So… work. So what?

My current therapist tells me I should not work so hard. So do other people who care about me. I’m sure they mean well, but they cannot see how much work it really takes to make me as functional as I am.

I work my ass off. Regularly. As a matter of course. My body is dotted with little bruises from too much contact with my everyday life. And my head is spinning with the details I have to keep in order, and reminders to use the tools I’ve developed for myself to manage it all.

My head is a playground for efficacy and my body is a scarred-up old warhorse that has seen plenty of battles. The net result: tremendous success, by any measure. But plenty of pain and anxiety and suffering in the meantime.

I go out of my way to obscure the “clatter” of my start-stop-faltering-resuming life from the ones I love, because I don’t want to hurt them, and I know from experience that they feel pain when they see me going through things that cause them pain. So, I just don’t bring it up. And I work-work-work away-away-away, to get myself through life. I just want to get from Point A to Point B to Point C and so on, without the hindrance of other people’s discomfort. I sincerely don’t want to harm anyone who cares for me. And I keep the laborious nature of my adventures to myself.

It works for me — pun intended. Or is that a double-meaning?

Anyway, I’m feeling strong this afternoon. I work-work-worked this morning on some really important tasks. And I work-work-worked on tracking my progress, which I have not done in about a week. I’m thinking it would make sense for me to do my regular check-ins on weekends (preferably Sundays), so I can focus on them fully. The rest of the week, I’m too busy working, to spend a lot of time recapping and assessing and checking in.

Then, I lay down and took a nap, while listening to Belleruth Naparstek’s CD on “Stress Hardiness Optimization” for helping first responders and people in high-stress situations manage their stress level. My whole life is a first-responder situation — I’m the first on the scene at all my catastrophes, and I’m the one who has to pull my ass out of the fire or back from the brink, time and time again, before anyone has a clue that I’m as close to disaster as I am.

It’s one of the hazards of keeping your difficulties to yourself — you’re on the hook for fishing yourself out of the drink, if you go overboard in rough seas. You’ve got to make sure your life jacket is always strapped on tight, that you can swim properly, and that you haven’t eaten anything in the last 20 minutes that might give you the bends.

That takes work. A lot of work.

So what?

It’s not like it’s not worth it. It’s not like I have a choice. Oh, certainly, I could sit around and feel sorry for myself — Poor me! — and sit on that pity pot all the live-long day. Sure, I could rail at life for setting me up for failure. I could moan and bitch and complain at my crappy fate. I could resist with all my might, and refuse to do the Work that Life requires.

But where would that get me?

Nowhere.

And who would care?

No one.

All anyone would know — or see — is that I can’t manage to do a damn’ thing with my life, that I just keep screwing up, and what the hell is wrong with me, anyway, for having so much potential, yet doing so little with it?

I have a theory — everyone has great gifts, and everyone has great potential. It’s the people that have to work the hardest to bring it out, who experience the greatest payoff.

I want my payoff.

I have an evening’s worth of achievements waiting for me. Back to work…

My solution for TBI/PTSD rage

Anger (or out-and-out rage) is one of the places where my TBIs and PTSD intersect to cause real problems. I’ve been having some rage issues, lately. Getting worked up over little things — getting angry over nothing, really. Just getting angry. Temper, temper…

In the moment, my anger — my rage — seems completely justified. I feel with every cell in my being that I am entitled to be outraged. I am entitled to be angry. I validate my emotional experience, and I end up spiraling down into a deepening pit of anger, resentment, and acting out. Yelling. Making a fuss. Putting up a stink. And getting aggressive with whomever happens to be offending me at the moment.

This is not good. I’ve done it with police officers, and I’m lucky I didn’t get cited. Or arrested. I’ve done it with family members, and it’s cost me plenty, in terms of peace of mind and my relationships. I’ve done it with co-workers, and it strained our connections to the point of breaking.

Not good.

But lately, I’ve been able to pull myself out of my downward spiral before it gets too much of a hold on me. I’ve started doing some basic things that stop the progression of rage before it picks up so much speed it’s like a runaway freight train.

First, I recognize that I’m angry, and I am convinced that I’m right about being angry. This might not seem like a big thing, but I have trouble figuring out how I’m feeling sometimes, and anger is one of those emotions that I don’t always identify well. It just feels like a rush of energy — and while everyone around me knows I’m pissed off, I usually can’t tell what’s going on with me until it’s progressed to a really problematic point. I recognize that I’m angry, and I remember that I need to not let myself get carried away.

Second, I step away. I take a time-out and just walk away. I stop myself from saying what I’m about to say, no matter how badly I want to say it. I tell myself, I’ll give it some thought and figure out how to say it exactly the way I want to say it. I tell myself… anything … just to extract myself from the situation. I step away, telling myself I’ll come back when I’m better able to express myself.

Third, I take some deep breaths.  This helps stimulate my parasympathetic nervous system, which is the part of the nervous system that chills you out. The sympathetic nervous system is what gets you worked up to respond to a crisis situation — and when I get really angry, it’s often because I think and feel like I’m in a crisis situation, and my body is getting all geared up for fight or flight (more often fight). I consciously take some deep breaths to get my parasympathetic nervous system to chill out.

Fourth, I seek out some kind of tactile stimulation. I need to get out of my head, which is spinning out of control, and just give myself a different point of focus. My head is going so madly, at this point, that I cannot even think straight, so I seek out some kind of physical sensation to get my mind off the madness. I press the side of my face against the cold side of a door that leads to the outside. I pick up something rough and rub my fingers along it. I jingle change in my pocket. Or I find something heavy and hold it. The physical sensation, along with the deep breathing, gets my mind off the crazy cycle it was in, just a minute ago, and it lets me focus on a single point — the feel of the cold door against my cheek or the feel of quarters and nickels and dimes juggling among my fingers. Tactile stimulation, like looking at a flame of a candle while meditating, helps me center and get my mind off that crazy downward cycle.

