I’m taking a break today from my usual routine. I had a mixed day, yesterday, which started out excellent after my good evening on Friday. Saturday morning, I went to the chiro, ran some errands, and then headed home for a nap. All good.
It got hot, though, and that puts my spouse on edge – big time. We both have a bunch of things we’ve got going on, and not nearly enough time to take care of it all. Or so it seems. After I woke up from my nap, we had a bit of fireworks, as we were both feeling pressured and inadequate and totally behind the 8-ball.
Basically, what went down was that my spouse had some things they needed to get done. They had not planned well with their time (even though they knew that they needed to take care of these things — and they’ve known they had a deadline for weeks, now, but they waited till the last minute to do anything), and they suddenly wanted me to go out and run all sorts of errands for them, to pick up the slack.
My spouse has a lot of anxiety issues, and it’s quite soothing for them, when they get to boss me around. It’s kind of funny, actually. I can tell when they’re feeling antsy and insecure, because they give me a long list of things to do, and they complain constantly. But when they come up with all these things I “have” to do and they send me out to do them, they feel so much better. They also like getting me out of the house so they have the place to themself.
Yesterday, they were really nervous, so they came up with this long list of items they wanted me to take care of. I, however, had my whole afternoon planned out, to take care of some work things I need to finish up. I didn’t have time to go on an extended shopping trip. Besides, I’d already bought a bunch of things, earlier that day when I was out and about. I said “No, I’m not going shopping.”
Well, when I refused, you’d think the earth had shifted off its axis and everything was sliding into the oily Gulf of Mexico. I got my head chewed off, big-time. But you know what? I wasn’t going to take it, yesterday. So, I chewed back. I didn’t just tuck my tail between my legs and slink away, when they got nasty and obnoxious and started in with “that tone” that sounded like they considered me a form of life lower than slime, and who was I to question their infinitely wise judgment?
Okay, so you wanna play that way? Let’s throw down, then.
And I did. I stood my ground and didn’t just quit and leave. I said my piece and didn’t let them just run roughshod all over me. Throughout our relationship, my spouse has often talked to me like I was an idiot — like countless people have over the course of my life, and my parents did before everyone else. Same old same old. And I’m sick of it.
So, I told them that I was sick of them treating me like I’m brain damaged and saying that because I behaved one way in the past, that’s how I’m always going to behave. I told them I’m tired of feeling like I don’t exist in this marriage, that I’m tired of just taking orders from them and being treated like crap if I don’t just hop-to and do their every bidding. All the while they were looking at me like they hated my guts and they were completely disgusted that I had anything to say at all.
But I said my piece. I felt like a miserable little piece of you-know-what while I was doing it, but I did it anyway. I didn’t let them dismiss me, and I didn’t let them run the entire conversation. The whole experience felt… well, wrong… but I knew in my heart that it was right for me to stand up for myself. It was just an unfamiliar situation, with me using new skills that aren’t second-nature to me (yet), and that unfamiliarity was what was making me feel terrible.
Of course, the fireworks weren’t the worst thing. The worst thing was the aftermath, when I proceeded to beat myself up for losing it. But in retrospect, some of the things that pushed me over the edge are “old stuff” from years gone by, when I would capitulate to every single demand, not ask any questions, just do as I was told. And it’s understandable that I would have a bad reaction to them.
Since I started out on my active mTBI recovery, the road has been a bit rocky. Understand, for years — decades, even — I was compliant and agreeable and went along with pretty much what anybody said. That was especially true of people who I thought cared about me. I trusted their judgment and their ideas more than my own — after all, if left to my own designs, I often got things completely screwed up. And I was game for just about anything that someone else suggested I should do — even things that I instinctively questioned.
I just gave in. Went along. Didn’t make a fuss when people called me names or talked to me like I was an idiot. My spouse has done that quite a bit over the course of our marriage. They would just flip out on me when I wasn’t following what they were saying, or if I messed things up, I was “pathetic” or “stupid”. I never spoke up in my own defense because I pretty much agreed with them. In fact, if anything, I had an even lower opinion of myself than they did.
But over the past few years, as I’ve learned about the true nature of my issues and how to deal with them, I’ve been less able to tolerate nasty behavior towards me. I’ve stopped just shutting down and blocking off unkind words as though they didn’t matter. Words do matter.
