A do-over makes the difference

I had a dream about my diagnostic neuropsych last night. It was a really cool dream. We were trying — as usual — to find time on our calendars to schedule our next session, and we kept getting our wires crossed and missing each other when were trying to connect… and running into each other, when one or both of us didn’t have our schedule on hand. It was actually a really nice dream, because they were very kind to me during all of it, and the weather during the dream was sunny and bright and mild (quite unlike what it’s been like in real life for the past six weeks). And even when we were getting our wires crossed, there was still an element of humanity and civility to our interactions that was, well, civilized. It was breath of fresh air, in the midst of my dreamworld confusion. I woke up feeling a bit frustrated, but also very soothed.

I think I’m surprising both my neuropsychologists with my uncanny ability to not only get by in the world, but to also thrive. My diagnostic neuropsych says my ability to adapt and improve is “phenomenal” and they’re openly amazed at my ability to turn around wretched circumstances and come out on top. My therapeutic neuropsych is still handling me with proverbial kid gloves, taking it slow and trying (often in vain) to temper my eagerness to push my limits in life. Slowly but surely, they’re getting a clearer and clearer view of how capable I am of taking care of myself in some respects, while in others I’m wandering around in the dark. This post (however anonymous it may be… they may never read it) is dedicated to both of them.

I’ve been thinking a lot, lately, about the impact that TBI has had on my life over the years. I’ve also been thinking a lot about the ways in which it has not had an impact, or in some cases actually led to experiences and successes I might have never pursued, were I not neurologically compromised.

For example:

  • If I had been better able to interact with others and communicate — and understand what was being said to me — I might  not have pissed off and alienated the editors I worked with… and I’d be a published author by now. I might not have had to learn how to build web pages to put my writing online.
  • If I had been better able to handle heavy-duty job responsibilities, I might still be in middle-management (or even upper management), making okay money and having no life. I probably never would have learned to code (and might have resisted learning to use a computer till late in the game), and I may never have thought of going into the high-paying software business, where work-life balance is more precarious, but also more “customizable”.
  • If I had been better at risk assessment, I might never have traveled and moved around as much as I have. I probably would have “known better” and played it safe, never seeing the outside of my home state, let alone the USA. I probably never would have considered living abroad, if I’d been able to make it just fine, here at home.

Funny, how that works. A lot of what I’ve done over the years, no “sane” person would do — I’ve taken big risks, personally and professionally, and I’ve probably been luckier than I’ve been smart, over the years. But long story short, it’s all turned out pretty damn’ well, and this morning, I’m sitting in my own study… in my own house… overlooking my own back yard in a gorgeous and very affluent part of the United States. I’ve got (somewhat dependable) cars that are paid for in the garage, I’ve got a kicker job, and I’ve got a spouse who loves me with all their heart sleeping in the master bedroom. I’ve got family who love me (as inscrutable and problematic as I may be at times), and I have friends who love, appreciate and support me. I’m not the richest (or even the most solvent) person on the planet, but I’m getting there. Even without the money thing all hammered out, I’m one of the richest people I know.

It’s Independence Day, so I suppose today would be a great time to talk about how I’ve managed to do so well for myself, even though I’m most definitely neurologically compromised. Despite no less than nine mild traumatic brain injuries (one assault, three falls, three car accidents, two sports concussions, and probably more injuries that I’ve completely forgotten and just took in stride — gotta get back in the game!), I’ve managed to really thrive in the world, taking things as they came and learning a lot as I went. I’ve had more near-disasters than I care to think about, I’ve had a number of brushes with mortal danger, and I’ve had to rebuild my life over again, more than once.

But in spite of all that, I’m happy, healthy, more or less whole, hale, and hearty. And I have been for years. I have issues. Of course I have issues – who doesn’t? I have experienced tremendous difficulty in navigating things that other people take for granted, and there have been plenty of times when I was flying blind. But for all that trouble, I’ve still managed to do well. When life gave me lemons, I made lemonade. And lemon meringue pie. And lemon drops. And I seasoned my cooking with lemon zest. Figuratively speaking, I’ve eaten and drunk a helluva lot of lemon-flavored stuff over the course of my life. Sometimes it was sweetened, more often, it wasn’t. But I took the bad with the good and did my best with it.

