I actually didn’t get to see my diagnostic neuropsych yesterday. They had a family medical emergency to deal with in the p.m., so our session got pushed off a bit.
It’s a bummer, too, because I could have really used a sympathetic ear. It’s not like I want someone to sit around and pity my — that’s about the worst thing ever. But I could use an hour or two with someone who actually understands that I’ve got issues and is focused on me dealing with them in a constructive manner.
The new neuropsych therapist I’m seeing has been very helpful to me already. They’ve helped talk some sense into me and helped me deal with some logistics in my life. But they seem to be into “tough love” — urging me forward with my life to do the things I need to do in order to be a viable individual, and not cutting me a lot of slack in the process.
It’s really a change from my last therapist, who was into helping me “get in touch with my feelings.” They were really into my emotional well-being and talking about things that had happened to me in the past, and how I felt about it all was a big part of each session. It was also completely new for me to be having those kinds of conversations with another person. What I feel and how I experience emotions is something that’s always been reserved for the inside of my head and heart. I don’t wear my heart on my sleeve, and I have no interest in doing that. So, having those kinds of “how does that make you feel?” conversations with another human being was new and different for me.
And as much as I balked at it — at first, and continually over the past year or so (including today) — I kind of got used to it.
So, now it’s going away, as my “touchy feely” therapist (God love ’em!) is retiring. And my new neuropsych therapist (I’ll call them NT, versus ND, for “Neuropsychological Diagnostician” who’s done the testing with me) is completely different.
NT is way into logistics (from what I can tell), making sure I’m staying on track with my job and my marriage and my daily responsibilities and doing all the things that normal regular people do in their lives, MTBI or no. They’re part coach, part sounding board, and they don’t actually seem that comfortable talking about emotional stuff. Or maybe they’re holding back to see where my tender spots are, so they don’t push me too hard and push me over the edge.
When I first met with them, being nervous and apprehensive and anxious about starting therapy with a new person, I was on the verge of tears a few times, which I absolutely hate. I get nervous and angry with myself and feel so self-conscious that I get all teary and choked up. It’s not that I’m sad or emotionally distraught — that’s how my frustration comes out at times. How annoying… It’s hard to have an adult discussion and feel like people are taking you seriously when you’re fighting off tears over every little thing. But that ‘s exactly what happened, the first couple of sessions I had with them.
So, maybe they think I’m really fragile and they need to handle me with kid gloves for the time being. Or maybe they think I’m unstable.
I did give them a list of my head injuries over the course of my life, so I’m sure they’re factoring that in, somehow. I get the feeling, sometimes, that they’re trying to see if I’m dangerous and prone to act out. That’s got to factor in, somewhere. I think I have told them I have a history of violent temper, and it’s only the two of us in that office, so there they are with me, being ginger and diplomatic and testing the waters. Am I a caged animal? Am I just looking for a reason to act out? Am I a threat to myself and/or others? They may be wondering… watching… looking for a hint of threat from me.
Anyway, this starting period with NT is tricky. And it’s getting on my nerves a little bit. I want to be able to pick up where I left off with FT (“first therapist”) and just be myself and speak freely. But I have to remember NT is a new person, they don’t know me, they need to get their bearings. And I also have to remember that my sessions with FT were like this for over six months before they started to loosen up with me. And there were times when I did feel like I scared FT a little bit, so NT probably just has to get to know me, before our sessions really get some traction and we start talking about what’s going on inside me.
It’s going to take some time. I know that. NT does neuropsych testing for kids, so they must see kids coming in all the time who have real problems, and I’m not sure how many neurologically impacted adults they see in their adult counseling practice. It could be that they don’t see many at all. The thing is, I’m starting to feel like they are really very skeptical about how my head injuries have impacted me over the course of my life. It’s almost like they don’t believe me. Or they think I’m lying. Or they think I’m trying to tap the system for help from some state head injury program or get disability or somesuch.
Granted, there are a lot of people who do take advantage of the system. They do take advantage of the government and government programs. I have a sibling who does that — they’re highly educated, as is their spouse — and they have all the advantages in the world, yet neither they nor their spouse will work full-time, and they tap into government funds for help raising their kids. This is just so odious to me, I cannot even begin to say. With all the gifts and the privileges and advantages they have, they throw it all away — and their kids have been harmed by their choices. And if there were any way I could change that, I would. But they take their entitlement to the lowest extreme possible, and no one is served — least of all, them.