And over time, they take a toll. I never gave much thought to how people have treated me, until about three years ago. I just took it in stride as one of those things that makes life more challenging. I never wanted to let on that all the bad treatment was affecting me in any way, shape or form. But the truth is, it has — and not for the better. Indeed, the most hurtful thing for me yesterday wasn’t my spouse’s tone or the words or the general sense of being attacked. Yesterday, one of the things that made the fireworks so uncomfortable for me, was my thinking that I didn’t have a right to defend myself.
For anyone reading this who lives with or deals with a traumatic brain injury survivor, rest assured, although it might not look like we “get” the mean things you’re saying to/about us, we actually do. It might take a while to sink in, and we might not be able to defend ourselves in the moment, but there’s still no excuse for verbal abuse.
No matter who/what the target of your attack is, it’s still an attack. And it can be very hurtful.
The last part of yesterday was pretty rough for me. I felt terrible, really “hungover” from the emotional outburst, and I didn’t get anything done that I’d been planning to do. I felt terrible about missing the cues in my spouse’s tone and words that were setting me off. I felt awful about having stood my ground — crazy as it might seem. And I felt like I’d been the bad person. I also regretted some of the things I said, which were hurtful and just slipped out. Derailed. I hate that.
But when all was said and done, after I got another full night’s rest and spent some time meditating this morning, I got a lot more clear.
Basically, what I’ve realized is that the terrible feeling I get from these kinds of fireworks is more physiological than mental or emotional. I feel physically ill from the biochemical cascade of the stress hormones that flood my system when I’m on high alert like I was yesterday. I was really on high alert. Freaked out. Flipped out. Anxious. Angry. Assertive in unfamiliar ways. And yes, a little aggressive at times. My body bears the brunt of the experience, and the feeling I have after the fact is a biochemical one — it’s not actually a mental or emotional state. It’s a physical state. I realize this now.
It’s important that I realize this, because last night I didn’t. I let my body get the better of my brain, with me thinking that the bad feeling I had was an emotional one, or a mental one. I thought about that feeling in terms of coming from my broken brain – that I was having it because there was something wrong with me. But the fact of the matter is, I was having that bad feeling because my body was doing its job (protecting me from the “threat” to my schedule of yet more things to do and the attack from my spouse, when my time was already limited), but it was doing it a little too enthusiastically.
In fairness to my spouse, they’ve had some neurological issues, themself, and they were also not fully awake after their extended lie-in. They were on edge, under pressure, and feeling boxed in by life in general. It doesn’t excuse their behavior, but at the end of the day they realized their part in things and they promised they were going to look at that and do better in the future.
So, there’s progress. I do believe them. There’s a lot of love between us, and we’ve been together for almost 20 years. Neither of us is going anywhere. We just need to work through this and not give up. We’ve been through worse.
And I need to cut myself a break, when I stand up for myself. It’s unfamiliar to me, and unfamiliar things make me uncomfortable and start that fight-flight biochemical cascade. It’s not a defect of my personality or character. It’s my body doing its job — and sometimes overdoing it.
In the end, what is really needed is just open communication and openness to the situations of others. To understand where they are coming from, and take the time to step back and be gentle with one another. To not let my sympathetic nervous system take over when things get a little dicey. Life is full of pressures for both of us, these days. We have some pretty significant money issues, and I’m starting a new job shortly. We have logistical issues, as my spouse expands their business and takes on new clients. We just have a lot going on, and we have to (re)learn how to let each other BE. Especially when things are heating up.
The last thing either of us wants to do, is tear each other to shreds, just because we’re tired and have a bunch of things we need to get done. It’s important to be bigger than that.
Broken Brain - Brilliant Mind 
BB-
I have learned a long time ago that each of us does in their own way; the words one uses or the concepts don’t necessarily mean much if ultimately you get where you need and want to be going. Though words CAN be important and powerful (and as a wordsmith yourself you can surely appreciate that) the ultimate lesson is to understand that words carry weight mostly for the meanings we attach to them – and those meanings are all individual. Recovery or rebuild are semantic concepts – I have been around in the rehab world long enough now to appreciate that there are many interpretations of recovery and many ideas on the best attitude to have, the best way to approach post-tbi life. Some feel too narrow for me, too limiting, others seem to overpromise, leading to unrealistic expectations that only disappoint or worse waste energy and effort.