I’m not going to say my TBIs were “the best things that ever happened to me,” as I’ve heard others proclaim. That would be a lie, for they have made my life more complex and painfully awkward than I ever wished it would be. But I will say that my injuries have been a lot less logistically debilitating to me than a lot of people (including trained professionals) seem to think they’ve been — or should have been. And I believe the reason I have done increasingly well over the years, is, I never gave up. A whole lot of times that I messed up, I got a do-over… and I took another shot at what I screwed up the first time.

It’s true. A do-over makes the difference. All those times I mucked up what I was trying to do… I can’t even count them. I’ve messed up relationships, good jobs, simple Saturday chores, volunteer activities, money management, health concerns… you name it, I’ve probably made a huge mess of it, at some point or another. But as long as I got a second chance, it wasn’t the catastrophy it might or “should” have been.

Second chances are like my lifeblood. They’re the stuff that keep me going. People who know me say I’m too hard on myself, when I think that I’m going to mess something up when I first try it. But they haven’t walked in my shoes, and they haven’t seen what a terrible mess I’ve made of so many simple things.

Like the time I was jump-starting my car for the first time on my own. I’d seen it done lots of times by plenty of other people. I knew how you put the clamps on the battery terminals and let your car charge off the other running car. I’d even helped other people jump their cars lots and lots of times. But the first time I tried to jump-start my own car, I got the terminals mixed up, and sparks started to fly and the plastic around the handles started to melt, as the wires heated up to a bright glowing red. I grabbed a stick and managed to pull the cable handles off my battery before both batteries blew up, so no animals were harmed in the making of that movie. But things could have turned out worse, and we could have ended up with two busted-down cars, instead of one.

And like the time when I was putting together numbers for work, collecting all these performance stats to show upper management how well we were doing. This was, needless to say, a very important report. Well, I found a set of numbers that fit the criteria we were looking for, and I compiled this great-looking spreadsheet with graphs and everything that showed our performance over such-and-such a time. Everyone was pleased as punch with my work… until they saw that I’d pulled the wrong numbers from the wrong timeframe and the wrong servers. My end-product was fabulous, but it applied to an alternate universe. And my hours of work were for naught.

And like the time when I was making great progress on this website I was building. I did an awesome job at coding it up quickly and timing everything out so it would be ready to launch on schedule. The only problem was, I forgot to test it in this one browser that everybody knew was problematic. It had completely slipped my mind. And by the time I looked at the website in it and realized that stuff needed to change, I was starting to fall behind schedule. For someone in the web development business, this is just basic, fundamental stuff — you test in all browsers before you launch. But I’d forgotten. And I blew my deadline. And pissed off the project manager who had been so happy with my work — and had told everyone what a great job I was doing.

I can assure you, screwing up the first time around is not a foreign experience to me. But each of the times I’ve screwed up, I’ve learned a great deal. And frankly, I’ve learned more from my failures than from my successes. I just needed the chance to try again.

All I’ve really ever asked for, was a second chance. Seriously. I know I’m prone to make a mess of things on my “maiden voyages”. It’s just in my nature. I’m not being hard on myself. It’s objectively true. Ask anyone who has known me long enough to see me go down in flames… and they’ll confirm it. But they’ll also confirm that I have an uncanny ability to rise from the ashes of my own catastrophes, take my medicine, take my lumps, and climb back into the ring for another round. And when I get my head about me again and figure out what I did wrong, the first time through, I can adjust my performance to do the exact opposite… and come out shining far more brightly than many a person who gets it right the first time around.

When I look back on my life, I have to say the worst experiences and relationships and jobs and activities I’ve had, have been made that way by lack of a second chance. Sadly, my father is one of those people who has to have things done 100% correctly, the first time through — or else. And my mother has not always had the most patience with my flawed interpretations of her instructions. They got it honest — all my relatives and neighbors and other people in the area where I grew up were geared towards getting it right the first time, or else. They had no tolerance for messing up terribly, the first time through — especially by someone as ostensibly smart as I was. They just couldn’t see why I was so prone to screw-ups. Certainly, I must not have been paying close enough attention. Or I was lazy. Or I was weak. Or whatever.