But that’ s not how I am. I have walked out of bad living situations in the past and have chosen to walk the center city streets of one of the country’s largest and meanest cities, looking for a doorway to sleep in, rather than seek help from a shelter or go find some agency to help me. That’s just how I’m built — I do for myself, or I don’t do at all. And when I talk about my problems and try to identify my issues, it’s not so that I can suck the scant resources from an already over-taxed social system. It’s so that I can come to terms with it all and get on with my own life.
I guess I just need to make that clear to NT. When I talk about the difficulties I’m having, they keep telling me things that make me think they don’t consider my losses to have been that great. Or they don’t think I have that many problems. They talk about how other people have trouble with memory… other people have trouble with physical pain… other people have trouble with understanding what people are saying to them… other people have trouble with sustained attention… Everything I talk about that is difficult for me to accept, that wasn’t there before my injuries but showed up afterwards… Everything I mention that I’m having trouble with, that I didn’t used to have trouble with… Everything that’s getting in my way, behind the scenes… Well, from what I hear NT telling me, that’s just life.
As though my problems aren’t really that extreme. Or debilitating. Or difficult to overcome. Maybe I’m making it all look too easy… Maybe I’m not being forthcoming enough about my issues and putting them in the right light. I’m not sure how to do that, though, because it’s incredibly difficult for me to actually talk about these things, to begin with. I don’t want to be afraid. I don’t want to be upset. I don’t want to be turned around and lost and have a hair-trigger temper. I don’t want this stuff to be in my life to the extent that it is, and it’s really embarrassing for me to even mention it aloud. It’s not normal for me. And it’s not acceptable for me. But when I talk about it, NT acts like it’s no big deal. Or that I should be content with what I have and not worry so much about what I’ve lost — if I’ve really lost anything at all.
It’s frustrating. And it’s why I wanted to see ND yesterday. Because the big point that ND made with me from the start, is that the injuries I’ve sustained have caused certain significant losses relative to me. Not relative to the rest of the world, which apparently often operates on a different scale than me. Relative to me and my abilities and my skills and my capabilities. My own baseline is higher than average. I have a lot of abilities that are well above average. I have God-given talents and skills and abilities that are measurably high-end (and here I always thought I was a total idiot!). But in the course of my life, getting hit on the head, falling, getting into car accidents, etc. have cut into my ability to make the most of those abilities. Sometimes, they’ve stopped me cold. And unfortunately, my injuries have often happened at very critical times of my life, when I was about to move forward — or I could not afford, in any way, shape or form, to sustain a TBI, even an MTBI. So, the timing of them, coupled with the subtle (and unaddressed) impact of them, combined in some karmic double-whammy that knocked me out of the running, just when I was about to jump forward in my life.
I look back on my life and I see all the potential I once had. I see all the joy, all the excitement, all the vigor that propelled me through life. And I see all the hopes and the dreams I once carried. I see all the talent I had as a young kid who understood fairly complex geometric concepts from an early age, who wrote short stories and novellas from the time of grade school, who had such a consuming interest in certain topics and such an enduring ability to dig in and really relish what I learned about… I think about my teen years, when all the world was a fascinating oyster for me to explore… I think back on my early adulthood, how I was so very intent on doing the best I could do, being the best I could be… and how clear I was about what I was going to do with my life, what I was going to accomplish, what I was going to achieve… and how I always knew there was something inside of me that was so unique, so promising, that all the world felt wide open to me.
At least, that’s how it felt inside. Inside my head. Inside my heart. Once I got outside my head and started to interact with the outside world, it all fell apart. I couldn’t get my thoughts together. I couldn’t understand what people were saying to me. I couldn’t keep up with what was going on. I couldn’t follow through with much of anything. I would get so turned around, so tired, so frustrated, so backed-up, and so upset with myself for being so stupid around other people, that I could never get anywhere. I just couldn’t. I’d get my words mixed up, I would lose a lot of what people were saying to me, I’d misunderstand, but wouldn’t understand that I’d misunderstood…
And it would all go to hell. Again.