Fifth, I remind myself that my body and brain are playing tricks on me. I am probably not getting angry for the reasons I think I am — it’s my body that’s getting all worked up into a fight/flight/freeze state, and my mind is interpreting that as a real sign of DANGER. And I’m probably starting to panic a little, too. As a matter of fact, when I take an objective look at things, the rage that’s building inside of me might not even be real rage, rather a response to a hyperactive sympathetic nervous system response. It could very well be my body tricking my mind into thinking the wrong things. And I need to remember that I get to choose how I interpret my life. My mind gets to decide how I’m going to think about things, how I’m going to react. And my well-intentioned body, which thinks it needs help, is just misleading my brain into thinking that I have to do something about whatever it is that’s getting to me. When I remind myself that this is a physiological process that’s taking place, I am able to relax… and the anger subsides.

The thing I have to remember, when all this is coming down, is that It Is Not Worth It. No matter how justified my rage seems to be. No matter how entitled I am to be angry. No matter how wronged I may have  been. It is not worth it, to get so tweaked over things. When I go off on an anger “binge” I end up feeling really hungover and dumb and numb afterwards, which just makes my life more difficult, once it’s passed.

I’m no doctor, but I suspect that it may be connected with the mechanics of panic/anxiety… all that post-traumatic stress stewing in a pot, and my TBI brain being unable to sort it all out in a timely fashion… My processing speed is slower than I’d like, and by the time I figure out what’s going on, the damage is often done.

So, I do my best to recognize when I’m getting angry, I step away, I take some deep breaths and try to relax, and I do something that gets my body’s attention — like feeling something cold or rough or tactile in some way. And I remind myself that my brain and body are playing tricks on me again. They’ve done it before… and they’ll do it again.

Or, perhaps more accurately, can LIVES be saved?

I had some feedback from one of my posts yesterday about Bob Woodruff’s recovery from TBI.

I didn’t like the article at all – in fact I felt it did a HUGE disservice to brain injury and rehab – it gave the impression that there were these wonderful cognitive programs that could restore people to their regular functioning in a relative reasonable period of time, that these services could be tailored to everyone’s particular needs, and that so much has changed that brain injury is ‘curable’.

The reality:

The is little funding still for most services, most insurance plans cover very little especially in cog rehab – which may be needed for years to be helpful.

Recovery of any kind is YEARS – not months, not a year or two but YEARS.

There are no miracle programs – this is slogging through a lot of really frustrating activity, going round in circles, making mistakes over and over and over, training yourself to be disciplined about organization, planning, memory skills, rethinking your life career etc

While  I appreciate the Woodruffs bringing attention to the issue Bob Woodruff got top ranked care – the vast majority of people DO NOT receive ANYTHING like that – they may get a few months of cog rehab, some PT, and a year of neuropsychological counseling. The existing services for TBI are terrible, un-coordinated, cookie-cutter, short term, and severely underfunded. 90% of the survivors DO NOT get any thing that is customized – most do not get even half of what they need that would truly empower them and enable them to have productive lives with true quality of life
VERY little is still understood about tbi – especially mild tbi. There are probably many many people who have TBI’s and don’t recognize it as such – they are just considered ‘moody’ or easily distractible or have other issues in relationships etc. We know virtually nothing about how the brain works and organizes data, repairs itself or re-organizes after a trauma. Much much more research and money is needed to allow professionals  to understand tbi, provide better tools for helping people recover (whatever that may mean), better ways to diagnose and to eliminate the stigma involved. 80% of tbi survivors do not recover their previous employment levels, and equal numbers experience loss of spouse, family and or friends, NO ONE wants to tell a prospective employer they are a survivor. Most tbi survivors do not write books or go on tours or have understanding supports – they end up financially destitute or in severely reduced circumstances, alone, struggling and often develop addictions as a result.

The article presented a rosy cheery picture of tbi – just like having a hip replacement  – tbi is a life-changing event and is underfunded and not understood. there are no ideal treatments and many people end up overdrugged – even by the ‘professionals’. I get frustrated by such articles because they mislead.

Some folks in advocacy agree with me and others don’t. Some feel that any attention  to TBI is helpful and that at least by making it less strange it encourages people to accept that many people do have tbi’s and are ‘normal’.  So I admit that my opinion is not universal. I will also say that this was the second brain injury article by that paper that focused on a well-connected individual who got amazing health care – and in this other case that person did make a phenomenal recovery – again, the kind of recovery that 99% of tbi’s do not make. So some of my frustration is also based on that. I would love to see a “Ordinary Jane or Joe has a tbi” story – and what it means to lose your career, to lose your home, to have a changed marriage, to try and re-create a self, to have 3 months of cog rehab and told you are ‘fixed’ because your insurance ran out – to struggle in school, at work, to lose your job – all these things that are what happen to most Americans – including our Vets.

Healthcare is a critical issue in this country and tbi is part of that. It will be ignored and forgotten if the true loss of lack of care is not made clear.

You know… it’s true. The vast majority of us who sustain these types of injuries never get the help we need — many of us never even realize we need it… until too late (or almost). Personally, I consider myself extremely fortunate to have put two and two together before everything fell apart for good. I was awfully close to the edge, now that I think of it. I dodged a bullet. And I am incredibly grateful for the combination of fate, the world wide web, and my local Brain Injury Association chapter, for helping me put this together… as well as to my various therapists and friends and strangers who had the right info at the right time, who kept me from tripping and tipping over that very precipitous edge.

Not all are as lucky. And I have been lucky. I am very much aware that I could easily have ended up in much tougher straits than I am, right now. It was almost a fluke, that I even got a clue that I needed help. And while I have had to work my ever-loving ass off to get the help I need, and it feels like it’s been a long time coming, and I still have a long way to go, at least I have had the personal resources to launch into this quest for clues.

A lot of others don’t. They just get lost. Pushed to the margins. Out of sight, out of mind, out of luck.

I hate to say it (and I’ve felt a bit guilty about thinking this), but I’ve never been that comfortable with Bob Woodruff’s story and the way he’s been portrayed as a kind of “poster child” for TBI recovery. It’s like they’re not telling us the whole story — like how he really is at home, what his moods are like, what his interpersonal skills are like, what his memory is like.  He’s an attractive public mainstream figure, who has received the best treatment possible and works in a field where his performance is not only scripted beforehand, but edited between the time he does it and when it is aired to the rest of the world.