What they just couldn’t see was that I was trying like crazy to get it right, the first time through. I was — I really was. But I didn’t have enough information about how to do it 100% right. Spoken instruction only went so far. Being shown things only went so far. I had to try my hand at things and find out what not to do, in order to find out what to avoid, the next time around. The times when I got a dry run to practice, I was more likely to succeed. But when I was tossed into the deep end, the first time through, I sank like a rock, as often as not. And there were far too many failures to list — and far too many occasions of people not thinking to give me another chance. If I screwed it up the first time through, what made me think I could get it right, the next time?

Thing of it was, I could get it right, the next time. In fact, the worse mess I made of my endeavor, the first time through, the greater the likelihood of me hitting a home run, the next time around.  My very low tolerance for imperfection would never allow me to make the same mistakes twice. I just couldn’t do it. Unfortunately, too many people are not built that way, and they don’t realize that some of us are. They think that true achievers get one chance and one chance only to make their mark, and if you have to keep trying, it means you’re just a wanna-be poser whose prone to biting off more than they can chew.

Well, maybe I am a bit of a wanna-be, and maybe I do tend to bite off more than I can chew. But you know what? I’m driven. And I don’t give up. And if I keep trying, and if I keep learning from my screw-ups (which are so, so many), and I don’t give in to the criticisms of others (and myself), I can really make a difference in my own life and in the world. I can actually attain at least some of what I set out to achieve. And even if I manage to meet only 75% of my set goals, if I set my goals at 200% of what others expect me to be “reasonably” able to do, then I have a chance of achieving 150% of what others expect of me. So there.

And that to me is what true Independence is all about —  knowing both your limits and your strengths and using them both to complement each other. I know I make a mess of things. I know I have a hard time with some pretty basic stuff, at times. I know I tend to overstep my bounds and over-reach. But I also know I’ve got this taproot of faith in cause-and-effect… this logical conviction that if I just keep going, feeling my way through, keeping an open mind and actively learning and putting what I learn into action… I will eventually get far beyond what anyone ever expected of me. And I will achieve nearly everything I have my heart set on. No matter what my brain may be capable of, I also have heart. And my mind — the sum total of my spirit and my brain-power and my instincts — will always keep striving for what is better, what is best, what is highest, what is … progress.

Yes, when it comes to getting things right, a do-over makes the difference. I may mess up the first time through, but a second chance makes everything better. It lets me redeem myself by getting it right the next time. It gives me the opportunity to salvage my experience by using the lessons I’ve learned to make right what I’ve done wrong. It lets me prove to myself that I’m not a total loser. It lets me prove to others that they can — ultimately — depend on me, if they just cut me a little slack and give me another chance. They simply need to resist the temptation to give up on me… understanding that I’ve got my limitations, and that I may need another shot, in order to get the task they’ve given me absolutely right, but I will not quit until I get some satisfactory results.

I can get it… I will get it. I just need to be given more chances to get it right.

Author: brokenbrilliant

I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot. I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life. It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.

10 thoughts on “A do-over makes the difference”

  1. Hey BB,

    Sorry for the long delay in getting back – been caught up with a few things.

    As regards your last response, about me contributing – sure, that would be great! Perhaps if you gave me an idea what kind of post you think might fit, etc. I’ve really only started writing about my own mtbi in the last year or so and am still trying to shape the injury, how it’s affected me and so on . . .

    I find the parallels between our situations amazing. I have been struggling as a writer as well, and I’m sorting out how my various injuries have held me back – everything from concentration, focus, and being organized enough to deal with editors, the industry in general. The current publishing environment doesn’t help of course, but I’m trying to find strategies to get around my limitations – to understand those limitations and move beyond them.

    I was very interested to read you got into coding. I’ve just started teaching myself coding now (starting with html and css) with a view to making it a more serious thing. The thing is, I found for years after I was injured, that I couldn’t spend any serious time in front of the computer – the lights, the effort needed to focus, gave me bad headaches, with the result that up until a year ago I hardly used the web at all. Then last spring a friend gave me a copy of Adobe CS2 and playing around with it, I discovered how much I loved it, that, owing either to better screens or my improved condition, I could spend a lot more time on the computer (though I still have trouble reading long blocks of text or, for that matter, code, on the screen), and recalled a very early love of coding from when I was in high school (using basic and C).
    How do you find working on a computer all the time?