In the end there are innumerable circumstances which can influence outcomes and perspective ranging from ones temperament to type of injury, from ones economic status to gender and age. When my 96 year old grandparent broke their hip and refused to learn how to walk again I couldn’t understand it – immobility meant dependency, meant cognitive decline – but I wasn’t 96 after a lifetime of hard labors and no living peers. The experience of the physical pain of asking a hip to regain mobility is quite different for a 26 years old than for a 96 year old – even if the process is the same. It’s taken a while for me to understand that and appreciate how she made her choice.
Similarly I was once involved in hospice and folks there talked about dying a good death, one without resistance and struggle – with peace and calm. But when a friend of mine was dying they said ‘ no way will I go gently unto the night – I want every last second of life I can absorb.’ Which was better? And better for whom? I, for one , do not know how to answer these questions – certainly not for others and perhaps not even for myself. Such decisions on how to view ones life are not absolutes.
There is a fine line between hope and reality, between determination and acceptance in major illness and trauma – and this is especially so when it comes to brain injuries. The least understood – and most personal and individual – facility we have is our neurological one. It is difficult to find the ‘best approach’ to counsel or guide family, friends, social services, clinicians and especially the survivors themselves in the realm of how to heal a brain, to recover cognitive function.
The struggle between embracing what you are and the desire to be something else isn’t limited to tbi – among the deaf community there is a lot of controversy about whether one should pursue hearing aids or cochlear implants or even try to learn lip reading and speech because sign language works so well, is so rich and powerful. In the TBI world there is even less concurrence of ‘best practices’. As I mentioned before the models that exist are based on severe TBI, usually occurring from a single incident with the preponderance o victims being younger males, often with a history of reckless behavior. While this has changed somewhat in the past few years ,and we now have military models as well (which presents another set of specific characteristics that may or may not apply to the public at large) we still do not have a good picture of best practices for the vast range of TBI based injuries and outcomes. The NYTimes has an article on severely handicapped students, including those who suffered TBI’s as infants. The article clearly demonstrates that we know so little (as a side note it also illustrates how little economic resource we put into this). But if the models we have are barely adequate for this demographic they are even less adequate for the growing numbers of those who do not fit these traditional categories; the mid-aged adult who has experienced multiple blows to head via sports or minor accident or the person with a single significant blow that leaves scattered but lasting damage with no other obvious impairments. Most treatment goals are about getting a person to ‘self-sufficiency’- which is then considered recovered. Thus, by the definition of the majority of health care plans, many legal statutes and other standards of care you, and I, ARE, well, whole, recovered, ‘cured’ – regardless of any outstanding issues we may struggle with.
At the heart of post- TBI life is, I believe, the need to have a clear sense of ‘self’. When I say something like that however most of the actuaries and legislators roll their eyes at such a metaphysical concept. When I say self what I mean is that the person has an integrated, holistic internalized perceptual framework that allows them to smoothly and effectively interact with their environment at all times –not only to have relationships, perform work and to function within the norms of their community but even more to feel within themselves a unity of self, to know themselves (self-predictive behavior) ,to act consistently and willfully, and equally, within reason, effect change in their behavior. That they can know that their perceptions are accurate and valid, that their responses are acceptable and appropriate.
It is no surprise that this sound suspiciously like a mental health (psychological) definition – which explains why TBI and psychological health are often treated as one and the same. Although they are not they do manifest themselves in similar ways. Our sense of self is tied up in our cognitive, sensory, emotional, and physical status. The athletes world view is different from the nerdy geek, those who were raised in emotionally volatile environments may have different worldviews from those who were raised in calm and peaceful homes. Individuals who grow up in poverty and who lack exposure to mental stimulation may be less cognitively complex or venturesome than those who see the use of cognition as pleasurable and exciting. Patterns are laid down and those patterns inform us, define self. Sensitivity to sound, memory, ability to handle multiple lines of thought at once, levels of energy – all these things will direct ones sense of self by establishing patterns of interaction with the world. Those patterns will then in turn inform how we function, the environments we choose – which will then shape us further. TBI asks that we create new patterns, and sometimes that is difficult and leads to a fractured sense of self.
