From Victim to Survivor… to Human

… or maybe we become something MORE.

I’m reading a paper written in 2010 by a sociology student called How Memory Affects Sense of Self: Stories of Traumatic Brain Injury. I haven’t gotten far, yet, but it’s pretty good. It’s a different sort of “read” than the published scientific papers I’ve been reading, and it’s interesting to see how someone well outside the field of neuropsychology or psychology or neurology, who’s just encountering TBI for the first time, experiences TBI survivors.

One of the things the author mentions is the use of the word “survivor” instead of “victim”. She talks about the folks in her study as “survivors”, because it “is more empowering and positive than ‘victim’ which sounds like something to be pitied.”

Aside from empowerment, I believe there’s an important difference between the ideas of “victim” and “survivor”. And I’ve been thinking that there’s even something beyond that, which is worth considering. I’m not sure if there’s one word for the “beyond-survivor” idea, but I still need to consider it.

These three concepts – victim, survivor, beyond-survivor – all have to do with experiencing a debilitating event. And the first two are all about the event itself. In my case, I’ll talk about TBI, although there have been a number of other debilitating events that knocked me for a loop. Job loss, relationship loss, financial catastrophes, losses of loved ones, a variety of injuries, and so on. They all set me back, and all of them victimized me in some way. And yet I went on living my life.

To me, being a Victim, is about saying, “Something really terrible has happened to me, and it’s so terrible, I have to stop living parts of my life, because the injury took it from me, or I’m way too gun-shy to put myself out there again. I’m safer inside, where my world is smaller, but I feel safer. And f*ck anyone who tries to pull me out of my shell. This injury is permanent, and I have to manage its danger for the rest of my life.

Lord knows, I’ve been there. Right after I got hurt in 2004, I didn’t know why things were so screwed up, but I knew they were. And I was living unconsciously as a Victim, building my life around all the problems I was having, without a really clear view of what those problems were. I had no idea how to fix them. I didn’t even realize the nature of them, or understand that a lot of them could be fixed.  I was living as a Victim. Just half a life — if that.

Being a Victim is about putting the injury at the center of your life, and living your life around it. We can easily make ourselves into Victims, by holding ourselves back from living to the fullest, because of how we think about the injury, how we think about ourselves, or what we believe is possible after the injury has passed. Being a Victim, to me, is about letting an injury define you and limit you, so that you are living less of a life than you otherwise could.

In some cases, the injury is so severe, it’s impossible to NOT be victimized by it.

And yet, that’s where being a Survivor comes in. A Survivor, in my mind, is someone who says, “Yes, that injury happened, and yes, it truly sucked more than words can say. It beat the stuffing out of me and almost took me out… but it didn’t win. I’m going to live my life, no matter what.

After I got a clue about my TBI (and all the others I’d had before), and I realized that I could change things, I started living as a Survivor. I was someone who knew that something terrible had happened to me, and I had really taken a hit from it. But even if I wasn’t living as large as I wanted to, I was still moving towards positive changes, still enlarging my life, still building my capabilities, still working each day to be better than before.

TBI still factored into my life, yet it wasn’t at the center. It was a major player in my experience, and I couldn’t afford to forget it. I still can’t afford to forget certain things and factor them in — like getting enough sleep, managing fatigue, keeping lists to keep myself on track, and remembering that the “crazy” going on in my head isn’t necessarily going to be there tomorrow, if I just get enough sleep tonight and come back to my problems with a fresh view.

Over the past year or so, something new has come up – something beyond “Survivor”, which is actually about just being Human. The thing about TBI, especially, is that it doesn’t always necessarily have to be debilitating. Its effects may be permanent in some ways, and there may be continuous challenges (and yes, problems) you continue to have as a result of it, but over time we can build up skills and abilities and find a new resilience that adds TBI to the overall “mix” of our humanity.

When you get to the place of being able to live your life more or less smoothly, with some bumps in the road that are more speed bumps than cliffs leading down to the abyss, and developing the ability to recover from those speed bumps in a matter of weeks, even days or hours, then I believe you’re past the point of being a Survivor, and on to the business of being Human.

Looking around, it’s impossible to know what challenges everyone is dealing with. Hidden disabilities (or well-concealed challenges) are a part of everyone’s life. TBI is no exception. Yes, it’s different. Yes, it’s not like other challenges. Yes, it has a host of problems that come along with it. But ultimately, it can become part of the fabric of our lives, part of who we are and how we are that doesn’t have to just stop us, but also make us different, unique, and cause us to develop strengths we otherwise wouldn’t have bothered to develop.

That’s pretty much where I am now. I quit thinking about myself as a Victim, years ago. And I don’t really think about myself as a Survivor anymore, either. I’m something else. Yes, I know TBI is an issue with me. How could I forget? But that’s not all I am. There’s more to the story. And in a strange way, TBI helps me find out what that “more” is.

Well, enough talk. The day is waiting.

Onward.

A whole new me shows up

It’s interesting. My neuropsych is about to get to know a completely different side of me, which I suspect they had not encountered much before. I’m not even sure if they know this side of me exists.

For years, I’ve been going to see them early in the week, before things got too crazy, and the rest from the weekend hadn’t worn off, yet.

Now I’m seeing them at the end of my week, when the weekend is a distant memory, I’m half-baked from exertion, and I just don’t have the time and patience to be thoughtful, mindful, and all that contemplative stuff.

I suppose it’s just as well, because I’ve been trying to tell them about the challenges and hurdles I have to deal with on a regular basis, and they just don’t seem to think there’s that much to it. I don’t want to make too much of it, but by the time Thursday evening rolls around, I’m half-crazed with fatigue and stress and frustration.