How I can explain this to NT, I’m still not sure. They don’t seem to think I have real problems understanding. Or maybe they do, and they aren’t showing it. Maybe they’re just trying to make me feel better about myself and not let me get hung up on my difficulties. Maybe they think I’m just lying about all this for some nefarious reason. All I know is, they don’t seem to think my difficulties are that big of a deal, and it’s disheartening.
It’s like having someone who’s colorblind tell me that I should be bothered by suddenly not being able to see different hues of green and red. It’s like having someone who is not physically fit telling me I shouldn’t feel bad about not being able to run up 20 flights of stairs, like I used to. It’s like having someone who has never had much money telling me I shouldn’t feel bad about losing 60% of my retirement savings to the market slide(s) of the past 10 years.
It’s all relative, certainly. But I do feel my losses grievously. And even if other people don’t know what it’s like to have what I had, I do. And I know what it’s like to lose it. And miss it.
The closest analogy I can think of is that I’m like a spider monkey who lived up in the trees all my life — swinging from trees high above the earth, eating fruit and flowers, having a grand time galavanting to and fro…
… Until I fell and hurt myself and lost my sense of balance… and then I lost a finger… and another… and another… and then my tail was chopped off… and I lost the rest of my right front paw.
Progressively, I have lost the ability to jump and swing through the branches like I used to. I can’t hang from limbs and pick and eat fruit and flowers like other spidermonkeys can. I can’t get up into the highest branches, where I used to swing without a care. I can’t just galavant, to and fro, and be a monkey.
I’m grounded. Stuck on the forest floor with the capybaras 
, who are content to graze and forage on the ground, who have no need for tails, and perhaps never gave a thought to spending any time up in trees. And who certainly don’t miss the sight of blue sky above the vast canopy of treetops – because they’ve never seen it.
“What’s so terrible about being on the ground?” they ask me. “Why be upset — there’s plenty of grass and plant life to eat down here… You should be grateful to have what you can get. Why would you want to be swinging around up there, anyway? And why would you want a long tail like that? Seems to me, it would just get in the way!”
It’s an imprecise analogy, I know. And it might not make sense to some. But sitting in session with NT, it’s how I feel. Being told that ‘everybody has problems’ with memory or pain or whatever other problem is holding me back, doesn’t help me come to terms with the fact that I’ve lost it. That part of my personality is gone, that my identity has been compromised. And it may not be coming back. Maybe I’ve been deluded, all these years, thinking that my life could have been any better than it was…
But you know what? My life used to be better in some ways, than it is now, and nobody can take that knowledge away from me. I have lost. And I have lost a lot. And I’m trying like crazy to build back what I can. If I just throw up my hands and say, “Oh, well, I suppose that’s my lot in life, I should just be grateful for what little I have,” it may make me feel better in the short term, but it flatly denies what I feel in my heart — that I am capable of more and better than I have been doing… that there must surely be some way for me to make the most of what I have and build back at least some of what I need… that I don’t have to settle and I don’t have to resign myself to a disabled life.
I have lost. I have lost a lot. And it sucks. But that’s not the end of the story. It never is. I am not giving up, and I am not going down this road to make less of my life than is capable. I’m going down this road to make more of myself than I am now, or was before. Even if I have fallen. Even if I have been hurt. Even if I have lost things along the way, I can’t give up. Not now. Not ever. No matter what anyone says — even a well-meaning, highly educated and professionally experienced therapist.
In the end, we all have to make peace with our limits. And make of them what we will…
Broken Brain - Brilliant Mind 
BB –
Whew! Well I have been where you are a few 1000 times myself.
1. If it helps you know that this is a ‘funky day’ – one of those days that everything reminds you that you have a brain injury, one of those days when you feel like your wings were clipped and you can’t speak the language of the natives and you want to go home – back to YOUR brain – but you can’t and you know it and you get pissed and tired etc etc. Those days happen, not to be ashamed, or feel guilty or blame yourself or anyone. BUT know that it’s one of those days and its best not to use your judgments from those days for anything concrete – because it is skewed from the frustration you feel. Know too that this is part of the healing process you go through – it’s the part that gets you to come to self-acceptance that works for you. It’s the part that helps you recognize when your thinking is ‘off center’ and what you need to do about it.
