See? Active management of my “new brain” works… I can hardly believe the difference between yesterday and today. Like day and night – or night and day, respectively speaking.
Yesterday, I was all over the place, wafting about on every wind that came along, getting “blown off course” by the little molehills that turned into mountains, losing track of my work and my progress, and ending up the day just exhausted, with precious little to show for my efforts, other than aggravation and rabid self-criticism.
Today I did things completely differently.
I set my intention to take the train into the city today, so I could have some time to plan and get clear on what I needed to do. I was running a little late, though, and since I wasn’t sure if I was going to be able to make the train on time, I made a Plan B for how I would drive in, if I just missed it or didn’t get to the station in time. There are three different ways I can drive to the city to work, and one of those routes is not far from the turn-off for the commuter rail stop. I’m lucky, that way — even if I miss the train, I can turn around and get back on one of the main routes.
I wasn’t sure I’d make the train, but I decided a few miles down the road that I was not going to stress over it. If I made it, I made it, and I would be glad. But I was not going to get worked up over it — especially since it was raining and traffic was very heavy. I kept a level head and took my time. And wonder of wonders, I actually made it to the train with three minutes to spare.
On the train, I took time to read the Give Back Orlando material and get my head on about tracking my progress. I also took time to plan my day. I had some things I wanted to read for work, but I didn’t get to them. But again, I didn’t stress over it. I just rolled with the changes. It felt so good, to not have to drive the 90 minutes into town… I was just glad to be able to sit and read and relax.
So, my pacing was pretty good today. Relaxed and deliberate and measured. Well-managed, if I say so myself. I also took care of my physical health. I made sure that I had plenty for breakfast. I only had a small cup of coffee and a bowl of cereal before I left the house (my cat had a better breakfast than me), but when I got to the office, I ran out to a breakfast place and got myself a little mini-quiche — eggs and pastry and vegetables. I don’t care if quiche is “girly” fare. I was hungry, and I needed something more than cereal to tide me over. And I had some orange juice, too. Not the bottled stuff — the real fresh-squeezed stuff. Tasty.
When I got to my desk, I took my time setting up, and I did not start in on any of my tasks, until I understood exactly what needed to be done, and by when, why, and how I was going to do each one. Where there were gaps, I figured out how I would fill in those blanks — whom I would talk to, what info I needed to ask about. I looked at my notes from yesterday, organized my notes for today, and I prioritized all of my tasks. I have a lot of tasks each day – I have a busy job and a full schedule. And I’m on deadline on a really critical job. So, I can’t afford to monkey around.
Keeping a level head, I took my uncooperative little brain in hand, today, and I followed its shenanigans very closely. I wrote down everything I was responsible for, ahead of time, and when my brain started to balk at how much I had to get done, I kept an even keel and broke down the larger tasks into smaller ones and checked them off as I went. I didn’t move on to the next step, until I checked the results of the step I had just completed. It was painstaking and slow going, but it was very efficient.
I also tracked when I was having a “head-injured moment” and I put a big “HiM” in the margin of my personal notebook beside my notes about it — and I circled it, so I can look back on it later. And I marked the incidents with a highlighter that’s in a color that I really dislike, so I’m sure to notice those moments, when I look back on them
There were some times when I got turned around and snappy with folks I work with. I felt bad about it afterwards, but fortunately, I work with good people who are also under pressure and have been known to snap, themselves, so they cut me some slack. I wrote down each time I started to get overwhelmed and I highlighted it in that nasty color, and I made mental notes about what to do better next time.
Just writing it down made me feel better. And seeing that I had a plan for how to handle things next time also really helped. It’s funny – I used to be so opposed to writing things down and keeping notes. I knew in the back of my mind that it was a good thing to do, and I wanted to, but I could never get my act together. Impulse control and initiation issues. Seriously. But today, I was so upset with myself about how yesterday went, I had no other choice. I had to actively manage myself, and so I did.