And I don’t have nearly the attentional bandwidth and concentration I do, early in the week.

It’s been a huge adjustment for me, to see them Thursdays instead of Tuesdays. I hate to say it, and I hate to admit how hard it is, but it really tears me up, not being able to check in on Tuesdays, as normal.

Well, things change. People change. Situations change. This is just one of those things.

But it would be nice to have some input and check in, before the whole of the week gets away from me.

I guess I’ll just have to adjust and acquire some new coping skills.

Geez, what a pain in the ass.

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.

Letting it go – for good reason

I missed the original date, but maybe they have an “encore” event this month?

I had a lousy meeting with my neuropsych on Friday evening. First problem was, it was Friday evening after a very long week. I was not in a good space, and neither was my neuropsych, apparently. They kept wanting to talk about diagnostic labs and bloodwork and tests and all that stuff that goes along with figuring out levels of vitamins and what-not.

As it turns out, I have been running a low-level Vitamin D deficiency for about five years. I am sure it has not helped my cognition in the least. But my doctor told me they weren’t worried about it, because they figured it would sort itself out. I was supposed to be supplementing Vitamin D — which I often forgot or just decided not to do. I resolved — about a million times — to spend more time outside and get my Vitamin D through natural sunlight. But then I didn’t do it, and my D levels stayed low — to the point of danger.

The weird thing is, my PCP didn’t seem to think much of it. Despite the fact that Vitamin D levels directly affect cognition, and you can end up feeling foggy and dull as a result. I’ve felt that way for a long, long time — but since I started aggressively loading up on Vitamin D, and my levels have improved, I don’t feel nearly as foggy as I used to. I’m now within the acceptable range (in the lower 33%, which I’d like to raise), and I feel more clear and “with it” than I’ve felt in a long time.

And that pisses me off, that my PCP just kind of blew off my Vitamin D levels and was willing to wait a year, to see if they were better. It’s like my doctor waits for me to report symptoms, but to me, everything is a tangled mass of experiences and feelings, and on any given day I can feel both fantastic and terrible, all at the same time, so making sense of any of it is sorta kinda impossible in my jumbled-up head. So, I take a stab at things, and if I get lucky, it works out. If it doesn’t work out, I try again — and again — and again — till I get where I’m going.

Ultimately, it pays off, but it’s a long time getting there, sometimes.

Anyway, I got pretty angry that my neuropsych kept talking about healthcare and choices and things to do to get proper care. I couldn’t see what it had to do with anything that mattered at the time, and it made me angry that they were going on and on about the best process to follow to get medical help. Now, I realize that they were kind of pissed off that my doctor had done nothing about my Vitamin D levels — that they hadn’t kept an eye on it and raised a flag earlier.

Part of the responsibility is mine. I didn’t think that Vitamin D was that big of a deal, and I figured I could just go outside regularly and get the light I needed to synthesize. Untrue. I don’t go outside nearly enough (as is the case now, as I sit at my desk in my study, looking at the outside, rather than sitting on the back deck, working “in the wild”). I didn’t realize that Vitamin D affected your cognition and mental functioning. If I’d known that before, I’d have done more about it.

But that’s water under the bridge.

Looking back, I realize that I spent a lot of time being really angry with my neuropsych. I didn’t tell them that, but I was upset to the point of wanting to not go to them anymore. That happens, every now and then. I don’t “get” what they’re trying to communicate to me, I feel like they’re talking to me like I’m an idiot, and I get resentful and resistant. And I want to just drop it and just live my life without having to work at it.

But that generally doesn’t go that well, and if I walk away from my neuropsych, I walk away from one of the very few people who understands what’s going on with me — and is equipped to talk some sense into me. Going it alone has a way of backfiring on me. I have few real friends. I’m on friendly terms with a lot of people, and I feel pretty connected with other people, but I have no immediate support group I can turn to — other than my neuropsych. I also have a therapist I see — but that’s more to check in and make sure I’m taking care of myself and to build some self-preservation skills in the face of dealing with my spouse’s various illnesses (both physical and mental). Other than those two, I’m on my own.

Anyway, yesterday I decided not to keep harboring that anger, and I just let it go about my neuropsych being a pain. I realize now that what made me angry, was 1) being really tired after a long week, and 2) not fully understanding what they were talking about, and why. Also, I think my neuropsych was tired after a long week, and they were in rough shape, as well. I’m the “easiest” patient they have to work with, I believe. There are tons of other things going on for them, and I’m just one face in a crowd of many — many of whom need a lot more support and assistance than I.

This is how it often is. When I’m really tweaked and upset, it’s best that I just get some sleep, take a long walk, and let it all settle. Then I can get my balance again, get my bearings, and enjoy the life I have, instead of stewing about the life I’m imagining.

Weather is nice today. I should be able to get that last lawn-mowing of the season done, later this afternoon when the grass is more dry. I may just go out for a long ride, too. I hear the colors are getting nice up north.

Making sense of … nothing

What happens here, affects everywhere

WordPress featured a blog (no longer actively maintained, but still there for posterity), about the experiences of someone who had a stroke at 33. She chronicled her experience at http://jadepark.wordpress.com/category/the-stroke/ and the pages are still up, and I expect them to stay that way, unless she decides to take them down.

I hope not. Because every coherent post that gets written by a brain injury survivor — even the incoherent ones — is one more voice that’s out there for people to read and to understand.

