Who am I again…? Oh, yeah… that’s who

I haven’t been myself, for the past two days. I was on a business trip, this past week, and my flight got in late on Thursday night/Friday morning. Then I needed to start work early on Friday morning. I was hoping to sleep in on Saturday, but this morning I had another conference call at 8 a.m., so that was … fun.

Kind of.

Actually, it was a good experience to have. And I held up my end of the bargain on the conference call, validating some results of a software release that happened earlier that morning.

It turned out well, which is good. Because then I had to run out and do my errands. Take the trash to the dump. Gas up the car. Go out and buy some computer stuff to keep my equipment running smoothly. That went well, too. Then it was back home to do more errands and help my spouse get ready for an event they were organizing. Everything seemed to be going pretty well, and they got on the road at a decent hour.

I got a phone call about 90 minutes later, that I had forgotten to load one of their main pieces of equipment in the van. Both of us had spaced out and completely forgotten to load it. WTF?

I never do that. At least, I don’t do it much, lately. I used to space out a lot and lose track of stuff. Either that, or I’d be so keyed-up that I’d be on top of everything and wouldn’t forget anything. Hyper-organized ‘n’ all that. But lo and behold, tonight, I did the unthinkable — seriously, it was that out-of-character for me. Then again, I was going on 4.5 hours of sleep the night before, and I’d had a full day already, on a Saturday, no less.

So, I threw the equipment in the back of my car and drove like a bat out of hell to the event. Got there before it started, which was nothing short of miraculous. I hit almost all the lights exactly right — either they stayed green, or I snuck through while they were turning orange to red.

Mission accomplished. Embarrassing, but I got the equipment where it was supposed to be. And that’s really what matters. I spaced out, but I made it right.

Times like this, I just have to shake my head. I am not “myself”, lately. Not even remotely close. I’m over-tired, stressed from work, taxed and alternating between overwrought and indifferent. It’s very strange to be me, these days. I’m pretty swamped at work and at home, so I don’t always recognize myself and my reactions.

It’s worse when I’m tired.

A lot worse.

So, the best I can do, sometimes, is just hang in there, keep plugging away till I see a signpost along the way that makes sense to me… and follow that.

Just keep going.

Speaking of going, it’s time for me to go to bed. I’m behind about 5 hours of sleep, including the hour of sleep I lost last night. Always an adventure.

Onward.

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After TBI / concussion – How does it feel to lose your Sense-Of-Self?

If you're used to spinning fast, and you get off balance, things can get messy
If you’re used to spinning fast, and you get off balance, things can get messy

One of the things that puzzles many a healthcare practitioner and clinician about TBI / concussion, is the incidence of long-standing issues after the injury “should” be healed. For the vast majority of people who get clunked in the head and feel woozy (and/or out-of-it and/or uncoordinated and/or extremely moody) afterwards, healing comes within a few weeks.

It typically takes the brain 7-10 days to get the gunk out and restore its normal energy (see The New Neurometabolic Cascade of Concussion for in-depth discussion), so you can pretty much expect the first couple of weeks to feel strange. But after that, 80-85% of concussed folks heal up and get on with their lives just fine.

But for a number of other people (like me), symptoms persist. And that’s a mystery. At least, for most folks.

To me, it’s really not much of a mystery, and I completely understand why people like me struggle and suffer from post-TBI symptoms. It has a lot to do with the stress that results after a brain injury (especially a “mild” one) that disrupts some fundamental functioning in your system. Having your brain work even just a little differently than before — especially if you were a high-performing individual before your injury — can be so profoundly disruptive to your daily functioning, that it freaks you out.

It’s not an obvious freak-out. It happens silently, behind the scenes, in the quiet of your own mind. It’s more of a feeling, really, than a tangible thing that others can see and hear and detect. It’s a mute welling up of trepidation… reservation… uncertainty… that happens over and over and over again, day in and day out. It throws you off. It disrupts your rhythm. And if you are accustomed to working at a brisk pace, doing demanding things all day, every day, that kind of disruption can be brutal.