I’m reluctant to say any more about him, because I am not thoroughly familiar with his work, and what I’ve seen of him has been positive. No-way, no-how do I begrudge the man his recovery or his restoration to broadcasting work. He’s covering some really important stories that I enjoy watching. But I wonder how much similarity his experience actually bears to my reality. Or to the reality of countless other tbi folks. I wonder how his irritability/anger management is, if he has constant ringing in his ears or constant headaches or other chronic pains. I wonder what truly goes on in the privacy of his own home, where no cameras are rolling and no editors are deleting the segments where he’s struggling to find the right word or remember what he was going to do when he walked into the next room. I wonder what his life is really like.

One of the things that I think may have helped him get back to work, is the fact that he works in broadcasting. Being involved in broadcasting, myself, I know how helpful it is to have a script to go by, when you’re doing your job. I often create and use “scripts” in other situations, like when I go on job interviews, or I am leading a meeting and following an agenda very closely. Having a scripted line of work (or work that follows specific guidelines, like strict meeting agendas, or has a heavily-project-managed element to it) makes getting back to work — and re-integrating into society post-injury — a lot more straightforward, in my mind.

It’s never easy, of  course, but if you know what you’re going to say and do ahead of time, and you have ample opportunity to practice, and you don’t have to be “on” for more than the length of the take/recording… and you get to edit out the parts of your performance which aren’t that flattering… well, I can see how you could present a really excellent picture of miraculously restored health after what was supposed to be a fatal accident that would — at best — leave you a vegetable.

Thinking back to the positive tbi-is-fixable article in Parade, I’m struck by the emphasis on the idea that outside therapies are capable of restoring functionality post-tbi. I don’t doubt that having someone work with you can be of tremendous help, but from what I’ve seen and experienced, what you do for yourself, with yourself, by yourself, can be a critical factor in the degree of your success.  Of course, it is important to get outside help — especially from trained professionals who have made the study and treatment of tbi their life’s work. But I also agree with the Give Back Orlando materials about outside therapy only going so far — at some point, the insurance gives out or the prescribed treatment runs is course, or therapy is no longer available or an option for you.  You then have to step in and run things for yourself, or you’re just not going to get that far. Reading about long-term efffects of TBI, what I’m struck by is that folks may improve over the first several years post-injury… but look at them 10-20 years later, and sometimes they’re really struggling. I think the critical piece in this is self-reliance and the ability to do self-therapy.

Personally, I suspect that my own self-reliance has been the secret to my repeated recoveries over the years — never having any help, and being forced to fend for myself. Not that I had any choice, mind you. My first injury was 36 years ago, and nobody had a friggin’ clue about mild tbi, back then. A year after that, when I had another more significant injury, it was worse, but not bad enough to send me to the hospital, and they probably would have just sent me home again, anyway. I’ve been hit on the head, fallen down stairs, fallen out of a tree, been hit from behind in several different cars, and I’ve had my bell rung more than once while playing contact sports, over the past 36 years. If anyone should be marginally functional and struggling in vain with basic stuff, it would be me.

But I’m not.  I do struggle terribly at times, and I do have some pretty problematic issues, but I usually manage to figure a way out of my predicament… eventually. I’m not destitute, and all my friends and family haven’t fled from me. I am not homeless, I am not out of work, I am not that terribly marginal — except to the degree I pull myself out of the mainstream frenzy to keep my balance and sanity. Best of all, I am not in jail (granted, I dodged the bullet of arrest a bunch of times, but hey – at least I dodged it, right?) Given just slightly different reactions and choices in many of my life experiences, I could easily have ended up in an institution of one kind or another. My own parents tried to get me committed due to my “inexplicable” behavior, about 20 years ago. It didn’t work, I’m happy to report.

Maybe I’m just too stubborn and too averse to acting/living/thinking like someone who’s brain-damaged. Maybe I’m too proud to give in. Maybe I like having a regular life too danged much to let go. Whatever the reason, I’ve been self-reliant and headstrong and stubborn from the start, and I credit my tenacity and determination to just keep going, regardless of whatever the heck life throws at me, with keeping me in the game.

Now, I wouldn’t recommend following my tumultous loner’s path to anyone — tho’ a lot of us are in this “boat”. It’s lonely and confusing and confounding and can drive you half mad. It can also really piss off everyone around you and cost you jobs and friends and family, and you have to work twice as hard after the fact to fix things up again. But at the same time, a lonely, isolated path forces you to develop a self-sufficiency and skills that you might not have to, if someone else were standing by your side, walking you through everything, checking in with you regularly, and keeping you on track.

It’s kind of like that “restraint” training that some stroke survivors do — to train the hand/arm/fingers on their impaired side to function again, they tie down the arm on their able side, so they’re forced to use the impaired side. And they can progress at rates quicker than those who don’t use this technique. I’m not sure if I even have a lot of “un-hurt” parts of myself to tie down. I’ve been pretty roughed up, over the years. But I’ve forced the broken parts of me to keep going, regardless, and it’s paid off.

That being said, what I think helps me the most as a long-term multiple mild tbi survivor who is not just surviving, but thriving, is:

  • keeping my spirits up,
  • staying intensely interested in all of life around me,
  • staying positive and solutions-oriented, and
  • having plenty of access to quality information — both from the internet and neuropsychologists who are available to me.

I wish to high heaven there were head-injury-aware neurologists who were freely available to chat with the tbi survivor population — maybe I’ll check with my local BIA chapter to see if they know of any — because I’d love to be able to ask them a bunch of questions about brain function (particularly mine) without needing to clear it with my insurance company. I need information. I thrive on it. Even if I don’t understand every little bit of it, and there are pieces that get lost along the way, still… it gives me a general orientation in how to live my life. And that helps. I need information to save my life. Literally.