    It is worth asking how one’s life would end up if an injury hadn’t happened, and I’m going through the experience the last couple of months of wondering about the person I was before the injury, comparing the before and after. It’s a little strange, like seeing myself from the outside, but a necessary step I think – part of moving on.

    One last query: is it possible to subscribe to your blog? It would be much easier for me if your postings were to show up in my email as they happen – absent-mindedness, sadly, continues to be a problem . . .

    Best,

    city of strangers.

    Like

  2. BB –

    Sometimes after I read your posts I understand how frustrating I must be to the folks at rehab……here’s what I mean by that..

    I briefly looked back over the rhythm of your posts and this is the (very general) theme:

    1. You analyze your struggles in life and how BI has held you back (and how much you have accomplished despite this)

    2. You get psyched for a system that you believe will empower you to do and be all that you can – a system that will minimize or even eradicate BI aftereffects

    3. You use the system and it works well and you are pleased

    4. You get frustrated and defensive because something has not gone well despite using the system

    5. You decide that no system fits you and you need to make up your own

    6. You go back to the approaches you have used, which have allowed you to function at a reasonable level

    7. You overwhelm yourself (lack of sleep, too much pressure, too many things to do) and you meltdown

    8. You feel remorse, anger, self recrimination about the melt down

    9. You recover and start again with analyze your struggles

    It’s not an exact pattern but it’s close. The reason these posts give me compassion for the rehab folks is because I have these same perspectives. On one hand I KNOW that certain things are good for me, on the other hand I have reasons for why I have to do it my way. When I see someone else saying it however I recognize that I too create a pattern and this pattern is part of the problem. But it’s only when I connect the dots that I can appreciate the need for change. Brain injury seems to give you an up-close view of things and you lose the bigger picture so you don’t connect the dots as well.

    There are several reasons for this:

    1. Brain injury is self-deceptive. Write that in BIG letters and tape it to your mirror. It is one of the most important things you can understand. Knowing this is not meant to undermine your confidence or ability – rather it is something to consider when you make a decision, take an action, desire something, think something, respond etc. In truth it may be that all brains are self deceptive but the TBI brain is brilliantly inconsistent in its self deception because of injury. BI persons should ALWAYs give themselves reflective time before acting on a thought or decision.

    2. However, just because BI is self-deceptive it doesn’t mean that others are always right. Tape that to your mirror as well. You do have a sense of yourself and it is important to articulate that as a tool for your own improvement. Clarifying your thinking is not being defensive, it’s working through what you want, need, etc. It’s solution based, not justification based. That’s an important approach for the BI – we tend to feel a need to justify ourselves rather than identify the problem and a way to solve it (probably because our actions may give the
    impression that we are not capable and so we feel a need to explain).
    3. Brain Injury behaviors and symptoms are subtle and intermittent. You can have a good day, a good week and then find yourself in a fog for days. This makes it harder for yourself and others to understand.

    4. Some BI advice and wisdom is wrong and can hold you back.

    5. Some BI advice and wisdom is correct but we don’t like it because of the BI. BI resists structure.

    6. BI advice, methods, tools, systems, whatever WILL NOT change your life, they will not make you a superstar. That will still be up to you.

    7. NOT having some workable, reasonable system to manage life with a BI WILL change your life – for the negative.

    8. Even good systems and advice are theoretical, that is they are based on the ideal. The problem with mTBI is that many of us folks are out in the world making our way and stumbling around. Many of us are older and dealing with a recession as well. We don’t have the comfort zone for transitions back to work, part time work, etc that would allow us to move slowly back into the workplace. People depend on us financially. It is hard to balance the demands of the world and our pre-injury lives with our current needs, and the healing process.

    9. People also depend on us emotionally, in relationships, as parents, spouses, children, etc. It takes a lot of insight and thought on the part of others to understand BI – especially given that most professionals in the field don’t quite understand it.

    10. Bosses and businesses, banks, creditors, etc definitely DO NOT understand brain injury, nor do they want to. Nor do they need to. We have to accept that if we want to live in their world – and we do.

