I’m incredibly distracted. I must be tired.

optical illusion interlocking cubes
I get so caught up in all my different things… it’s easy to get lost

I think the changes at work are getting to me a little bit. Uncertainty abounds. Fortunately, I’m not well-connected enough to get the juicy gossip. That would probably drive me nuts. My boss is very connected – and they are very guarded, as well. It’s impossible to tell, from talking to them, what the deal is.

I’ve been increasingly busy at work and at home. And more social, too, which has its own set of challenges. It’s hard for me to be social, when I’m tired… which is pretty much all the time.

What’s making it worse, is that I’m getting sucked into social media, chatting with people and also emailing them till late in the evening. I’m a night-owl by preference, but if I don’t get my sleep, fatigue sets in, and then I become impossible.

I’m not getting stuff done that I need to. I have several important projects around the house that I haven’t been successful at handling. It all needs to get done before winter arrives. It’s not a huge amount of work, but it takes focus.

So, I’m putting myself on a strict schedule. I sketched out a grid for what days I’ll spend doing what, and I got a visual of all the different things I’ve got going on. It’s easier for me to manage that way. I need to learn to tell myself NO, when I get distracted by things I’ve agreed not to do until the next day. And I need to be firm and decisive.

That’s hard, when I’m tired.

So, I need to get more sleep.

On the bright side, I’ve been steadily losing weight. I’ve lost nearly 20 pounds since the beginning of the year, which is a healthy rate for me. I need to lose another 5-10, to be where I want to be. I could even do with losing 15. But I don’t want to lose muscle, too. So, I just need to get a good sense of where I’m at, be healthy overall, and use my new energy wisely.

I do have much more energy than before — and actually, it’s one of the things that’s driving my distractions.

More Energy –> More Activity –> Fatigue –> Distractions –> Not getting things done –> Feeling bad about myself –> Distractions –> More activity that’s not productive –> Fatigue…

Anyway, you get the point.

Losing the extra pounds has been great. Now I need to learn to properly manage my new energy. Because it’s really, really good. And I don’t want to mess it up.

Onward…

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Find a New Neuropsych Step #3: Scout around for neuropsychs

I want to do more than keep my head above water.
I want to do more than keep my head above water.

Step #3 in finding a new neuropsychologist is : Scout around for neuropsychs, looking online and also touching base with my local Brain Injury Association chapter. If they have websites or blogs, read those to get a feel for what kind of people they are. See if there are any testimonials or recommendations from patients which will tell me more about them.

Now that I’ve got my list of issues to track, and I’m thinking about what they really boil down to, I need to look around for who can help me.  Years ago, when I was scouting around, I did not have the level of information and familiarity I do now, and it was like trying to find a needle in a haystack. Not only were there so many details to consider (and my brain made it even worse by complicating everything and taking in every single detail without distinction), but it was treacherous going. Like a needle will jab you if you’re not careful, a neurologist whose agenda is to prove you do not have any problems, is also a hazard.

Because there are plenty of them out there.

So, first, I have to screen out the folks who could be dangerous. I’ve come across local brain injury support groups who actually keep a list of those kinds of docs — they can ruin your life.

And then I need to find friendly faces — again, there are local groups that have contacts and recommendations. My local BIA chapter actually has a list of neurologists and neuropsychologists who “get it” and have proven helpful. I have an old list from before – but I may reach out to get an updated list.

I also need to check around with other people to see if they have any recommendations. I’m not very well connected to the brain injury scene in my area, because I can’t take the chance that my anonymity will be breached. I have to keep my semblance of normalcy together, and not let word get out that I have a history of brain injury. That could sink me, and as I’m the sole provider for my household… well, I’m not all that keen on being homeless and pushed out of society, which is pretty much what would happen. I don’t have a lot of folks in my life who are fine with brain injury — I found that out, when I was disclosing to friends who I thought would understand. They didn’t. They’re not my friends, anymore.

So, I need to make sure I’m smart about this and keep things simple. I also don’t want to go chasing the wrong things, as I feel I sometimes have with my current neurospych.

As I track my issues, I am actually seeing that my sensory issues and physical issues are a major contributing factor to my difficulties. Fatigue is the #1 complication I have with mild TBI, and it complicates everything. Being on constant sensory overload, day in and day out — with the fluorescent overhead lights, the busy-ness and activity at work, noise, the deodorizer in the rest room that’s as nasty and pervasive as perfume being sprayed on you in a department store — it’s exhausting. It really takes a lot out of me, and whatever cognitive reserve I’ve got on hand, depletes rapidly when I’m overwhelmed.

So, I need to look around and find someone who can help me with my sensory issues — not just cognitive ones. It might actually be the case that while I test fine under rested conditions, when I am tired and overwhelmed (which is usually the case), that all degrades. So, perhaps it would have made more sense to evaluate me when I was exhausted, since that’s my “default operating state”.

And it could be that my neuropsych has not gotten a full view of the impacts to me, because we’ve been meeting (by my specific choice) on a day when I am about as close to “on” as I can be — Tuesday afternoon, when I’m warmed up for the week, but not completely wiped out. So, that’s prevented them from getting an accurate view of how I’m really functioning.

Anyway… I need to find a neuropsych who is familiar with sensory processing issues, as well as other physical issues. Because I swear to God, I struggle so much with them, and my physical symptoms are so intrusive and corrosive, I don’t feel like I can actually make any progress, anymore. If anything, I feel like I’m going backwards. Being exhausted, day in and day out, is an issue. Eventually, it will beat the life out of you. It’s just a matter of time.

So, my hope is that I can find someone who more fully understands these problems all across the spectrum — physical first, then mental, then emotional — and who can help me work through all of this in a common-sense fashion. It would be nice to feel like I’m making some progress again.

See more steps here : https://brokenbrilliant.wordpress.com/2016/01/09/how-to-find-a-neuropsychologist-a-step-by-step-plan/

Find a New Neuropsych Step #1: Record the issues I’m currently having

The pieces are all there. We just have to put them in their places.
First, I need to collect the pieces.

Step #1 in finding a new neuropsychologist is : Record the issues I’m currently having and how they impact my life. Wherever possible, have real data behind my rationale for seeking help.

So, if I’m going to work with a new neuropsychologist, I need to be able to tell them why I need help. That means tracking the issues I’m facing on a regular basis, and figuring out if they are significant enough to warrant getting help.