And it’s one more voice for “us” that one person uses that actually serves many. Not everyone has the interest or ability for writing. Not everyone has the ability or wish to discuss the details of their life with others. We bloggers are an interesting group — part voyeur, part exhibitionist… part narcissist, part humanist… part artist, part scientist…

I think there is a part of us that believes — as I always have, from the time I was very young — that “we” do not belong “to ourselves”. The experiences we have in the course of our days are in fact the “property” and domain of every human being on earth. We are none of us separate and apart from each other — the separation is something we invent out of expediency, because we have to be able to categorize and organize and find patterns in our lives. Without recognized patterns, without a larger context for events and experiences that we can see and understand, life becomes meaningless, chaotic, pointless. And we lose ourselves. Fast.

After brain injury, it’s easy to get lost. It’s almost a requirement. A central part of our health and well-being — mental and otherwise — has been disrupted. The roads from Point A to Point B have been torn up by a hurricane… a tsunami… and we don’t find out for some time, how much damage was really done. In fact, the damage can keep happening, as we try to do things a new way, and find that the alternate routes we took didn’t work. We’re doing the mental equivalent of trying to drive heavy equipment across unpaved roads, and we get bogged down.

And we can get hurt again — mentally, physically, emotionally, spiritually.

Brain injury is the “gift that keeps on giving”. And because so many people live in fear and anger and judgment and are moving WAAAAYY too fast, they don’t give us a chance to catch up. Everybody’s in such a damn’ hurry — and to where? To where, I ask you?

I get angry at this. The way our world is structured, is terrible for anyone with an injury or a shortcoming of any kind. We’ve latched onto the idea of “survival of the fittest”, not realizing that it’s cooperation, not competition, that ensures the survival of species. It’s community that makes many of us fit — rather than isolation and alienation and exploitation that weakens us all, even as it makes a select few feel more powerful than they truly are.

I don’t doubt for a minute that competition helps to sharpen the wits and abilities of individuals. But that’s not all there is to the story. At some point, you need to be able to see that cooperation is of greater value in certain circumstances. We’re not all one-trick ponies, capable only of a 2-dimensional behavioral repertoire.

But I digress. The point I’m trying to make is that in the great seething sea of brain injured individuals trying to get through to the next day, it helps to have some contact with others who “get” us. Who have had the same sorts of experiences as us. Who are struggling through as best they can — sometimes improving, sometimes sliding back — and who report back to the rest of us, what happened to them that day.

On Jan. 30, I withdrew from my MFA program. I ran into a friend on campus after, and told her the news. I could not read more than a paragraph.

 

“I’m taking a leave of absence,” I said.

 

She replied, “I wish I had a stroke as an excuse for my short-term memory issues!”

 

The old me would have told her that was rude. Or that it hurt my feelings. The new me stood stunned, unable to come up with a quip. And then I got into my car and cried. (from the Buzzfeed post)

There’s the anger we all share, of course.

And then there’s the other stuff — the interesting tidbits, even the hope.

For a month, every moment of the day was like the moment upon wakening before you figure out where you are, what time it is. I was not completely aware of what had happened to me. I was not completely aware of my deficits, in an ignorance-is-bliss sort of way. I was unable to fret about the past, or the uncertainty of the future. (from the Buzzfeed post)

Or just the curiosity.

But this post is getting long. I sat down, intending to write about how I had to “reset” myself yesterday and get out of my hyper-achiever mindset from the previous week. Then I saw the notice on WordPress about the stroke survival blog, and it got me thinking. I’ll write about my mental – and physical – reset sometime soon. Maybe later today. But for now, I’m going to go outside and get some exercise. Go for one of my long walks and just enjoy myself on this beautiful day. The rain has passed. I have gotten past the dreariness about people dying and having terrible things happen to them. I have not really looked at the news for over 24 hours, and I’m going to keep it that way.

I have a whole day to myself ahead of me, and that is good.

Time to make the most of it.

Onward.

Rebuilding my life, one experience at a time

It happens to the best of us

I’ve been thinking a lot about my life, lately, seeing some things fall away, seeing some things come into focus.

My spouse has been really slipping, lately — emotionally and mentally. They forget things and fly off the handle over things, alienating coworkers and friends alike. They’ve been doing this for a long time, but they’re starting to run out of friends. And their volatility is starting to affect them professionally, which is a “hit” personally, since their self-image is really tied up in their professional performance.

There are things they can do to help themself, but they don’t do those things. I believe it’s neurological, and I’m going to look into finding them a competent neuropsychologist to work with, to help them think better. It’s the least I can do.

On the front of my own life, I am seeing things come more into focus and “cohere” more than ever before. For a long, long time, I had a very fragmented life, where the things I did in my free time had nothing to do with what I did for a living. I didn’t see the connection. I basically worked to earn a paycheck that would let me live my “real” life. Now I see my 9-to-5 job as being an extension of who I “really” am in the rest of my life, and the things I experience and learn each day on the job, feed my free time and contribute to my developing philosophy of life.

The two are not entirely separate anymore — work and free time. They blend and contribute to each other in significant ways. In fact, one of the most encouraging developments of my life has been the quieting of the conflict I feel around going to work each day, instead of spending my day reading and studying. In a very real sense, I now experience my everyday life as an opportunity to study “in the wild”, and also to test out my observations and theories about how life works, and what it all means to me.

My day job and my everyday existence is no longer a hindrance that keeps me from living up to my true potential — it’s a valuable source of insight and proof of my concepts (or contradicting them), which is better than any amount of classroom learning or book study.

But I do still wish I had more time to read and write. I run out of steam at the end of the day, and all I’m really good for is making supper and then spending a few hours “veging” in front of the t.v. till I roll off to bed. I have about an hour in my mornings, if I’m lucky. And the weekends, too, I have some time. But I don’t have nearly as much as I’d like.

Fortunately, we’ll be moving to an office that’s closer to my home in about a month, so that may change.

