And the “embracing change” emails start to circulate at work

In another couple of weeks, they’re going to start reorganizing the company I work for. And the best damn’ job I’ve ever had, may change. Forever.

That would be a record. Usually, they take at least a year to decide to go in a different direction, and I have to scramble to line something else up.

Frankly, it pisses me off, that all this is happening. It’s like the mainstays of my life are dissolving out from underneath me. My neuropsych is retiring, my PCP died, and now my job may be changing — if not going away entirely. I looked on LinkedIn. The company we’re merging with already has a bunch of people that do what I do. And they’ve been doing it longer. And they are generally 10-20 years younger than me.

Oh, God.

I’m 50 years old, and I’m sick of this sh*t, quite frankly. Part of me wants to just opt out and crawl under a rock. I’m actually really hoping that I’ll get an early retirement package. I haven’t been with the company long enough to take them up on their regular offering of early retirement at 50… or 55. But in the grand scheme of things, people who are older are members of “protected classes”,which makes us harder to get rid of, when the time comes to restructure and downsize.

That time always comes, eventually.

Always.

And I’m hoping like crazy that they can buy me out for a nice chunk o’ change that will let me skate along for a while — and free me up to do some other things with my life. It would be completely, totally awesome, to change careers, right now. All the drama of the tech world just gets stupid, after a while, and it would be awesome if I could do something different with my life. Maybe teach. I would be a good teacher — especially for folks who are coming up in the tech world after me. I could tell them a thing or two about how to have a resilient career through their most productive years. If there’s one thing I know how to do, it’s find work and keep working. I could teach others how to do it, too.

The main thing I worry about is my insurance. It’s expensive. Then again, if I got a package that paid for my insurance for 12-18 months, I would be so set. That would be amazing.

But who  knows what will happen? I think we’re going to find out in the next month or so. They already have people looking at how to reorganize things. They didn’t waste any time. And I’m guessing they’ll want to tidy up before the year is out, possibly to take advantage of tax breaks. If they can shed a bunch of people and pay out a truckload of money, then maybe they can ease their tax burden… and make things easier to rearrange in the new year.

For now, I’m hanging tight, figuring out my different Plans Of Attack. They sent out a link to a “change hardiness” questionnaire, and apparently, I’m a Master Of Change. Ta-da. Ha. Pretty funny. Few things are more difficult for me to navigate, than change — I just know what I’m supposed to do, and I do it, which supposedly means I’m adept. But all the while that I’m doing it, I’m dying inside. I’m in excruciating pain. I can logically think and function, even while I’m in blinding pain — I’ve been doing it for years. But that doesn’t mean I’m not suffering and struggling.

That’s the thing my neuropsych doesn’t seem to realize. It’s not that I’m compartmentalizing my pain and frustration and emotional upset. It’s that I learned an awful long time ago — mainly through long-distance running and having a blazing headache, 24/7 — how to continue to think clearly and function despite feeling like I’m dying inside.

Which brings me to the checklist for the next neuropsych I deal with:

  1. They need to be an athlete — former or present, preferably endurance — so they understand my own perspective on things and appreciate my emphasis on performing at the top of my game whenever possible. Athletes understand things that non-athletes don’t – and my present neuropsych is about as far from an athlete as you can get. They’d rather get a root canal, than exercise. That seems strange to me.
  2. They need to be a good conversationalist, so I can continue to practice my sequencing and flow and active listening skills. The one way that my neuropsych has helped me the most, is just being someone I can talk to without being judged or challenged or made to feel stupid. More than anything else, that’s been what’s helped me.
  3. They need to be easily accessible. All this driving back and forth to get to and from… it’s just hard on my system, and it really puts a dent in my week.
  4. They need to have an open mind. My current neuropsych seems to think they have everything all figured out, after having practiced for 40-some years. They’re a bit too brittle for my comfort, at times.

That’s my list, so far. Honestly, I could live with just the first two. And of course, all this assumes that they know a ton about brain injury and take the approach that recovery is actually possible.

Anyway, it might be moot, after my neuropsych leaves, because I might not have access to that kind of care, thanks to my insurance situation. But it’s a thought. Heck, maybe I could work a trade with a neuropsych to just stop by and talk to them on a regular basis about whatever — without them needing to “treat” me. I could trade some pleasant conversation with someone who’s bound and determined to get their life in order, as a counter-balance to all the other folks they deal with who need their help but have less determination and drive, and who sort of depress them after a while.

I could be a ray of sunshine in their cloudy day.

But who knows what will happen? All I know is, today I am driving to see my family for Thanksgiving. And I’m looking forward to getting away from all this.

I certainly am.

Onward.

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The biggest barrier to progress, is being convinced that you KNOW

Imagine what’s possible, when you just let it go — and grow

Okay, so here’s my question of the day:

In the land of mindfulness-oriented behavioral health providers, how is it that the concept of Beginner’s Mind gets lost?

I’m specifically talking about my own experience with behavioral health folks, including friends who are psychotherapists, counselors I’ve seen, as well as my neuropsychologist. In all my years of seeking out help for my issues, I have but rarely encountered individuals who were really able to suspend judgment and not get stuck in the trap of continually seeking out ways to reconfirm their own world views.

And how many times have I sat across from someone who was professionally trained to help me, watching them not listen to me for what I was saying, rather for confirmation of what they believed…?

I think it’s wonderful that there are professional tracks for people to go down, to learn how to help others. At the same time, though, people also need to not get stuck in thinking they have it all figured out.

Because the behavioral health landscape is changing dramatically, especially compared to where it was just 10 years ago. We know so much more about the brain and its mechanisms than ever before. Yet we have just only begun to scratch the surface. So, let’s not get all hoity-toity about how much we know and how clued-in we are, thanks to our specialized skills and whatnot.

