, with which I'm very content. That re-concussing was 8 years after the bigger original TBI.

Quote:

Originally Posted by Galaxy1012 (Post 1129533)
I agree with you completely. It's all about what we make of the situation. Either we let it strengthen us or distroy us. How severe was your brain injury ? What did the MRI show? Have you had more than one concussion ? May I know what physical symptoms you have?


ZooCrewGal 03-18-2015 04:53 PM

Thanks so much for what you posted because it sure made me feel better today. I'm three months out from the initial brain injury (Jan. 19-auto accident). CT scan was "unremarkable" but my life certainly hasn't been.

I have felt adrift and have no idea how well the old "noodle" will eventually recover. Humor has kept me somewhat sane. :D

Bud 03-19-2015 09:46 PM

Zoo,

I hope you get past this soon! Head injuries are weird adventures for certain...not just in Kansas!

Bud

Paul B 03-21-2015 12:04 PM

Am very glad if the previous posts made you feel better. From what you mention, (CT unremarkable after your accident but life being certainly not unremarkable), I'm guessing that you found interesting/useful the comment about TBI assessment (as in CT scanning) not necessarily matching up with how we feel and function day to day.

I'm just posting back to say emphatically that really is strongly how things are. CT-ing (and MRI scanning, which is more detailed) really is/are often a good predictive guide but it's just one type of investigation of anatomical change to brain structure, presumed to be from the injury that it follows.

As well as anatomical brain structure, important though that is, the brain functions through chemicals and electricity. The three dimensions (inter-related as they are) are what's needed for understanding brains working.

CT-ing (X rays) is used so much because it's inexpensive and fast enough to do. It's because this cheap-rapid technology is available that it gets relied upon.

There are some further electronics which display images of some thinking -- like functional MRI-ing and Positron Emission Tomography (+others) -- but they're ultramega-expensive ways to display visual evidence of neurochemical and electro-physiological activity, and even then, ultimately, they're limited in scope.

Aside from electronics, there's also the whole field of neuropsychological assessment, which is also potentially helpful but still rough-guiding. ...And neuropsychs rely on artificially-devised tests and procedures which are not in real-life situations.

Very much depends on correlations and approximations. That's arguably (just arguably) fair enough, for lack of better means in the foreseeable future, but there's harm potentially in placing all reliance on the (cheap-fast) electronics and on neuropsych, because they're really correlative guessing systems based on pattern-observations ... while on the other hand, real science and real truth come through deeper detail and with scepticism -- and it is unassailable fact that neither CT-ing nor MRI-ing (nor neuropsyh-ing) account for the realities of lives after brain injuries.

... Neurons look like tadpoles. There's the head, nucleus, and then the tail which reaches out to communicate (chemically, electrically) passing on messages/stumuli to neighbouring neurons. In a TBI, the tadpole tails get scrunched, = the tails get stretched, twisted, pulled, broken, so the messages can't get passed on at all or get garbled or get passed on indistinctly or only by long-distance relay. However, those tadpole tails being mangled doesn't show up on CT-scanning and may not be apparent on MRIs unless it's a high-power MRI machine, + concentrated area of tadpole-tail mangling, + well-interpreted MRI image.

Keep the faith! ... No, I'm not being religious, but you gotta rely on how you know you feel, not just being told that mere CT-ing shows that you're fine. There are completely mainstream scientific papers and high-level experts in the field who are unanimous about CT-scannng being very fallible and one-dimensional for structure only, and not detailed.

Mind yourself well, (and try to get others positively, cheerfully, helpfully involved too!). ;):winky:;);)


Quote:

Originally Posted by ZooCrewGal (Post 1130190)
Thanks so much for what you posted because it sure made me feel better today. I'm three months out from the initial brain injury (Jan. 19-auto accident). CT scan was "unremarkable" but my life certainly hasn't been.

I have felt adrift and have no idea how well the old "noodle" will eventually recover. Humor has kept me somewhat sane. :D



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