It’s like being a piece of pottery on a throwing wheel. You’re accustomed to spinning fast, but you’re suddenly off-balance. And the results can get messy. If you’ve ever thrown pottery on a wheel, you know what I mean. The faster the wheel goes, the more it will be affected by being just a little bit off-balance.

Nothing throws you off like a “mild” TBI. A concussion is “just a bump on the head”, but it affects so many parts of our systems, that you’ll definitely feel it. And if you’re used to being always on-the-go, always active, always involved, always performing at a very high rate, even the slightest disruption to your functionality can be a real problem. It’s like a grain of sand that gets under the base of a lamp. When you pull the lamp across a wooden table, it can score the surface pretty badly. And if you do it often enough, it will do some serious damage to that table.

“Mild” TBI / concussion gouged-woodexperiences are like little grains of sand in our systems. They shouldn’t be such a big deal. They really shouldn’t matter. They’re just little things — why would we get so bent out of shape about them?

But for those of us who have been top performers, even the slightest disruption can be unsettling. It’s stressful. And if you get unsettled often enough, the stress can build up, and it never really gets dealt with — because, after all, there’s no apparent reason we should be stressed from a “mild” injury, so why should we deal with it?

It’s cumulative. And it can become devastating. Your brain doesn’t quite understand what’s happening. Your system is getting increasingly more stressed, and yet it doesn’t know why that is. The biochemical sludge from ongoing stress keeps building up and accruing… and as a result, your entire system gets stressed and freaked out.

For no apparent reason.

And that’s crazy-making.

First, you can feel like you’re losing your mind, because something doesn’t seem right. Second, your stressed system is actually preventing the brain from healing up by re-learning and re-adjusting to the different ways it needs to do things. Third, you get no help at all, because very few people actually understand what the heck is really going on with you — and because your brain has been impacted, it’s extremely difficult to explain to others just what’s going on with you.

So, you’re sorta kinda screwed.

And you lose yourself. You lose your Sense-Of-Self. You don’t really recognize yourself anymore. You don’t feel familiar to yourself. Your thoughts feel like they’re someone else’s. Your life feels like it’s someone else’s. You don’t understand why you’re doing and saying the things you are — and if nobody has explained the mechanics of TBI to you, then you really don’t know why anything is happening the way it is.

The usual ways that you always functioned before are different. They are no longer familiar. They are no longer comfortable. The things that used to come second-nature … don’t. You have to think about so many things that used to come easily to you, that used to be reflexes. The patterns that you used to live by… they’ve evaporated into thin air. And you’re left on your own. To figure it out. On your own.

sludgeAnd so you’re walking around in a constant state of agitation and stress, because something’s not right, and you’re not getting the help or understanding you need. Your brain is laboring to make sense of things, but your biochemistry is conspiring against it, marinating it in a continuous bath of stress hormones and frustration. Your brain needs to learn and heal and retrain itself, but the stress is literally preventing that from happening. And you’re developing PTSD, for no apparent reason.

It was “just a bump on the head” so what’s the problem?

Eventually, it can get to the point where you don’t even recognize yourself, anymore. Nothing feels familiar, nothing feels sane, and you’re just faking your way through your days. Even the things you still do well, might not seem like you’re doing them at all. And the things that others believe you’re doing better than anyone else… well, that can feel like an act.

And all because of a mild injury that most people can get over in no time.

Personally, I feel that folks who are on the high-performance end of the spectrum are more likely to experience persistent problems after a concussion or mild TBI. Folks who aren’t highly tuned and highly sensitive aren’t necessarily going to notice changes to their subtle functions. But sensitized and high-performing people are. And unfortunately, not every doctor or clinician you have access to is one of the high performers who understands.

Some days it feels like this
Some days it feels like this

Worst of all, is when you deal with people who aren’t on the high-performance end of the spectrum, who tell you you’re “functional enough” and should just be happy to have what you’ve got. I’m sure they don’t realize it, but that’s about the coldest, most cruel thing you can say to someone who’s struggling with a loss of functionality after brain injury. I’ve been told that — directly and indirectly — countless times… either by clinician friends who tried to reassure me that I was “so smart”, as well as providers who told me that I should be happy that I’m not worse off, because so many people are.

Best case, they downplay your issues and try to build you up by making you comfortable with mediocrity.