That’s what it really boils down to, I guess — not so much about saving my brain, as saving my life. Sure, of course, I want to save my brain, but there is much more to me than what’s between my ears. There’s what’s in my heart — and in my gut. There’s what is in my spirit, as well as the sum total of my past experiences and all the invaluable lessons that have come from that. My brain may have issues that need to be dealt with, but ultimately, there’s a whole lot more to me than just gray and white matter segmented into various lobes and cortexes (or is it “cortices?”). There’s a whole person in here, with a lot more going on than the electrical impulses and connections between synapses and neurons and dendrites and whatever else is up there (that they know about or haven’t discovered yet, which I suspect is a lot).

And I think that’s also what gets lost, a lot of times, when people deal with TBI. They are so focused on the brain, on the individual functions of the brain that need to be restored or changed or compensated for, or whatever, that they can lose sight of the rest of themselves that is so very vital in dealing with their new brain, their new personality, their new self. The old brain is gone. The old self is gone. It’s not coming back. It can be a terrible loss, and it does need to be recognized and grieved. But at some point, you’ve got to let go of the idea that things can be the way they were before. They can’t. You may be able to get back to a semblance of your former functioning, but the old ways of doing things are gone-baby-gone. It’s a tragedy. There’s no two ways around it.

But that’s not the end of the story. The good news is that for every old way that’s gone, there are lots of new ones waiting to be discovered and developed. The brain is an awfully big place (its size notwithstanding) with a wide, wide world of possibilities. The human spirit is enormous, with more capabilities than we can ever imagine. The body is also capable of incredible changes and adaptations that can compensate for plenty of problems. I’m not trying to make light of tragedy and loss, or make it out to be less serious than it is. It is serious stuff. And it is a terrible, terrible thing when it happens. But there is a whole lot more to us, than we can ever imagine.

And until we put our minds to it, we can never begin to find out just how much is in there.

So, while I do often wonder if brains can be saved, I’m ultimately much more interested in how lives can be saved. It’s not always about what’s in our heads that counts in life — it’s what’s in our hearts.

The beauty of structure

Today turned out to be a pretty good day… after spending all day Sunday doing things other than what I needed to be doing. I hadn’t checked my notes on Sunday a.m. about pending stuff that needs to get done, and Monday a.m. was the first I remembered a lot of it.

Ugh.

Oh well.

That’s what I get, when I don’t check my notes. The things I needed to do would have taken maybe an hour or two, but now I have to find time in my work week to do them, which will probably take substantially longer, since I get worn out pretty quickly by the 9-to-5.

Today, I had a pretty structured day, and I got a lot done. The beauty part was, I figured out how to cut some of my losses and rearrange my schedule so I could get the most out of it.

I got caught up in personal stuff this a.m., when I was supposed to be getting ready for work, and by the time I got on the road, I knew I was cutting it close to get to my 10:00 a.m. meeting. Traffic was flowing, though, so I figured it would work out.

Then I hit heavy traffic, and everything slowed to a crawl… so, I called my boss, told them I wasn’t going to make the meeting, and I gave them my status over the phone. I knew I had a lot to get done… and I had this other pressing errand I needed to do today — no exceptions! So, I took a little detour and ran the errand before I went into the office, so I would have the end of the day to get my work done.

I usually start to wake up around 3:30 in the afternoon, anyway, so it makes sense that I should be spending that time on the last-minute fixes for this deadline, instead of packing up and heading out to take care of that errand.

Long story short, I got my boring-but-essential chores and my important tasks done, all in good order. And I had a nice big block of time at the end of the day to really focus my full attention on the most important things on my list.

And I’m feeling really good tonight — like I’m in the flow… in a groove. Now, for a nice dinner and some reading, and getting to bed at a civilized hour.

Woo hoo.

It’s the little things, y’know?

Confessions of a compulsive list-maker

I admit it – I’ve grown somewhat compulsive about my list-making.

I created a “master list” that I use to track my daily productivity — and to make sure I’m doing all the things I’m supposed to be doing. I also have separate lists for work things and home things.

I have lists that track the longer-term and more complex items that are on my to-do agenda: clean my study, file my taxes, fix the broken faucet in the kitchen, sell extra items I have lying around the house online.

I also have lists that detail “big picture” things I need to do — like clarify my Life’s Work, strengthen skills I need for long-term employment, and distant goals in the future.

Now, it may seem like a lot — and on some days, it is. But frankly, if I didn’t keep these lists, things would fall off my plate and not get done. Things that need to be done — like fixing the faucet in the kitchen and filing my taxes and taking the trash to the dump. These are just things that regular people do, they’re just a part of life — and if I don’t write them down, they won’t get done. I’ll forget all about them, while I’m off doing something else that did get written down on one of my lists. Or something that looked like fun that popped up out of nowhere and pulled me off in a different direction… only to eventually dissipate and disappear into the aethers.

These lists are not only helpful in keeping me on track — they also help me monitor my fatigue level. And my overwhelm. When my lists start getting longer and longer and increasingly involved, I can tell that I’ve got too much on my plate and/or I need to spend some time catching up with myself. Having a lot of things on my list overtaxes my system, yes — but it’s not only a cause of fatigue and overwhelm. It’s also a symptom.

I can tell I’m getting over-tired and not taking quite as good care of myself as I should, if I start listing an increasing number of small steps in between big ones… or I list things that really don’t need to get done. When I start micro-managing myself and adding things to my plate “for the fun of it,” I can tell I’m getting off track, and I need to step back and reassess where I’m at — not just in relation to my tasks, but in relation to my life.