I also took some time for myself to unwind and just decompress. I knew that I was supposed to meet with someone at 1:00, but I walked out of the building at 12:30, and I took my time going back. The person I was meeting with has a very fluid schedule, and they’d brushed me off from the 11:00 meeting we’d had scheduled, so I just decided to take time for myself. I went for a long walk on this beautiful sunny day, not worrying about the timing, but doing the long walk around a bunch of blocks, and making my way eventually to a deli to get a sandwich. I didn’t have the leafy green salad I was thinking of getting — the lettuce was just about gone. I had a roast beef sandwich with some lettuce in it, and some chips. Just enough to tide me over for the rest of the afternoon.
I really felt better, too, not having a huge lunch. Some days, I get Chinese food, and they give you so much food, it sits like a big lump in my stomach all afternoon. I know I don’t have to eat it all, but perhaps it’s a perseverative quality of mine, that I compulsively finish my food. Today, I ate relatively light, but I did eat enough to not be hungry anymore. Somehow, I think the protein at breakfast and lunch was a help to me. Some days, I just can’t stop feeling hungry. Could be a protein thing.
Another thing I did right was, I drank plenty of water. I have a pitcher I keep at my desk, and today I actually used it. And I didn’t drink three big cups of coffee. I had a small cup with breakfast, and then another medium-sized cup around 2-3 p.m. I had been getting in the habit of having 3-4 mugs a day, which is not good. I have been meaning to cut down – especially since I’ve been having so much trouble sleeping. Today, I was able to make progress. I will probably never completely get rid of coffee, but I can at least cut down. And not drink any after 4 p.m., at the latest.
Towards the end of my workday, I took a look at my list, and I realized I had actually made progress. I’d accomplished a lot — almost all — of the things I have to get done. When my boss stopped by to chat and I told them about another item I have on my to-do list to finish out one of my jobs, they were so happy. They told me they are really glad I’m working with the group. I said, “So am I,” as I was running for the train. All in all, a good way to end a good day.
So there it is. The difference for me between a good day and a not-so-good day can be something as simple as taking notes and paying attention to what I’m doing, from moment to moment. Mindfulness and attention and taking my time. Just being with the things I’m working on — focusing on them, giving them their due. Miraculously — and I never expect this — the more slowly and carefully I go, the quicker things get done.
I’m a happy camper, tonight. And I hope to repeat the performance tomorrow.
7 thoughts on “But today was a really, really good day”
Fabulous…congratulations on such a strong and mindful turn around. You’re inspiring today!
Thanks! There’s no telling what you can do, once you have the proper tools and mindset and the willingness to do what needs to be done.
Yes, reinforce those motivation, initiation, planning skills.
What I like about this is how much you were able to put into action. I am dead tired of learning about it all, educating myself, so much digestion of info, relating to lists of traits. I really want to just integrate and make it happen. See it in real life, which I feel like has passed me by. Damn. Don’t think that way.
Tommorrow is my first appt. with neuro-cognitve rehab. Covered by my Dept. of Voc. Rehab. I am really grateful and have to take my sporadically used day planner. How many times can I hear write it down, take notes before I am able to get into this flow. I seem smarter than that to myself so I just don’t think I need it. How duh-m is that. It’s embarrassing truly to not be on top of things because I don’t plan and keep a schedule. Well, like you are sharing here – tomorrow is a brand new day and for me, a momentous step, 27 years later.
BB and fellow TBI survivors
I have had several thoughts to share but things have been rather difficult for me of late – much of the difficulty is in fact related to TBI. I relay that so that you can appreciate that I very much experience the residual effect of TBI, have indeed felt its impact in all areas of my life and yes, it has taken a great great toll. I do not believe there are magic answers for TBI or pills or perfect strategies or tools or any single thing per se that can undo or restore what has been done.
However I also believe that every TBI survivor has only one place to focus – on the here and now. Perhaps even more important however is that TBI survivors need to understand what it means to acknowledge TBI, to acknowledge that here and now. This seems ridiculously obvious, we all say ‘I had a TBI and that explains many things’. And we may identify patterns and problems in our lives that are the result of TBI. But we are also ferocious, and I assure you I include myself in this number, about not wanting to change anything because of TBI. And that is a huge part of the problem.