2. I very much appreciate your sense of pride and self determination and will and your desire to be a spider monkey – even when that doesn’t make sense to the world. As a tbi survivor one of the promises you should consider making to yourself is this – make no decisions immediately. if you have a trusted friend (or develop a good relationship with your therapist) pass major decisions by them – I call these my ‘sanity checks’ – just to make sure I am not thinking nuts. I understand wandering the streets over ‘giving in’ to a shelter – believe me I really do – but I also know that sometimes the bull in me gets so enraged or feels such injustice or anger that I want to punish myself and the world and just do it my way – and so I go too far. Nothing wrong in my way but it’s the reactive part that is dangerous. Your anger is similar to that – it’s extreme reaction to systemic overloads, you get an idea and your brain can’t switch paths and then someone or something says no, turn left and you can’t and it pisses you off so you get mad. No one is listening, no one gets it. Only the goal isn’t to get others to listen or ‘get it’ but rather it’s to find a way to make things work for you. I have been facing some very difficult decisions lately – all the solutions were terrible, truly terrible, and I was responsible not only for me but for my child. A friend came over and said to me ‘give up’ – and I just felt such extreme anger and despair. So I spent two days thinking about how to solve my own problems – not what the answer was but HOW do I solve problems. I wrote out a methodology – and used it to come to a resolution for myself. The final choice isn’t great but it works, it makes sense and mostly it works for me, I can live with it because I took the time to work it through. It might even be the same answer I would have chosen in reactive anger BUT this time I knew why I chose it, I could articulate that clearly and reasonably and I didn’t have to piss anyone off in the process. I handled a crisis! Wow – that’s pretty good for half-witted me. But I also know this isn’t the end of crisis – by far. I think that your pride and determined attitude is both your blessing and your curse. What you need to train yourself to do is to keep teaching yourself how to use it effectively. By the way – I also do personal coaching and this is true for ANYONE – tbi or not – we have strengths that can get us to certain places but then, like rabid dogs, they can turn on us and do harm. It’s NOT a matter of self-dicplining that rabid dog – in fact I believe its a matter of making friends with it, becoming ‘one with it’ (to be cliche) – so you know when it’s growling and thinking about being a stupid wild beast and you know when it’s warning you of danger and protecting you and you know when it wants to come sit in your lap and get petted (and if you understand this analogy you definately do have a tbi!!!!)
3. Neuropsychs – I want to go on the lecture circuit on this. I was given a great article – Emotional Consequences and Psychotherapy for Individuals with Mild Brain Injury by Bennett and Raymond. It’s from 1997 – I only have hard copy and a quick search reveals many article by them (the others look good too and I will have to read them) – but if you can get your hands on this it may help. What you NT MAY be doing is basically addressing the physiological issues of emotional effects from tbi in this INITIAL stage – it is VERY important to separate tbi emotional response from psychological response – even if they are riding on the same track and look the same. That is because the cause and treatment for them are different. One does not preclude the other either. Thus there is emotional effect from the injury and as a response to the injury and then there is there are psychological (touch feely) issues that either existed before or that have risen to the surface from the changed dynamic (I have been through and continue to deal with all of those things). But I believe that until you address and understand the tbi stuff you cannot get to the touchy feely stuff – the tbi must be addressed first. Thus some of what your NT’s actions are may be rooted in that approach – so it’s not going to feel like they want to smooth your emotions out – nope, they want to teach you how to walk upright before you run. Because if you can’t stay on track with jobs and stuff then the psychological and the tbi start to criss-cross and you get havoc (which I am very familiar with) and it becomes a real chicken and the egg situation – and the answer becomes drugs – which I still believe it not a great answer. Some of what I think Orlando is about (and i haven’t read through it thoroughly) is this same sort of self-empowerment, this sort of – find the tools and use them and then we can talk about your mother. I think that you also sense this – you comments about the tbi and anger – my issue is just not to beat myself up for being a tbi survivor and having problems with this stuff – it just is, like being left handed or being unathletic or being bad at math or shy or overweight or anything – I can only deal with it if I stop judging it.