Anyway, back to what I’ve been thinking about — losing the self and rebuilding again….

Some years back, I wrote a section of this site called “TBI SoS – Restoring a Sense of Self after Traumatic Brain Injuryread it here” and I should probably definitely revisit it. It’s been nearly four years since I first wrote it in early 2011, and some things may have changed. I know my sense of self has changed… my sense of purpose and potential…. and I’m quite sure I’ve learned a lot in the last 3-1/2 years.

Losing the sense of who you are, as so often happens with TBI, can be a viciously terrible thing to deal with. It’s alienating and stunting, and it feels like it kills a part of you. In a way, it does. A part of you can die, when the connections in your brain are frayed and twisted and stripped. Even the most “minor” head injury can wreak havoc, when your most customary neural pathways are diverted in subtle ways. Over time, the damage can continue… in ways that don’t seem all that apparent to the scientific community, but which are pretty clear to me. I’ve written about that before, and I should probably dig up those writings and put them into book form. I feel like they should be shared.

But I’m digressing again. The bottom line is, when TBI strikes — be it mild, moderate, or severe — your entire world can be rocked off its foundation. And in the ensuing days, weeks, months, years, continued impacts from the flow of life can dismantle your place in the world, your sense of who you are, your ability to function, your whole identity, in hidden and debilitating ways.

That’s where I was, in December, 2007, when I first started blogging. I was in bad shape, and I had no idea just how bad. All I knew was, I needed to set some things straight. And I needed help.

So I did what was necessary, and I also reached out and got the help I needed. And in the process, I have rebuilt my life and my understanding of who I am and where I fit.

Ironically, though, I still don’t feel “like myself”. I feel like someone who is living the life I want to live and making their way through the world in my skin. But it doesn’t feel 100% like me. Now and then, I’ll have a glimmer of familiarity. And sometimes I’ll have an extended time of feeling like myself again. Since I’ve been able to read and write for longer periods of time, again, I’ve felt more like myself than I have in a long, long time. And I feel a closer connection with my writing subjects and writing practice.  But somehow it doesn’t last.

And I wonder… what is that makes us “who we are”? What is it that defines our identity and our sense of self? How is that constructed, and how can we reconstruct it — in the face of loss and having to say good-bye to parts of ourselves?

This question is really key for me. It really moves me, and it really compels me. People write comments on this blog that talk about exactly what I struggle with — that sense of having no clue of what’s going on, or why it’s all going south… a sense of loss, a sense of being cut off from the possibilities of life, a sense of never being the same after the accident(s).

A lot of people feel that — but when your brain has been injured, it’s different. It’s just different.

And dealing with that, is probably one of the biggest challenges to brain injury recovery. Because it takes the kind of focus and intention that work best with an intact brain — or with the help of a competent professional (and there are too few of them around).

Oh, hell. I dunno. I’ve got to go to work. I’m thinking about these things a lot, lately, as things go really well at work for some strange reason. I’m doing extremely well under the conditions there, and I’m getting a lot of compliments and support from my once-skeptical coworkers. I’m making believers out of people at work, over things that I know to be true in my heart — that we can, and will, make it through in one piece.

At the same time, I have no idea what’s going on. Seriously. I just cannot follow things that people say to me, and I am flying by the seat of my pants, half the time. I am nowhere near as master-ful in my command of my subject matter, as I would like to be. I am literally winging it, but nobody seems to notice. I have a regular string of little “wins” on a daily basis, and I focus on them. Never mind the equally frequent “losses”. I concentrate on the “wins” and pretend the “losses” never happened. And it seems to work.

On the surface, I really can’t worry about what chaos swirls around, deep down in side. I can’t worry about the confusion in my head, and how I’m constantly trying to keep two steps ahead of things and narrowly averting disaster as I go. I just can’t worry about it.  I just keep dancing, keep moving, keep going with the flow. And it all works out.

But it still feels weird and unlike me. It doesn’t feel like “me” at all.

As long as it works for others and keeps a paycheck coming in, and as long as I’m genuinely able to perform and do the jobs I’m given, all is well.

Good gone bad in a hurry

Bummer… and things were going so well

So, last night I was fixing supper, and I messed something up. My spouse was in the kitchen with me, and they started saying things that sounded critical to me, like they can do better than me. I got really agitated and frustrated, and I had a bit of a blow-up at them. I was really angry over them finding fault with what I was doing and comparing their own performance to mine. It was a double put-down. 1) I screwed up, 2) they can do so much better than me.

It really pissed me off, and I got so angry, and then they went into their usual behavioral “repertoire” of acting like I was a bad person for getting angry and yelling — like I was threatening them and being abusive. Oh Lord, oh Lord, oh Lord… I was upset and trying to express myself, and all they could do was make me look like I was the one at fault, and my anger was a threat to them.

I got pretty angry — not over the top, throwing-things angry, but so frustrated and agitated that I almost couldn’t see. And then POP, something in my head felt like it snapped, and I had this sensation of my brain locking up and slowing down to a crawl. It was like someone cracked open a smelling salts capsule — but it had the exact opposite effect. I instantly felt dull and numb, with my face numb and tingling, and my hands tingling. I could physically feel it in my head. I turned into an instant idiot — it was hard for me to understand what was being said, and I couldn’t put words together. My head felt like it had filled up with cotton, and I was suddenly so dull.

I didn’t think it was a stroke, because I haven’t been impaired on one side of my body or the other — and I stuck out my tongue to see if it bent from one side or the other, and it didn’t.