Worst case, they accuse you of being greedy and dismiss you as either grandiose or narcissistic.

It’s lonely out there, when you’re used to performing in the high end of the spectrum, then get knocked down a bunch of levels by a TBI. And it’s so alienating and debilitating to never get the help you need to get back to a place where you simply feel comfortable with yourself again. It’s hard enough on the inside, but the conflicting messages from the outside make things even harder to sort out.

It’s taken me over 10 years of constant, constant, focused work, to get back to a place where I feel comfortable in my own skin. So many years were spent struggling with demons I couldn’t name, and certainly didn’t understand. I wish more clinicians and practitioners could understand the vital connection between changes to personal performance / experience  and ongoing difficulties from mild TBI / concussion.  It might help them A) better grasp the very real challenges we face, and B) help us get to a place where we recognize ourselves again.

Here’s hoping this can change. I’ll do what I can.

Onward…


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And now I can talk about regaining my Sense-Of-Self again…

Reaching out to others is what brings us back to ourselves
Reaching out to others is what brings us back to ourselves

A funny thing happened, when I was working on my TBI S.O.S. writing… Here, I was feeling really strong and certain, starting to feel like my old self again…

And then, all of a sudden, I wasn’t. I went through a period where I really lost touch with my identity all over again, and each day I woke up wondering, “Who the hell am I, and how did I get here?”

Any talk about regaining a sense-of-self after TBI seemed, well, ironic. And unfitting. It didn’t exactly ooze integrity, from my point of view.

I guess I still needed to learn a thing or two.

So, I had to step away. And do some more work in myself. And get myself back in shape… back to a place where I actually did feel like myself again… and feeling like I could actually talk about restoring a sense of myself in terms that were true and honest and genuine (not contrived and forced).

I thought I was in a good space, back in February. And I was ready to start writing some more. But then life happened, and I got caught up in the neuro stuff, so the Sense-Of-Self stuff took the back seat again. My sleeping habits got bad. I got too tired. I got too bent out of shape over things. I really wanted to write… but there were so many other concerns coming up, and I only have so much bandwidth.

It’s been a little while, now, and I’m actually feeling much more stable. I’ve worked a lot on my sleeping patterns, lately, and I’ve also gotten settled in at my job (while keeping an eye open for any new layoffs — supposedly there are some coming next week? who  knows?). My schedule is steady. I have my tools in place. And I feel like I recognize myself when I get up in the morning, and when I look at my reflection at night as I brush my teeth before bed.

TBI is a strange little m*therf*cker of a chronic condition. It takes so much from us, it steals so much, it separates us from everything we love and hold dear… and it offers us absolutely no clue as to how to get back to where we want to be.  Sometimes we can never get back to where we want to be, but we can find some peace in knowing we’re back to where others need us to be.

TBI can make us incredibly self-centered. We have to be, in a way, because we have to recondition ourselves to do so much, to re-adjust to changes in so many things we used to take for granted. How ironic that the one “cure” I’ve found for that sense of rootless confusion, has been to look away from my fanatical self-centeredness and put the focus on others and what they need. Ironically, when I put my selfish concerns aside, I actually find a sense of myself that is whole and wholesome — and helpful for others.

And that focus on others absolutely has to be about helping people understand the impact that a fractured Sense-Of-Self has on TBI survivors. It is absolutely positively central to the issues we have — and I firmly believe that that S-O-S condition is a key factor in PCS and other lingering after-effects of TBI. I believe it’s an important driver behind the stress that takes over so often after a brain injury, and I’m convinced that it — rather than any self-destructive tendency or even impaired risk assessment — is behind the behaviors that result in multiple concussions / mild TBIs that accumulate over the years.

I’ve watched my own fractured Sense-Of-Self play a pivotal role in my own poor behaviors and “flawed” decision-making. Some believed it was because I felt badly about myself or I didn’t respect myself, or I wanted to harm myself in some way.

On the contrary — I actually wanted to help myself, and risky behavior was the only way I could figure out how to get the pump of biochemical goodness that “brought me back to myself”. So long as we continue to ascribe “self-destructive” risk-taking behaviors to psychological wounds, rather than biochemical impulses, treatment for mild TBI and concussion sufferers will remain incomplete — and a self-fulfilling prophecy of poor long-term outcomes.