The metaphysical question of ‘who am I?’ and the desire to be ourselves, wholly and fully, bursts forth as teens and may raise its hoary head again in a midlife or after a life crisis – but for the TBI survivor the search for self is more than a philosophical question – it is a profound place that we long for. Two of the frequent struggles of TBI survivors is are a persistent desire to ‘have their old brain back’ – to be who they were, a self they knew, and the other is to prove that they can be who they were – or at least, as good as they were and as good as anyone else. These desires can be maddening; the faint taste of a familiar soul in our heads, the ease with which we fall back into patterns and behaviors that seem so instinctive (only to miss something). And, afterall, it is a quality of positive mental health to act from within, to be ‘true to ourselves’. This desire to simply ‘be’ makes it hard to be ever-vigilant with the self we are now and so we go round and round, wanting the comfort of living unintentionally and then recognizing both the need and the value of living with intention, even hyper vigilance.
I should note that the self-vigilance brought on by TBI is not quite the same as the mindfulness of Buddhist practices – though there is overlap. Perhaps because of this mindful meditation has a valuable role for TBI survivors – but that is another essay.
Wanting our old brain back and proving that we are who we once were are fine edges to walk. One neuropsych I knew told me the happiest TBI survivors he knew were the ones who let go of their old selves – but I am not sure I agreed with what I think he was saying – and I still don’t quite buy into that notion. Furthermore it struck me as impossible; to understand the changes and address them I had to know what was different , so I HAD to pay attention to old self and old habits.
Furthermore, I am still, for the most part, who I was and there is no letting go of that. However I also know that, at least for me, it is difficult to consider going back to who I was because injury has changed not simply my brain but my life, the circumstances, the perspective. Those changes are not all directly due to injury – but they are certainly all informed by the injury. Along the process of rebuilding me cognitively other factors came into play – intertwined with the injury – be it others reactions or my own – these factors have also influenced things so that at this point my life bears little resemblance to what it was. And oddly, in many ways, I am glad of that.
But my thoughts have indeed changed; the feeling of them, the way they work and my awareness of my thinking – is this because the accident changed them or because the circumstances of life changed me? Is it that before I never had to pay attention to my thinking and now I do so excessively? I tend to believe that some of the difference came about because as I rebuilt brain I was doing it under different circumstance than when I first ‘built’ my brain (growing up) – and so what I think and how I think are ever so slightly different now. I cannot undo this; it has been like living in a very foreign country for a long time, I have a different cultural perspective these days. But different isn’t necessarily less than or incapable – its just different. If you live in Paris a year and take to eating escargot are you less an American when you move back to Biloxi and still do this?
At the same time I know that there are changed habits, behaviors, responses, patterns – whatever you want to call them, that are indeed directly tied to my injury – be it more forgetfulness, a harder time to focus, a tendency to ramble, an inability to remember faces, a loss of sense of direction. These may have been minor habits before and are now more pronounced, they may be completely new or they may be the result of damage to my environmental feedback mechanisms so I don’t self-correct. If I don’t recognize the environmental clues for rambling too much I don’t reign myself in. Managing my way through these subtle changes is tricky – I must acknowledge these changes to address them, so I must be aware of how I am acting and how it may be different from the past me. However if I want to recover – emotionally as well as cognitively – I cannot compare now to what was and say I want to return to the previous state – in fact I cannot even always say that the previous state was ideal. Perhaps my ability to keep many things in my head in the past was a bad habit but one that I was able to slide by with. It was bad because I never developed good external organizational skills like many of the folks I know (who never had a tbi). In the past I rarely used a day planner outside of work, I didn’t need a ‘system’ to get through my day, I could organize and re-organize thoughts in my head without any effort at all – (at least that is what I believed). And so now I resist certain compensatory tools – not because I don’t give value to them – but because they aren’t part of my normal repertoire.
What strikes me most about my previous self was the certainty I had (without knowing it) of my abilities; I knew exactly what I needed to do to handle a situation, I knew when I did need to write something down, how much time I needed to skim a report before a meeting, I knew I could handle myself appropriately with the CEO and the housekeeping staff. I could rely on certain skills to carry me through. Even if I had ‘weaknesses’ I was not in the habit of quantifying my cognitive abilities, and so, for example, whatever degree of forgetfulness I displayed I either accepted or worked around – it was me and I was fine with that since I wasn’t measuring myself. But now I have this heightened awareness of cognitive (and behavioral and physical) functioning – so every memory failure represents t o me a cognitive glitch, a problem that I must attuned to – it can never just be ‘I forgot’. All of which makes me feel less like me and more like I am less than a previous self. I want sometimes the pleasure of just being average, of accepting forgetfulness as part of everyone’s life in these busy time. Yet I cannot ignore the fact that memory is spottier than it used to be and so I must take greater care.