Ultimately what tools, if any, are my choice. Not everyone would want to do the things I do, some would accept a more passive life – but that’s not who I am – BUT (and this is a big but) I can’t just say ‘that’s not me’ and then get stubborn – that’s the key, I have to be me in a whole, functional and productive way. For me that means to raise my child successfully, to work and provide for myself, to manage bills, financial obligations and learn how to address those matters successfully, to handle problems without losing my cool, to know what matters to me ethically, to act accordingly, to build relationships, to have pleasure – to enjoy life, travel, art, performance etc. and to give back to the community and world. So I have to ask myself – will my desire to wander the streets or not talk to so and so again or jump off a cliff or whatever help move me froward towards what I want in my life? (or at least keep me from falling backwards?).
Your NT is, if familiar with tbi, not likely to be afraid (any more than with any patient) but as I said – they are trying to remove the emotionally laden crap from the picture so you can focus on the practical things you need to address FIRST. If your life is not stable you cannot make your emotions stable.
Your comments about disability are also interesting to me – I have been told so many times to go on dis – and I have resisted for the same reasons that you state – I just want to work (and sometimes I think that is a tbi thing) – but I also do see and understand that this MAY be a possibility I will have to accept to insure my life and well being. It’s not ideal but its not an ideal world. I keep trying – and wish that someone would see what I CAN offer so I can do that.
On the other hand many people don’t understand what I deal with and don’t see the frustrations or believe it is a matter of self-will. And because I don’t have scars or other visceral proof I too begin to wonder – am I a fraud. I think this another typical tbi response. Then you ask the professionals well, is this tbi? and they say ‘what do you think?’ – it makes me crazy – all I want to know is Is this what everyone else in the world experiences or is this tbi? Because if it’s tbi then I know I need some strategies to handle it, if it’s emotions I need to understand what I am doing, and if it’s normal then why are things so difficult for me.
Yet, like you I am very high functioning – so much so that with a tbi I am still higher functioning than many people – it’s like gifted with learning disabilities. So do I have a right to complain about my attention or memory? Or is it ‘just’ emotional and if I would grow up and stop whining would I manage better?
I too have many ideas and hopes – even now – what I am trying to learn is how to keep them alive as they make sense and act on them in a productive way – seeing how it unfolds. Maybe I can accomplish things, maybe I can’t, maybe they will remain stuck inside of me or maybe I will have to change the vision I have of what i seek. I try to not judge that as well, to make that a part of the journey, the process.
Your difficulties are real, are valid – accept that and know that others will not (for many many reasons) say that. Then let it go and take it to the next step. The therapist who helped me a lot also spent a lot of time saying to me ‘ does it matter if its tbi?’ – Because her gist was if it’s interfering with what I need/want/seek then I just need to address it period. And so we did. And in the end that was MUCH better – because I didn’t feel like a misfit, I felt empowered. I wasn’t handicapped I was capable. Hopefully that’s where your NT is taking you.
2.g
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BB – another site that someone passed along to me – I have not verified this product so I can only say that I was given info and it seems intriguing is at brainaid.com – it’s a computerized system called PEAT. I secretly believe that a person (at first glance) can do this themselves BUT it is more complex to do it yourself – so if the application helps you accomplish your goals – Also – here are some quotes from another person re: TBI
I have found that we people with brain injury, at least the ones who make substantial recovery, are indeed stubborn. I know that I was, and am still, and that’s what has pushed me along towards the recovery I’ve made. If I had listened to the doctors and therapists (as well as to a small part of me), I would not have made anywhere near the recovery I have. You’re definitely on your way.
Second, your depression and anxiety are not only common and normal, but prove that your brain injury hasn’t “got” you…..you are in a ‘new world’ … this ‘you’ is different from the ‘you’ you remember pre-brain injury….any one with any intelligence at all would feel depressed over such a loss: being depressed tells me that you’re leaving denial (which is a good thing).
Third, re: the memory and fatigue problems, it has been my experience (see below) that memory gets better as we use other parts of the brain to ‘take over’ the lost functions. But here’s the key: you get the fastest and most complete recovery, you need to work at it. When we organize our life and make ‘systems’ to remind ourselves, our improvement accelerates.
This person went on to tell her story of recovery over a 20 year period where she discovered that she had a cycle of improvment and plateau and that she made improvements when she was in challenging and mentally stimulating/learning situations and she plateaued when she was not.
As she said….- ‘it was the mental exercise that helped me improve, even decades later! I’ve never read this in the literature, but it certainly was true for me. So keep up the ‘brain exercise’: it’s worth it.’