The loss of a Sense-Of-Self lies at the heart of so much suffering in TBI — both for those who have been injured, as well as their loved-ones and social circles.

And until we “get” that and start treating it directly, it will continue to be a problem.

That, dear reader(s), is what I’d like to remedy.

And so I shall do my utmost.

Onward.

Getting it all connected

enrichment-changes-brain-structure
Comparing connections between an enriched brain and an impoverished brain

I’ve been doing a lot of reading, lately. Now that I can read again — and remember what I’ve read beyond the space of a few pages — I’m just enjoying it so much. It’s awesome.

Anyway, one of the things that I keep coming across is how our brains are quite “plastic” — subject to change, based on need — and how different parts can be recruited to do the job for other parts that have been injured or damaged. Once upon a time, in a land not so far away, people believed that certain areas (and only those areas) took care of specific tasks. There was a “speech” area… “emotional arousal” area(s)… “motor control” area(s). And if they got injured, you were sh*t outa luck.

Now, of course, we know better. And we’ve found out that areas that aren’t supposed to have anything to do with speech or emotion or motor control, are actually pitching in to help out. In some cases, if a part of the brain is completely fried, other networks can jump in to take over (like the massive amount of damage done to the brain of a university professor, discussed in The Brain That Changes Itself — he re-learned how to walk and function, despite losing “all” his ability to coordinate movement, and he actually passed away from a heart attack while hiking in Peru).

So, even if there is substantial damage to a part of the brain, it still has the capacity to right itself and restore itself to functionality — some of which is about as good as before, and some of which is even better than before.

One of the things that bothers me about all the concussion discussion, these days, is that it focuses so intently on CTE and the potentially fatal results of mild traumatic brain injury. There’s a real atmosphere of critical concern — and rightly so. People suffer terribly and die miserable deaths, with their families suffering right along with them, thanks to the denial around repeat head trauma, particularly in the world of professional sports.

 

The thing is, CTE isn’t the only issue at stake. And while the potentially lethal effect of thousands of subconcussive and concussive hits is something to be reckoned with, all the intense & furious fear-vs-denial arguments are drowning out the rest of the conversation – about concussion and mild TBI as the rest of us experience it. And in the process, I worry that we’re not only sending the message to concussed kids and their parents that their lives could be in danger, but we’re neglecting talking about how to successfully recover from concussion / mild TBI.

After all, if we figure out how to recover from it successfully, then people might continue to bash their heads, thinking that they’ll just be able to fix them later.

In the words of that little old lady in the commercial, “That’s now how this works. That’s not how any of this works.”

There’s an awful lot of head trauma going on — there always has, and there always will be, so long as humans have heads — or we all get our consciousness transferred to robotic brains that don’t have the same organic vulnerabilities we do (that’s not something I ever want to do, but it will probably be an option, someday). Dealing with concussion / mild TBI is about more than preventing the injuries and doing immediate medical interventions. There’s a whole process involved in recovery. And a lot of that process involves reconnecting the parts of our brains and our lives that have gotten frayed or ruptured or otherwise broken.

See, the connections that get damaged are not just the ones in our brains. There’s also our social connections. And our connections with ourselves. Our brains are “central processing hubs” where information comes in, gets processed, and then directions are given for how to work with it. When our brains get injured, they don’t necessarily make the right connections — and some connections may even be lost. Our sensitivity to light and sound can change. Our coordination, which lets us interact with the physical world, can be changed. Our ability to hear or read and understand language can be changed. And our response time can be changed, as well.

It can be incredibly disorienting. And it can feel like the changes are permanent and will never get fixed. When you’re in the midst of your “acute” post-concussion phase, and everything is fuzzy and foggy and slowed-down, it’s hard to see past that initial fog bank. The thing to remember is that, with the brain — as with everything else in life — things change. Some things get better, some things get worse. The important thing is that we get involved in the change, ourselves, and do what we can to make it better — or at least more like how we want it to be.

This is not only possible, it’s probable.