BB sent me a link to Orlando’s sight about Models of Exceptional Adaptation which I read – and I keep coming back to certain points;
1. Many MTBI folks are stubborn and have problems in part because they are excessively determined to be ‘normal’, overachieving etc Some of this is probably TBI, some of this is the ‘mild’ part (more severe injuries are harder to ignore whereas being just a little off center makes you fight like the dickens to prove you aren’t) and some may have something to do with the type A personalities that may be more inclined to TBI’s in the first place. MTBI folks have this absolute belief that any fundamental change in their approach is the equivalent of less than, quitting, defeat, a circumscribed life.
2. The world around us these days also pushes, even demands, that success be achieved through multi-tasking , organizational skills, intense focus, high energy, ability to think on ones feet, good communication and social skills…..all the stuff that gets banged up for mTBI folks. This culture isn’t likely to change, it is fostered by technology, by money, a lot of complex Western culture thinking – and so everyday the mTBI person is challenged to push themselves in ways that place heavy demand. Yet unless you follow along the culture suggests you are a failure – or at least less than.
3. MTBI impacts not only a given cognitive skill or function at the moment but it also taps the cognitive reserve. So that getting through any given challenge may be do-able – but the price is high. Having a lot of high demand challenges on a relentless basis creates a major deficit and burns out the wiring.
Now, what I read in Orlando is this – it seems that each and everyone of those folks says the same key points;
1. They recognize that impulsivity (which includes lack of focus) is a major factor in their post injury cognition
2. They acknowledge that no matter how hard they try they are going to miss ‘head injury behaviors’ as they are happening, that is they cannot see or be aware of what is amiss as they are doing it
3. The only way to re-establish a sense of having your life, YOUR life, is that you pre-empt the brain injury stuff. And the way to do that is pretty standard and consistent for all mTBI folks – and it is also exactly opposite of what our brains want to do – create structure This means that you have a schedule and a routine, that you allow extra me to review things carefully, that you review your plans, obligations, etc daily, that you do not send off emails right after your write them ESPECIALLY if you are feeling any kind of emotional response (happy, sad or angry), that you learn how to ask for time to think, that you take breaks and stop even when you don’t feel like taking a break and stopping because you are on a roll, that you get sleep even though you don’t want to, that you learn to never say more than 7 sentences in a row in a conversation without letting others speak for the same amount of time, that you listen and write down what others are saying, that you map out time allotments of your day, etc. etc etc.
Basically the ‘answer’ to MTBI is lots of stuff that MTBI folks absolutely hate. Lots of stuff that they fight because it feels reduced, circumscribed, limiting. In fact MTBI folks are so determined to not be less than that they ofen go out and try for more, they sign up for more, they take on more, push themselves harder – and then they burn out, blow up and can’t figure out how their lives got to be such a mess. The fact that their brains have lost a sense of internal boundary and structure doesn’t feel real to them – yet that is exactly what has happened, suddenly the world is rich with stuff to do, to read, to pay attention to. So they do all this attractive and interesting stuff then they find themselves in chaos, people are angry and they are defensive.
And then the MTBI folks get mad – they get mad because they feel like there should be answers to how they can function so they can do this stuff , how do they fix themselves they ask – because sure they CAN do any one of the things they are compelled by and so it feels like they should be able to do it ALL – but there are no answers for what they want, there are no fixes – the fix is that they have to create the external structure and control that they have lost cognitively, that they ahve to say no to themselves. And that is unpalatable. It feels like being a race horse who is asked to do pony rides.
And life continues to feel demanding, and the MTBI person gets behind and there is pressure to catch up – and they do what ever they need to do to get it done – but it really is very hard, and no one can see or understand how hard it is – and so then the MTBI person gets mad again – this time because no one understands, because they seem not only normal but really intelligent or capable or whatever – and yet they flounder – so it must be a character flaw. So the MTBI person feels anger and resentment that no one is APPLAUDING at what they are doing – when in fact it looks to others that they kind of just created their own problems. And the cycle goes round and round and round.