In my case, there are certain things I would like to address, because they directly impact my personal and private life on a regular basis.

At the top of the list is the processing speed that seems to be getting slower.

Next, is my increasing difficulty with comprehending what’s being written (in emails and notes) and said to me. I am having a lot of trouble taking it all in the way I used to.

And then there’s the trouble I’ve been having with increased distractability and getting much more scattered than before. As is often the case with new jobs, about four months in, I start to lose focus, get scattered, and I lose ground. I had a very foggy/fuzzy couple of months behind me, which is patently clear as I attempt to piece together my end-of-year self-assessment for work. I am having trouble putting it all together — much moreso than three months ago.

I’m also having trouble getting started with things. This has been an ongoing issue with me, and I’ve tried to get help for it, but I’ve consistently been told (in so many words), “Your test scores don’t indicate difficulties with that part of your brain, so it really is a willpower thing.” I dunno. I really want to get started on things, but I sometimes have trouble figuring out how to get started — so I don’t. It’s becoming more and more of a problem, and I can’t seem to get help with it.

I’ve been organizing my study, and I came across an old performance review from two jobs back. My boss back then (about 4 years ago) warned that I was late finishing my projects, and that was tarnishing my otherwise stellar reputation. My performance review was also acceptable, rather than exceptional (which it should have been).

Part of that was the fact that my boss really didn’t like me and was threatened by me.  Part of it was that lateness and never finishing anything on time was a pretty big issue — which affected my performance, as well as my income. So, even if I did feel better about myself and my abilities to deal with life (as my neuropsych noted), the fact of the matter was, I simply wasn’t delivering on time.

Feeling good is great. Delivering on time is even better. In fact, I would have settled for being unhappy but more productive. That would have made a big difference for me professionally. Ultimately it would have reduced stress… and contributed to my happiness.

Anyway, these are some of the specific things I need to address on a neurological level. I need to know how the brain works with these things, and I need to understand how to tweak my performance – what, if anything, can I do to improve in these areas?

I need to map out exactly how these issues are getting in the way, list the things I have been doing on my own to address them, and talk about the results I’m getting (or not getting) that are affecting my performance at work and at home. I would feel a whole lot better, if I could take some positive steps toward fixing these issues.

  • Processing speed
  • Comprehension issues
  • Distractability
  • Getting Started / Initiation

If I can find someone to help me “hack” these problems, that would be great. It would be a step in the right direction.

See more steps here : https://brokenbrilliant.wordpress.com/2016/01/09/how-to-find-a-neuropsychologist-a-step-by-step-plan/

The chance to make a difference, every single day

Yes
Yes

Death is never an easy thing to deal with, and losing someone — or something — that means a lot to you, is just plain hard. Grief has a timetable of its own, and even when you think you’re past it, it can come up again — days, months, years after the fact.

I’ve been thinking a lot about loss, this fall. I’m working on my book TBI S.O.S. – Restoring a Sense of Self after Traumatic Brain Injury, and I’ve been thinking about all the ways that TBI has taken something from me over the years… including my Sense of Self.

Now a dear relative has died, and I have the opportunity to look at how that loss is affecting me and many others, whose lives they touched. Looking back at their long life — over 100 years — so many people and situations came across their path. Lots of good situations, lots of hard situations. And the last thing you could say about their life, was that it was easy. The last thing you could say about their personality, was that it was easy-going. They had a hard life, and they developed the mettle to deal with it. They weren’t always fun to be around, and they could be mean-spirited and cruel. But in the end, they really had a positive impact on so many lives. So many, many lives.

No matter their shortcomings — and we all have them — they always stayed true to their commitment to make a positive change in the world. That’s what their life was really about — through teaching, volunteer work, and active service on many boards in their community. The number of people coming through their hospital room at the end, to say good-bye and thank them for their service, was amazing. So many people who gained because of their commitment.

And it occurs to me, looking back at this relative, who had so many obvious flaws, that if they can make a positive difference, then any of us can. And we should. We simply need to have the willingness and the energy to keep going. We need to have that commitment. Each of us, in our own way, has at least one gift we can offer and develop to benefit others. And each of us, when we reach out to the people around us in a spirit of genuine helpfulness, can do something positive in this world to make it a better place. We don’t have to be famous or rich or mathematical geniuses to forge ahead. We can find our own small ways to pitch in and help, and do it better in our own way than anyone else ever could.

In a way, the fact that my grandparent was a difficult person, makes their contribution all the more inspiring. They freely admitted that they had limitations, and I know that in their later years they regretted a lot of things they had done in their youth. But they kept going. They kept learning. They kept showing progress and changing with the times. They didn’t push people away because of their limitations — they engaged with them and they learned from them, as well as taught. And in the end, what really matters is the good they brought to the world.

Looking at their example, I can see so many parallels with my own life — struggling with limitations, overcoming them, finding new ones to deal with, and keeping on till I could see past the most recent obstacle and get a clearer view of the world around me. Each barrier, each obstacle has taken me higher — so long as I’ve engaged with it. And each time I’ve overcome, I’ve gotten a better view of where I stood and what my options were.

Brain injury has been a real blight on my life. It’s stolen many good years from me, and it nearly ruined me, 10 years ago. But through following the example of my grandparent, and just keeping going, I’ve gained so much more than I ever could have, otherwise. And for that, I am truly grateful.

We all have something to offer. We all have something to contribute. And that “something” will necessarily change over time. As we age, as we learn, as we grow, as we go through the changes in our lives, our bodies and brains and outlooks change, sometimes turning us into completely different people. The loss of a job, the loss of a spouse, the loss of a home, a sudden change in fortune – for good or for ill – can drastically alter us and our relationship to the world and others around us.

That doesn’t mean we stop being able to help and contribute. That doesn’t mean we stop being useful and needed. Sometimes we need to recalibrate and shift our attention… look around for new ways to be of service. But those ways are out there — if we keep steady and look for them, with an open heart and lots of humility.

Okay, I’m getting off my soapbox now. I’m in a pretty philosophical frame of mind, these days.

On Thursday night, I’ll be driving to my family again for the viewing and funeral. I’ll probably be “dark” during that time, with everything going on. Right now, I’m making my list of things I need to do ahead of time, getting things together systematically, so I can just pick up and go on Thursday after work. I need to do laundry, buy food for the road, collect my thoughts for a short eulogy I’ll be giving, and basically keep myself steady and rested for the next week.