Then again, according to the National Stroke Association, here are the signs of stroke:

Stroke symptoms include:
  • SUDDEN numbness or weakness of face, arm or leg – especially on one side of the body.
  • SUDDEN confusion, trouble speaking or understanding.
  • SUDDEN trouble seeing in one or both eyes.
  • SUDDEN trouble walking, dizziness, loss of balance or coordination.
  • SUDDEN severe headache with no known cause.

So, maybe it was one. I don’t know. One side of my body wasn’t weaker than the other, which is what I usually associate with stroke. I have a meeting with my neuropsych this afternoon, so I’ll check with them. I’m hesitant, because I don’t want trouble from all this. Plus, it has happened to me before — about 3 weeks ago after a meeting when I got really upset with the behavior of some of the folks in the meeting. It was very similar to that time — I felt something “pop” in my head, and I turned into an instant idiot — couldn’t put words together, had trouble speaking, felt slow, and had a low-grade headache.

This time I didn’t get nearly as angry. But the feeling was the same, and now I’m dense and dull and I’m having trouble putting words together. Three weeks ago, it passed. And it didn’t seem like a big enough deal to investigate. It was not much worse than other “episodes” I’ve had in the past, and when I tried to investigate them before, nobody seemed to think they were that big of a deal, and I felt like an idiot for even bringing them up.

I know I’m supposed to go to the ER as soon as I suspect I’m having a stroke, but how would that work, exactly? I can’t miss work, because then I don’t get paid. And my mortgage won’t wait. I’m the only one who’s supporting my household, and if I’m out of work, we’re all pretty much screwed.

I started to get a headache after a while, last night, and I took some Advil, but it didn’t really help. I still have that headache in the front and top of my head, and also towards the back where I hit my head on Saturday.

Seizure? Stroke? Whatever. I’m sounding a little nonchalant about this, I guess, but my feeling is that this kind of stuff has happened with me so often over the years, it’s just one more thing. And even if I did have a stroke, I know how to fix my brain, and manage my issues, so I’m not all that worried. Hell, even if I do become really hampered by my brain, I know how to live my life in a way that brings me happiness and joy. I know how to bounce back and keep going, so I’ll just keep doing what I’ve been doing.

I am reminded of a number of things I need to do is stay vigilant about:

  1. Remember that my spouse is actually mentally ill. Their panic/anxiety disorder has wreaked havoc, and it is a genuine mental illness. They seem to believe that their anxiety is keeping them “safe” from whatever dangers may be out there, and the “help” they are getting from friends and their therapist seems to only reinforce their fears and their devotion to their “precautions”. They are so absolutely imprisoned by their fear about every conceivable thing on the planet, that anyone around them has to abide by their brittle rules or bear the brunt of their wrath. They feel safe when everything is going their way, but it’s absolutely smothering and restrictive for anyone who does not share their view.
  2. Underlying all this anxiety is a handful of neurological issues which are screwing with their thought process. It’s not something I can take personally, when they go off on me. I love and adore my spouse and would love to spend more time with them. Still, it’s really hard to be around them. The other thing that makes it all hard, is that I’m just about the only one who can spend any extended time around them — they’ve chased off just about everyone else with their anxious control. And they don’t understand why that is. Explaining won’t make any difference, because to them, their fears all make perfect sense — and it’s neurological. So there’s only so much explaining I can do.
  3. I need to take care of myself and get what I need for myself to stay strong. I was tired, last night, and I pushed myself too hard. I need to back off and take some time to myself, especially when I spend extended periods with my spouse. My spouse and I had gone for a drive earlier, yesterday before my outburst, and they are so anxiety-ridden about just about everything, that it’s very stressful to be around them. It’s like a never-ending drama — over huge dangers and threats which seem like they’re nothing to me. When I do the driving, they constantly boss me and yell at me about how I drive, where I should turn, what I should do. It’s a total friggin’ drain.
  4. I need to keep to a regularly active schedule. I was out of sorts already, last night before my outburst, because I was off my regular schedule. I also did not expend enough energy over the weekend and wear myself out physically. I need that. I need to keep active and tire myself out, so I don’t think too damn’ much.
  5. My spouses’ way of living is not healthy — for them or for anyone. They spend a lot of time sitting around thinking about shit that makes them crazy, and they end up pulling me into their undertow. When I am around them, they use me as a “sounding board” which just sucks me into their downward spiral. This is not good. I need to keep myself up and elevated and healthy and take regular breaks when I spend a lot of time around them.

Truthfully, I actually need to protect myself from the one person I love with all my heart. It’s kind of tough, but there it is. If I can think of it as protecting myself from the demons that are eating them alive, that’s a better way to look at it. But it’s still very painful to watch them on that downward spiral, and be helpless to do anything about it.

Having extra days off can be good, but they can be be bad, too.

I just have to keep all this in mind and take the best care of myself that I can.

My head hurts. I’m foggy and dull… and a little bit afraid of bringing up the episode last night with my neuropsych. I’m afraid of what might happen if they tell me to go to the hospital and get checked out. But at the same time, if I don’t get the help I need, then what?

On the bright side, I’ve got almost four months’ worth of pay stashed in the bank, so if I do have to take some time off, I can. My mortgage is taken care of for the next month, and I’ve got enough to at least keep going, if I need to take some time.

Ideally, it won’t come to that. But when I think it through, the fact is, I can afford to take a week (even a month) off work, if I have to. I could even go to part-time for the short term, and we’d be okay for at least three or four months.

Anyway, speaking of work, I’ve got to get going. My fingers aren’t typing very well, and I’m fortunate to work with folks who have never seen me at my peak, so they have no idea just how impaired I am, right now. I’ll just get through the day, talk to my neuropsych, and try to keep as clear as possible, so I can make the right decisions and do the right things.