Here’s a healthy list:

  • Clean my study
  • Work on taxes
  • Fix faucet in the kitchen
  • List items for sale online

Here’s an un-healthy list:

  • Clean my study
    • Find bank statement folders for 2005
    • Organize letters from family
    • Collect all journals since 1994 and organize
    • Vacuum and dust
  • Work on taxes
    • Clear workspace on dining room table
    • Gather calculator, scrap paper, pencils with erasers
    • Defrag computer
  • Fix faucet in the kitchen
    • Locate wrenches
    • Buy parts at hardware store
    • Clear out sink to make space
  • List items for sale online
    • Take pictures of items
    • Download to computer
    • Crop and edit photos
    • Write up text for ad
    • Research comparable prices
    • Check email regularly after listing to see if there are any takers

It’s not that these steps aren’t all appropriate. Some of them are, and some of them aren’t. The point is, when I get to the point where I’m writing down every last little thing I need to do (sometimes I go so far as to specify which jeans and boots I’ll be wearing when I mow the lawn), it’s an indicator that my brain is not trusting itself with relatively basic details and it is compensating in advance for problems it’s anticipating. That means it has an inkling that it’s having problems, and I need to listen to that – pay attention to the signals and signs, and adjust accordingly.

The way I adjust is by taking time off. Stepping back and pacing myself. Not getting so wound up and frantic over every little thing that I can’t function unless I’m giving myself explicit instructions down to the most minute detail, but breathing deeply and relaxing and just thinking things through, before I get started with them. When my brain is in decent working order, I don’t need to have every little action item outlined for me. I can identify the big things, the main activities, and then work from there, stopping frequently to check in with myself about how I’m doing… and not being afraid to step away for a break, because I know I’ll come back to finish the job.

I suppose it’s about trusting myself… knowing my limits… and recognizing the signs of overwhelm — while it’s happening, while it’s building, and before it snowballs into a massive Sisyphusean boulder of hurt-in-the-making.

Yes, those lists do come in handy… so long as I don’t  become too dependent on them and let them take over my life.

‘Cause when the lists do take over my life, I end up being so busy keeping them updated, that I actually get less done. And then I’m upset with myself at the end of the day. And that’s not good. The point of the lists is to get things done, not keep more lists. The point is to live life, not just observe it. The point is to establish a real connection with what I do, how I do it, and why I do it, and inject some consciousness, already, into the whole act of living. It’s about turning work into art, life into art, and using extra tools — in this case, lists — to deepen my involvement in my daily life, which can (when I ignore it or gloss over it) can rapidly get away from me.

Anyway, last night — after not getting much of anything done and realizing I’d spent a whole day tracking my progress, instead of making progress — the following occurred to me about my lists. And I quote from my journal:

It’s quite simple, really.

It’s (list-making) not just about keeping lists and checking off items and critiquing myself at every turn.

It’s much more about paying attention to your life. Not taking things for granted. It’s about participating in your own daily activities with full consciousness and mindfulness.

And learning along the way.

It’s about having a fully involved life that you live by choice, not by default. About being open to experience and not falling back on rote repetition of someone else’s ideas about what your life should be like and what should matter to you.

Indeed, tracking what I’m doing, how well I’m doing it, and understanding why I’m doing it in the first place gives me a safe and convenient and tangible connection to my life. It relieves me of the pressure of keeping everything up in my head, and it helps me see — right there in front of me in living color (green for success, orange for still-in-progress, and neon pink for rats-didn’t-work-out-I’ll-try-again-tomorrow) — how my life is shaping up, where I’m doing well, where I’m falling down, and how I can do better next time.

Ultimately, this record-keeping compulsion serves a very useful purpose, in showing me where I’m at… Where I’ve been… How I got here… And where I think I should go next.

Onward…

But today was a really, really good day

See? Active management of my “new brain” works… I can hardly believe the difference between yesterday and today. Like day and night – or night and day, respectively speaking.

Yesterday, I was all over the place, wafting about on every wind that came along, getting “blown off course” by the little molehills that turned into mountains, losing track of my work and my progress, and ending up the day just exhausted, with precious little to show for my efforts, other than aggravation and rabid self-criticism.

Today I did things completely differently.

I set my intention to take the train into the city today, so I could have some time to plan and get clear on what I needed to do. I was running a little late, though, and since I wasn’t sure if I was going to be able to make the train on time, I made a Plan B for how I would drive in, if I just missed it or didn’t get to the station in time. There are three different ways I can drive to the city to work, and one of those routes is not far from the turn-off for the commuter rail stop. I’m lucky, that way — even if I miss the train, I can turn around and get back on one of the main routes.

I wasn’t sure I’d make the train, but I decided a few miles down the road that I was not going to stress over it. If I made it, I made it, and I would be glad. But I was not going to get worked up over it — especially since it was raining and traffic was very heavy. I kept a level head and took my time. And wonder of wonders, I actually made it to the train with three minutes to spare.

On the train, I took time to read the Give Back Orlando material and get my head on about tracking my progress. I also took time to plan my day. I had some things I wanted to read for work, but I didn’t get to them. But again, I didn’t stress over it.  I just rolled with the changes. It felt so good, to not have to drive the 90 minutes into town… I was just glad to be able to sit and read and relax.

So, my pacing was pretty good today. Relaxed and deliberate and measured. Well-managed, if I say so myself. I also took care of my physical health. I made sure that I had plenty for breakfast. I only had a small cup of coffee and a bowl of cereal before I left the house (my cat had a better breakfast than me), but when I got to the office, I ran out to a breakfast place and got myself a little mini-quiche — eggs and pastry and vegetables. I don’t care if quiche is “girly” fare. I was hungry, and I needed something more than cereal to tide me over. And I had some orange juice, too. Not the bottled stuff — the real fresh-squeezed stuff. Tasty.

When I got to my desk, I took my time setting up, and I did not start in on any of my tasks, until I understood exactly what needed to be done, and by when, why, and how I was going to do each one. Where there were gaps, I figured out how I would fill in those blanks — whom I would talk to, what info I needed to ask about. I looked at my notes from yesterday, organized my notes for today, and I prioritized all of my tasks. I have a lot of tasks each day – I have a busy job and a full schedule. And I’m on deadline on a really critical job. So, I can’t afford to monkey around.

Keeping a level head, I took my uncooperative little brain in hand, today, and I followed its shenanigans very closely. I wrote down everything I was responsible for, ahead of time, and when my brain started to balk at how much I had to get done, I kept an even keel and broke down the larger tasks into smaller ones and checked them off as I went. I didn’t move on to the next step, until I checked the results of the step I had just completed. It was painstaking and slow going, but it was very efficient.