These things are never easy, but I do have a heads-up about what’s to come, so this will be logistically easier than the last weekend, when it all sort of took me by surprise. I was ill-prepared, in some ways, but it all came out okay in the end, I guess.

The main thing to remember, is that I’m doing really well.  I have NOT melted down, since getting back, and I’m keeping steady and calm. I have a long day ahead of me, but that’s okay. At least I have a plan to follow, and I know how things are going to shake out.

Anyway… onward.

Yeah, this is why I left – and now I can come back

Thinking about my past and my family, and why I never hung around with them much, after I left home, and why I have not kept in close touch, this video reminds me… why

I have always known there was something greater for me, something bigger, something more powerful for my life. I did not know about TBI, or how it could — and did — mess me up, take my life in the wrong direction, and disguise itself as mental illness and character flaws.

I knew — and have always believed — in neuroplasticity, that learning and growing are normal parts of our lives. And since 1983, I have known beyond a shadow of a doubt that the brain can and does physically change in response to stimuli and challenges.

I knew something bigger was possible for me, beyond the confines of my family.

I knew something better was possible for me, beyond the restrictions of the traditions that raised me.

And I was bound and determined to step forward and reach those things — from the time that I was very young and struggling with so many issues, as well as the issues the rest of my family had.

I didn’t know why I had so many problems. But I was determined to live, in spite of them.

And when I found out why I had always struggled so terribly… that was the missing key that had eluded me so long.

It’s funny – I often feel guilty about having “left” my family behind me. Now I’m spending more time with them, and it’s very, very different from before. In the past, I had to keep myself somewhat insulated from their attitudes and prejudices and keep them at a distance. I couldn’t afford to spend too much time with them, because they just dragged me down so terribly.

I still keep my distance, because they have a bad habit of being extremely negative and acting like all the world is against them. That’s not my point of view. Once it was, but not anymore. Now I know there are ways I can change my situation — change my brain, change my life — and not be victimized by circumstances.

It’s my hope that I can be a good example for others — whatever their challenges. And that rather than just avoiding people who carry the weight of the world, I can offer them some other options.

Life is simply too good, to be thrown away on negativity and defeat.

Reset NOW

I just came across this video – pretty inspiring

No matter what people may offer you, if it means you have to sacrifice yourself or abandon your convictions, no way no how is it worth it.

Back from my trip to see my family, I am reminded yet again of why I left. The price of admission to the community my family is part of, is way too high. You have to abandon your individuality to be part of a larger group, and that doesn’t sit right with me. My siblings have all pretty much kept the continuity going, living their lives as my parents expected them to — with a few minor exceptions, here and there. I’m the black sheep. I have broken out. And looking at how things have developed, back there, I’m so thankful I stepped away when I did, and managed to keep my individuality intact.

My family and their community have specific ways of doing things that they believe are correct and right. Everything from how you tend your garden, to how you maintain your home, to how you walk and talk, and when you light the first wood fire of the year, are watched and commented upon by the neighbors. Almost every aspect of life is dictated by a combination of religion and tradition, and those who “buck the system” are not welcome. Tolerated, but not warmly welcomed.

And while that rigidity gives them a sense of continuity and comfort, it doesn’t leave a lot of room for growth and positive change — unless that growth and positive change is part of their world view.

If there is a problem in front of them that can’t be solved by the same old thinking, then that problem stays stuck.

Like the problem of the hoarder in the family that nobody ever talked about. And nobody could ever help.

Hoarding is a complex issue, and it has a lot of different aspects and causes. There’s the perfectionism, the personalization of objects, the inability to let things go, because of the emotional connection to them, the inability to see a problem (on the part of the hoarder), and the inability to creatively think about options and choices for how to live differently.

I never realized, till this last weekend, just how badly off “our hoarder” was. Nobody ever talked about it in depth, nobody ever took steps to address it directly. The standard response was through prayer and support and trying to talk sense into the hoarder — and to model a better way to be.

Nobody ever addressed the neurological issues they had — which are obvious and several — and nobody ever addressed this in a systematic, scientific way.

What a friggin’ waste of a life. “Our hoarder” is well into their 70’s, and they have lived in the midst of their own filth for some 30 years. And I never fully realized the extent of the issues. Had I known, I might have been able to do something. But now the past is done. The wrecked house has been cleaned out. And “our hoarder” is in a retirement home, where it is literally impossible for them to collect any more crap or allow their space to become trashed. Cleaning folks come in every week like clockwork. So, with any luck, the will get the help they needed all along.

30 years have gone by, leading up to this moment, and my relative has lived in their squalor all that time, unbeknownst to me. I have never been in a position to actually help them before, because I had so many issues of my own. And now that I am on my feet again with a much more robust set of tools and skills, I am in a position to help. But their situation has changed, and help with that part of their life isn’t necessarily needed anymore. At least from me.

There is literally only so much I can do for my own family. They are set in their ways, and I’m not sure they will be able to change. Outside my own family, however, I can do some things. Like living my life to the fullest, showing others how hope is possible, and keeping the faith each day in my own way.  I can reach out when and where it’s possible, and hope that I have a positive influence. I wish it were possible for my own family, but sometimes it’s just not possible.

So, I do what I can, where and when and how I can. And do my best to not take responsibility for others’ choices and actions.

You can’t save everyone.

But you can save yourself.

And it’s time for a little reset in my life — to take what I’ve learned from the past week, and put it into positive action in my present and coming weeks, months, and years. I need to sleep… and hope that my system will “integrate” the info from the past days into something useful in the future.

No sense in letting all the lessons go to waste, right?

Okay, time for a nap.

One thing they never tell me about TBI – but they should

WTF is going on in there?

I had another irritating session with my neuropsych on Thursday. We’ve changed the day of the week we meet, and now… instead of meeting early enough in the week for me to be my normal self, I show up at their office like a raving maniac, in a fine style they have rarely seen.

These days things are different for me, because I’m pushing up against the envelope of my comfort zone at work… and I am tired. So tired. I’m like a friggin’ lunatic, by the time I get to my session. My neuropsych can say one thing — one thing — to me, and it sets me off. I’ve got this hair-trigger temperament, by Thursday night, and that’s usually about the time when I realize how screwed I am, how little I’ve accomplished that I needed to get done, and I’m starting to panic about the next day.