To me, orthodoxy (being convinced that you’ve got THE SECRET to how things work) and rigidity (never, ever changing your world view) are even worse liabilities than a brain injury. They make it extremely hard to adapt — which is precisely what we need to do as TBI / concussion survivors. We may be changing and growing and whatnot, while our providers are still stuck in their own versions of reality — which may or may not be useful to us.

It really is a problem. But I’m not the one to run around telling people that they’re too stuck in their ways. They have to see and realize it for themselves, and let go of their pride, arrogance, hubris. I’m sure it can be very, very difficult, dealing with brain-injured folks and their families/loved-ones, not to mention the healthcare system. It can put you into a state of perpetual fight-flight, which makes you even more susceptible to egotistical tendencies, arrogance, and prideful blindness.

I think especially for those folks who have been on the leading edge for many years, who were ridiculed and marginalized and made to feel “less than” because of their forward-looking stance. When you’re continually attacked and thwarted, it can do a number on you. I know how that is, and it’s no fun.

So, that cannot help but affect you. It cannot help but color your world view and make you biochemically and neurologically inclined to behave in ways that are defensive and self-supporting. Especially if you’ve had to shore up your own self-confidence and self-image and professional reputation, lo these many years, that can train you to be a certain way… a way which is intent on finding proof that you’re right, that you were right all along, and “they” were all wrong to doubt and thwart you.

Yes, I get how that shapes and conditions you.

At the same time, the higher purpose (of being of genuine help to others) needs to trump the hunger of your ego.

In the end, isn’t it more fulfilling to continue to learn and grow, rather than being someone  whose main purpose is to ease the pain of the daily stresses of life and prove their “rightness” to themself and others?

I’m not a behavioral health provider, but personally I think I’d rather be learning and growing than constantly being on the defensive about my own convictions.

In the end, it can much more interesting to find out you’re wrong… and expand your concept of what’s right. There is so much more to discover about the human systems, the brain, and how they all interact.

I hope I’m not alone in this.

St. Barbara of Arrowsmith-Young

Thanks for the help this past Sunday

So, on Sunday I spent the afternoon reading Barbara Arrowsmith-Young’s “The Woman Who Changed Her Brain”, about how she learned how to identify the underlying issues beneath her severe learning disabilities, which had made her life a living hell for 26 years of her life. I found the book for free on Scribd.com — my new favorite place of all time. You can read the book for free here: https://www.scribd.com/book/224350322/The-Woman-Who-Changed-Her-Brain-And-Other-Inspiring-Stories-of-Pioneering-Brain-Transformation – you just need a free login.

Anyway, I am finding a lot of similarities between her situation and mine, despite obvious differences. And it occurs to me that after hearing a number of accounts of her hitting her head (running into things, banging her head before she started to study, etc.) TBI might just factor into her account. She focuses on the learning disabilities parts, rather than the root cause, so that makes the book more accessible for folks who have had any kind of difficulty with learning and understanding and communicating — me included.

One section in particular jumped out at me yesterday:

I recall a twelve-year-old student with average intelligence but whose severe weaknesses in both the left and right prefrontal cortexes left her as compliant as a young child — so compliant that other children would toy with her and order her to stand and sit on command or to stay in the schoolyard long after recess was over or to surrender her Nintendo game. Her neurological weaknesses had robber her of her ability to evaluate a command and decide whether it should be obeyed. She addressed her problem areas and eventually was able to say no.

That’s pretty much me — but in very different kinds of situations. I didn’t have a problem with being compliant and going along with others as a kid. If anything, I was defiant and went against what anyone and everyone told me to do (except for my love interests — they could always boss me around).

The compliance and obedience and lack of questioning happened in adulthood. And I wonder if the three car accidents, the fall off the back of the truck, and the occasional head-banging — all in my early adulthood — might have affected my prefrontal cortexes to the point where I would just compliantly do whatever my spouse told me to do.

If that’s the case — and my compliance has been neurological, rather than emotional or character-based — then that’s a huge relief. And it means I can do something about it. For close to 20 years, I pretty much went along with whatever my spouse told me to do. It wasn’t so pronounced in the beginning, but then it got worse.

I had a car accident in 1997 where I was rear-ended, and I couldn’t read for several days. The letters swam on the page, and I couldn’t concentrate on anything. I recall feeling weird and shaky and being a bit “off” for some time after the car accident, and I wonder if maybe that affected my prefrontal cortexes and made me more compliant. People around me thought my spouse was bullying me, that they were being abusive and domineering, but honestly, I just went along… because it was the only thing that seemed useful to me.

I need to check around to find out more.

Anyway, that’s just one part of the book that I’m really enjoying. There are a number of different places where I recognize myself — the hesitance, the inability to get things done, the self-regulation problems… I’m not sure I want to think about them in terms of learning disabilities, but rather brain capabilities. And they apply to all kinds of situations, not just educational ones. That’s something that the author talks about a lot — how addressing these learning disabilities will improve functioning in the rest of life.

What Barbara Arrowsmith-Young has done is remarkable. She’s really figured it out — and from the inside, not from the outside. It’s amazing. I’m a huge fan, and if I were religious, I’d recommend her for sainthood. Her story is one of the reasons I got myself into neuropsych rehab, in the first place — when I read Norman Doidge’s “The Brain That Changes Itself” her story stood out for me more than any others. Because she took it on herself, and she did the work, instead of having someone else do it for her. And now she’s passing it on to others. She does public lectures. She has her Arrowsmith School. She’s written a book.

Unfortunately for me (and probably many others), the Arrowsmith School is expensive. And it’s in Canada, which is not an impossible distance from me, but still… I have to go to my job each day, I don’t have a lot of money to spend, and I’m thinking there must be another way to get this kind of help without being locked into a specific location, or paying someone to get me on track.