    11. Everyone, even those without BI has some degree of up and down, procrastination, overload, confusion, temper flares, off days etc. This makes it hard to distinguish between what is ‘reasonable’ and what is BI.for us, for others, for the diagnosticians.

    12. The overlap between psychological issues and brain injury issues is very complex and cannot be teased apart. Thus family and therapists MAY see things as emotionally based and reactive (and some of it will be). This will result in dynamics and judgments which are difficult to overcome. You will need to learn what matters and how to address it. Sometimes these issues can be overwhelming – but aware that emotional issues will exacerbate brain injury issues.

    13. Rehab folks range in their effectiveness and insight. Again, it is tricky to know when you are not getting what you need versus your brain resisting help and insight. You should, at a minimum be able to discuss comfortably your resistance to advice with any therapist – and you should feel okay with the outcome of that discussion. You are and should always be an active participant in your efforts towards recovery.

    14. Using structure & planning is not limiting – it is freeing. If it can help you avoid 50% of the problems you create from BI it gives you that much more time and energy to indulge in whatever you like. And it makes you feel good about yourself – instead of handicapped. Programmers, marketers, artists – it doesn’t mater what you do – some organization of life is helpful AND it will help you prioritize which is something we ALL need.

    15. Extremes are generally not good ideas. If you find yourself inclined to work excessively to catch up, lose sleep, socialize with more people than feels good, tackle too many chores in a weekend, exercise for hours etc, you are experiencing BI thinking. This thinking does not see the overall picture and does not have a good perspective on what is reasonable – it self justifies. RARELY is it the right answer.

    16. Brain injury makes sustained focus hard work. That includes the focus needed to pursue a system or approach over a long period of time to improve our lives. This focus often looks like motivation and may be related to motivation (which is partly why I think we like to push hard and get things done, because we know that we may lose track) but it’s not a character issue. It’s that our brains wander and get restless – because they cannot see ahead and keep that in mind.

    17. Recovery really is hard. It is work. It takes effort, diligence, lots of setbacks and stumbling. It is embarrassing, humbling, humiliating and is often secret because we cannot explain to bosses and family and acquaintances that ‘sorry, our brains are healing’. We have to learn to do things at midpoint in our lives that we do not like doing, that feel uncomfortable, that we struggle with. We get angry over this. Our brains make up stories about how to get around the effort. We avoid it. But the bottom line is that it takes work, and work that will feel like work.

    18. No system or compensation or anything is absolute. The brain continues to change, to heal, to improve over time. There is a fine balance between pushing it so that it will continue to improve and stressing it so that you will get set back. The goal of any approach is to consistently monitor your efforts and thinking and your outcomes to determine if what you are doing IS working. Only you cannot monitor these things over a day or even a few days – you need to see the bigger picture. It’s like going on a diet for a weekend and saying it didn’t work if you didn’t lose 5 lbs. Everything takes time and the BI brain has some changes in time perception.

    19. Only you can decide what is worthwhile for you. You are correct, you are functioning and have done a lot. It’s up to you to decide if this is an okay way to live, if the risk for disastrous outcomes is too great or not. If your relationships are good etc. You are a thinking and capable person who HAS accomplished a lot – and you still own your life, bi or not. But you must decide how you want to live it.

    This process of recovery is difficult and variable – I know people who have done very well with their lives in part because they have focused on one step at a time. Many people struggle with TBI – the changes can be so subtle that its almost impossible for us to see or know what is off – but then we struggle and struggle with mistakes or problems and get no where. Often others cannot help or make it worse – even those in rehab. Like you I don’t want to be boxed in, limited or treated as less than – either in life functional capacity or intellect.

    Like you I have been told my self-initiated compensatory efforts were phenomenal in some ways. But that phenomenal doesn’t mean ‘best’ or in my best self interest overall – because some of those efforts actually limited me in other ways. Your NT tries to keep you from going to extremes – because this is the habit of BI. I know it is annoying and feels like they don’t understand you – I have also been through this (and still) with rehab. What I do know is that some of the folks who I have dealt with have been better at helping me see this and address it – others seem to raise my hackles. I don’t know why this is so – maybe some psychological overlay in the way they address me. But I am getting better at at least listening to even the ones that feel frustrating to me and considering what they are saying – and in giving them feedback on what makes it harder for me to listen. I want help for the brain injury but I hate being treated like a person with a brain injury – if you know what I mean.