My neuropsych has never seen me this way, so maybe this is for the best. They seem to think that I have this even-keel, mellow personality that’s all thoughtful ‘n’ shit… Like nothing can get me riled, I’m unflappable, and I’m in command of my inner state at all times. Well, let me tell you, by Thursday night, if I’ve had a crazy week, all bets are off. And I’m ready to rumble.

We’ve “gone ’round” a few times, now. This week and last. This individual jumps into my train of thought, trying to “correct” me, and I’m seriously not feeling it. I’ve got no patience, I’ve got no open-mindedness, I’ve got no extra cycles to put up with B.S. And the other thing is that my neuropsych is tired, too, so they’ve probably got their own issues going on.

Especially when I show up at their office, having trouble with my excellent life, when — seriously dude — I should be fine. But I’m not.

No. I’m not.

Because I’m not myself. I’m someone else. And while I should be fine — with a good job, a house, a long-term marriage, and a couple of cars in the driveway — I’m not. It’s not like I’ve had half my brain removed, or I struggle with constant seizures. It’s not like I was ever in a coma, or I had a spike sticking out of my head. I never had to have part of my skull removed to relieve the pressure from an impact.

I’ve just had a bunch of mild TBIs — concussions — with little or very brief loss of consciousness. I “should” be fine. But I’m not.

And that’s the thing nobody ever tells me about mild TBI — how it’s the gift that keeps on giving. How a simple fall down some stairs can send me down a weird, dark pathway into a forest with patchy moonlight filtering through the trees. How it messes up my head in very unique ways that are pretty much hidden to me, until I bump up against a situation that “should” be easy for me. But isn’t.

To me, years after I started down this path of actively recovering from all my brain injuries (9 “mild” ones, by my count — probably more), what’s clearer to me than ever before, is how TBI just never quits. It sets things in motion that are invisible and disruptive, and if you aren’t vigilant and if you don’t develop strategies for dealing with all of it, your condition becomes chronic and worsens over time. The simplest things that should be so clear, confuse you. You don’t recognize yourself. You’re “not quite right” in the eyes of people who knew you before. And it can be well nigh impossible to figure out what the hell everybody is so upset about — because from your point of view, everything seems fine. It all seems fine.

TBI never quits. That is as true for Mild TBI as it is for any of the others — perhaps even moreso for Mild TBI. The changes that take place in the brain affect the mind, the body, and the way the two work together. And over the long term, these changes keep happening. And with mTBI, the issues can be so irregular and “spotty”, and you can be so busy just living your life, that you don’t see the warning signs — until it’s too late.

And you’re in hot water again.

What nobody ever seems to mention, is that mild TBI can become a chronic condition that progresses over the course of your life. It affects every aspect of your being, and unless you can figure out that that’s actually happening, and learn to manage it, the long-term prognosis can be sketchy. Even, well… bad.

I don’t know why nobody ever talks about this — at least, they don’t talk about it within my earshot. Traumatic brain injury symptoms often clear for people. But for some, they become chronic… they don’t go away…. they morph into something else over time… and something else… and something else…. and they can turn you into a person you hardly recognize and don’t exactly understand — in place of the person you thought you were.

Maybe people do discuss it, but it never trickles down into the general populace.

Or maybe it’s that I’m so busy living my life, and I’m so busy trying to figure things out, that I don’t have time to seek out the inner secrets and latest cutting-edge research about TBI recovery. My neuropsych has certainly not discussed this with me at length — probably because I get really upset and bent out of shape when they start to talk about TBI and how my brain has been affected by it. Strangely, although I can write about it freely here, I have a hell of a time discussing it with my neuropsych. It freaks me out. Way too much. So, we don’t talk about that much — just about how I can build the skills to better live my life.

That’s actually working out. It’s a good strategy. I have this body of skills and approaches built up. At the same time, though, it feels like they’re built around a shell of a person — I’m the outside appearance of myself, but inside, it’s hollow and dark and empty, and I don’t know who’s there anymore.

I try not to worry about it. I’ve got to get on with my life and live it, the best I know how. But when I’m tired… and when I’m tired of being tired and not knowing who the hell I am… this comes up, front and center, and it works on my mind like nothing else.

Of all the things about mild TBI, I’d have to say, the most damaging part is having lost my sense of who I am, what I stand for, and where I fit in the world. It’s a casualty of the injury, and nobody seems willing to address it — as though ignoring it or “working past it” is going to solve things.

Oh hell, I’m just going to write a book about it. For TBI survivors, their loved ones, and for the caregivers who know so much — and yet so little. Losing your identity and having to reconstruct it again, despite being “fine” in the eyes of everyone else, is a problem. It takes too many of us down. It’s an issue. It’s a problem. And I don’t feel like sitting around bitching about it, anymore. It’s time to do something about it.

In fact.

Onward.

Executive Function Problems – Hiding in plain sight

Executive function issues just blend right in

Ouch. I was pretty active yesterday, for the first time in a long time, and now all the muscles that I usually don’t use (and I’m embarrassed to admit I don’t use them) are complaining. Funny, I didn’t think I pushed myself that hard, but my body says otherwise.

It’s just as well. It will start me down the road to get in shape for the spring and summer. Spring is only 2 weeks away, after all. It can’t come soon enough. Of course, I say that now… I can only imagine how in a matter of months I’ll be looking forward to summer… then fall… then winter… then spring again…

All in good time. I think it’s best if I just enjoy now for what it is.

I’ve had some hard thinking and soul-searching to do, lately. Reading about executive function — and how common it is in TBI, and how it can really screw with your ability to live your life and have “positive outcomes” (the official term for “getting your sh*t in order and just being able to live your life the way you intend”) — I’ve had to back up a little bit and really consider how much my life has been screwed up by executive function issues.

It’s weird. I haven’t even given this a whole lot of thought – I tend to think of my issues as being lower-order. Things like tinnitus (which was out of control the other day — really driving me crazy… come to think of it, it’s worse than normal and bugging me in the background, right now, too)… and light and sound sensitivity… and touch being painful, or tactile defensiveness, where I recoil if anyone touches me (that’s been happening lately, too)… and the aches and pains, headaches (those have been around, lately)… lack of coordination… trouble sleeping… a whole host of physical issues that mess with my mind, because they are so damn’ distracting and take considerable energy and focus to keep them from taking over my every waking moment.