Story……………The folks at rehab tell me that I should take a break every 2 hours from any cognitive task and give my mind a rest. Now I have more on my plate than anyone I know and so if I am in a groove asking me to take a break feels like a criminal act. It’s so damn hard to get going in the first place; so I figure, let me just keep on till I can’t work anymore. So I work 3 more hours. Except I really only produce maybe another 30 minutes of decent output – only I don’t see this. What I see is that I did three more hours of work. I may even say ‘I’ll review it just to make sure it makes sense’ – and I review it and it makes perfect sense to me. If I read it again a week later, after a few nights of rest, I would see the glaring mistakes, a tendency to ramble, and confusing sentences. Or maybe not- because the worst part is that the screw-up will not happen EVERY time but it does happen MANY times. If I had enough rest and there aren’t too many other issues facing me, and I get into it – yeah, I can push it and pull the rabbit out of the hat. But I know that I used to be able to pull that rabbit out of the hat regularly – and I can’t anymore. Not only that but because I really pushed it to do those extra three hours I am burnt out – so the next day my cognitive machine is the little engine that can’t – and I sort of wander around mentally, fatzing here and there and wasting a day. (and I feel guilty over that big time) If I denied myself extra sleep I am tired and crabby and feel depressed and out of sorts – doesn’t take much to get my temper to flare. So for the extra half hour of productivity that I ended up wasting at least a day plus and creating heaven knows what other problems to fix..
And that’s what I think the Orlando site (and the good rehab specialists and others) are saying. The MTBI person is a conundrum – they are intelligent, very intelligent – TBI is NOT about intelligence (least as I think of it) – but there is this almost blindness to understanding ones own limits, ones capacity, ones input. We don’t ‘see it’.
It’s this blindness that I think is why Orlando says write stuff down. Because we only see in retrospect – but once we have the evidence we can come to the reality and start to accept that this isn’t simply our wife or Dad judging us (well, they could be judging us – but they have a point, only it’s the wrong point – and that ‘s the problem) but there really is a rent in the fabric somehow. While there is some value add in identifying your particular weak spots I have to say that I find a remarkable universality among MTBI folks in what the issues are. To me the writing it down is an awareness lesson – awareness about that common problem that all tbi folks face.
MTBI folks can self destruct their lives even with the best of intentions and the hardest of work. MTBI folks love to run the engine dry and it is one of the WORST things they can do. And the more times you do it the worse the effect. Just like if you keep driving your car till the tank gets to empty and beyond, after a while you wear out the parts. And the pattern, is so frequently like this – overload, push hard, burn out, blow up – that it’s inevitable we will just damage ourselves in the process.
TBI folks lose the ability to create an internal thought structure – so the scheduling, planning etc is a way to impose that. Since MTBI folks cannot see any given act of impulsivity or randomness as it occurs the creation and adherence to a formal structure prevents the problems. Now I know that you feel (as do I frequently) that TBI folks can actually develop their own natural compensations, especially if they aren’t held back by those bad limiting people who say we are ‘damaged’. So here – think about this – a few clues that someone has a MTBI:
§ They tend to write – a lot. They ramble and ponder and chew away over and over, going in circles.
§ They tend to talk – a lot. They ramble and ponder and chew away – and often are given to distractions which cause them to lose track of what their point is.
§ They may talk fast and interrupt. Both this and the tendency to talk a lot contribute to the impression that they are displaying mania and get them psychiatric diagnoses.
§ They often have pockets full of scribbled notes, several varieties of to-do lists, most of which are not dated and do not have anything crossed off, even if it was done.
§ They have several projects going on at once
§ They seem fascinating for the breadth of knowledge they have
§ They are a little doofy
§ They are fascinated by many, many, many, things.
§ They can get excited quickly – both positively and negatively. Again, this contributes to an impression of mania.
§ They get frustrated often because they have a sense of being blind to something but they don’t know what they are blind too. This may demonstrate as puzzlement over why something didn’t work out, or overly optimistic interpretations (or overly pessimistic), things like lots of traffic tickets (I didn’t SEE the stop sign), arguments with people when others place demands on them (it feels like so much), late assignments, unpaid bills, difficulty with routine, difficulty getting even pleasurable projects underway (like getting it together to go for a hike or to the beach).
§ The frustration can segway into depressions – after overactive thinking and the failure to accomplish the MTBI person is at a loss – will they ever be able to live their life? – and this impotency makes them feel helpless – and then produces depression. Which can add to diagnoses of mental illness, particularly bipolar disorders.