This person also endorses PEAT – so who knows.
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Wow – thanks for that feedback. Totally makes sense, and helps a lot!
I do think my NT is both taking time to get to know me AND making sure I don’t do anything genuinely stupid to jeopardize my health and welfare. They’ve already “talked me back from the edge” of some rash decisions that probably would have gone poorly, had I followed through with them. They’ve talked sense to me, and they actually know how to talk to me in a way that gets my attention. I guess the “tough love” thing works 😉
It’s true – I have been having funky days, lately, due at least in part to my feeling like I’ve bitten off way more than I can chew with this job, but not being willing to just give in. I’m convinced that, one way or another, I can find a way to keep myself in the game. I’m not willing to sit out. I’ve had more than 3 years of casting about in various lower-level jobs that were in my field to build up my self-confidence after my fall in 2004, and I’m frankly too stubborn (and in need of good work) to just toss in the towel.
If there were any way I could go on disability AND maintain a standard of living that I need — by pursuing other activities as well as cutting back on expenses — I would do it in a heartbeat. But I have no faith that my case would be viewed favorably by any governing body. I have no medical proof of my injuries, and I just don’t have the stamina for an extended bureaucratic struggle, so I’m going to make the best go of it I can.
I’m sure I’ll figure something out. I have dependents and some serious responsibilities, and I have to stay in the game, so there it is.
I am starting to get to a point where I trust this NT enough to run big ideas by them. Granted, I don’t always buy what they tell me, and I am so hard-headed and willful, that I tend to just do what I please, when all is said and done, but it is good to have someone who’s not cognitively impaired – that I can tell, anyway 😉 – in the room when I’m discussing my options and decisions.
Again, thanks for the feedback — way helpful. I hope others are reading this, too – it’s good stuff!
Cheers
BB
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I took a look at PEAT, and I really like the idea for a number of reasons.
First, with everyone running around with PDAs, these days, it helps you fit in, even if your own PDA is more “remedial” than everyone else’s spiffy iPhone (which apparently has technical issues, anyway).
Second, it’s specifically designed to help our brains. It’s built for that purpose, so I would imagine there’s less chance of getting distracted by a bunch of extra apps, like the iPhone harmonica or acarena or some other sort of game.
Third, it’s small and portable and graphical and doesn’t stand out as a cognitive crutch.
I may get one, myself. I’m danged lousy at doing the whole PDA thing — I have one, but I kept forgetting to put batteries in it, and anyway, it was more clunky than my daily minder. But this PEAT gadget may actually do me some good.
Still, I’m fond of my daily minder, and the practice of writing things out by hand seems to soothe my jangled nerves (tho’ having to read my scrawly handwriting often doesn’t 😉
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It’s funny but I have such a thing about the expression tough love – I suppose it’s just me because I have had people use that as an excuse to treat me like I was ‘less than’ as a human being. The thin line I walk with brain injury is – if I admit that I have ‘issues’ or things that effect me I feel like I get pigeon-holed – so if I get angry its because I have a tbi and my moods are unstable, or if I don’t understand something I am addled and need to be spoken to s–l–o–w–l–y. It can’t ever be that someone did something that induced anger, or that someone wasn’t clear, or anything – it’s tbi and I am handicapped. It infuriates me.
However if I don’t admit it then I am seen as difficult and troubled and un-cooperative (or something) – and I can’t get assistance in figuring out what a good strategy is.
Sometimes even the therapists treat a TBI person like they are ‘less than’ – talking about you in third person when you are in the room. It’s very frustrating. If I was recovering from a heart attack people would applaud my efforts and be sympathetic to my struggle – but they wouldn’t see me as ‘heartless’ or less of heart – but a brain injury makes me brain less – or at least cognitively inferior.
I really don’t want anyone telling me what’s best for me – I DO want people to tell me about options, strategies, give me ideas, acknowledge what I do, let me see the upside and downside of my thinking AND then let ME make a choice. No one walks in my shoes. When I had a brain injury I did not surrender my voice.