I also tracked when I was having a “head-injured moment” and I put a big “HiM” in the margin of my personal notebook beside my notes about it —  and I circled it, so I can look back on it later. And I marked the incidents with a highlighter that’s in a color that I really dislike, so I’m sure to notice those moments, when I look back on them

There were some times when I got turned around and snappy with folks I work with. I felt bad about it afterwards, but fortunately, I work with good people who are also under pressure and have been known to snap, themselves, so they cut me some slack. I wrote down each time I started to get overwhelmed and I highlighted it in that nasty color, and I made mental notes about what to do better next time.

Just writing it down made me feel better. And seeing that I had a plan for how to handle things next time also really helped. It’s funny – I used to be so opposed to writing things down and keeping notes. I knew in the back of my mind that it was a good thing to do, and I wanted to, but I could never get my act together. Impulse control and initiation issues. Seriously. But today, I was so upset with myself about how yesterday went, I had no other choice. I had to actively manage myself, and so I did.

I also took some time for myself to unwind and just decompress. I knew that I was supposed to meet with someone at 1:00, but I walked out of the building at 12:30, and I took my time going back. The person I was meeting with has a very fluid schedule, and they’d brushed me off from the 11:00 meeting we’d had scheduled, so I just decided to take time for myself. I went for a long walk on this beautiful sunny day, not worrying about the timing, but doing the long walk around a bunch of blocks, and making my way eventually to a deli to get a sandwich. I didn’t have the leafy green salad I was thinking of getting — the lettuce was just about gone. I had a roast beef sandwich with some lettuce in it, and some chips. Just enough to tide me over for the rest of the afternoon.

I really felt better, too, not having a huge lunch. Some days, I get Chinese food, and they give you so much food, it sits like a big lump in my stomach all afternoon. I know I don’t have to eat it all, but perhaps it’s a perseverative quality of mine, that I compulsively finish my food. Today, I ate relatively light, but I did eat enough to not be hungry anymore. Somehow, I think the protein at breakfast and lunch was a help to me. Some days, I just can’t stop feeling hungry. Could be a protein thing.

Another thing I did right was, I drank plenty of water. I have a pitcher I keep at my desk, and today I actually used it. And I didn’t drink three big cups of coffee. I had a small cup with breakfast, and then another medium-sized cup around 2-3 p.m. I had been getting in the habit of having 3-4 mugs a day, which is not good. I have been meaning to cut down – especially since I’ve been having so much trouble sleeping. Today, I was able to make progress. I will probably never completely get rid of coffee, but I can at least cut down. And not drink any after 4 p.m., at the latest.

Towards the end of my workday, I took a look at my list, and I realized I had actually made progress. I’d accomplished a lot almost all — of the things I have to get done. When my boss stopped by to chat and I told them about another item I have on my to-do list to finish out one of my jobs, they were so happy. They told me they are really glad I’m working with the group. I said, “So am I,” as I was running for the train. All in all, a good way to end a good day.

So there it is. The difference for me between a good day and a not-so-good day can be something as simple as taking notes and paying attention to what I’m doing, from moment to moment. Mindfulness and attention and taking my time. Just being with the things I’m working on — focusing on them, giving them their due. Miraculously — and I never expect this — the more slowly and carefully I go, the quicker things get done.

I’m a happy camper, tonight. And I hope to repeat the performance tomorrow.

🙂

Yesterday was a wash

… Just about.

I had carefully made up a list of all the things I needed to get done — I’m on deadline at work, and it’s vital that I get the things done that I started, and that I do them on time. But I never checked my list until about 3:30 p.m., and then it was too late to do a lot of it.

I was just exhausted from the weekend — lots of activity and staying out too late. It was fun at the time, but it took its toll. And the people I’m working with are not pleased.

I’ve just got to let it go. I can’t start out today feeling bad about yesterday. It’s a new day. And I also have to remember that I’m not the only one in my group who’s struggling with work, right now. We all are, pretty much. We’re a challenged bunch of people with divided attention, conflicting interests, and way too much going on in our lives, overall. We’re also getting used to working together in new ways. There’s old bad blood that keeps people stuck, and there’s new opportunity to move forward. Main thing is, keep moving forward. But yesterday that didn’t happen nearly as much or as well as it should have.

I have to do something about this. I have to get out in front of my tasks. I know better than to do this. But the part of me that was playing all weekend wanted to keep playing, so I ended up messing up some stuff — and feeling badly about it.

More than anything, what takes the biggest toll is the emotional stuff. Feeling badly about myself. Feeling badly about how I’m doing. Feeling incapable and incompetent. And then, even if I’m doing okay by most people’s standards, my performance is thrown off even more. Because I’m feeling badly about myself and my abilities.

But it’s a waste of time to feel badly. My brain is just different now, than it was before my fall in 2004. It just has different needs and inclinations, which I have to factor in and accommodate/adjust to, if I’m going to have the level of ability that I desire. If I’m going to accomplish what I set out to, I need to use my tools — my planner, my notebook, my to-do list.

And I need to have just enough things on my list to keep me moving, without overwhelming me.

The thing about lists, though, is that I have to keep all the items I have on my plate (short- and long-term) in front of me in some way. I have to keep all my priority items in plain view, or I just forget about them. Other people look at my list, and they get all freaked out.  They tell me “It’s too much!” But for me, it works. I don’t mind all that stuff in front of me. I’d rather have it there, than forget about it — which is what I’ve done in the past … only to remember that I’d forgotten things I seriously needed to remember.

Until I find a way to remember everything — or hire a secretary/executive assistant to do the remembering for me — the stuff I need to do eventually is going to stay on the list.

But back to yesterday. What did I do which didn’t work, that I can do differently today?