Much of the self-compensatory behaviors that MTBI folks adapt – the writing, the fast talking , the notes everywhere, are simply ways to function. But, from the outside it looks disorganized, confused. Yet they DO serve a purpose – The MTBI person and others may or may not appreciate it but the excessive talking and writing come from not being able to organize your thoughts in your head quietly – so you need to get them out and hear/see them. Likewise you rush to speak because you need to talk before you forget. You attempt to use tools like paper notes etc but because you have multiple methods you end up looking more scattered. Furthermore, driven by a lack of good controls and a need to demonstrate that one is indeed intelligent the pursuit of any idea or thought has great appeal and feels good – your brain after all runs on ideas. So you get scattered and distracted and overwhelmed. It’s important to see this because the naturally occurring compensatory skills DO have value and can be helpful – BUT they can also become problems in their own right. For example writing things down is good – but the tendency to go overboard in reports and essays for work is bad. (and yes, this response is overboard…..but I figure it’s okay cause my audience is MTBI folks and you will understand….)
In a similar vein —- I have major balance problems – can’t walk a straight line. Yet I took on innumerable physical challenges AFTER my TBI that literally defied the laws of logic on this. How was I able to do it? I ‘borrowed’ from my cognitive resources – I taught myself to ignore the sensations of loss of balance and confusion that resulted from moving fast or turning quickly, I ignored the nausea, repressed the feelings. That may seem like ‘toughing it out’ – BUT what was going on was this. I had damaged my ability to integrate data from my environment for balance, and some data was not being used at all so I was heavily dependent on visual input. Trying to make sense of where I was located in space with less than the full set of info meant my brain had to really work at puzzling this out – indeed, because balance and location are primitive functions they took more cognitive energy than reading War and Peace – so I could only do one or the other – and I tell you during the time that I undertook all this physical activity I did not read much Tolstoy. But I didn’t realize that the reason why I couldn’t read a book was because I had drained my ability to focus on a story line.(and it wasn’t just reading that was impacted – focus, attention, initiation, etc – they all took a cognitive pay cut because of this) And conversely because I couldn’t read I had to do something – so I did physical activity. Catch-22.
So finally someone in rehab made this connection for me. Now I tell you that in my opinion much of rehab is really just about professional nagging. And so the ‘fix’ for my balance issues is simple – just do these visual integration exercises every day for 20 minutes – first thing in the morning to retrain my brain. I have to ALWAYS do it because if I stop for any period of time I fall back. But guess what – I rarely do them without nagging. I hate doing them – they are boring and I always feel that I have so many other things to be doing then, thinking things, activity and this requires just sitting and looking at a pen or a playing card. So I don’t do them – and you know what – I pay the price, I can feel the difference.
So I am working on it. But its not so easy. My brain does not want to start off the day with eye exercise, it wants to start off with THOUGHTS ! It seems so obvious, so easy – and yet it is not.
And so when I don’t do these things and I get drained I tell myself the answer is to push HARDER so that I can get things done and be myself again.
EXCEPT – here’s the kicker. Sometimes we DO have to push harder, sometimes the world demands it, and sometimes we can do it and not pay mightily, and sometimes people are jerks and they deserve a (mild) dose of our wrath, and sometimes we have so much on our minds that being forgetful is natural. Some times other folks do mess us up and we are correct, and sometimes our brains are well, brilliant. Sometimes it ISN”T TBI!!
But not always. And what is worse is that there is not brain injury-o-meter that we can strap on and say ‘ooops, this is a misfire’ or ‘yeah, we are on target’. We have no empirical way of judging if this is a brain injury moment, or whether it’s just part of life, of whether this action is needed and wise, or whether this action is going to cost more than it will provide. We look fine, act fine, seem fine to the world around us – even to ourselves. And if we do something weird, well we all believe in volition and self control and so surely it’s a question of character or effort. So we get judged, by ourselves and by others – and if we doubt ourselves (and we all do) then we consume some of that judgment (plus no one is proud of brain injury behaviors). And we do develop psychological issues as a result – which we then compensate for – particularly by being defensive and working hard.
So we can’t look outside for ‘truth’ and we can’t look inside for ‘truth’. So what can we do?
