My Phantom Brain

Last night I was sitting up, writing in my journal about (bad) experiences I’ve had in the past that I can directly trace to complications from my TBIs. It actually does give me a great sense of relief to know that it was my brain, not my “defective character” that had such a large hand in many of the troublesome spots I got into. I had a nasty habit of falling in with ne’er-do-wells in high school and college, and I put myself in serious danger a bunch of times, because I misjudged social situations that were tailor-made to totally screw me up. My delayed information processing kept me from making on-the-spot good decisions, and my problems with attention seriously impacted the quality of information I was working with.

But knowing that TBI-related cognitive issues had a large hand in what was up with me only goes so far in comforting me. In some cases, although I may have escaped bodily harm, I’m still dealing with the scars of social “transactions” gone wrong.

Yes, I escaped being pounded to a pulp by thugs in school… But I didn’t escape being viciously bullied during elementary school, in both 5th and 7th grades, and I still have a lot of social anxiety that I have to consciously battle on a regular basis.

Yes, I escaped being waylaid and robbed by thugs while I was traveling 20-some years ago… But I still haven’t gotten over the chagrin at having wandered into bad parts of town in a country far from home… and I am still a bit insecure about going into unfamiliar areas when I’m alone.

No, I wasn’t gunned down by hunters when I took an off-the-beaten-path hike down a deer trail — without wearing bright colors — on the first day of deer hunting season… But I still can’t believe I did something that stupid, and I’m damned lucky the hunter that did spot me called out to me to let me know they were there.

Yes, I avoided getting into trouble with people who mistook my unusually intense manner for sexual interest… But I still kick myself for “giving people the wrong impression” when I was just trying to pay attention to them well enough to figure out what they were saying to me.

Needless to say, my life has not been simplified by my TBIs, and I really feel for others who are going through the same sorts of things, wondering — as I so often did — why the hell things were going so badly… again.

There are two types of problems I can trace back to my TBI experiences:

A) Fallout from the injuries themselves, for example:

  • I was thinking more slowly after I got hit on the head so I made poor choices when pressed to respond in the moment
  • I couldn’t follow what someone was saying to me, so I missed clues they were giving me, and/or
  • I was having huge issues with my temper, anger, rage, and frustration which led to me acting out in unhelpful ways
  • and so on…

B) Fallout from my inability to tell that I was having problems, to begin with, for example:

  • I didn’t realize my ability to assess risk was diminished, so I was rash and took chances that I should never have taken
  • I blamed other people for not speaking in ways I could understand, and I had huge attitude that alienated important people, like my bosses
  • I didn’t realize I was thinking more slowly, so I got involved in activities that were far beyond my capabilities and totally screwed them up
  • I thought my temper problems were because of other people’s shortcomings, and I blamed them constantly for my emotional and mental turmoil, without even suspecting the problem was really with me

Now, years later and with a whole lot more information under my belt, I can clearly see that there were plenty of times when my life was made a lot more complicated by my cluelessness about my broken brain. The lives of others were not made easier, either. It’s as though there’s something in my brain that needs to believe it’s okay, it’s fine, it’s doing quite well, thank you very much, and it doesn’t need any extra help… even when things are going really badly.

I recently read a post at the Brain Injury Help Blog that talks about brain injuries in terms of losing a limb. That’s ironic… it was exactly what I was thinking about, last night, while I was writing in my journal… how my brain has been changed irreversibly by numerous injuries, and as a result, my life is not — cannot be — will not be — the same as it could have been, had I not been injured and re-injured and re-injured yet again. That oh-so-important organ sitting between my ears has been altered in ways I can often not even guess at, only find out about in the course of my trial-and-error life. As much as I’d like to believe that neuroplasticity can restore critical functionality and enable me to function in spite of my injuries, the fact remains that my brain is broken.

What’s done is done, I know. The capabilities I once had — and I can remember so fondly — from my youth… or even only a few years ago… haunt me like 100 meter dashes haunt a sprinter who’s lost the use of their legs. Once upon a time, I was a brilliant kid with a richly promising life ahead of me. Once upon a time, I was way ahead of my peers on math and geometry, and I could memorize whole books of the Bible in the space of a few weeks. Once upon a time, I was an avid go-getter who wasn’t afraid of much at all, when it came to new adventures.

Then came the attacks… the falls… the sports concussions. Then came the confusion, the agitation, the rage, the drinking and drugs and defiance of authority. My fondest dreams stopped being crystal clear, and I unconsciously started to “down-regulate” my dreams, confused and overwhelmed and ready to believe the advice of adults who warned me away from chasing after my hopes and dreams because something was amiss with me. They couldn’t quite put their finger on it and they could never fully explain it to me, but something wasn’t quite right. And nobody knew how to help me – or even if I could be helped.