  1. I didn’t check my list, first thing in the a.m. — I’ve checked my list for today already, so I’m good with that.
  2. I got down on myself for falling behind — I’m not going to do that today… get down on myself. I’m going to try the best I can, and leave the rest to fate.
  3. I thought the whole problem was me — I know I’m not the only one having issues. It’s just that the other folks I work with are really good at covering up their shortcomings and problems, and so of course (since I’m very open about the areas where I am lagging), I end up looking like the one who’s bringing everyone down. Matter of fact, I’m not — in fact, one of the reasons I’m behind on my tasks is that the folks I’m working with made a total friggin’ mess of it before, and nobody bothered to sort it out, till I came along and said, “This will never do!”
  4. I didn’t take time to plan my day and catch myself up — Today I am taking the train to work, so I can read and prepare.
  5. I let myself lollygag around in the afternoon, when I was tired –– Today, I need to pace myself and do at least something in the p.m, when I hit my low point (as I always do). If I plan for my lull, and I do something like walk around the office or take a break away from my desk when I’m tapering off, I may have better luck. There is a common work area I can go to that’s far away from my desk — I’ll try going there today and see if the change of scenery helps.

These are just a few of the things I can do differently today. I already feel better.

Basic ideas behind recovery from TBI

I’m working my way through the Give Back Orlando book Teaching Yourself to Prevent Head-Injured Moments by Dr. Larry Schutz, and making mental notes as I go. I’m also highlighting. And I also need to record some of my own impressions here. So far, I really like the book, and it’s a good reminder as well as an eye-opener about dealing with TBI.

In the “whole document” version  of the ebook, on page 1, Dr. Schutz says this (and my comments are in bold):

Here are the basic ideas behind recovery from TBI:

1. Head injuries don’t heal up. The injury continues to cause problems in your life until you recognize that you have to fix it and get it done. Fixing means finding a better way to run your brain. The fix works only as long as you run it in the new way. So fixing your brain is not a job you finish doing—it’s a way of life.

True – my injuries did cause me problems in my life. A lot of problems, as I’ve had a number of TBIs. I’ve fallen down stairs, gotten knocked out by mean kids, gotten hit on the head and fallen, had sports concussions… and let’s not forget the car accidents. Problems I encountered for practically my whole life include:

  • sensory problems — painfully hypersensitive hearing, experiencing touch as pain, tactile defensiveness, crappy vestibular abilities, trouble hearing and understanding what people were saying to me
  • memory problems & learning difficulties
  • social problems — hard time deciphering what people were saying to me
  • meltdowns and spells of loss of consciousness/bodily control
  • trouble holding down jobs
  • trouble making and keeping friends
  • just trouble

It wasn’t until I started to get my head around the fact that my head injuries had led to these problems — and many more — that I started to feel like I might actually be able to have a decent life and do something about this mess I thought was all my fault.

2. Brain fixes are not obvious. The injury makes your brain send out a signal that you’re doing fine. Those who take this signal at face value don’t realize that the injury messed up their thinking skills, so they don’t learn to fix the problem no matter how many years pass. Survivors only get on top of the problem when they start to recognize that the brain injury is affecting them, and set about finding out what it has done.

Yeah, I’m fine! Or so my brain tells me. This is so true. I have gotten myself into so many tough spots, just because I wasn’t processing the signals properly. I’ve nearly been shot, and I was almost abducted (twice) when I was younger, just because I “boldly” wandered into dangerous territory without guessing things were amiss. I’ve taken on jobs that I had no business doing, and I’ve pushed myself past my limits, over and over and over again, thinking that I was fine and I could take on one more thing. The “one more thing” often pushed me over the edge and ended up frying my system horribly — and sometimes putting others in danger from my meltdowns. But my brain told me I was fine, and I could handle one more big undertaking on 4 hours of sleep!

3. The only good fix for a damaged brain is self-therapy. No doctor or psychologist or therapist, or for that matter, family member or friend or priest or minister or rabbi can fix you, because what is wrong with you is happening inside your head. You are running the programs you created to run your old brain. Those programs don’t work properly on your new brain. Until you learn to re-program the things you do, you’ll go on having head-injured moments, unexpected foul-ups that make your life harder.

It’s good to hear someone say this. I know my neuropsychologist and my therapist would love me to seek as much professional help as I can, and I shall. But there’s only so much someone else can do for me, and they can’t walk around with me, every waking minute, holding my hand, making sure I’m okay. Nor should they. I need to learn to stand on my own feet. Plus, even if I did have someone to assist me at a moment’s notice, they aren’t mind-readers, and they can’t fix what’s wrong — and what only I  know is going on, in there. It’s all happening inside my head, and I usually need to adjust and fix things on a moment’s notice. Trying to explain to another person WTF is going on with me, the context, the texture, the subtleties, is just not practical — or practice-able.

4. Most survivors never figure out how to fix the injury; they go on to have the problems for the rest of their lives. Fixing a head injury is unnatural, and it’s not easy to do. It’s not a common-sense process—if it were, most people would be doing it on their own. It requires watching yourself closely, changing your habits, and developing self-discipline. However, once you set up the new habits, it’s not complicated like rocket science. Once you set up a basic program of self-therapy, recovery begins to grow from there. Your recovery gains momentum, becomes more real to you, and feels more rewarding, the more you work your program.

How true, how true! The one “fix” I’ve found for my own issues, is constant vigilance and developing the habit of paying attention to my thought processes — and my actions. It’s not a natural thing to do, and it’s not easy. But it has to be done. Or else. The good thing is, once I got in the habit of paying attention to those things that were causing me problems, and adjusting as I went, it did become habitual. And my recovery has gained momentum.

5. Most people are accustomed to looking to their doctors to fix them when the problem is an illness or an injury. That is not likely to be a good strategy when it comes to TBI. Doctors receive no training on how to fix this injury, even if they specialized in neurology, psychiatry, or rehabilitation. In the United States, only a handful of doctors and other professionals are experts on how to fix TBI. You probably don’t have any in your home town. Your best bet is to learn how to do the fix yourself, and to get your family to help.

It’s a good thing I’ve never been that dependent on doctors. I guess my long history of TBI contrived to make me too ornery and too spacey and non-compliant, to be a good patient. Which is ironically what has saved my ass, up to a couple of years ago.