Again, I come back to living my life as the best recovery. Living fully and reflectively. Mindfully. Engaged. All those catchwords that basically say,

Do the best you can each and every day…

Be honest with yourself about what’s going on…

Learn from books and movies and the world around you, your experiences, your teachers and your mistakes…

Change what you can so you do better next time…

And share what you learn with others.

Absent the resources to enroll in the Arrowsmith School for months (if not years), and with the help from a handful of competent professionals, I seem to be making decent progress.

Speaking of which, I’ve got some chores to do.

Onward.

Amiss, but getting better

On second (or third) thought… no thanks

I’m scrapping the idea of going to the ER today. I stretched and moved yesterday, and I took a real break — spent the afternoon napping, reading Barbara Arrowsmith-Young’s “The Woman Who Changed Her Brain” (more on that later), and just puttering around the house, taking it easy. I’m going to mention the left-side weakness to my counselor, just so someone else knows about it. And I’m probably going to check in with my neuropsych on Wednesday. I do feel better, after taking some time off, and now the idea of embarking on a medical adventure doesn’t seem like a good use of energy.

Oh. My. God. When I think about having to explain my situation to doctors all over again… Yeah, no thanks.

So, a big shout-out to those of you who talked me back from that edge. I owe you.

It’s Monday. Only two more days in the office 20 miles from home. Then I move to the office 5 miles from home. It’s exciting. Also, I’m barrelling down the road towards a couple of big-big deadlines this week. That makes things easier.

It’s interesting — I’m gradually getting the hang of living by deadlines and holding people to them. In past situations I’ve worked in, there were two kinds of situations. Either

  1. The deadlines were fluid and there wasn’t a hard-and-fast rule about when things got done, and in what order. People were sort of lackadaisical about doing their jobs, and if it got done, then woo hoo. But if it didn’t get done, oh well.    Or
  2. Deadlines were in place, but everybody was a top-notch over-achiever who would have sooner cut off their left hand, than not do their job.

Now, everything is about the deadlines… but I don’t have a top-notch gang of over-achievers available to me, to get the job done. I have maybe one or two, who are usually overworked.

Sigh.

Well, it’s all very educational. Now I get to learn how to motivate people who have no real reason to be motivated at all. They don’t report directly to me, they aren’t all that thrilled about their jobs, and the burning desire to excel doesn’t seem to light up their days and nights.

Interesting.

So, now I get to learn how to make it all happen. And in the end, that’s going to be a valuable skill. I just have to acquire it.

I’ve got some more work to do on restoring a sense of self after TBI. I’m also restoring a sense of my own self — as much by slogging through the tough times, as experiencing the good times.

In a way, slogging through the tough times is even more useful to me than having everything go well. It shows me that I can do this thing, called adapting and overcoming. And it teaches me valuable skills along the way. I am extremely rigid and uncompromising in some ways, which can come in handy, when it has to do with personal integrity and delivering on my promises. When things come up to oppose my grand plans — as they invariably do — I can either buckle and fall to pieces (that sometimes happens), or I can learn from it and add to my overall knowledge and skill in handling those types of situations.

I choose the latter. And instead of tearing myself down — e.g., beating myself up for going off the deep end yesterday with the sensations I’m having on my left side — I can learn from the experience, chalk it up to, well, being human, and move on with a little more information under my belt.

And when I focus on learning and growing from experience, that builds up my feeling about who I am and how I handle myself.  Getting bogged down in despair and frustration is not how I want to be. It’s now how I understand myself to be. So, I have to find a better way. And recognize my limits — my tendency to go all catastrophic on things that happen with me — so I can keep them from taking over my life. I have limits, just like anyone else, and they are part of me — but only a PART of me, not all of me.

Having a broader sense of myself as a collection of many features and qualities, as well as a lot of strengths along with my weaknesses, makes all the difference in the world. I can’t gloss over the tricky parts, but I sure as hell can emphasize the cool stuff, and make the most of that.

Speaking of making the most of things, I need to really focus on getting into my day. It is SO HARD to get going for work, this morning. Mondays have been very difficult for me, lately. Transitioning into work and really getting invested, has been a monumental task. I dread everything about it, and I can’t seem to get into the day, no matter what I do. I know why, though. It’s old patterns from many years of bad experiences that are cropping up again, just at this point in time. Four months into just about every endeavor, this happens with me. Like clockwork. More on that later.

Anyway, the day is waiting, and I have a lot to get done today. Things are looking up, and that’s a good thing.

Onward.

Incredibly simple. Unbelievably hard.

Why do/don’t we do it?

My neuropsych is out of town for a couple of weeks, so I’m fending for myself. I had a kind of rough weekend, capped off with a meltdown over some real concerns over my spouse’s self-care habits (such as they are).

What I had hoped to convey was, “You have to take care of yourself, or you might as well be leaving me – it’s not healthy to live the way you do, and I care about you too much to be comfortable watching you live like this.”

What actually came out was, “I can’t believe you are doing this shit all over again! Didn’t you learn the first time? Do you really want to cut your life short and have it be friggin’ miserable, because you can’t be bothered to actually take care of your own health?!”

Clearly, they’re different messages, and the second one is a far less effective one, because it just triggers all their fears and anxieties about death, and they end up terrified and on edge and not wanting to be anywhere around me. I got home from work late last night, and they promptly left the house to “run an errand”. Yeah, I got the message. Whatever.

Really, people, it’s not that complicated to take care of yourself. It’s also not that complicated to recover from concussion/mild TBI. Granted, there are complexities in the brain and the human psyche that complicate things terribly, but when you break it down into its different pieces, and when you have the orientation that the human brain and the human system work on simple cause-and-effect… and the brain is constantly rewiring itself along the lines that we choose to rewire it… it simplifies things even more.