Main thing is to keep chilled out and cool. I’m really bummed out that I couldn’t even make it through a weekend with my spouse without yelling and getting upset. We were doing so well… that is, I was doing so well. They were doing really shitty. But all I can control is myself. So, I have to take care of what I can control — myself — as much as humanly possible.

Screw it. Onward.

Who am I today?

Summary / Bottom Line

I don’t feel like myself, these days. I haven’t felt “like myself” in a long time. And all the hopes and dreams I once had as a kid, seem so far from me. But maybe, just maybe, I am truly living my hopes and dreams… I just don’t feel like I am. And that changed sense of myself is keeping me from realizing how much my life really does resemble my onetime hopes and dreams. Restoring a sense of self can be a huge challenge with traumatic brain injury, and adjusting to how things truly are, versus how they appear to be, or feel, is one of my biggest challenges.


I’ve been thinking a lot, lately, about my identity… who I was when I was a kid, who I am now, and who I’ve been along the way. I recently had a birthday, and while I don’t feel like I’m having a mid-life crisis, I still have been thinking a whole lot about whether I am where I expected / hoped / planned to be, when I was younger.

I know that “life happens” and we can end up very far from where we wanted to be when we were younger. And to be honest, I’m not even sure if I had specific plans about the trajectory of my life, when I was younger.

I do know that what I wanted more than anything, was to become a scientific researcher. I wanted to go to school to get a bunch of degrees, and then focus on research. I’m not sure what kind of researcher I wanted to become — I just wanted to study, collect information, synthesize it, and publish it.

I also wanted to be a writer. Maybe more than being a researcher. Being a writer is what I always wanted to BE. Research is what I wanted to DO. In a way, being a writer is like being a researcher – it’s not the same type of science, but there’s a sort of science to it — observing, drawing conclusions, testing your hypotheses, etc.

Over the course of my life… well, life happened. I got hurt. A bunch of times. I fell and hit my head a bunch of times. I got in car accidents a bunch of times. I was attacked. I did stupid things. And I got hurt. I also had a lot of chronic pain that knocked me out of the running when I was in my early 20s. And I got in trouble with the law and some rough characters, and I had to go on the lam when I was in my late teens, which limited my future prospects.

Now, looking back, I see how so-so-so many opportunities have been out of reach for me, because of everything that happened back then. I have done my best to patch things up over the course of my life, and relatively speaking, I’ve done extremely well for myself.

But am I really where I want to be today?

I’m not sure. This life I’m leading doesn’t look and feel like I hoped it would. It feels strange and foreign to me. Hell, I feel strange and foreign to me. I feel like a stranger to myself, half the time. I don’t have that feeling of being “comfortable in my skin” that people talk about.

Now, I used to have that feeling. I used to have a clear sense of who I was and what I stood for. And I didn’t let anyone hold me back. Even when I was getting in trouble with the law and then went underground, living overseas till things quieted down here, I had a clear sense of who I was, and what I stood for. I had to change my life for a while, and I couldn’t do a lot of the things I had once enjoyed doing — like going anywhere I wanted, whenever I wanted. But it didn’t feel like I’d lost a part of myself. I’d screwed up for sure, but I was determined to fix things.

When I was in all that crippling pain, 25 years ago, I had to let go of a lot of activities that had once meant a lot to me. I had to stop exercising and spending time outside in the sun. The diagnosis that the doctors came up with was probably wrong (I never had tests that confirmed or denied it 100% — they didn’t have good tests, back then). But I had to take steps in any case. As it turned out, the things that I was told not to do — exercise a lot, move a lot, test myself physically — were exactly the kinds of things that I needed to do to alleviate my pain. Movement and staying active was NOT going to hurt me. Being sedentary was.

In those years when I was dealing with the pain, I lost of lot of things that meant a lot to me. I couldn’t eat and drink the same things anymore, and I couldn’t do the things I wanted to do. But I didn’t have a sense of having lost myself. I was still who I was, and I was clear about that.

Now things feel so strange and foreign to me. It’s hard for me to describe. Even though I know I’m doing better, and I have numbers and feedback from friends and family that indicate I’m improving, I still don’t feel like myself. It’s hard to describe — just that someone else seems to have taken up residence in my life.

I know my personality has changed a good deal, since my fall in 2004. And it kind of freaks me out, because that wasn’t the first mild TBI I’d ever had. I’ve had a bunch — probably about 9. I’ve been assaulted once, had at least 4-5 falls, got hurt a couple of times playing soccer, got majorly dinged while playing football, I’ve had a couple of car accidents, and so forth. But not until I fell in 2004, did it totally screw up my life.

Not until the past years, have I felt like a stranger to myself.

It’s kind of getting me down, too. At least, it has been. I try not to think about it, but it’s still always there… Who am I today? What am I going to do today that doesn’t seem “like me”? What am I going to feel and think and say and do that doesn’t seem consistent with the person I know myself to be?

That feeling of observing yourself going through life… it’s weird. Disorienting. I resolve over and over again, to hang in there and just keep plugging, until I see some glimmer of who I am. And sometimes it works. I’ve been feeling more like “myself” lately, which is nice. But at the same time, I don’t quite trust it. Like in Flowers For Algernon, when the main character stops taking the medicine that made him think and act like a normal person… and he drifts back into his old state. Whenever things are going well for me, I feel like I’m looking over my shoulder for signs that I’m slipping back into not recognizing myself.

I would like to stop this. It’s not fun, and it’s not productive. It serves no one, and being on high alert over it just kills my quality of life.