Okay – so, while I still don’t regularly do my rehab exercises (because of course, I know that I don’t have the time in the morning because that is when my brain is fresh and ready to go and I don’t want to sit quietly and do eye exercises) but I do at least pay attention to my symptoms – and so if I notice a little nausea, or I find myself tipping or dropping things or pausing and wondering – now, what was I doing? – then I know that I am getting low on gas, that I have to slow it down and try to focus and move carefully. At least I have gotten to that point. But it would be better still if I just built in the stopping points, if I did the exercises, if I limited my movement in visually stimulating scenes – if I pre-empted problems instead of just worked around them. That is exceptional recovery.
Likewise, since I don’t have a good structure in other ways, I have to pay attention to the cues that I might need a little lassoing, am I talking too fast, too loud, too much? Am I making jokes or quips that might not fit in with the people around me? Am I making tiny mistakes, using the wrong word or getting stuck on a word? Have I ‘read’ a page and understood nothing? Then I need to stop, completely stop, and clear my mind and breathe and think of NOTHING for 10 minutes, 15 if I can. I need to let it go. And boy do I hate that.
Now I will tell you that every single tbi survivor I know does this; every single one goes through this long process of not seeing and impulsive action and frustration and sense of not being understood (because they aren’t).
But interestingly what I think Orlando’s success stories say is this – that the way they eventually succeed is when they come to see that structure is part of their repertoire And then they proactively create the structure externally or in activity that they need, the structure that their brain in scrambling to form – but they do it not as a crutch for brain injury behaviors – but rather, by being preventative and making it part of their life routine – they are almost moving away from the idea of tagging these things are ‘brain injury’ compensation – they become just good ways to live their life.
This is in many ways what I felt my first NT in rehab did for me; I would say to her, over and over and over ‘Do you really think I have a brain injury?’ – now, understand this is 2 years after my accident, neuropsych tests demonstrated it, specialists recognized it, and I knew it theoretically – but somehow I felt like having a brain injury was a cop-out, too easy an answer (boy, do I now know it is NOT an easy answer). And she would say to me, over and over and over – ‘What does it matter – lets address what the issue is and figure out how you can address it/prevent it/etc’. After a couple of years of this it made a big big difference – I felt better about myself, more in control of my life and my brain, and I wasn’t asking if I had a brain injury anymore, nor did I have to prove that I didn’t. I rarely got depressed or even too frustrated, though at times I still got hyper when tired out and I have to watch that, because I am tired I feel like I have to push harder which is bad news.
When I first started with this therapist I reacted towards her like I would with most therapists; theoretically believing they had something to offer but inwardly doubting that there was much value for me. Ultimately she has been an invaluable part of my recovery – but it did take years. Only now do I understand better her approach.
I had previously mentioned to you the article Emotional Consequences and Psychotherapy for Individuals with Mild Brain injury. This is an excellent and important article which gives clarity to the psychologists role with a TBI patient. The authors identify 3 psychological issues relating to TBI;
1) premorbid state, that is whatever psychological and status issues you had before you were injured including familial and social relationships, education, age, income, biology, etc.
2) organic personality changes that occur directly from the injury; this is what you were referring to in a large part, dyscontrol or explosive behavior from frontal lobe damage, or heightened emotionality from temporal lobe problems etc. These are behavioral changes (or exaggerations of previous behaviors) that are the result of injury and NOT the result of emotional dynamics. They may or may not improve over time without assistance,
3) reactive and adjustment issue that are directly related to the brain injury. These are very important to recognize and understand because they can set off a chain reaction of behaviors/consequence. As the article says ‘the compromise of adaptive cognitive skills represents an important factor in the development of emotional disturbance following a brain injury due to loss of self esteem and reduction in ability. In other words you WILL have an emotional (not organically based per se) reaction to the injury. This is a perfectly reasonable expectation; for example most comprehensive cancer treatment programs fhave therapists who specialize ins helping individuals adjust to cancer treatment/recovery. Having your brain altered is pretty significant. This aspect of therapy is geared to helping a person confront their emotional reaction so that they CAN make the adjustments and do what they need to have a full, robust life. Eg. – get past denial.
What is often tricky is the overlap of these components. If you had some inter-relationship issues in a marriage before the accident but were able to get through them they may come to the forefront now, especially if they are exacerbated by impulsive and explosive behaviors that are organically driven. Equally however there are many consequent emotional issues that are responses to your injury; in fact there WILL be absolutely. You may develop depression, dependencies, social withdrawal or other responses to life changes. You may become more intense, a workaholic – but still not do well in your job. You may resist offers of assistance, and be more isolationist. Treatment of these issues is also a very important part of the overall treatment program, and it does require that the patient deal, to some degree with feelings and self-insight.