So, why is it so friggin’ hard to make lasting changes in our lives? Why is it so incredibly difficult to recovery from mild TBI/concussion? Why are the long-term outcomes so disheartening, and why are so many of us – each and every day – struggling with things that could be so easily dealt with? Why do we not do the things we know are good for us, and do the things we know are bad for us? Furthermore, why do we do things that are obviously BAD for us, thinking that they are somehow good? I don’t get it.

I think the thing is, we don’t do what we do because of logic. We do what we do based on how things feel. We “go with our gut” when we should really be using our heads. And we can easily and quickly talk ourselves out of doing the exact thing we should be doing, with some lame-ass excuse that doesn’t even look good on paper. We can justify anything — hell, we DO justify anything — just… ’cause. And in the end, we do tremendous damage to our bodies and minds and hearts and spirits, for reasons we cannot detect.

There is so much needless suffering in the world, it’s not even funny. And yet we just accept it as “the way things are” and go on doing what we do that screws us up, day in and day out.

Looking at people who are close to me who choose to do things that are just unbelievably unhealthy, the one common theme that unites them all, is that they’re all trying to ease the pain. The pain of a difficult childhood. The pain of dashed dreams. The pain of lost love. The pain of disappointment and hurt (both incidental and deliberately inflicted by others). So much of what’s done by the unhealthiest people I know is about easing their pain… rewarding them for just getting through the day… making them feel normal and whole again, if only for just an hour. They spend countless hours in front of the television, snacking… or on the computer (again, snacking)… or sleeping… or distracting themselves from their discomfort with gossip or chatting with friends or playing games of one sort or another.

And yet, very, very seldom, do I see these people actually taking regular steps to overcome the behaviors and habits that cause them pain in the first place. They are in a lot of pain over pulled muscles and they can’t move much… but they don’t actually do things for themselves that will heal those muscles and strengthen them when they’re feeling better. They have diabetes and high blood pressure, but they ease the pain of anxiety over their health by sitting around and snacking till 3 a.m. They have problems with their eyes, which need to rest to heal, but they push themselves even harder and just put drops in their eyes when things become intolerable. They have problems at home, and they can’t stand their relatives, but they still go along with their spouse on trips to visit those problem family members and they give into whatever their in-laws ask.

Some small changes could go a long way to making things easier for these people, but they don’t seem particularly interested in making those changes. Somehow, it is easier to just keep doing what they’ve done, even though it’s made their lives more difficult and even dangerous. And when I talk to them about making changes and keeping on with it, they agree that they would like to, but it “just never seems to happen.”

Hm. Okay, then. Here might be one of the issues — seeing life as something that “just happens” rather than being something that we direct, each and every day, with our thoughts and behaviors and choices. The belief that life “just happens” to you seems to go hand-in-hand with a history of victimization as a kid — at least among the folks I know. Those I know who make the most hair-raising choices about their lives and do the least for themselves, were abused as kids in one way or another, and they openly state that they’re lucky just to get through the day. They see themselves as incredibly unable to actually make changes in their lives — change is what happens to them, it’s not what they make for themselves.

How do you talk to people like that? When I say they’re “incredibly unable to make change” — I mean just that — it’s in-credible — not credible — not to be believed. It’s just flat-out untrue. We all make changes in our lives, each and every day. We just aren’t aware of it, either because the changes are slow coming or because we’re so used to doing certain things that result in certain results, that we just take those things for granted. Like turning the steering wheel of your car will move your vehicle in a completely different direction, some of the choices and actions we take in life are so ingrained that we don’t even really think about them.

But other choices and actions — some of which take less practice than steering a car, or are even simpler to do (it doesn’t take nearly as much eye-hand coordination to not dish up a third helping of that high-calorie, high-carb foodlike substance for your dinner at 10:00 at night) — seem so difficult… so impossible… that “it just can’t be done.”

And so we stay stuck.

Same thing with mild TBI/concussion recovery. I know I need sleep. I know I need at least 8 hours to be normal and human. I know I need to track my activities and behaviors, and I know I need to exercise on a daily basis. But do I? Not nearly as well as I could — and should. I operate on far less sleep each night, I don’t track my daily activities like I once did, and I don’t exercise each and every day. I am working on all these things, which are quite simple to do — but they’re also unbelievably hard to accomplish, each and every day.

Now, I know I’m human, and life is an experiment in imperfection, but there are some hard and fast guidelines that will obviously help me live my life to the fullest — and I haven’t been following them the way I should. I run out of steam. I lose motivation. I can’t seem to get inspired. And I fall short. Again and again. It’s pretty discouraging, actually, because I know what I know and I am determined to use that knowledge… and yet I don’t. Like my diabetic friends who just don’t take care of themselves, there are plenty of things I just don’t do — much to my detriment.

The weird thing is, I’m not a victim. I don’t perceive myself as one, and I don’t live that way. Or do I? All the world, it seems, is full of messages about how helpless we are, how hapless, how terribly victimized we — and others — are in the face of terrible events. Watching the news and/or other evening television, there seems to be a constant stream of messages about how helpless people are, and what a pity it is for everyone to have such bad luck. I see this on television dramas, as well as the news — someone tries to do something, then fails. Someone attempts to do something, but can’t. Due to circumstances beyond their control, sh*t gets eff’ed up. And they end up even farther back than when they started.

So why start, right?

It’s weird — it’s like there’s this concerted effort to educate us in very subtle ways about how it’s all quite futile, and the best we can expect or hope for is to be comfortable in the midst of our suffering. I grew up with folks who believed that this life was all about suffering and the best they could hope for was eternal reward for doing good on earth while they were here. There wasn’t much hope in that outlook. Nor is there a lot of hope in the movies and television shows that portray people making poor choices, getting into trouble, and just being lucky enough to extract themselves from near disaster. Nobody talks about how they might have avoided the situations entirely if they’d just thought things through. It’s all about overcoming adversity — even if the adversity was created by you.