    Again – I hope that this doesn’t annoy you – I am not trying to be pedantic here. It’s just that I see myself in these round robin thoughts of yours and because it’s someone else I get a glimpse of my own issues. Maybe this is all part of the healing process. If you can find a really good BI support group it might be helpful – though personally I think a mentoring or buddy system is a better approach. Again, that may be up to you. The value of this is just that rehab folks and therapists never tell you what is ‘normal’ and what is likely to be the process of recovery – either because they therapeutically discouraged from it or because they simply don’t understand. But other TBI folks ‘get it’ and can give you a sense of things from the inside.

    Your posts serve as an invaluable resource to others but also to yourself. One of the great difficulties I have found is in accepting that I have a BI – oh, I get that I do but I want to believe that I can overcome it, like beating cancer. Yet I also think that some of the negative weight I give it is from myself and if I let go of that I will be better off. As I have done more advocacy I have found that what I feel and think is so common – and that helps a lot. Just as BI folks tend to not see their weaknesses I think they also fail to believe in their strengths and abilities. I work with a lot of folks who are younger than me, knowing that my short term memory is far below theirs is embarrassing at times – but I also know that I have insight and an ability to grasp complex topics and understand human behavior in ways that they cannot. I can make cheat sheets to remember – but they just have to grow older to know what I know.

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  3. m –

    Thanks for writing — all very good points, tho’ I don’t have the time right now to respond to all.

    Glad I can be of help 😉

    It’s true… I do need to revisit my posts after the fact, and sometimes I do.

    I’m also working on a system that works for me, to keep my act together.

    All in process…

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  4. COS –

    One of the really nice things about coding is how modular it can be — taking large things and breaking them down into bite-sized chunks to work on, one at a time, is something that works very well for me.

    I find that I thrive at this type of work — especially the html/css web development work and scripting, because it is so immediate. I can see instantly if something is right or wrong… and fix it quickly if/when it is. Getting things right after hassling with them for hours at a time is tremendously gratifying for me. And the computer doesn’t call me an “idiot!” for messing up. It always gives me a second chance.

    Ironically, the fact that I have such a hard time reading and learning sequentially makes me quite well suited to learning to code — by just doing it. I spend an awful lot of time casting about, noodling through problems, and generally bumping into one mistake after another, till the “lights go on” and I get it. I couldn’t tell you exactly how I learn that way, but I do. I suppose it’s trial and error … at a very brisk clip.

    Sitting for long periods in front of a computer has never been a hardship for me. I find the typing very soothing and rhythmic. I do get into trouble with my muscles cramping and getting sore and repetitive stress types of problems. But for some reason, I have always found the glow of the monitor and the hum of the machine invigorating.

    As for subscribing to this blog, I’m not sure about the email, but you can bookmark the feed at https://brokenbrilliant.wordpress.com/feed/ I’ll look into enabling subscriptions. You may need a WordPress account to do it? I’m not really sure. Will check into it and get back on that.

    Thanks for writing.

    BB

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  5. m –

    Thanks for talking sense. It’s very true, all the things you say. I do go on these wild cycles. And I do tend to get caught up in these “thrill rides” of compensation, thinking that such-and-such a way will work for me… and it does for a while, then I run out of steam (I get impatient and want things to be fixed NOW, so I work really, really hard and wear myself out)… and I end up floundering again.

    What I don’t often talk about is that I usually come back to the systems that appeal to (and work for) me initially, after I’ve rested up, and I use them again. One of the things about my mind is that when my brain takes something in, it takes it a while to integrated it into my whole experience. It’s not just about finding and using self-assessment materials… finding and using the Give Back Orlando materials… finding and using books that educate me about BI… It’s about taking it in, getting my head around the material, seeing how I can live with it, and then working with it on a pretty deep level.

    I’m doing this on my own, after all. I do have neuropsychs who are helping me, but they can’t be with me 24 hours a day (nor should they). My immediate friends and family know that I’ve got issues, but they don’t (yet) know how to work with this and help me. I’m not sure if they ever will.