I did manage to recover, over the years, and I recouped a fair amount of my functionality – in large part because I kept clear of the mainstream and made my own way in the world, on my own terms, sticking to the margins of society and keeping my own company. But even my own private world was not safe from TBI, and the pastimes and hobbies I loved so much, even my keen ability to learn new and innovative skills and technology fell prey to more head injuries.

I used to be able to focus on my work for hours at a time without tiring. I used to be able to read for long stretches, researching, absorbing, and then constructively using new information that put me at a competitive advantage in the workplace. I used to be able to go to the beach without anxiety, to read fiction, to keep my shit together when all hell was breaking loose around me.

Then came the car accidents. And the fall down the stairs in 2004.

Now I can’t concentrate on even things that fascinate me for more than 30 minutes at a time. My ability to grasp new information has been altered completely. I know I’m lagging behind my professional peers, but I feel completely unable to reverse my backward slide. I used to be able to go to the beach, body surf, boogie board, roam up and down long sandy surfside stretches without a care in the world. I used to read fiction voraciously. And I used to be THE go-to person for the hardest jobs that demanded the toughest nerves of steel.

No more.

Now, I feel as though I’ve been cut off at the knees of the one good leg I had left after my tumultuous childhood… as though pieces of my foot, then my ankle, then portions of my shin, then my knee… have all been hacked out from under me. And while I used to be able to hobble around reasonably well, now I’m reduced to worse than a limp. On bad days, I feel as though I’m pulling myself along on my elbows. On good days, I can still tell there’s something missing. Something that used to be there, but now isn’t. Maybe I will adapt, maybe the rest of my brain will adjust. Or maybe it won’t. All I know is, I used to be able to do things that meant the world to me, and now they’re gone. Perhaps for good.

What makes matters even worse is, my brain doesn’t always know it’s having trouble, and I get myself into trouble without knowing it. I overextend myself when I’m tired, not realizing how fatigued I am and blowing up at people around me over little things. I take on too many tasks and I get turned around, make a mess of the ones I try to complete and/or completely forget about others. Like John Byler talks about in his 6-part video series on YouTube “You Look Great! Inside a Traumatic Brain Injury“, recovering from a TBI — even over the long term — is often a matter of pushing the envelope to see how well you feel and how well you can deal… only to run up against your limits and be sent back to Square One… over and over and over again.

It’s almost like I have a “phantom brain”, like some amputees have phantom limbs. My body and personal life are both accustomed to living in a certain way, and they cannot seem to adjust to a life without the capabilities I once had. My personality is invested in being able to function in important areas, and it refuses to let go of the idea that I can’t… I just can’t… keep up the way I used to, go-go-go the way I used to, interact and hold my shit the way I used to. My personality still tends to think that I’m perfectly capable of diving into things head-first and whacking my way through the underbrush with a machete, and getting where I need to go in good time.

It doesn’t seem to realize that the edge of my blade got awfully dull, several miles back in the jungle. It just keeps happily hacking away, wondering why the underbrush has gotten so much thicker over time. And why it’s taking me so long to go just a few feet at a time.

The phenomenon of phantom limb syndrome is a fascinating one — and for those who suffer from it, absolutely maddening. There can be pain, an itch, some sort of discomfort, or the constant sense that the leg or arm or foot or hand is still where it always was, going through the motions of what it once did… as though nothing had ever happened. The pain can’t be stopped. The itch can’t be scratched. The discomfort is wholly out of reach, because it doesn’t exist on the physical plane.

In a way, my own brain — though it’s still very much atop my shoulders — does the same thing on a more subtle level. It thinks that it’s still a lot more clever than it is, that my body is a lot more resilient than it is, that I have the same capabilities that I did when I was 15, 16, 24, 34, 38. And it frankly refuses to believe evidence to the contrary… until all hell breaks loose and I wind up in hot water.

Yet again.

Now,I would never presume to know what it’s like to lose a leg, or an arm, or a foot, or even a finger. All my body parts — knock wood — are still attached the same way as before, and God willing, they’ll stay that way. But deep inside the neurons and axons and dendrites of my broken brain, something is unhinged, detached, torn, sheared (or is the word “shorn?”)

And it doesn’t fully realize it. In the moment, when it’s hard at work, my brain thinks it’s 100% functional… but the proof is often lacking… and my “phantom brain” is surprised, yet again, at how easily it’s foiled. Not to mention feeling foolish that it didn’t learn its lesson last time. Learning fast and well and thoroughly used to be “my thing”.

That may no longer hold true. Along with a thousand other little things I don’t realize. Until too late.

Off in the distance, I hear the sound of laughter… haunting laughter…

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.

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