In rehab this process is often involved in what they call ‘acceptance of the new self’. It is not a simple process by any means. Since it is hard for patient or therapist to easily distinguish between premorbid and organic issues the focus is initially to enable management of behaviors as though they were organic. The focus is on strategies and alternative approaches to behaviors. The intricate relationship between the organic and the reactive psychological issues is very important in treatment. When this is done successfully it will have many positive consequences;
1. Giving the patient a sense of self control and life management which will reduce self formed stigma about their injury (and make them more open to both acceptance and change to empower them better). I believe that many of the problems that TBI survivors have is that they have such a strong negative association with the acceptance of the impact of their injuries that they consequently refuse to acknowledge what the injury means and does. I also believe there is probably an organic element to that (a variation of agnosognosia) but it goes beyond that. It seems to me that the milder TBI’s which are experienced by highly intelligent and driven individuals present the most difficulty. Mild TBI’s can be so subtle that the impact is hard to detect – but for a driven and intelligent person they can be very damaging. Such individuals may have a propensity for cognitive compensation skills of some kind – but if you are compensating and aren’t aware then you could be compensating in a poor way. I think that these individuals are the most determined to prove that they are okay and can be successful and the least willing to make changes or accept differences in a real way. They frequent doubt that they have a real problem (in part by society’s dismissal of anything emotional as not real) and they do not like having to be different than they were before. Even if they don’t see the change however they DO have so much of a sense of ‘self’ that they go charging down that pathway over and over again. Their brains just cannot let go of habituated cognitive responses easily.
2. Reduce the negative consequences of organically based behaviors by teaching a person how to address those behaviors. This process of ‘retraining’ response can be timely because you are literally rebuilding the brains reactions. Depending on the kind and extent of damage the therapist will work with the patient to identify reasonable strategies and goals. These also may change over time as the patient’s brain heals.
For example initially my short term memory was very very bad. Conversation with others was difficult for me; whether it was looking for a job (or volunteer work) or socially. I was very self conscious about this and so, to make up for the gaps I would ramble, confabulate, get angry or whatever. I learned to stop and ask others ‘what were we talking about?’ – it seems very obvious of course but in truth it was not obvious to me. And most folks do ask that question now and then so it didn’t make me appear the fool. In my interaction with my therapist I would identify struggles, big and small, and we would work out ways to address them. Another problem that I had was that I could catastrophize at the drop of a hat, and became very anxious – which impacted my cognition and made focus harder. Again, there were strategies for addressing this. A KEY element for me however was that when I would ask – Is this brain injury the therapist would say ‘does it matter?’. One of her big goals with me was to move away from the response of being damaged and let me discover my ability to self-manage.
Premorbid issues may have to be addressed alongside of organic issues. However it is hard for patient or therapist to know what is pre-morbid, what is reaction etc. In your case this may be very difficult since you had so many injuries over your life span. So again, it may be good to move away from the idea of emotional dynamic and valuation to simply ‘what can I do’.
You are right about people either treating you like your are an insfferable selfish idiot – or they sort of box you in and whisper ‘brain injury’ if you cross your legs funny. And that’s tough to deal with.
The impact on a TBI survivors life is enourmous – here are some stats:
§ Unemployment rate of individuals with TBI ranges from 50-80%.
§ Approximately 75% of individuals with TBI who return to work lose their jobs within 90 days if work supports are not in place.
One year following TBI:
§ Number of employed persons fell from 69% to 31%.
§ Number of unemployed increased from 11% to 49%.
§ Average earned income per month declined from $1,491 to $726.
Assuming this study is representative of national statistics for TBI, first year post TBI is associated with $642 million in lost wages, $96 million in lost income taxes, and $353 million in increased public assistance.
MY NOTE: Yet, despite this there are NO organized or well designed approaches to assisting mTBI survivors with employment that helps them retain their economic viability – even if they are totally capable..
Fraser and Baarslag-Benson (1994) identified key barriers for return to work:
§ Emotional concerns.