Anyway, there’s a lot more to it, but I’m running a little behind schedule, so I need to wrap up. What makes us do the things we do? What makes us think the things we think? There is so much — so very, very much — that we can do to help ourselves, whether we’re dealing with TBI or not. And yet, so often, we don’t do it. We do something completely different, as though we had good sense. And then we wonder why things don’t work out.

Ultimately, I think it comes back to the body — our physical state — and the idea that many of our decisions actually happen prior to the emergence of conscious thought. Our bodies are primed for fight and flight — especially if we have a history of trauma or traumatic injury — and we rely on that state to get us through our days. We rely on it so much, that we create conditions that put us into a state of constant stress and strain, because this will give us the kind of energy we’re used to having and using to get by.

After being wrapped up in my job change drama-world for the past month or so, I’m coming back to the Polyvagal Theory information that I got so excited about a while back — then got distracted from, because my attention got pulled off in a million different directions, and somehow I felt I HAD to explore those different directions. The Polyvagal Theory says just what I have been suspecting for quite some time — that the thing that drives so much of our action and our decisions actually takes over before conscious thought, and it hijacks our decision-making process to serve its own individual needs.

With this understanding of cognitive hijacking, the question of why people do what they do (when doing that is obviously so bad for them – and might even kill them) makes a lot more sense. And it brings me back to my exploration of the Polyvagal Theory. Gotta get that focus back — it’s incredibly simple, and it totally makes sense. But it’s also unbelievably hard.

It’s time to go

Long road ahead...

Oh, gawd, here we go… So, I’ve been experiencing what amounts to a pretty phenomenal TBI recovery, getting back a quality of life that has been slowly (and quickly) eroded by successive traumatic brain injuries over the years. I’ve come to a place in my life where I’m a lot happier and more settled with myself than I ever thought I’d be, and I have a better understanding of myself and my mission in life, than I’ve had in a long time. I also have more faith in myself and my abilities than I probably ever had before. Much of this is thanks to my neuropsych, who has stuck with me through some pretty crazy times, and who has been a steady and regular influence in my life on a weekly basis since 2010.

And now it’s time to go… To part ways with said neuropsych.

Now, there was a time, when I thought I’d never move on. And there was a time, when I never wanted to go back. Now, I’m at that place where I don’t feel strongly, one way or the other. Perhaps more importantly, now my neuropsych is starting to annoy me.

I know they mean well. They have my best interests at heart. I do believe that. But the way they talk, with their deliberate, careful diction, and their thoughtful pauses, is getting on my nerves. I feel like they’re going over the same things again and again and again, and I don’t know what to say, anymore, that will be different from what I said last week.

Yes, it’s time to move on.

I suppose it happens to us all. We go through these stages of growth, healing, discovery, adventure, calamity, cluelessness, hope, despair… you name it. But being the living, growing beings we are, we eventually pass out of that stage and move on to the next.

It worried me, when I first thought seriously about it, this past week. But the more I think about it, the more I think — yes, it’s time to go. Time to get on with my life, leap out of the nest and see where my wings can take me. If they take me to the ground, then I figure out what to do next. But I figure it out, not my neuropsych. And I figure it out for me.

Anyway, it’s late. I’m tired. I’ve worn myself out, reading about Steve Jobs and what a mixed bag of a personality he was.

Aren’t we all…

TBI Issue #2 – Aggression

This post relates to the ongoing series Then And Now – Managing TBI Issues Over the Long Term which I’m slowly but surely building out.

I should probably call this TBI Issues #2A and 2B – Verbal and Physical Aggression, because while aggression can be a big problem post-TBI, it can take several forms. It can manifest as verbal aggression or physical aggression, but in either case it’s problematic. For everyone.

In my case, verbal aggression has often escalated into some sort of physical aggression — I haven’t struck anyone in recent memory, but I have thrown things (occasionally at someone), and I’ve broken things as well.

It happened a lot when I was a kid, too. I would just get more and more wired and wound up, and then I’d just lose it. Flip out on my siblings. Or one of the neighborhood kids. I didn’t just get time-outs, either. I was considered a menace by my neighbors — a real problem.

The net result? My family has always been a bit afraid of me, and they’re often on edge around me, when they sense my temper heating up.

My spouse is also afraid of me, on and off, and I’ve had to work pretty hard at not losing my cool, so they could start to feel comfortable around me again. The problem is, it only takes one or two episodes of me losing my cool, to trash all the progress I’ve made.

Back to square one all over again.

Or at least, that’s how it feels.

“On the inside,” it can be confusing and frustrating, as I often can’t tell that I’m getting edgy. All I know is, something doesn’t feel right when I’m having a conversation/discussion. It doesn’t feel “fluid” and I try harder to get my point across, the less effective I feel, and the more frustrated I become. And the edgier I get. And the more on-edge others around me get.

I don’t know if it’s a TBI thing or what, that I can’t tell when I’m getting edgy. I generally have difficulty figuring out what my emotions are, anyway. I usually feel like I’m happy, but sometimes I’m sad and I don’t realize it. Anger and fear both confuse me. For some reason, I just don’t “get” them, and I have to take others’ words for it, when they tell me I’m angry or sad. One of the confusing things is that I tend to tear-up over stupid little things. Frustration makes me look like I’m crying, which maybe I am, but it’s not the same kind of crying that comes from being sad.

It’s confusing. Which is frustrating. And anxiety-producing. And it just sets me off at times, especially when I feel like people are condescending to me or treating me wrong.