But reading the paper on “Higher-Order Reasoning Training Years after Traumatic Brain Injury in Adults” is turning out to be a wake-up call. And I am realizing — years after starting my neuropsych rehab — that I have considerable issues with executive function. I have had these issues for a long, long time.

And I haven’t really realized it. Not fully, anyway.

Let me clarify — I do know that I have issues with:

  • Planning and organization – I usually consider myself a good planner, and I’m very systematic in my approach, mostly because I have to be. Sometimes I get confused when I least expect it, so I have to have an ironclad plan in place… or I become intensely anxious, and then everything goes to hell. I can plan work-related things, and projects on large scales, but when it comes to little things in my life, I run into issues. Looking around at my house at all the projects that need to be done, it’s evident that I haven’t been able to plan appropriately to deal with them.
  • Flexible thinking – In some cases, I am very flexible and I can adjust quickly and with great ease. Other times, I get stuck in one rigid mindset, such as morning and evening routines or how to do things at work, and if I deviate one iota from my prescribed process, I freak out. It’s really weird… lately, I’ve noticed that my thinking about my morning workouts has been very inflexible, to the point of me not doing anything if I don’t have the time to do my whole workout in exactly the same order… and it doesn’t need to be that way at all. I tend to find a process that works for me, and then I do that over and over and over again, regardless of whether I would benefit from changing it up. I’ve recently changed up my workouts, and now I’m sore. But I also feel this sudden breath of fresh air, and even though I’m sore, it actually feels really good to have some variety. I tend to make people around me nuts, too, because I have such rigid ideas about how things should be done. When I give instructions, I am generally way too specific and way too micro-managing for anybody’s comfort level. The thought often doesn’t occur to me that there might be other perfectly fine ways of doing things that I’ve figured out myself.
  • Monitoring performance – I have to really work at this. My monitoring is very spotty, and there are big gaping holes in my perception of “how I’m doing”. I tend to be extremely focused on specific details about my life, rather than my overall performance. And to tell the truth, at work my performance has suffered because I have not monitored it and corrected things that were amiss.
  • Multi-tasking – Yeah… well…  I like to think I can multi-task, but the truth of the matter is, I’m not multi-tasking and getting things done. I’m going off on tangents to distract myself at regular intervals… and in the end, stuff just doesn’t get done.
  • Solving unusual problems – This is actually an okay area for me — provided that the problems are intriguing and don’t represent a threat to me and my safety and my sense of self. If the unusual problems seem to threaten my well-being and my perception of who I am, I tend to avoid them like the plague. I’ll do anything, besides deal with them. Kind of like Nero fiddling while Rome burned.
  • Self-awareness – I’m getting better at this, I think, with the help of my neuropsych, who is the only person I know who has a tolerance for my version of crazy. For years, I thought I was extremely self-aware, when in fact, I was aware of this “self” I had invented according to what and how I thought I should be. The “self I used to be” was based more on fantasy than reality, and in some ways I suspect I was quite deluded. Most of us are, to some extent, but the degree to which I’d come up with a slew of cockamamie explanations of why I was the way I was… well, it was pretty remarkable, when I think back.
  • Learning rules – This is actually a strong suit with me… at least, I think it is, to some extent. I tend to be very rules-based. However — and this is a big issue — it’s very spotty and irregular, and I never know for sure which rules I will learn, and which I’m just picking up in part. And then remembering them… it can get interesting, because I could swear I have them down cold, then I find out I’m completely off base.
  • Social behavior – I’ve gotten a whole lot better at this, in the past years, largely because I’ve learned how to talk to people, which I never really did before. I still freeze up at times, but nobody knows I’m freezing up, because I know how to present in a calm and relaxed manner. On the outside, I’m chill and engaging. On the inside, I’m freaking out because I haven’t the faintest idea what’s going on. Interacting with people takes a lot of skills and cognitive ability, from processing what they’re saying to you, to remembering what they said earlier in the conversation. And being able to read and react to their signals… I swear, sometimes I just don’t have the energy for all that activity. It’s exhausting for me.
  • Making decisions – Yeah, well. In some ways I am extremely decisive, because I know all too well the consequences of not making decisions. A lot of times, my decisions are not that great, but at least making a decision gives me a chance to see if it was smart or not — and then adjust… and hopefully learn for the next time.
  • Motivation – This is one of the big challenges I face. When I am feeling tired and overwhelmed, which is much of the time, I just don’t feel like doing anything. At all. And the fact that I can get up and go out into the day and get on with my life, says more about the habits I’ve formed, than any eagerness on my part. Motivation is a double-edged sword for me. Too little of it, and I feel like crap and can’t see the point in doing anything. Too much of it — especially over an extended period of time — and I get overwhelmed and exhausted, and I end up de-motivated again.
  • Initiating appropriate behavior – Often doesn’t happen. Especially when I’m uncertain about how to proceed, and I have a history of bad experiences with a situation. Take for example a conversation I had with a neighbor yesterday — their spouse had done me a huge favor while I was away on my business trip, and I was deeply indebted to them. But the neighbor I was talking to has gone a little nutty on me in the past, flipping out over things I did with my house that they didn’t like (it was a stupid thing and they were so not in their rights, but never mind). It’s really been ugly with this person before. But their spouse and I are on good terms. So, when I saw this (formerly nutty) person, I just chatted about this and that, not mentioning my gratitude to them and their spouse for helping me out, even though they hinted at the favor in the course of our brief conversation. I literally couldn’t figure out how and when and where to insert the “thank you” that I wanted to tell them. So, I didn’t. And I felt like an idiot the rest of the day. Still do, in fact. It’s one of my things — I guess I’m pretty honor-bound in these matters (not to mention a bit inflexible in my thinking – see above) — to always be respectful and express gratitude, but I couldn’t manage it yesterday.
  • Inhibiting inappropriate behavior – Like not talking trash about upper management at work when you’re within earshot of other upper management. Like not making references to color and class and religion, when around people who are from a different ethnic or economic or religious background than myself. Like not jumping out of my car and running over to the cop who just pulled me over, to give them a piece of my mind for pulling me over. Like not going on and on and on about something, talking and talking and talking even after people have told me to shut the hell up, and I’m digging myself deeper into a hole. These sorts of inhibitions don’t seem to come easy to me — and it’s always at the worst possible time, usually when I’m stressed and on edge.
  • Controlling emotions – Yeah, talk to my spouse and my co-workers about this. They’ve seen me go off on the stupidest little things. Some of them have seen me weep uncontrollably over who-knows-what, others have seen me go OFF over some dumb sh*t, others have seen me laugh hysterically over something that was funny three days ago. In all cases, I’ve done a really great impression of a crazy person. I try to laugh or shrug it off, but sometimes it’s pretty alarming for people, and it makes them wonder about me.
  • Concentrating and taking in information – I’ve gotten better with this over time. Of course, it works best if I’m rested, and it works worst if I’m exhausted and overwhelmed. And it’s really bad if I’m having a lot of physical issues that are sucking up my energy, just keeping myself focused on what’s in front of me. Sometimes it just doesn’t work for me at all, and I have to either stop altogether, or rely on the people around me for clues about what I should do next. It can be subtle and irregular, but it’s worst when I’m tired and dealing with a lot of physical issues.