So, over the weekend, when I had time to think about it, I realized that maybe it would be better if I just acclimated to this feeling and let it be. It could be that I actually am getting back to my old self — I just don’t have the sense that I am. It could be that I’m even better than my old self. There’s a good chance of that, because my old self was majorly concussed and had all sorts of issues that I didn’t even realize. It could be that I’m in better shape than ever before… but I don’t have the sense of it being so, and therefore I don’t trust it.

I don’t feel like I’m myself, most of the time. Maybe all of the time. But maybe I actually am. Maybe the missing piece is NOT my personality and my identity, but the sense of my personality and identity. Just because the sense of being who I am isn’t there, doesn’t mean I can’t BE there myself.

Rather than getting all caught up in recreating that sense of myself, maybe I need to just get on with living, regardless of the sense of myself. Maybe I just need to trust it… not place such high demands on what qualifies me as me, or not-me.

And maybe — just maybe — the life I have now is exactly what I was hoping /expecting / planning / dreaming I’d have, back when I was a kid. Looking around at my study and thinking about how I live my life, I realize that I am doing exactly what I always wanted to do, when I was younger — reading and researching and writing and publishing. I write and publish this blog. I read and research TBI-related materials (especially concussion and mild TBI) and I spend a lot of time thinking about them.

I also read and research other subjects and write about them, though I haven’t published much of that … yet. I am getting to a place where I soon will, and then I will have that to my credit, as well. This is all done independently, according to my own standards. I’m not doing it professionally, but I have managed to help some people, here and there along the way. That much is clear from the comments on my blog.

So, even though it may feel like I’m one person, the objective facts reveal something quite different. And for me, it seems the challenge is to not let feelings of weirdness and alienation and failure stop me from just getting on with my life.

At some point, I just need to trust. I’m working on it.

Onward.
 

I didn’t fail. I just got tired.

So much depends on your outlook

I had a revelation this morning, as I was waking up. In the space of a few seconds, it turned an imagined failure into a chance for long-term success.

It was the realization that when I started to lose my temper with my spouse last night, it wasn’t a sign that I was failing at my attempts to be more level-headed and calm, no matter what the situation. It was a clear sign that I was tired, and that my brain needed sleep.

I have been working on being more level-headed — no matter what the situation. This is a lifelong pursuit, actually. I saw the need for it, when I was a teenager and a young adult… as an adult in the working world… and it continues to be important to me. It’s not that I want everything to be perfect for me all the time and give me no trouble. What I want, is to be able to handle my circumstances, be okay with them (within reason), and make the best of any situation’s opportunities, no matter now “bad” it may look at the time.

I have had some good success with this approach over the years. After all, I have seen the ill-effects NOT having a level head in challenging circumstances, and the results are rarely pretty. I have had plenty of opportunity to witness this in the people around me — in my family, especially, when my parents could not hold it together with one of my “problematic” (that is — drug-addicted, alcoholic, sleeping-with-anything-that-moved, drug-dealing) siblings. It was bad enough that my sibling had all those problems (which were signs of something far deeper going on with them). But my parents could not maintain their composure or clarity of thought when it came to my sibling, so that made a bad situation even worse.

I’m not judging my parents — they were not equipped to handle it, and we lived in an area where any problem with kids was a reflection on the parents, so they went from being respected members of society to being “those people” who everybody handled very gingerly.

Anyway, I’ve seen many examples in my own life, where keeping a level head and a calm demeanor helped me through tough times. I actually credit my many TBIs (I’ve had 9+) with helping me with this, because they slowed down my processing speed. When your processing speed is slowed down, it makes it pretty difficult to get on the same wavelength with everybody else… and in case you haven’t noticed, being on the same wavelength as everybody else leaves a lot to be desired.

Everybody gets so worked up over things. But when you’re not thinking as quickly as everyone else, you can’t jump to the same conclusions and get to those snap judgments that can send you careening into HOLY SH*T WHAT THE F*CK land. Everybody else is freaking out — oftentimes about something that isn’t worth freaking out about — and you’re still trying to figure out what just happened…

So, if you think about it, slower processing speed isn’t always a bad thing. And equanimity… peace of mind… level-headedness in the face of a crisis is a definite advantage. Especially when everybody else’s “normal-fast” thinking is vectoring off in a really unproductive direction.

Anyway, that’s one half of the story. The other half of it is less cheery — that’s the aspect of my thinking that is WAY more reactive than others’. It’s the instant-freak-out part of my experience that has made me nuts for years. At an instant’s notice, I’ll suddenly FREAK OUT over something. It can be a dropped spoon, or a missed channel that I’m trying to change with the clicker, or something my spouse says or does that rubs me the wrong way.

When things go haywire in my head, they go really haywire. There’s no middle ground. Everything goes nuts. I know I’m being unreasonable, I know I’m being crazy, I know there is no logical reason for me to be freaking out, but it’s happening anyway. And it’s never good for anyone. I’ve lost more relationships than I can say, because of this. That includes a really good job I lost in 2005 after my TBI in 2004.

People are afraid of me, when I start to get agitated and aggressive — which may have to do with me, or may have to do with them. I don’t want to give anyone any reason to be afraid of me. It’s counter-productive. And it hurts everyone involved.

So, there’s all the more reason to keep tabs on myself and foster a calm demeanor, a cool head, and a self-possessed state of mind. And with that goal in mind, I have pursued a number of different practices and philosophies that might help me with that. I have worked on practices that emphasize acceptance, calmness, not reacting to things around me, and philosophies that teach about how transitory life is, and how important it is for us to understand what we can and cannot change, and not make ourselves nuts trying to alter things that can’t be changed.

Like the serenity prayer:

God, grant me the Serenity to accept the things I cannot change, Courage to change the things I can, and Wisdom to know the difference.