Verbal aggression is a bigger issue with me, I think, than physical — primarily because I’ve learned how to hold myself back with the physical expression. I’ve gotten into a lot of trouble over the course of my life for beating on people, so lessons learned. Still and all, sometimes it does come up and I walk a very fine line between “getting in touch with my feelings” and getting carried away by them.

It’s funny – my spouse used to lecture me about not being in touch with my feelings, like that was a bad thing. But you know what? Not being in touch with my feelings and being somewhat numbed out towards them makes it a whole lot easier for me to not get sucked down into the whirlpool of emotion. I’ve had shrinks lecture me about not being in touch with my feelings, too, as though experiencing all those emotions was actually going to help me. Frankly, with the emotional volatility that comes over me, everyone is better off if I’m completely out of touch with my inner world.

I’m sure there are people who will split hairs and tell me about how being in touch with my feelings isn’t the same thing as letting them run my life, but you know what? I’m not sure that’s accurate. Frankly, I was much more functional, aggression-wise, when I wasn’t “checking in” to see what was happening in my heart and soul.

Paying a lot of attention to what goes on in my inner landscape frankly makes me nervous and agitated — it changes very quickly, from time to time, which gets confusing and frustrating and pretty tiring, actually. So, I’d just as soon not do it.

What does this have to do with aggression? Well, if I can keep some distance between my head and heart and mouth, I’m far less likely to snap at people. I’m far less likely to get aggressive and go after people. If I can literally disregard what’s going on inside me, it actually helps me keep my cool. It’s when I start “getting in touch with my needs” that all hell breaks loose.

I start to feel slighted. Or overlooked. Or dismissed. Or ignored.

I start to feel sensitive. And raw. And vulnerable. Which I hate. And I start to feel like I need to defend myself from things and people who aren’t really out to get me — they just seem like they are.

Of course, my shrink friends love to tell me how I just haven’t processed it all enough, but you know what? Traumatic brain injury has a way of really mucking with your emotions and your interpretation of them, so what am I supposed to do — process a never-ending stream of constantly changing tsunami-like emotions? Please. No matter how much I may process them, they’ll never make sense, because they come from nowhere for no good reason, and they return to nowhere just like that. What a waste of time it is for me to process all that.

The thing for me is not so much processing my aggressive impulses, as it is recognizing and managing them up front. Once I get going, things pretty much go to hell, so it’s on me to manage the situations that give rise to aggression: fatigue, frustration, and feeling defensive. If I can just stay rested and keep my frustration levels down and take time to ask what the hell is going on before I jump to conclusions and start in on people, it goes a long way towards keeping me out of trouble.

But it’s never easy. Oh, no.

Good reading

I’ve just “re-discovered” Give Back, Inc., the organization/group that helps traumatic brain injury survivors get their lives back with self-therapy.

Their mission says:

GiveBack, Inc. is a recovery group for traumatic brain injury (TBI). Its purpose is not to help survivors to accept new lives that offer them limited options, but rather to help recoverers to deal with their deficits, improve their functioning, become active, and regain self-control of their lives.

I originally encountered them as Give Back Orlando, but the website has since disappeared, and it seems they’ve moved their operations to LA, as well as online. There is a Traumatic Brain Injury Support Group online that features regular postings from Dr. Larry Schutz, the founding director of this great organization.

I’ve been reading some of the articles about TBI and recovery and the different systems available to people. What I really respect about what I see, is that it’s based on many years of experience — both good and bad — and there’s still a perspective and a commitment to rehab and recovery, despite all the roadblocks in the way.

It’s safe to say that I would not be nearly as well-off as I am today, had I not come across Give Back. There was just the right amount of information for me, about just the right subjects, and I had room to move and develop my own self-therapy program based largely on what they outlined and suggested. And the changes to their suggested approach which I made to the recovery program I’ve been on didn’t negate the good their approaches offered. Obviously, everyone is different, and some of the suggestions just sounded hair-brained to me. But overall, the advice was sound, and I was under no obligation to do things exactly the way they said I should.

I’m really glad I came back to Give Back. Going along in my everyday life, it’s easy to forget about the things I need to do, to stay functional. And with the successes I’ve had, it’s easy (and tempting) to dismiss my difficulties and downplay them, thinking, “Well, I’m glad that’s over!”

But it’s not over. Brain injury is never over. The attention issues, the short-term memory issues, the fatigue and physical issues, as well as the processing speed issues may be mitigated by my coping mechanisms and compensatory techniques, but they aren’t going away. And if I don’t stay vigilant with them, they can rear their ugly heads and make my life a lot more “interesting” than need be.

The fact of the matter is, I have developed a lot of ways to deal with my issues. But if I don’t use them, I can get into trouble real quick.

So, I need to keep it green. I need to remember how close to the edge I was, when I first embarked on my recovery. I also need to remember that there ARE areas where I still have issues, and while my coping mechanisms may be great in most cases, they are not always second-nature, and I really have to work at them. I have to remember to do them.

And I have to keep in mind that when it comes to TBI, I may be a whole lot more functional now than I was three years ago, but I can easily go back to being non-functional with almost no effort at all. All I need to do is stop interacting with people when they talk to me, tell myself that I understand everything I think I do and not double-check, never write anything down, expect to keep everything in my head, and eat crappy food, drink too much coffee and soda, and stay up till all hours snacking and surfing the channels. I could also quit exercising each morning and stop paying attention to what’s going on around me. That’s a great way to go back to the way things were.

But if I keep my wits about me, stay mindful and pay attention to what’s going on, eat right and exercise each day, and I interact with the world and ask plenty of questions so I’m sure that I’m clear (even if I do feel like it makes me look stupid), I can stay on track. I just need to remember to do it.