You know, it’s funny – when I write all this down, I can see that there are areas where I would really like to improve. But when I’m going about my daily life, they don’t just pop up in plain view when I need to see them. Now, I know that there are plenty of other people walking around out there with similar issues, and not all of them are related to TBI. The thing with me is that no matter what the cause, I still want to get a better handle on these things and not have them disrupt my life the way they have been. In so many small, seemingly insignificant ways, they get me down… and then they snowball, till I have no idea how to handle any of them, aside from leave and go on to the next thing.

The issues aren’t just small things, here and there. There are some significant ways that my life is disrupted by these things — and I believe a lot of my issues can be traced back to concussions/TBIs I sustained as a kid. Over the years, I just got in the habit of doing things a certain way — or NOT doing things at all. And as a result, I just haven’t developed the “muscle” for the kind of executive functioning I (and others) expect of myself.

Seriously, I’m a smart cookie, and I have my moments, but my life and my career and my financial state do not reflect even a portion of what I’m truly capable of — and what I have tried — with all my might — to be capable of. I want to change this. More than just about anything.

So, yeah — executive functioning. Frontal lobe stuff. I have a pretty good understanding of my physical issues, and I have my ways of coping with them. Now I need to look at the higher-order issues I have, and actively participate in them.

Yes, actively participate. Because I’ve been seeing a neuropsych for a number of years, now, but to be perfectly honest — and I feel like an idiot saying so — I haven’t really understood what the hell we were doing each week, just talking about my life. Seriously, how interesting can it be to hear about my stupid projects at my stupid job? But that’s been the (somewhat tiring) topic of conversation — in great and thorough detail — for some time, now.

But in all honesty, I haven’t given it all I had. I’ve glossed over things. I’ve covered up problems I’ve had with my reading and writing and comprehension and planning and follow-through… to the point where my neuropsych never realized how much I was struggling with my reading and comprehension and planning and follow-through, and didn’t realize that I switched those several jobs when I did because I got so friggin’ confused that I just couldn’t do it anymore.  It wasn’t just about “seeking new opportunity” which is a great way to describe “get me the hell out of here” — it was about avoiding dealing with the difficulties I was having and just couldn’t deal with, before everyone found out how much I’d let things slide and ended up pissed off at me — which is what’s been going on in my current job for over a year, now.

Thinking honestly about a lot of things in my life, I instinctively avoid certain things I really need to deal with. Things like fixing a leaning lamp post in front of my house that I can’t figure out how to shore up. Things like paying bills. Things like financial planning in general. Things like getting my chores done. Things like sorting all the papers I’ve thrown on my desk. Things like planning and completing project tasks that confuse and frustrate me and I can’t figure out how to handle. I don’t waste my time sitting around feeling insecure and anxious — I just avoid them completely and think about other things.

Which is great in the moment… but later on it’s a big problem.

It’s cumulative. So, here I am, with a seeming ton of little things I need to sort out, all sitting around in the wings, as I go merrily on my way, paying attention to other things that seem much more interesting to me and give me some relief from my overwhelm. Eventually it does catch up with me, and I have to dig myself out from under… which is kind of where I am now. And where I am now, is realizing that I can’t just run away from things, I can’t just avoid them. I have issues that are hiding in plain sight — the only reason I don’t see them, is I’m not looking. And I’m not admitting to them, to the person(s) who can help me.

I really need to stop and stand my ground and just deal — with the things I’ve put off, as well as my own executive function issues. I need to stop looking at all the tasks and to-do items as hindrances and problems, and see them as ways to improve my executive functioning overall.

‘Cause I need to address it. Before it gets the better of me. Again.

I’m changing jobs. I’m changing my life. If I don’t address these executive function issues, I’m just going to make a tough job harder — if not impossible.

Avoid or engage? That is the question

Okay, so I have gotten a number of calls from recruiters with jobs that sound promising to me. At the same time, the people I’m working with at the moment are offering me some good opportunities to grow. And at the same time, I’m so sick and tired of the commute and the working arrangement, that I can’t wait to leave.

I’m stymied. Stuck. I want to move forward, and I have formulated a number of different plans, but I can’t seem to A) stick with any one course of action for long, or B) stay true to my original intention I had, a couple of months ago. Rather than taking the bull by the horns and taking steps in the right direction, I find myself avoiding the issues entirely, doing a million other things besides what I should be doing.

This is no good. Not only is it terrible for my work life, it’s really hard on my spirit. It’s doing a job on my self-image and self-confidence, because each day I feel less and less capable of getting things done the way they should be. It’s as true for my daily work, as it is for my future plans. It’s just not good. I want to engage… but I end up running in the opposite direction, time and time again.

I need some answers and I need some new ideas. So, I’m looking to recent research to see if anyone can explain the mechanics of this to me, so I can formulate a new approach.

I’ve been studying an interesting piece of research, entitled “Coping behaviour following traumatic brain injury: What makes a planner plan and an avoider avoid?” (Brain Injury, September 2011; 25(10): 989–996 by Krpan, Stuss & Anderson). It talks about how, after TBI, executive dysfunction can be related to whether you plan ahead and engage with the tasks / events of your life, or whether you avoid those tasks / events. The paper suffers a bit from a lot of other scientific research I’ve read, in that it focuses so intently on the validity of its data, and it goes to such great lengths to explain and defend the methodology, that the actual point of the research is lost in the shuffle.