We are in constant connection with the world around us — through our senses, through our interactions, through our very thoughts — and we were constantly adapting to our environment. So, to say that damage from a TBI / concussion is permanent is, well, not accurate. In fact, it’s completely INaccurate. Unless we are dead, our brains continue to change and adapt, based on what’s around us.

Our bodies don’t stop taking in sensations. Our nervous systems don’t stop transmitting stimuli to our brains. Our brains don’t stop taking in and interpreting that data. Granted, everything may work differently than before — in some cases, making us feel completely unrecognizable to ourselves, and making us behave like a different person around others. But the end of the story doesn’t come, until we draw our last breath.

As long as we’re alive, we’re connected — somehow — to life. To bring ourselves back from concussion / mild TBI, we need to foster our connections even more. And we need to come up with creative ways to do it. Because the rest of your brain is waiting for you to wake it up in new and novel ways, so it can do old (and new) things in a whole new way.

This is so, so important. We have got to keep sight of the hope and the possibility, even as the public discussion focuses on death and destruction. Yes, CTE is a real danger. Yes, repeat concussions can cause serious harm. Yes, people suffer and die from untreated TBI all the time. It’s a national issue and a national disgrace. The thing is, brain injury is not a death sentence — even repeat brain injuries, like I’ve experienced. People don’t have to stay broken after one, two (or, like me, 9+) concussions. People don’t have to accept a “new normal” of a permanently damaged life with no hope of joy left in their lives. They don’t have to stay isolated and alone, left to rot.

At the end of the day, I believe the key to overcoming TBI is connection — with others, with ourselves, with the sensations and activities of our daily lives that help re-knit the connections in our brains. There are things we can do to address our issues, things we can to do offset the initial damage that’s done. That localized damage may lasting, but it needn’t translate into permanent damage to the rest of our lives. Functionally, different parts of our systems can be trained to take on activities that some parts can’t do anymore. There’s nothing unusual or supernatural about that. It’s how we’re built. It’s how we are “fearfully and wonderfully made”.

What we do with that potential is up to us. What we do with our lives… that’s our choice.

After TBI or concussion – slower brain, craving stress

brain-firingOne of the amazing things about the brain is that it has an uncanny ability to get what it needs in the short term, but which actually hurt you in the long-term.

After injury, it can push you to do things that will feed its immediate need, but the ultimate result is just not good.

Take stress, for example. And danger. And risk-taking activities. All those things look like either bad habits or a taste for self-destruction. But actually, it can be the brain seeking out the pump of energy it needs to function.

After TBI or concussion, the brain’s “tonic arousal” (its general level of wakefulness) can be negatively impacted. The brain is literally more “sleepy” and doesn’t respond as quickly as it once did. Many concussed folks complain of feeling slower than before their injury, and while there may be a number of different reasons for that, tonic arousal can be a big component.

So, what does our brain do? It seeks out opportunities to come alive — to feel like itself again. WOO HOO! And for a little while, when we’re stressed out over our procrastinations, or our altercations with others, or our other poor decisions made in the heat of the moment, we actually do feel alive. We feel like ourselves.

The only problem is, stress and drama actually keep us from learning. The parts of our brain that need energy and information can be literally shut off, when we’re under extreme duress. And as a result, we can end up repeating the same stupid mistakes over and over again.

Because A) We haven’t had the chance to learn from our last mistakes, and

B) There’s a part of us that actually thrives on those stressful situations.

So, it’s a vicious cycle.

And it applies not only to folks with TBI and concussion, but also those with ADD/ADHD, PTSD, or other brain-related issues that slow them down. When you need to go faster, your brain will do what it needs to get its requirements met. The only problem is, over the long term, this can be… just a little disastrous.

You can read more about this here at:

A Perilous Relief

Just something to keep in mind…

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

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

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

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

Because there are plenty of them out there.

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

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

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

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

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

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

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

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

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

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

Find a New Neuropsych Step #2: Be clear about what I want to achieve from working with someone.

checklistStep #2 in finding a new neuropsychologist is : Be clear about what I want to achieve from working with someone. I need to make up a short-list of my issues — a condensed version which will communicate to the neuropsych the nature and extent of my issues.