And that’s where Give Back helps. Not only because of the forums they have there and the self-therapy materials they offer, but also because of the articles by Larry Schutz (I’ve been a fan of his work for some time, and that hasn’t changed). It’s so important for me to remind myself of where I come from, what I’m dealing with, and where I can end up, if I’m not careful.

I may move past the basic problems, and I may have my coping mechanisms in place, but if I don’t stay vigilant and keep up the level of effort required, I could end up like so many other TBI survivors — doing well initially, then slipping into long-term disability that I can never seem to shake loose.

How to help the “hopelessly” impulsive

For the last day or so, I’ve been thinking about how family members and caregivers can help TBI survivors overcome their difficulties. One of the things I rarely mention here, is that I’m not just a TBI survivor, I’m also an ABI caregiver. Someone close to me had several strokes a few years back, and since there as pretty much no one else they had — family is several states away, and their friends all pretty much disappeared after the strokes — I have ended up being their main source of support as well as rehabilitation.

I probably should have talked more about this, but my focus has been mainly on myself and traumatic brain injury, rather than stroke/acquired brain injury, and the times when I’ve sat down to write, I’ve often found it difficult to discuss what goes on with this situation (it’s been pretty intense at times). So, I tried to keep things simple and so I stuck with myself.

Now, however, I think I’m ready to start talking about what it’s been like to be in close contact with someone who has experienced a stroke (or two or three), and what it’s like to work with them to get back. It’s been a pretty amazing process, when I think about it.  A TBI survivor with plenty of their own issues helping a stroke survivor get back on their feet…  you don’t see that every day.

But I have to say, learning how to deal with my own issues has really helped a lot, with my work with this close friend. In fact, working with them and helping them regularly really got me thinking about my own issues.  I took several months off work when they got sick, since I had some savings I could fall back on, and I couldn’t just abandon them like everyone else had. And it wasn’t until almost a year into their recovery, that it suddenly dawned on me that I was having cognitive issues, as well. It really took until after the initial crisis and trauma had faded, for my thinking to clear up well enough to see how poorly I was coping. I was coping, sure, but I felt like I could have been doing a whole lot better… and no matter how hard I tried to do better, I couldn’t seem to get my actions to match my intentions.

So, I took it upon myself to track down my TBI issues… all the while in the background, there was this underlying theme in my life about helping someone else cognitively rehabilitate and get back on their feet. I’m not sure why, but it was like there was this really pronounced divide in my life — on one half, there was my work as a caregiver and rehabber for someone else… on the other half, there was my quest for information about my own cognitive issues. And for some reason, never the twain did meet, that often. This seems to be related to the tendency I have always had, to strictly divide the different sections of my life — school/work vs. home, friends vs. family, business vs. pleasure. I know a lot of people, but most of them don’t know each other. There seems to be a part of me that needs to keep different parts of my life separate and distinct, as though I’m afraid the the blurring lines will complicate everyting and plunge me in to chaos.

Well, whatever the reason, I’ve spent about the last four years dealing with brain injury issues on a daily basis, and a fair amount of my time has been spent dealing with someone else’s issues, not just my own.

It’s interesting, where I see overlap between my issues and my friend’s. They have many of the same problems that I do, but they are a very different person than I — much more emotional, much more given to anxiety attacks and paranoia. They had several left-brain strokes that we knew about, and other portions of their lower brain area showed lesions on the MRI from events that nobody knew about. Many of their issues seem exactly opposite from mine — where I am often oblivious to danger or risk, they are acutely aware of it.  Where I am often open to doing things that make no sense in light of my limitations — taking on three extra jobs, when I already know I’m overly tired, or going on expensive vacations when I can barely pay the bills I’ve got — they are closed to many, many things that I wouldn’t consider that daunting — like interacting with strangers, getting out of the house, finding a job, etc.

In fact, many of the arguments we’ve had over the past four years have been about them thinking I’m pushing them too hard or I’m too risky or daring, or I’m not being careful enough… and all the while, I’ve thought they were being over-the-top paranoid about simple everyday things.

Now, you could say that this is just personality differences, but I really believe that many of our differences have been exacerbated by our brain injuries.

For example, not long after my fall in 2004, I went for a walk in the woods with no bright colors on, during the early morning hours on one of the first days of deer hunting season (when there were clearly audible gunshots very close to where I was staying), and when people got scared about my risky behavior, I just laughed them off. I couldn’t see how much danger I was in, even though I encountered a deer hunter who had his rifle trained on me, till he realized I was not a deer. That’s the sort of thing never happened before my fall in 2004, and it doesn’t happen anymore, thankfully.

In my friend’s case, in the year or so after their strokes, they became severely agoraphobic, and extremely limited in what they would do and where they would go. They were terrified of doing anything that might exacerbate their condition, and they became compulsively fixated on what they ate and what was going on with their body. Now, I know that people who experience a severe health crisis are prone to do this, but they went about it in a way that was so slow and deliberate and careful, there was no way it was a sign of a neurologically intact person. They were very, very different from how they’d been, before the stroke.

My one regret is that I didn’t spend more time with them in the initial year or so, helping them get back on track. After a few months, I went back to work and I had less time to spend with them, so my involvement was limited to times before or after work, as my schedule allowed.

Looking back now, I realize there’s a lot I could have done. But at the same time, I was still reeling from my own TBI just two years before, and I was still pretty derailed in many ways. So I guess I did the best I could under the circumstances.

Looking at my friend now, there is a real difference between how they were in 2007 and how they are today. They are still way more deliberate and plodding in getting things done (just try getting out the door to an appointment on time), but they have regained a tremendous amount of cognitive flexibility and resources.

One of the areas where we’ve had to do a fair amount of work — and we’re still working on it — is in the area of impulsiveness. I’ve written about my own impulsiveness, but there’s their lack of impulse control, as well. It has been utterly maddening, to walk into their house and find the evidence of them starting many, many things, then obviously getting distracted and walking off to do something else. Food left out on the counters… clothing left in the washer for so long that it’s soured and has to be thrown out… wrappers and packaging lying around instead of being thrown away… the oven turned on and then forgotten about…because they got distracted checking their email.