And ultimately, the paper doesn’t actually seem to answer the question it poses – “What makes a planner plan and an avoider avoid?”

I do think this is a valid question, and now I’ll explain what I got out of it, and I’ll also attempt to answer the question a little better than they did.

Basically, the point they’re starting from is that after TBI, survivors who avoid issues tend to have negative outcomes. I believe that means that those of us who avoid challenges rather than facing them directly have more trouble with job loss, relationship troubles, money problems… we know how it goes… all these troubles come up, and our means of “coping” is to avoid them, rather than engaging, and we end up with more trouble than we started with.

On the other hand, people who are better at planning things and taking steps to engage with their lives end up with better outcomes.

This study was to “evaluate the neuropsychological, physiological and psychological differences between planners and avoiders with TBI.”

They collected 18 people with moderate-to-severe TBI and ran them through a battery of tests that evaluated them neuropsychologically and physically. The people who did best on the tests and performed best in a staged evaluation were people who planned, whereas people who avoided (didn’t prepare for) the staged evaluation, did worse.

The short answer to their question seems to be that people who avoid score lower on executive function tests, while people who plan score lower. So, the thing that makes people avoid, is diminished executive function. That seems to be what makes a person avoid or engage with the challenges of their life.

Now, I do think that this study has a lot of merit. It’s a great starting point for this line of inquiry. It is one of the first studies of its kind with regard to coping and outcomes after TBI, since not that many people have actually objectively studied the functionality of TBI survivors. Apparently (and I never would have guessed this) clinicians and experts have been relying on our self-reporting to see “how we’re doing” — which even to me seems like it’s not that bright, because we who struggle with brain injury all know how TBI can screw with your perception of self and your ability to assess how you’re really doing. So, kudos to the team that put this study together.

At the same time, however, I think that the conclusions they draw — that faulty executive function is the source of planful/avoidant coping — needs closer scrutiny. Based on my own experience, I would say that, as they say, “Dysfunction on tests assessing executive abilities was the best predictor of avoidant coping,” but it’s not the sole cause of that kind of behavior.

I’ve talked about this in years past, and I’ll say it again — it’s actually an amped-up and poorly managed fight-flight-freeze response that makes us engage or avoid. Because no matter how well your executive function may be, no matter how capable you may be under normal conditions, if the fight-flight-freeze sympathetic response gets the upper hand, it short-circuits our ability to think clearly, to plan, to learn… to make the most of whatever resources you have available to you. Even if you’re normally “with it” and able to deal with most of the complexities that life sends your way, if that sympathetic overdrive kicks in, chances are good that you’re going to run in another direction than straight into the oncoming challenge.

I’ve seen this myself, countless times — a challenge comes up that I know intellectually that I’m able to handle. And I engage with it. Then for some reason, I just can’t. I just can’t deal. I know in my head that I can do it — of course I can. But there’s a big part of me that avoids dealing with it, as though it were a fire-breathing dragon. And it makes no sense.

Unless you consider that the fight-flight-freeze response kicks in prior to the executive function, hijacks the thinking process, and it takes the upper hand quickly and willingly to keep any “danger” from becoming life-threatening. It takes its clues from a million little stimuli, and it doesn’t negotiate. It just takes over — all in a split second before your higher reasoning can kick in.

This being the case — and there is research to support it in the trauma studies “wing” of academia — I believe that even if you do have superior executive function, if you’ve also got a sympathetic bias going on with you, then you can periodically end up with executive dysfunction that keeps you from really developing and honing your higher reasoning abilities.

And this, I think, is where the troubles set in — because our brains are plastic — they respond to conditions and they change and morph over time. And when we have a dominant, poorly regulated sympathetic nervous system that puts us into fight-flight at a moment’s notice, our brains are shaped in that direction — towards the most basic reactions, not higher reasoning. And our executive function doesn’t get the “workouts” it needs to develop over time.

Ideally, it might have been really helpful in the assessment of the subjects in the coping study, if they had looked at their cumulative stress hormone levels over time, to objectively assess the degree to which their sympathetic nervous systems had the upper hand. Come to think of it, that could make a really interesting epidemiology study — look at a broad population of TBI survivors and measure their stress hormones and the outcomes of their lives over an extended period of time, to see if there are correlations — any cause-effect relationships — that can be detected. Or maybe there is a study like that out there, and I just haven’t found it yet.

But I think I’m wandering afield… back to my original theme: According to the study, “planful” coping and “avoidant” coping appear to be connected with executive function in TBI survivors, with people who have more executive function doing more planning, and people who avoid issues having less.

On the other hand, I believe that executive function — rather than being a cause of good outcomes, is an indicator of autonomic function — it is a by-product of not letting your fight-flight-freeze sympathetic nervous system get the upper hand. Whether that is due to conscious choice or instinct or practice, is another question, but based on my own experience and observations of the behavior of others, if you can keep that biochemical cascade in check, so much the better for your executive functioning. And over time, given practice, you’ll be able to strengthen those abilities, and do a better and better job of planning and meeting your life’s challenges head-on, instead of running the other way.

So, I think that rather than being a cause of planful or avoidant coping, executive function is an indicator of how well modulated the autonomic nervous system is, and how adept an individual is at suppressing/resisting fight-flight-freeze responses so they can keep a clear head and actually process all the stimuli that are coming at them on a higher level.

Kudos to the team that did the study. It’s a good start. And like so many other examples of research, it does a great job of posing more questions. I think we have a ways to go before we can come up with anything definitive, academically speaking, but in reading and re-reading this paper, I am coming up with some pretty good ideas about how I get myself over the “hump” of progress I seem to have hit.

I want to move forward, but I feel frozen in place. Now I think I have some ideas about what my next steps can be, so I can move on.

March is Brain Injury Awareness Month

It’s that time of year again, when we try to bring some awareness to brain injury. It’s also the month when I become all the more keenly aware of my own brain injuries. It’s not the easiest month, to be sure, when I start thinking back on all the challenges and difficulties and struggles and plain old complications I’ve experienced, because of issues I was not aware of.

It’s bad enough dealing with a brain injury, but when you’re not aware of the real reason, and you spend a lot of time (and a fair amount of money) looking around for other explanations and exploring solutions that only address the symptoms, not the underlying cause, it can build up to a whole lot of frustration and pain.