    This would not normally be a problem, except that I’m realizing more and more how dependent I’ve been throughout the course of my life on people around me, to help me through a lot of difficult times. I don’t tend to think of myself as a really needy person, but in many ways I’ve depended on others to get me through. Social situations have been relatively straightforward for me, throughout my life, because I always take my cues from others, rarely initiating, but usually working off the clues sent out by others. Logistical situations have also not confounded me, because I have always been able to find cues and clues from others around me who indicated the way(s) I should go and the route(s) I should take.

    In many ways, I think my long history of head injuries has rendered me a lot more “disabled” than I care to admit. I’ve always been able to muddle through, one way or another, and I haven’t realized until the last six months or so, that when it comes to taking care of myself and using my own inner compass, I’m going to have to make much more of an effort to keep myself on track than I have been in the past.

    I hate admitting this. Especially because I’ve always thought of myself as fiercely independent and a free thinker with my own ideas. But actually, I’m often a pretty needy soul, and tho’ it may not look it, I’m very dependent on the direction of others for how to get by in life.

    That being said, one of the main hurdles to this TBI recovery process is my innate tendency to do as little as possible for myself, logistical thinking-wise, and expect others to cue and clue me along as I go. There is no one in my life — friend, family, therapist, co-worker — who can do this with regard to my brain. No one knows what’s in there, and no one knows how it works (for real). Even I don’t know that. I probably get a better look at some things than others, in no small part because I know how to cover my tracks and conceal many of my difficulties. Then again, my own perceptions tend to be skewed, so who can say what the hell is going on in here?

    Mystery.

    Anyway, back to where I was headed before…

    This cycling around between success and failure is very much a part of my life. And it’s my main way of getting along, quite frankly. I’m “flying blind” through life in so many ways, bumping into things as I go. Finding out what works by finding out what doesn’t… and in a way, I’ve developed a tolerance for my imperfections and my tendency to bumble about. Of course, it gets problematic when I’m required to get things right, but if I give myself enough time to recover from my screw-ups, my unpredictable imperfectionism doesn’t have to be a limiting factor. So long as I can keep going, keep flexible, keep thinking on my feet in the moment (cognitive flexibility is one of my strongest points, per my diagnostic neuropsych), I don’t have to be stopped by my limitations. Slowed down, perhaps, but not stopped.

    It is trial and error, with me. Lots of trials. Lots of errors. Fortunately, I don’t just fall — I bounce.

    And it’s all about the bounce.

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  6. BB,

    Thanks for the comments about coding – being able to break things down and work on them bit by bit makes sense. I used to do construction work (if you want to know what fatigue feels like after MTBI, try being on a construction site all day), and there was that same methodology of a bit at a time – in fact I’m told in web development circles the analogy is often used.

    Some sites have a subscription service – you click on a button, get feeds in your inbox in real time. I DO have a word press account, but you shouldn’t need one. But hey, if it’s a hassle, skip it and I’ll try and do better at checking on the site.

    Cos

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  7. BB –

    Thank you for your heart warming and honest reply. There certain things that are obvious just from your blog – #1 – you work VERY VERY hard to be a good, productive, giving human being. You put more effort into this than most people. #2 – you are your worst critic – you are very hard on yourself and demand a lot of yourself #3 – this is a struggle, and because of the ambiguity of it all, it is isolating – and as much as TBI survivors may fall into isolation because ‘it’s easier’ they also hate it because, we are mostly, social animals.

    Think that your responses are more patterns than wild ride – that might help you understand some of your cognitive connections. Like you I have my patterns – and sometimes I get very enthusiastic and gungho. In rehab they kind of peer at you and wonder if you are being ‘manic’ – not bipolar manic but tbi manic. The lack of innate impulse control and structure in your injured brain can produce a kind of mania. I have always resented this – and I still do. I don’t want any more classifications. Furthermore most people do get more intense under stressful situations and TBI puts one in stressful situations. The medical community likes to prescribe drugs and I am adamantly opposed to most drugs. What I need is someone who believes in my ability to ‘re-adjust’ myself and to help me learn when my thinking or behavior APPEARS to be veering to the left or the right too much. Labels, judgements, accusations are not helpful. And in the end the final decision is still up to me – am I thinking too positively etc. Part of the reason I believe I need to make that decision is that my brain is relearning life skills in a way – not all of my brain but certain parts – I learned impulse control and poor decisions making by experiencing it – with some guidance.