I have never been the queen of organization; I lived a life without p-touch labeled file folders, I had a day planner which I used for work but rarely for home, my fridge often had outdated stuff, my cans were NOT alphabetized and my to do lists were random sticky notes in the bottom of my purse. But this didn’t matter because I was able to keep track of most of it in my head – I LIKED keeping track of it in my head. But now I can’t and so I have to learn two skills – how to keep and live in an organized environment and how to recover/rebuild this functionality, as best I can, in my head. I struggle with both.
Because of this I focus on removing the label from the scenario without ignoring the patterns. To me that is the hardest skills of all – to recognize and know that I must be more careful to remember little things because I do not have a good habit of memory – yet not feel like I have a memory problem which in turn makes me feel defective, incapable or presents poorly. At the same time – while acknowledging memory deficits and adapting to compensatory measures I must also work to rebuild the habit of a better memory while not judging myself as less than a previous self – and that means allowing myself room to fail – just as we did when we were first building our brains and practicing memory drills in school. What a balancing act – and of course it is not simply memory but any number of cerebral functions; from sensory to emotional, from cognitive to perceptual
Cognitive skill is often a question of habit –and so you are correct, given enough hours of repetitive drill and behavioral reinforcement we can probably learn to do many amazing things, injury or not. . Yet there are a few ifs, ands and buts. First – it will take longer if you are older and have more damage – and of course it will depend on where the damage is. Secondly certain skills – such as physical abilities – are probably easier to recover than evolutionarily more recent skills such as multi-tasking. Age plays against us – our brains do things cognitively as we get older – they become more efficient (shorter routes to reach resolution, many existing automatic thought patterns , but also fewer connections, a steeper learning curve, harder to generate new neurons etc. It may also be that the various brain maps for thought which can take over for ‘lost’ areas means that parts of my brain do double duty – and are therefore a little slower, reducing processing speed. . I can do only so much and so I must decide what matters, what do I want to address and what is not significant. There simply ain’t no such thing as a free lunch.
Unfortunately too appearance plays into this as well; if you are younger and more attractive you will be perceived in a better light. A heavier person with a noticeable limp and grey hair will be more frequently cited for memory problems than the younger counterpart. The feedback becomes part of the story; the more disabled people perceive you the more disabled you feel. This is a big issue I think for caregivers who tend to treat TBI survivors in simplistic and patronizing ways – even with good intention. In general too society expects you, as a mature adult to perform to a certain level – and cognitive glitches or misbehaviors are viewed as intentional or signs of lacking, not as skills that you are developing.
Like you I do not believe that my life needs to be viewed as less than. Yet what is perhaps the biggest difference between now and then for me is that now, when I forget something, make a gaffe it is not simply a mistake; it represents something greater. Before, if I had done the same thing, it was just a mistake – it was not an indication of anything wrong; I was not forever looking back over my shoulder at the image of myself that I wanted to uphold and return to – I was looking forward towards how to improve and learn. In the past I did not incessantly have to examine my day to day functioning for brain injury moments, I just lived – and what a great freedom that was. And perhaps I will again get to the point where I can just live again, I can not feel every faux pas is a neural disconnect, a sign of what I have lost or must still regain. And perhaps even more when I get to that acceptance I will be truly whole again, not chasing my old brain but celebrating this new one.
This uncertainty actually makes it harder to improve. These days when a situation comes up – at work, with friends, I wonder – is it me or them, is cultural (different part of the country) or is it age or gender (and that’s a big difference too these days), is my defensive ego getting in the way and making this bigger than it is or is this a red flag that says I have to REALLY work on this or I will shoot myself in the foot, is this because of emotional stresses, lack of planning, fatigue – and would anyone in my shoes do the same, or is this a tbi scenario and a lesson about a restructured brain that I need to learn.
As I mentioned to you I made a faux pas with an exec at work and word got back to me – nicely but how embarrassing and unsettling. Then a week later I found myself irked by a colleague, but fearful that it was me again I said nothing. Later in talking to someone I discovered that this person has a known problem interacting with others – and so this time it was them. My world is tentative now – I cannot comfortably think, I am right, I am okay, I am justified in doing this, sayng this, thinking this, acting this way. But I am not always wrong either.