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Now that you mention it… It’s true about how people can treat you. I have sensed NT (new therapist) taking a sort of approach with me that seemed to indicate they were “handling” me, since I was impaired to begin with. I think they’re still getting to know me, so it takes time. But I think they may have reached some conclusions with me already, which I’m not keen about. Conclusions like:
This person got hit on the head a lot, and their head injury history goes back quite some time, so their ability to reason adequately may never have developed fully. I have to say, I wonder about that, myself, at times. But in all honesty, I think my own internal thinking processes have developed extremely well, while my external ability to interface with the rest of the world is what has lagged.
This person is emotionally labile and has a short fuse, so you have to take everything they say with a grain of salt. Like you said above, it can’t possibly be that another person has done something to provoke me or that present circumstances are genuinely maddening and would drive anyone to tears. I’m brain-injured, so therefore I must be dealt with differently than if I were “whole.”
This person only thinks they know what’s going on with them, and they need to be steered towards a more “realistic” approach to life. I’ve had some of my decisions challenged seemingly by reflex — like job change decisions that didn’t cast me in a “disabled” light. NT really questioned whether it was a good idea for me to pursue this present position, which I must admit is making me more than a little anxious and agitated. But what I really need, instead of being shielded from harsh reality and being ‘re-educated’ to be more ‘realistic’ about my capabilities, is to be supported in my choices and encouraged to find-out-what-happens-when, even if that “what” is not so great.
When it comes to “tough love” I think we need to be clear whether people are truly being loving. Or if they’re just being “tough,” because they’re more chicken-sh*t than we are about how intently to engage with the world and they think that keeping us in a little safe quadrant of life is going to be what we need to get by.
Personally, I”m not interested in just getting by. I want to get on with my life. And move up in the world. I really don’t think that’s too much to ask, even if I have sustained tbi’s.
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I agree very much – the NT I currently have is a nice person, well intentioned and supportive but I still feel like she has a sense of me as ‘damaged goods’ whereas my prior NT, who I truly feel saved my life, created an atmosphere so that when I left her office I felt – good, solid, grounded but capable of doing things. She didn’t second guess my judgment and consequently I was better able to listen to her feedback, even when it disagreed with me.
I too want to have a robust and satisfying life again – and I mostly believe I can – but it is very very hard and most folks do not have any idea of how hard it is. Yet I think in general we live in a society where people tend to believe they have to prove they are right and someone else is wrong, rather than to consider where the other person is coming from and why and how, to come to a place that works for all. Whether my feelings or needs are tbi related or not they are real and true – to simply dismiss them as tbi or tell me that I don’t have a realistic picture becasue of tbi delegitimizes my perspective – and that perspective is ME. If the goal is to help me insure that I have a healthy and productive perspective, then you have to accept what I feel is true or what I need and help me find the process to working things out. Always – and I mean ALWAYS – when a person talks to me like a thinking and capable human being,I end up listening to their words and consdering what they say. I may still not follow it but it will be by a conscious and thoughtful choice and not an emotional reaction. When someone gets pedantic or responds to me in a way that doesn’t respect my values or my needs I struggle with listening.
Perhaps there are certain commonalities of personality that occur with brain injury, especially among those who are bright and capable and are struggling with a ‘changed’ self. And some of those personality issues may be anger, refusal to acknowledge issues, stubbornness, absolute determination to have their life their way etc etc. What I would like to see in a therapist, is for them to say – that’s fine, those are your ‘tools’ so how can we use them; clearly stubbornness (tenacity) is a strength in many circumstances, the desire for a better life is what made this country (what would have happened if we told the early immigrants = hey, your dreams are too big, settle for less), even the refusal at times to acknowledge weaknesses can be a positive.
Likewise I KNOW that those things can trip me up. So I ask a therapist to applaud and support my tools while teaching me how to use them wisely. I try to not have an absolute vision of my future that I MUST have but I also try not to say what’s possible or impossible – I read this description that said mild tbi survivors are intellectually intact but may have trouble with keeping their thoughts or emotions in order. Mostly I think that’s a good description but even that has its erroneous interpretation. I have all my life been a very intellectually curious person, I read about and know about subjects in many areas – a dilettante for sure but I it wasn’t a problem per se because I could direct, easily, my attention when I needed to. Now I still have a multitude of interests – and in fact sometimes my brain feels hungry for knowledge, but it’s harder to get myself back on track, it doesn’t happen with a snap of my fingers like it once did. So I appear distracted – yet I feel just like myself in terms of my interest in things. To an observer I may seem to be scattered and so they may think I am too confused to achieve things. But what I seek is the way to bring myself back to what I need when I want to do that. I believe that I can do this – but that it will take some retraining – and I also think there are approaches that can help – like learning meditation and using the meditative techniques to help clear my mind. In time I hope those things will allow me to still be the me that likes to see and think about many things but equally be a me that can direct myself when I need to so that I may achieve productivity.