    These days there are few who can or want to give me guidance. My entire family has pretty much dismissed me – they do not want to know about TBI – you are a success or a failure, and I have failed. A have few friends, I do not have the money or the energy to develop friendships – and it’s hard on others. So I focus on rebuilding my life – and on my child and myself. And doing what I can to change others perceptions about TBI. I am in the process of working with others to create a program for families and friends to better help them understand how to help people with TBI. If you have any feedback into that – what you wish people would do please share that with me.

    I feel for your struggles – there is no simple solution, no good answer. What you do is normal and good – its a sincere effort to improve your life. If you stick with the neuro-therapist – and they are a good fit for you – hopefully you can build a trusting relationship and that will help you a lot. As I have said my relationship with my neurotherapist saved my life. It was the first time in my life some one treated me with respect and a right to have my own opinion – even if she thought I was wrong or TBI-ing. And slowly and gently she got me to see things for myself. She rarely told me – she just let me figure it out. When you can do that I think the lesson has more meaning.

    You are clearly a very intelligent and capable person. You have great ideas and thoughts and I give you credit for the blog – that takes discipline. It takes time – lots of time – but you will find some peace.

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  8. Cos –

    One of the best coders I work with used to be in construction. He got into it after playing in a band for years and working on sets for stages as well as playing… then he started a family and got into construction… and now he’s in web development.

    Checking my stats, I often see folks are reading this blog from Yahoo mail, so there must be a way. I believe you can click the Subscribe to Feed link in the upper left-hand corner, then choose Subscribe to this Feed using My Yahoo (in the drop-down, which has a number of different choices – in Firefox, anyway). At least, I think that’s how they do it. Either that, or people are emailing links to posts to each other, which could also be the case.

    Try subscribing via MyYahoo — I haven’t had luck, but it may work for you. You can also subscribe via Google or Bloglines.

    Cheers
    BB

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  9. m –

    It’s funny you should mention social stuff. I was thinking just yesterday that if it weren’t for my job and the volunteer activities I’m involved in, and the fact that I’m married to a very social person, I wouldn’t have any social life at all. I mean, none. Nada. Zilch. I might have some long-distance email acquaintances, and I might keep in touch with the world through forums and blog posts, but as for real-life in-person interaction… I’d have next to none.

    It’s just so much of a hassle!!! Having to sort things out and figure out how to interact with people without pissing them off or coming across like a total idiot… What’s the point? Seriously. I can stay home and keep to myself and never have to navigate the shark-infested waters of ignorant people who assume too much — about themselves and everyone else — and I could live quite happily that way. Until I got so lonely and isolated that I started to lose my mind, which I’ve seen happen to other people. Not so good.

    So, I’m a big fan of volunteering and getting involved in structured activities. It gives me something to do with my energy, while interacting with other people. I’ve considered joining a club of some kind, but I get pretty worn out with my everyday life, so at this point, working a full-time job and keeping up with my existing commitments keeps me fully occupied.

    It’s funny — work is such a structured environment, it makes it possible for me to function at a much higher level, than when I’m left to my own devices. I’m fortunate that I work for a company that has a mature corporate culture and is highly regulate, so it’s very rules-based. It’s also global, so a lot of different kinds of people cross my path all the time — and because we are all so different, people make an extra effort to be courteous and give each other the benefit of the doubt (which I really need).

    I used to joke about being “institutionalized” in my workplace — and some days I have to admit it does feel like jail — but it’s actually sort of true. But at least they let me go home at the end of the day, to cook my own food and sleep in my own bed. That’s a plus 🙂

    As for the family and friends… how to help us?

    Let me see… I’ll get back to you on that. I think that starting with the Give Back Orlando material might be a good place to start from. But let me think about it…

    Cheers
    BB

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  10. COS – by the way there is a little button on the top of the blog that says subscribe to feed – if you click on that you will be notified when updates are made…..

    Like

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