To be followed by intense relief (of a kind) when you finally figure out what the real reason for all your troubles has been.

Which can be followed by anger and frustration that nobody looked further into the issues and found you real, genuine help.

Which can be followed by the impulse to reach out to others and help them in ways you never were helped, in hopes that they may come to understand the true nature of their experience and find ways to successfully deal with their challenges.

It’s a hope… it’s an intention. Who can say if it ever really turns out that way, but a person can try. It’s the least we can do.

Anyway… I’ve been reading this paper on Higher-Order Reasoning Training Years After Traumatic Brain Injury in Adults, and for some reason it’s striking a nerve with me. Maybe I’m already raw with all the changes going on at work. Maybe I’m already feeling vulnerable because I’m so tired from the transitions and talking to recruiters and trying to sort things out. Whatever the reason, reading the paper is getting to me, because it’s reminding me about the issues I’ve had, and it’s causing me to re-examine my life in light of those difficulties and issues… and when I look back on all that I’ve struggled with, all that I’ve tried (and not succeeded at), those issues come front and center — along with all the associated stories I developed around them to explain myself and my experience.

I look back at my life, and I can see a long progression of issues with my brain’s executive functions — issues with (list from the Headway site)

  • Planning and organization
  • Flexible thinking
  • Monitoring performance
  • Multi-tasking
  • Solving unusual problems
  • Self-awareness
  • Learning rules
  • Social behavior
  • Making decisions
  • Motivation
  • Initiating appropriate behavior
  • Inhibiting inappropriate behavior
  • Controlling emotions
  • Concentrating and taking in information

In some cases, my issues are not uniform, and the experience has been variable. A lot of these I’ve managed to work with over the years and have found ways to overcome or rehabilitate. Some of the areas I’ve been literally forced to develop, like planning and organization, multi-tasking, solving unusual problems, making decisions, and concentrating and taking in information. Others, I continue to have consistent issues with — especially when I am tired. And it depresses me a little, to think about how much I have to work at some things that are central to my everyday life — central to everyone’s everyday life, in fact.

I know I’m not alone in my reactions to brain injury. All of society seems to recoil at the idea of brain injury, despite how widespread it is, and how thoroughly it impacts the lives of so many… and despite how loudly it really calls out for a wise response.

That reluctance, that fear, that avoidance, just drives a wedge between us and solutions that can help us — all of us — live our lives better. The things that help folks with brain injury can help people in general — especially when it comes to executive function. And when I think about it, much of the self-improvement material that’s out there has an executive function focus. Planning. Making decisions. Motivation. Look at your local bookstore and you’ll see them all — and more. It’s just that the popular literature is not particularly focused on addressing the underlying issues — the neurological ones. That might be one of the reasons why self-help materials have a spotty success record — they just don’t go deep enough. Of course, that ensures repeat business, as people keep coming back looking for the “true” answers, and that makes for good business profits. But that’s another rant for another time.

In any case, brain injury awareness is not the easiest thing to engage with. It cuts to the core of who we are and what we are about. It cuts to the deepest parts of ourselves, our deepest fears, our fondest hopes, our most intense anxieties. It’s not easy, by any stretch. And it’s really easy to avoid and gloss over.

But for some of us, we can’t do that. It’s not an option. We need to face it head-on and take on the challenge with all our hearts and minds. Or else.

That’s kind of where I’m at, right now… that “or else” place, where all the issues that have come up over the years relating to my brain’s executive dysfunction are standing out in glaring relief against the contrasting vision of what I had hoped would be — and could be. I’m pushing 50 years of age, and looking back it seems that there was so much I had hoped to do and accomplish, which never came close to happening, because there was always some insurmountable invisible issue in my way, and I didn’t know how to deal with it.

Of course, it doesn’t take a brain injury (or two or three or nine) to thwart your fondest dreams. It happens to everyone, in some way, I suppose. The things we hoped for and wished would happen… that never did… the plans we had and ambitions we felt… which came to naught, for whatever reason… But I can’t help but wonder what might have been, had I not had all that to deal with. Thinking back to how I was when I was a kid… my mother tells me I was once such a happy and engaged kid… then that changed. For more than 30 years.

I know I should really be grateful that I’m out on the other side of all that, with the real reasons and the actual causes clear to me now. And I am profoundly grateful. At the same time, I can’t help but feel a keen sense of loss at all those years that were trashed because of an host of invisible issues that nobody knew were there, including myself.

Well, anyway, it’s a new day and I need to get on with it, not sit here and feel sorry for myself. I guess one way I can look at this is that I had a ton of experience along the way to teach me compassion and patience and round out the sum total of my life. Things never ever turn out the way we expect, in any case, and truth be told, I’m lucky I’m alive. I’ve got a lot going for me — my health, a fresh new outlook, a far better understanding of why things are the way they are with me, and lots of tools to address those things. I have a pretty good sense where my Achilles Heel limitations are, and I know how to address them, pretty much.

Getting down, because I’m feeling overwhelmed by the things I’m telling myself about my past experience — few of which are positive and uplifting at this moment — just doesn’t make sense. So, I’m going to stop that “stinking thinking” for now.

I think all in all, I’m in a pretty good place to deal — I might have my share of issues to deal with, but who doesn’t? What’s more, the fact that I have learned to deal with uncertainty and insecurity and constant shifting change, and I can function well in spite of it all, has positioned me extremely well for life in these modern times. Learning to live very well without a very good memory actually gives me an edge in life, because it’s taught me to shift and adapt and find compromises when things become blurry and unclear. Knowing how to function in the face of uncertainty and total confusion, and knowing how to take action despite a lack of direction and guidance and specific information qualifies me extremely well for my present situation, which has none of the guidance and direction and specific information that any of us would benefit from having.

I know how to keep going. I know how to set a direction. I know how to do that, and that’s what I’m doing.

And brain injury awareness is at the center of my strategy. Because the minute I lose sight of its presence and effect in my life, my goose is cooked. All of the executive function abilities listed above are required for functioning well in my present life. I have issues with a large number of them — but I also know that, and I know there are ways I can address them. And so I do. With awareness. With resolve. With hope. With my share of trepidation and dread and anxiety, sure, but still with determination that I will not be denied the life I choose to live.

So it goes.

Onward.