The changes, are so very very subtle. No one likes to begin an unpleasant or boring task – but I think I struggle harder with initiation than the average bear. Is this injury or because I am out of practice with a daily routine and demands? Or maybe I HAVE gotten undisciplined and lazy mentally? What can I do to improve it? There isn’t a lot of room for trial and error ; I know I am replaceable, the employment market is still tight and folks in my category are a dime a dozen and 15 years younger than I. But the pressure of that makes it worse; knowing how potentially serious a mistake can be makes me more stressed and more likely to make a mistake, and more sensitive to everything I do (and less focused on doing it). We all makes mistakes, we all worry about our career positions – only other folks don’t get stuck ruminating, they aren’t double checking their cognitive functions, measuring their cognitive quality of life, they have nothing to prove – they are who they are.
For me to see what I do as rebuilding is emotionally and psychologically a more grounded way to look at the changes – it keeps me facing forward, it makes mistakes learning experiences and not failures, it helps me feel empowered to make choices about how I want to be and what I want to focus on. I have noticed that when people die we tend to mytholoize them – and likewise it is easy for m to mythologize my old brain self – to think of my old self as fluid and attuned and fast and facile. My old self – it seemed – was socially sophisticated in any situation, able to get down to the task and plow through it, able to grasp information and retain it quickly. At least that’s the me I remembered – but somewhere along the way I realized I had to stop chasing that person down , because whoever they were I don’t know that they were any happier or had any greater quality of life than this me – and I don’t even know if they are a myth I made up. At times, oddly, this me, even feels , well, smarter – able to understand things better, deeper and of more complex nature – perhaps because I taught myself how to work my way through convoluted material or perhaps because I have lost so much that I am freer to speak up.
There are so many things that can be frustrations; how do you honestly self-assess without feeling like you are a broken damaged vessel or without deceiving yourself as to cause and effect? Am I restless because I am bored or because I have attention issues? Should I go for a run or just ‘buckle down’ and do what I have to do? Initiation is a real challenge; even for pleasurable things. Is this a matter of practice or is there cellular damage at some level. I try to set time frames for activities but I am slow to get started and then, once I am enmeshed in the task reluctant to let go and move on to something else when I am finally making progress. Many other folks my age have had continuous careers and so now they are able to have fluidity in their jobs, no learning curves on the basics – they too may feel a yen to go out and play, but they can, they have nothing to make up, they earned the privilege of this freedom. I earned it too – but I also lost it in an instant and so sometimes I am angry that I have to start again, from ground zero – making less today than I did 25 years ago. Answering to people who were learning to walk when I was supporting a family (oh boy do I sound like a geezer!).
The world does not accommodate cognitive mistakes, least not in a mature worker with a serious resume. How do I explain drifting attention at a job? Do I excuse myself and go for a walk? Sneak into the bathroom to meditate? I am not a 21 year old who doesn’t know better. How much easier it would be if I had a fainting disorder; people would have sympathy for my spells, allow me to briefly lie down and recover, think admirably of me for persisting in my effort to work. Or perhaps that is my imagination – perhaps the world really doesn’t like to accommodate any kind of imperfection.
It is simply not possible for me to disregard the realities of my changes; I must always be aware; am I talking too much? Saying something that is irrelevant to the conversation (off topic?), am I being circuitous? Asking too many questions? Have I listened, REALLY listened to what the other person has said or is my attention wandering? I need to remind myself; write things down, make note of appointments, give myself extra time for getting lost (or confused). I must gGet plenty of rest (lack of rest makes it easier to get confused) which means there is less time to do things – and so I must accept that my home will be messy or laundry or bills will pile up. Did I repeat myself, ask the same thing over and over? Did I miss the obvious? It doesn’t end, I can never be really certain that I KNOW what I am like anymore; too many times now I have believed I was in charge, capable, okay and I missed the cues and got blindsided. And when I do make a mistake I must avoid rumination and self abasement, I must accept myself with grace and kindness and love.