The last time I was looking for help for my persistent TBI/concussion issues, back in 2008, I did a lot of things in ways that kept me from getting help. One of those things was bombarding potential docs with a whole binder full of information about my history, my present, and more. It was seriously a sheaf of papers I had to hold together with a binder clip. And when I showed up to talk  to neuros about my symptoms, they just looked at me like I was insane.

Because I sort of was. TBI had so scrambled my brain, had so confused my ability to think clearly about, well, anything, and it had really decimated my ability to see the forest rather than all the trees. It also exaggerated just about any perception I had, distorting it like a funhouse mirror. So, of course I looked and sounded a little crazy. Of course I did.

And accordingly, I was dismissed and treated like a malingering drug-seeker — and I didn’t get any help at all.

So, I had to take care of it, myself.

This time, I don’t want to repeat that, so while I am collecting details on my current situation, I’m thinking about how that actually affects my functioning, what impact it has to myself and my environment, and how I want it to be. Cliff notes. Boil it down. Now I can actually boil things down to their most basic essence, so I’m going to do that.

This morning, I am extremely dizzy & lightheaded, feel like I’m going to fall over, my head feels like it’s in a slowly tightening vice, and I’m pretty foggy today. I’m having a heck of a time getting started. It’s holding me back, because I need to be up and at ’em, not puttering around the house, fiddling with this and that. I know better. I’m just having trouble doing better, and I’d like to fix that.

I really need to be “on”, these days, because my year-end self-assessment and performance reviews are happening now. Unlike days of yore, when your boss rated you, nowadays we have to do assessments on our activities and report on what we’ve done. This is one of those times when I can’t fake my way through — I need to be clear and concise, and I need to represent myself well. If I’m foggy and can’t get started (I’ve had real problems with initiation for a couple months, now), I can’t do my level best on my self-assessments or my future goals. I’ve struggled with just getting myself to figure out the self-report form, and I’ve messed up a couple times, putting comments in the wrong fields (of course, it would be nice if the app let me move things around, but no).

And these difficulties directly impact my ability to earn a good living, advance in my career, and be the best that I can be.

So, in order to get help with this, I need to be able to succinctly state the issues I’m having, how they are affecting me, and state clearly what I want to have happen instead. I need to give enough information that it makes sense to someone, but not so much that they glaze over.

I also need to use these notes to practice talking to someone about my issues, so I can communicate clearly and have all the right information to give them. I’ll use my notes as talking points — and possibly make up a separate bullet point list for myself — no, it will be more helpful if I am referring to a copy of what I give to the other person.

Armed with this tool, I hope to find someone to help me “hack” these problems. That would be great.

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

TBI Haiku – sort of

No seed in the birdfeeder.
The hungry chickadees
are safe from the hunting hawk.

I know this short poem doesn’t meet the requirements for haiku – it has too many syllables.

But it says what I need it to, in 3 lines.

When the birdfeeder has seed in it, the hawk comes and picks off the chickadees who feed at it. It’s amazing and terrible. I haven’t been able to fix the feeder since I took it down to keep the squirrels off it. I still need to put it back, but it’s a multi-step process, and I’m too tired, these days, to do much about it. Maybe this weekend I will fix it.

Much of my passion is gone – that fiery Will To Do has tempered. Maybe it’s age. Maybe it’s wisdom. Maybe it’s perspective. It seems more like confusion to me.

Before my 2004 tbi, I had so much enthusiasm and passion for life. Then everything fell apart, and my passion was replaced by rage.

Now, I’m more happy to have nothing “going on”.  Passion and enthusiasm get me turned around and confused, and they don’t last long. I frankly lose the spark pretty quickly and then forget what I was so excited about. Some things come back, but a lot of it doesn’t last.

I just don’t have the stamina I used to. Not when I’m so tired… as I often am.

But that keeps me from dissipating all my energy. It keeps me grounded and focused. And I see past the shiny facade of raw passion, to find what is truly useful and valuable to me.

And that keeps me safe.

No, more than that. It keeps me stable and helps me to learn anew each day, who I am — and am becoming.