I believe this is possible for me but like I said its hard – I expect fully to screw it up and fail and make a mess of stuff a few million times before I get it down well – and in that time period I still have life to live and a need to enjoy it. It would be nice to have the people around me support this – to know the effort and intent and not see me as a cracked vase (visually intact but useless) but rather as a work in progress. In truth aren’t we all?
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As to your NT – one approach of course is to tell them this – say, hey, your words or actions suggest you see me as ‘unstable’ which I find creates an atmosphere that is non-productive – if you see me as unstable and I think I am capable then we are not coming at this the same way and we need to address that. It’s a legitimate response – and they should be open to answering and exploring with you the possibility that they are saying things that do this. It is important to not make this about the therapist per se but rather about what they are doing that gives you that impression, how they are not providing what you seek and what you need them to provide that would help. I think a good therapist will let you have some ‘control’ over the situation and respond agreeably.
You may be told it takes time – and it does – but I also think that you can lay out some sense of what you need in order to justify these things. You have a cost in terms of money and time and effort, they get paid no matter what. I have been through too many efforts in my life with ‘authorities’ who didn’t work for me (but worked for others just fine) and I accepted that their authority meant they knew what to do. You must be an active participant in your healing and must believe in what you are doing or at least feel comfortable being able to suspend disbelief. This isn’t an angry or hostile or stubborn approach but it is realistic. If you dedicate a year to this NT and still feel untrusting and judged then it’s your life that is on hold – not theirs. So there has to be some sense that this is valuable to you. Having had someone who did make a difference for me really showed me that it was possible.
Be honest with the therapist but also clear, what do they say, what words, what behaviors. What would work better for you, what do you want them to say. What do you want to achieve with this? Yes, your life may be out of order and so you are seeking advice but you want to make your own choices and not be rescued (least that’s what I think you are saying) – so what helps you do that? Do you need to establish priorities, ground rules, a plan of action, do you need to have them help you identify self destructive behaviors (like catastrophizing or panic), do you need them to praise you and tell you that you are okay? This is your life and you get one shot – what do you need to make the rest of it whole, satisfying, enriching, potent, true, giving – whatever you want.
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One other thought about your NT and the reason its important for you to be partnered with the NT and the process rather than a recipient ; it’s also your call in the end to say what your issues are. What I mean by that is that it may be that you have do something that causes you problems but you just don’t see it or don’t want to see it or whatever. Your NT can certainly point out why they may feel this is an issue but it’s only you that’s got to decide if it is.
For example; some folks are really messy – they live in a state of suspended chaos and it’s okay for them, they are still productive and relatively happy – so even though they may take some gruff from their partner it works – and the effort to change may not be worth it – unless it’s really damaging their relationship (then a compromise may be in order). They have organized their world in such a way that messy is part of it – and may even enable it.
On the other hand some people are messy and it’s a barrier to success, they waste time, get frustrated, and always seem to forget things. For them messy is a problem that is inhibiting their ability to own their life. Same thing for brain injury – it may be that you do things that for whatever reason you don’t feel are issues – and I would suggest that it isn’t the job of the NT to spend a lot of time trying to convince you that these are indeed issues – rather they can present their thoughts or what they see and leave the option open to you.
Now it is true that sometimes we just don’t want to see things and we may need a serious nudge – but I suspect that if you don’t want to see something and it’s been presented in a reasonable way then you simply aren’t ready to see it (barring life-threatening behaviors from this of course). So if you aren’t ready to ‘dream smaller’ then it’s not the issue you need to work on. It may be true that you are thinking bigger than what you have demonstrated you can do RIGHT NOW – BUT (and a very important but) you need to have that RIGHT NOW. It may be that in time you are able to do the big thinking things or it may be that in time you change your thinking or it maybe that you learn how to think in increments or something else – but if you don’t think this is an issue for you then I would say – focus on something else in developing strategy. Since most things are linked anyway you will come round to this.
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