I am under paid and over qualified for my current job – but it pays enough and its professional and provides benefits. It demands organizational skills – skills that might not have been my forte before my accident and are certainly not by best now. I meet a lot of new people all the time – but I have a very difficult time putting remembering faces now. On one hand I know that I am very capable, that I have many skills but I am so easily unnerved, so unable to just breathe. It’s easy to fall back into the habits of my lifetime, habits that served me well – when I didn’t need to repeat names and identifying characteristics to myself to remember someone, when I didn’t need to write things down the minute I heard them, or didn’t need to be vigilant about what I said or how I reacted – when I trusted my intuitive sense of a situation and it almost never led me wrong. Not so today.
And all this can easily lead to depression – to a sense of hopelessness. The irony of post TBI life is that many individuals have lost so much, had so many setbacks that they have MORE to struggle with in day to day circumstances than other folks – and they have fewer resources available to them. I get irked with myself – why can’t I just DO IT. I get overwhelmed by the mountains of problems I must address – will it ever be normal again? While I was working on recovering the ability to organize a closet the world just kept marching on, raising the bar of expectations – and now I have fallen behind. Our world is designed to accommodate those with cars, houses, credit lines, 401k’s, and access to legal and health. If you get derailed it all collapses like a house of cards – and it is impossible to explain reasonably why or how. Perhaps if I had cancer or some other physical ailment I could speak of it (or perhaps not, we are an unforgiving society) but TBI? Fuhgedaboutit.
And in truth no one would know from interacting with me. Both my appearnance and my personality are reasonably compelling, I am very intelligent, articulate, present well – people will listen to me when I speak because of these things, because I have the aura of someone who has spent years among high level executives, smart and talented people; I am able to discourse on science, art, literature, technology, politics, social sciences. I have a blue chip resume, I know my way around the board room. Yet, if I don’t stay vigilant I will trip myself up – often enough in a big way.
This vigilance is exhausting, it drains me, to have to listen for myself means I have less ability to think – which is what ‘feels good’. I have to check my anger, my reactions, my self-righteousness. I have to make sure I am not circuitous or silly or inappropriate. These are not gross things, I don’t scratch my ass in public or run naked through department stores or get into fights with strangers – but at the level that I normally work the kinds of gaffes and faux pas I make are enough to get me tossed – if I were 21 they would say okay – they would tolerate it, I need training or polishing, but not at this stage – at this stage I am judged.
However I do not protest that I have to use a day planner now, or that I must teach myself to focus – though the vigilance can be an effort what is most stressful is the inconsistency of self. Most folks make some errors of judgement about 2-5% of the time. For me those errors are more frequent; more like 20% of the time. That’s enough to make a difference, a big difference at my level. Yet 80% of the time I am aces, myself, more than competent, skilled, intelligent, empowered, productive etc. Worse, under severe or emotional upheaval (or illness or fatigue) the likelihood of errors, of TBI moments, increases – sometimes as much as 30 or 40% of the time. But still, most of the time I am very good at whatever I choose to do – too good and too much of the time to simply pack it in and say ‘I am disabled’ or unabled. But that 20%….. I have a lot of holes in my foot where I shot myself.
So 1/5 of the time I am unreliable to myself, 1/5 of the time I blow up my circumstances. I have no family, no supports – if I trash it then I am down on the bottom again. I know this but there are no alarm bells that will go off to warn me that I am doing a ‘tbi thng’, there are no friends or kindly co-workers or even a spouse who can gently and supportively say ‘watch your step’. Often the mistakes are just a hairsbreadth off in judgement – which makes them look more like personality flaws than mistakes that I want and CAN (I believe) correct.
I function best, I am strongest and most effective when I work from my intuitive self – that is when I am faster, smarter, more capable, confident, effective. But that intuitive self doesn’t see the cognitive misstep coming, the feedback mechanism is out of whack. For long periods of time I do great, I start to think I am okay, I will make it – and then the TBI me rears its head and I realize that I am not the me I remember.
In the end it’s the not knowing aspect that I hate the most, the surprise that what was something appropriate was in fact out of place. Like I said it’s not something that happens all the time, but it happens more than for most, it happens without any awareness and it happens inconsistently – and it presents as a character flaw that I cannot explain away. It would be sad for me to lose the 80% of my life that is so terribly capable and so I keep at it but inside, it takes a toll on me. A huge toll. An oil spill of the heart.
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m –
Being almost at a complete loss of words… you’ve given me much to think about… the first thing that comes to mind is — How would you differentiate between the Mindfulness of Buddhist practice and TBI vigilance? This is an important distinction I am exploring right now.