This has been a very powerful concept in my life, and I have it displayed in my kitchen where I will see it each morning when I get up and make my coffee.

Along the way, I have had many surges in interest in deepening this practice — in really getting to a place where I can make peace with the things I cannot change, and make the most of the opportunities that are hidden there. I’m a big believer that some of our worst hurdles and challenges offer us the greatest rewards — and when we resist those challenges, we miss out on the chance to become bigger and better than ever before.

Some things I can accept and work with — political changes, cultural changes, relocations from one area to the next, and small-scale changes at work. Other changes I have a harder time with — job changes, especially. The ones that make me the craziest are the ones I feel like I cannot understand or control — or that go off in a direction that is completely different from the direction I see myself headed.

Other things I cannot seem to accept, are the foolishness of others — the stinkin’ thinkin’ that my spouse indulges in, their constant anxiety, their devotion to drama, their bad habit of telling everyone exactly what they want to hear instead of the constructive truth. I have trouble with the attitudes of people at work, who can be cliquish and juvenile. I have trouble with the judgment of Management at work, when their decisions seem counter-productive and get in the way of us doing our work. My siblings also depress the sh*t out of me, with their choices and their prejudices and their holier-than-thou attitude. My parents are a little easier to deal with, because they are many hours away, and I don’t see them that often.

It’s the people who are closest to me, who I have the greatest investment in, that get me with their unhealthy habits of thought and action, their outlooks, their attitudes, and their behavior that seems to serve no useful purpose, other than to make them feel good about themselves — at the expense of everyone else.

The thing is, their behaviors and beliefs and actions have almost nothing to do with me. Even my spouse’s bad habits have more to do with them, than with me — no matter how much they may blame me for their anxiety. I am making myself unhappy over things that are far beyond my control, and it’s not helping me at all.

So, there is all the more incentive for me to calm myself down, not react to what they are doing, and step back and look at them and everything from a distance.

I have found some philosophies and outlooks that can help me do that, and I have pursued them eagerly, on and off, over the years. The thing is, I get to a certain point, then everything falls apart. My equanimity dissolves. I melt down, inside my head and heart. My temper explodes. And I end up feeling worse off than when I started. I feel like I’m back to Square 1, without having made any progress at all.

But in fact, I have made progress. My meltdowns and explosions do not mean that I have utterly failed at learning a new way of thinking and being and relating to others. They do mean that my brain has been working hard, so it is tired. And I need to rest it.

Because changing yourself and your brain and your patterns of thought and action and attitude is hard work. It doesn’t happen overnight. And the fact that I am getting frayed and losing it, actually means that I am making progress — I just need to take a break, rest up, learn what I can about what sets me off, and resume learning again, once I am rested.

This realization is just what I’ve been needing — for a long, long time. Getting frayed at 10 p.m. over someone being a pain in my ass is NOT a sign that I’m failing. It’s a sign that I’ve been working hard all day at changing my mind and my brain, and that it’s time to rest. It’s not a condemnation — it’s a diagnostic tool. And far from being an indication of my inferiority, it’s evidence that I’m actually making progress.

The simple fact is, I’m a brain-injured human being. If you think about it, there are a lot of people who are injured in one way or another, and we are all working our way through the maze called life, trying to find a better way to live. And because of my injuries, because of my history of experiences, my individual makeup, and all the different things that have made me what I am today, I have certain limitations I need to be mindful of and accommodate, so I can work around them and not let them get to me.

Fatigue and the irritability that comes from being tired are a couple of those limitations. So is:

  • a sharp tongue — over little things
  • a hot temper — at an instant’s notice
  • slower processing speed than one would expect
  • the almost constant pain that I’ve become resigned to living with, the rest of my born days
  • perpetual, never-ending tinnitus
  • light-sensitivity
  • noise-sensitivity

And so on.

It’s not that my life is awful. It’s pretty sweet, to tell the truth. I just need to be aware of these issues, not forget them — or when I do forget them, find a way to remember that the things I’m doing and saying are about my brain injury, NOT about my character.

So, there is hope. There always is, so long as I don’t give up.

And speaking of not giving up, I’m going to get ready for work and get into my day, knowing that I didn’t fail last night, when I got cross with my spouse. I was just tired, and no animals were hurt in the filming of that movie.

Onward.

nueropyshc test doesn’t detect brain injuries and accused of malingering

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Not all doctors are interested in helping YOU

Someone found my blog the other day with this search term.

Everyone who is affected by brain injury should know that some neuropsychs are hired by insurance companies to detect fraud, and their tests are geared towards proving you’re malingering, rather than helping you get past your issues.

On the other hand, some neuropsychs are just not very good. Simply because they have “neuro” in their name and/or have an advanced degree does not mean they know their ass from their elbow.

And then again, some of us with brain injuries are so adept at disguising our issues — for fear of being mistreated, from past experiences of being mistreated, or from just knowing how to get along in the world to everyone else’s satisfaction — that some tests don’t pick up our issues.

And finally, sometimes the issues we experience from brain injury are very subjective — not feeling like ourselves, not having the same types and kinds of abilities as before, feeling like strangers in a strange land (though that’s not unique to brain injury alone), and struggling to do things we used to do even though it looks to others like we’re doing them just fine. We know there is something “up” with us, and we know we have deficits we need to overcome.

But heaven help us if we can actually manage to communicate this to others, or demonstrate it to others.

IT IS HARD.

And it oftentimes sucks.

It’s bad enough that brain injury kicks the stuffing out of you… but then the professionals who are actually sworn to help you, turn their backs in you?

That doesn’t make things any easier.

I wish to God I could fix this. But I can only fix what’s right in front of me.

So… onward.