After so many years in confusion and pain…

coming out of the dark
It’s been a long time coming… but it’s here

I can honestly say that life is leveling out for me, and I now have what I would consider a “regular” life. And starting from there, things are becoming truly exceptional.

The “regular-ness” is amazing and phenomenal in its own right. I have been thinking about how many years I spent in confusion and frustration, always playing catch-up, always struggling to keep up appearances of normalcy, always feeling — and being — so behind. And never knowing why that was.

Little did I know, concussion / mild TBI had knocked the crap out of me. I’m not like folks who go through their lives at a normal pace, then have a concussion / mTBI screw them up. I was always screwed up by brain injuries. I started getting hurt when I was very, very young (maybe even having an anoxic brain injury – from having my air cut off – when I was an infant, according to my mother), and I continued to get hurt regularly over the years. I never got hurt badly enough to stop me from diving back into things. And nobody around me knew that I was hurt badly enough for it to throw me off.

I kept all that pain and confusion inside, for as long as I could remember. It was just one day after another of working overtime, trying to keep up with everything… and failing. Always coming up short.

Now, suddenly, I feel like I’ve come out of a long, dark tunnel into the light. No, not suddenly… It’s been a gradual process, so my eyes have adjusted to the light. But the realization of where I am and how I am now, is sudden. It’s like I’ve at last joined the land of the living.

And I am amazed.

How did this happen? How did I get here? It’s been a slow building process, with pieces of the puzzle floating around in the air… taking their sweet time getting plugged back together again. But once they click into place, they click.

Phenomenal.

So, now I have to ask myself — how did I get here? How did I manage to do this? I had all but given up on myself and figured I’d just be struggling and battling, all my born days. But I don’t feel like that anymore.

How did this happen?

I think there were a number of factors:

  • Having someone to talk to on a regular basis – first, my neuropsych, then another counselor who has been able to talk me through stickier emotional things that I don’t like to discuss with my neuropsych. Having someone to just listen and then get to interact with, has had a hugely positive impact.
  • Deciding that I needed to get better. Even when everyone was telling me I was fine, and I didn’t seem at all strange or brain-damaged, I could feel that something was off. I just wasn’t myself. Nobody else seemed to get it. But I did, and I was determined to do something about it.
  • Getting my Sense-Of-Self back. This was the biggest piece of things, by far. It’s been the key, because restoring my Sense-Of-Self makes everything else possible. It absolutely, positively, is the biggest piece of the puzzle.

How did I do that? I’ll be writing about that in the coming days and weeks, as time permits with my schedule. But basically it’s this:

  1. Find a small but significant way I am struggling — a day-to-day required activity that “shouldn’t” be difficult for me, but which is a huge challenge. Getting ready for work each day is a perfect example for me.
  2. Develop a system and a routine for doing that small but significant thing the very same way, each and every day. Making this system into a routine not only makes it predictable and comfortable, but it also keeps my brain from being overtaxed by having to reinvent the wheel each and every day.
  3. Really pay attention to that routine, and really dive into it with all I have, sticking to it like glue.
  4. That routine then “rewires” my system — brain and central nervous system and autonomic nervous system — with familiar and recognizable patterns.
  5. These patterns become something I can then rely on, to know who I am and what I am about… and what I can reasonably expect myself to do under regular circumstances.
  6. In times of uncertainty and insecurity, I can go back to those patterns and find comfort in their familiarity. So that not only gives me confidence in myself, but it also gives me a refuge where I can find some self-assurance again — even in the smallest of ways.

It’s all about building confidence over time.  Predictable patterns. Predictable behaviors. Predictable reactions. And that can lead to predictable outcomes.

Our brains are pattern-seeking by nature, and when we don’t have predictable patterns, we have the sense that we are in chaos — we are threatened. Building in predictable patterns is the key, for me, to a healthy recovery from PCS / mild TBI / other brain injury issues. And anybody can use this. Anybody can do it.

That includes you.

Chapter 3 posted

Here’s a random picture of a random French bridge

TBI S.O.S. Chapter 3 just updated after a long day of reading, listening, writing, research. Very satisfying, but also tiring. Good thing tomorrow is Sunday 🙂

Here ’tis:

Chapter 3 – Does the Self Matter?