Thanks in advance.
BB
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BB, your post is a great one, and for me a little heartbreaking since I’ve never had a successful long term relationship. Although those moments are hard, maybe even not as hard as the years you sucked it up because you couldn’t articulate your needs or responses in the moment… you have someone willing to go through this with you (and vice versa). Of course it’s easier being alone. I don’t have to communicate and be misunderstood. But, still.
To M,
“I function best, I am strongest and most effective when I work from my intuitive self” — This has been the very thing that I’ve realized the past week about myself, and what I’m about to work into a real methodology to get through some hard situations. I hear you about not seeing the cognitive misstep coming, and it is all so disheartening to keep having them happen. But for me, the hypervigilance and always being on alert has changed me in ways that are worse than feeling like a fool. The body has to be able to relax and “be” or else we drown in a vat of stress-induced cortisol. Socially, hypervigilance just doesn’t work IMO, any better than just acting like an airhead. But we all have our ways of getting through, and I hope the best for you.
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jnanarama –
Thanks. I actually think that one of the cornerstones of my relationship’s longevity, has been my willingness to put up with an awful lot of stuff that most others would deem “unacceptable”. I have tried to focus on the positive aspects, whenever possible, which has helped. I know someone who actually broke up with their partner of 7 years, because the partner was extremely messy (turned out they were intensely ADD, but nobody had figured that out), and they got back together years later, when they realized they were supposed to be together.
I think it’s a personal call, but a messy house is not the sort of thing I’d sacrifice my marriage over.
You may yet develop a long-term relationship. You never know. It can show up when you least expect it.
Be well
BB
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Thanks. I do have some hope, there is still a bit of life left, but in the meantime, I’m so used to being single that I’m fine with it. It’s just a glaring omission in the list of things I’ve accomplished. 🙂
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I guess it would be disingenuous not to add that I don’t count my 6.5-year marriage as a relationship. It was just a very negative, abusive situation that I locked into with someone I barely knew. I was young and inexperienced, and wanted out 3 months in. I think I was too proud to admit it. Ever since, with very few exceptions, I have ejected early. The exceptions were very painful rejections. I guess we are either on one side or the other, or “in it”, and I realize that the “in it” is not always what people think it will be. Anyway, this is great reflection material, and I support you sticking up for yourself. I always visualize that I think about my response, and approach the person a little later with how I felt and why this is a problem for me. In reality, I either don’t make it to the waiting period (sometimes), retreat to lick my wounds and perseverate over my resentment (often), or try the above method (occasionally) and find the other person has already moved on and doesn’t want to revisit the issue.. creating another moment with another issue… See, I know relationships, so maybe that’s why I am not in one! It’s not for lack of opportunity.
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m –
And now I can respond…
Your writing really rings a bell, as it’s what I’m going through now — what I need to watch out for now. I feel like I have been slowly but steadily going downhill in the job I am about to leave, things slowly but surely unraveling (as they often do with me), a thousand commitments either half-fulfilled or downright broken. A ton of things I had planned to do, but never got around to… or started, and then promptly forgot about.
In a way, this job change is an escape for me. An escape from my broken self, the self that — as you so well described — never realizes that something is not right, something is amiss, till it’s too late. I try to explain to my neuropsych that I’m falling behind, but they don’t seem to take my “slippage” that seriously. Either that, or I just don’t describe it well enough.
“You’re human — big deal,” is the essence of what they say. Everybody messes up. It’s best not to get into the mindset that THERE IS SOMETHING WRONG WITH ME. But how can I avoid that lurking sense of insufficiency, when time after time, the things I think I’ve gotten 100% right go 75% wrong — and I catch hell over it? How can I combat that sense that I’m defective, when time and time again, I “step in it” like some hapless village idiot stumbling through a minefield?
The mines aren’t permanently disabling, but they keep taking off little bits of me. And since I never see them coming, how can I prepare for them?
The times when I am hit the hardest, are the times when I am most confident that I’ve nailed it. Small wonder that I have such a deep-seated agnosticism regarding my abilities, my skills, and my knowledge. I *could* be right. But I could also be very, very wrong. And never find out till later.
It’s maddening, is it not?
In short, I hear you. I hear you loud and clear. It’s like there’s an echo in North America, and I can hear my own yells bouncing back from wherever you are.
Be well and good luck.
BB
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