I worry about it at times. What if they leave the stove on, and something catches fire? They’re a deep sleeper, and who knows if they’d wake up if there were a fire? They also have the smoke alarms in their house disabled, because they forget that they have something cooking and it burns, and then they have this ear-splitting shriek to contend with. Their “solution” is to remove the battery from the smoke alarm and continue to burn the toast.

I’ve discussed this with them at times — very carefully, because they get defensive and then yell and verbally attack me, and then nothing gets accomplished. I’ve called their attention to the fact that they’re forgetting things and wandering away on impulse. They sort of know it’s an issue, but I have to tread lightly because they’re so defensive and self-conscious about it.

What to do?

Well, I have been taking clues from my own neuropsych and I’ve been taking a more cognitive approach. That is, I’ve been trying to engage them in thinking things through ahead of time, getting clear on what it is they set out to do when they walked into the kitchen or sat down at the computer. I’ve been discussing what kind of life they want to live, what goals they have, what they want to do do with their time. I’ve been trying to phrase it in positive ways, finding the good in what they’re doing and looking for the rewards or payoffs in doing things a certain way.

It seems to be working somewhat. Originally, I was taking a more “behaviorist” approach, where I was focusing on rewards/punishments, doing a lot of criticizing and brow-beating. Clearly, that got nowhere and it was largely due to my concern for their safety. Once I got real about how it was my own worry that was turning me into a royal pain in the ass, I backed off and started focusing on the positives — what did they want to do with their life? How had the good things they’d done for themself helped them live their life better? How had they taken good care? And where they’d fallen short, how could they do things differently next time, so that they had a better result?

Their impulsiveness seems to have subsided somewhat. I think that just the lower levels of anxiety (probably thanks to me not showing up after work in the evening ready to take them to task for everything they did wrong during the day), and the focus on solutions rather than problems… as well as getting in the habit of thinking and talking things through in advance, has helped. Their impulsiveness seems directly related to their anxiety level — as it is with me — so the more we reduce the anxiety through positive reinforcement, good food and adequate rest, and just quality human contact, the better they do. And the better I feel.

It also helps to laugh. I found out about this video a while back, and I showed it to them one night after work.

We both had a good laugh, and now whenever we see unchecked impulsiveness rearing its ugly head, we say “I need to wash my car!” in a really bad British accent.

Humor really helps, actually. Having a good laugh takes the pressure off, and it also reduces the anxiety that feeds the impulsiveness — which is basically an unchecked need to relieve the pressure of daily life. The more relaxed and easy-going I am, in fact, the better they do, and the better I do. Sometimes it’s a real struggle to keep cool in the face of their impulsiveness. They have always been prone to “embellish” the truth when they talk with other people — saying they’ve got 20 things to do, instead of 10, saying that they participated in some activity, when they were really just standing on the sidelines — but since their strokes, they’ve been even more loose in their interpretations of what’s real and what’s not. It’s awkward, when they’re going on about something, and everyone knows they’re lying — everyone except them, that is.

I try to be understanding and not over-react. It seems hopeless, at times, looking at their finances and trying to help them think about how they spend their money. I, myself, got into a huge jam, and I don’t want them to do the same. But I also can’t let my anxiety get in the way of the message “Well, don’t beat yourself up – just try again,”

I also try to relate to my own experiences, for clues about what might be going on with them. The more I think about it, the more I believe that confabulation may come into it — that tendency to get mixed up and say things that aren’t true, without realizing they aren’t accurate. We’ve had discussions about the “stories” they tell, and they’ve told me at the time that they don’t realize they’re not telling the truth. It seems true to them, they’ve said. So, maybe there’s something to that — confabulation. Or at the very least some impulse control issues, where they just blurt out what comes to mind.

Anyway, whether it’s impulse spending or blurting out half-truths, impulse control has not been a strong point for my friend. They were impulsive to begin with, but after the strokes… trouble. Now, we have discussed different ways to adapt – they’ve started paying for impulse buys with cash instead of their debit card, so they can see how much money they’re spending. One month, they spent over $75 on coffee and donuts and another hundred dollars or so on fast food, when they were having trouble paying their phone bill. They didn’t realize the impact, however, until I sat down and went through their monthly bank statement and tallied everything up and showed them. Then they got it — and they started using cash more often.

They still have improvements to make, but don’t we all?

The main things that help in dealing with their impulsiveness are:

  • Staying calm and not escalating and making them nervous – anxiety just exacerbates the impulsiveness.
  • Talking things through ahead of time, so you can get clear on what you are hoping to achieve, and why.
  • Following up afterwards — in a very non-judgmental, easy-going way — to see where things went right and how things might be done differently later on.
  • Sharing stories from my own life about impulsivness and how I’m dealing with it — both successfully and unsuccessfully. Sometimes the unsuccessful stories are the best, because then they get to help me solve my own issues, and they can think through their own situation in light of my experience.
  • Keeping that line of communication open, and being honest about my concerns so I don’t end up enabling them at staying stuck where they are. I really believe that thinking things through and talking them through can help change how we do things — all of us, not just the brain-injured.

The bottom line really is, I need to keep in mind that this friend of mine has suffered a terrible blow in the past, and they are working their way back. I sometimes forget, considering how well they are doing now, that they were ever as impaired as they were. But they were. There are still underlying issues that need to be addressed, so it’s really an ongoing process of coming back.

The important thing is, they are coming back. And it’s hugely gratifying for me to know I played an important role in that recovery. That, alone, keeps me coming back to keep our friendship — and their health — going.