§ Physical and motor impairments.
§ Pre-existing character or behavioral difficulties (might have been in place prior to injury
§ Lack of awareness of injury, inability to read others’ emotions, disinhibition and emotional lability all were associated negatively with success at the workplace (Making it difficult to discuss accommodation with an employer). Dikmen, et al. 1994.
•Within a year, many had lost all prior friends
•Over 90% of marriages dissolve.
•The parent/child relationship is damaged.
•Careers & educational goals shrink.
•Extended family networks are destroyed.
•Community roles disappear.
It is very very hard to know how much to tell people – to seek understanding without being treated in a pedantic or pathetic manner. You are not less than – but you do have issues. VERY few people understnad that.
To your point that people with tbi might be better off without any rehab per se especially if they are judged – that is a tricky one
Yes, people judge you if you have a TBI nad they can and will put you in a box – and I know that is infuriating.
But Rehab is helpful – even if its just for the nagging and the outside view, Family nad friends cannot do this without creating issues. Sometimes I get really pissed at the folks at Rehab (not that I get enraged with them but I do not agree with them) – but because they are more or less neutral parties and are trained to deal with my defense its okay. Plus sometimes they can be wrong but its not an emotional issue for me either way.
A good neuropsych and good rehab therapists are important and can make a difference. The problem is that there isn’t any way to identify who is good – and particularly who is good for you. A person could go through the Harvard of Brain Injury training and not be a good therapist (either psych or cognitive or PT) and others can have no training and just be naturals. My first NT was great for me – though I would have never guessed that she would be in a million years – my initial take on her was that she was just ‘humoring me’. A second NT (different program – the funding source changes the therapist…) was good but not quite as good – she didn’t know how to get me to the answer myself, she was more used to telling her patients the answer – and I need to feel it from me. Or maybe it was something else. But then, it is also a learning process and I think she was getting better as she came to understand me. It takes a long long time to make this work. My first NT was a 3 year relationship.
You are also right about not medicating people and assuming that these are mental illnesses – furthermore much of this medication actually impairs cognition and so it worsens the symptomology making the survivor struggle more and feel more depressed. One of my great irritations about society is the over-medicating we do for every emotional response – half the problems are more easily and safely solved through compassion, community, activity, patience, listening, support, etc.
The TBI road is a hard one – on one hand I hate sitting around moaning about how hard TBI is – I have known folks with brain cancer and ALS and I think – boy, my life is a breeze. But that doesn’t really diminish the struggle either. So I try to think about it not in terms of ‘woe is me’ but simply about what do I have to do to reach my next set of goals, how can I make an adjustment or find the resources for this. Rehab gives me some clear clues and sites like Orlando, and just a slow slow recognition of what has happened. Perhaps that’s another key point – this takes a lot of time. You cannot rush a brain to heal. It takes YEARS – I still, 4 years later, have cognitive recovery that exists, I believe, out side of any rehab effort or anything. It took 4 decades or so to build my first brain and so I figure it may take a bit of time to build this new version. Be patient, be kind to yourself, be gentle. I have friends who are 12 years post last injury – and they say they are still gaining skills – small things, things that you don’t realize till you get them back but it happens.
You are doing many good things here and for yourself – once in a while take some time and reread your posts – you will see some of the pattern of behavior that you exhibit and you will see your own ‘truths’ and denials. But the bottom line here is that you are striving to improve your life, to live wholly and productively and to use your gifts. That is all good and you have every reason to be proud. Equally it’s okay to accept that you cannot always see things and that the NT or rehab folks can give you insight and strengthen you as well. That isn’t a sign of weakness or damage – it’s just like using an ekg to ‘see’ your heart functioning. You aren’t really broken – just morphed.
Hey M –
Glad to see you’re back, MTBI issues notwithstanding.
Will respond more in depth to your awesome comments, when I have more time.
But for now, where can I find how to get hold of the paper “Emotional Consequences and Psychotherapy for Individuals With Mild Brain Injury”? Would I need to go through my library? A local college/university? I’m a bit short on cash, at this point, and shelling out $30 for an article is a little out of my range, right now.
Right-o – hear you on the 30$ – let me see where I can dig it up and I’ll send you the link.
Thanks a mil