But ’round about 2007, I started down this diagnostic path, and I started to really dig into the whole medical thing with TBI and other medical issues I’ve been having. I got it in my head that I needed to give doctors what they needed to help me. But they haven’t had the willingness (the training?) to be of much help to me. Mostly, what I’ve heard from them has been “It’s just stress” or “It’s psychological” or (they don’t say this, but they imply it and their actions say it loud and clear) “You’re just trying to get attention, when there’s really nothing wrong with you.” Maddening. And my little brain has ingested that input and made my failure to get adequate medical help about me, rather than about the shortcomings of the medical system and typical medical training.

I may rail and rant about the problems with doctors, but there’s a part of me that thinks the real problem is me. I’m a bad patient. I’m a head-case. I’m not really in need of help. There are many other people who have real problems, and I need to get out of the way for them to get the help they need.

Unfortunately, after dealing with doctors for the past year and a half, I’ve gotten it into my head that being a bad patient makes me a bad person, that I’m not being helpful enough, that I’m not being “good”. But I have to seriously rethink this. And I have to say that, given my ability to recover and get on with my life, it actually saved me a whole lot of pain and suffering, to avoid the medical establishment, to not expect much from doctors and avoid them like the plague (except when absolutely necessary), and to find my own way in the world.

So far, it’s enabled me to just live my life. Which is more than I can say for how I’ve been feeling (and functioning) for the past year and a half.

6. You should not believe what anyone tells you about TBI. It has become a hot topic lately, so there are now many Web sites distributing partially accurate or even totally bogus information. Everyone claims to be an expert. If you have good sense, you won’t take what I say on faith, either. There are only a few reasonable ways to put confidence in what people tell you. The first one is the approval of professional credentialing organizations. <snip for brevity’s sake> These are major league accrediting bodies in TBI. However, there are also bogus accrediting bodies, so when you check out credentials, you also need to check out the accrediting agencies. Information is also likely to be more reliable if it has been published in a major professional journal. This manual provides you with a set of articles, chapters, and books that are expert sources for the information presented. Watch for the most important journals, such as the Journal of Head Trauma Rehabilitation and Brain Injury. Getting bad advice is awfully easy to do, and it can harm your recovery.

I’ll say! I’m starting to see more and more how lucky I am that I’ve been able to build my recovery outside of the medical/rehab context. Granted, it may have been helpful for me to realize that I had serious issues going on with me as a direct result of head injuries, but I think that not growing up with the idea that I was brain damaged did me a whole lot of good. Even though my brain was telling me everything was okay, when it wasn’t, the fact that I have grown up and moved through my adulthood with this blissfully ignorant self-confidence of mine, has worked in my favor. I haven’t been in the unfortunate position of soliciting information from charlatans and snake oil salesmen. I haven’t made myself dependent on “experts” for my strategies. I’ve been a lone wolf, for the most part, and while things have NOT been easy, I’m sure they’ve been a whole lot less hard, than if I’d been seeking out help on my own resources.

One of the big problems with TBI that I see, is that it makes it all the harder for us to seek out qualified expert help. It makes it hard for us to see what our problems are, in the first place. In order to ask for help, you need to know what exactly the problem is. That’s one of the problems with TBI and the medical establishment, from where I’m sitting — they rely on us telling them what the problem is, but if you are a TBI survivor, you may not even know what the problem is. Conundrum! So you and your doctor end up sitting there looking at each other like idiots, not sure where to begin, or even how to begin.

That’s been my experience, anyway.

So, the next problem that comes up, is that there are these charlatans and poseurs who claim to know WTF is going on with you and how to fix it. They prey on us, telling us what we want to hear, offering us what we so desperately need — “answers” of some kind about what’s going on inside our brains. They give us false hope, and/or they point us in some bogus direction, and/or they take our money, and/or they misrepresent us to insurance companies, so we can’t get coverage or additional help. And we’re screwed. Because we need help, but we don’t know how to get it. And the people who offer us the most are the ones who have the least to offer — and in fact, take away the most.

Like I said, conundrum!

7. You can get rehabilitation for TBI in almost any town in the USA, but most of it is not fully specialized. We have had effective rehabilitation in this country since 1978, and the knowledge of how to do it has spread slowly. I trained under one of designers of the original high-tech program. That approach is still the most effective method we have. If you have the $70,000, you should consider attending that program. It is located at New York University’s Rusk Institute of Rehabilitation Medicine, under the field’s founder, Dr. Yehuda Ben-Yishay. Expert programs are also offered at Barrow Neurologic Institute in Phoenix, Arizona, under Dr. George Prigatano, Robert Wood Johnson Rehabilitation Institute in Edison, New Jersey (where I trained), under Dr. Keith Cicerone, or Mount Sinai Hospital in New York, under Dr. Wayne Gordon.

This just blows my mind — as though it needs to be blown any more. We all have brains. Thousands upon thousands of people suffer brain injury each year. There are ways to fix what’s wrong. But yet, we can’t get easy access to this rehab, unless we have $70,000 and/or insurance that will cover it. Good grief. It’s so crazy and distressing, I can’t even comment on it further.

8. People who find a knowledgeable self-therapy teacher don’t always learn self-therapy. Many of them are not willing to learn. To learn self-therapy, you need to admit that you don’t know everything you need to know about your brain. Some people believe they already know themselves and reject the idea that someone else can teach them about themselves. If you believe this, self-therapy will not work for you. This guide book can help you only if you are open to learning things about yourself that you don’t already know.

Well, I am open to learning new things about myself. I am more than willing to learn. I have over 35 years of evidence that all is not right with me, and I need to make some changes. I’m not proud in this respect. I’m borderline desperate. Which makes me a pretty good candidate for this kind of work. Self-therapy is, as far as I’m concerned, just about the only viable alternative for me at this point, and I’m willing to do what needs to be done. Yes, I’ll seek out help from qualified therapists. Yes, I’ll get help from neuropsychologists. Yes, I’ll do everything I can to avail myself of the resources available to me. But at some level, I’ve got to do the work myself to fix myself. No, I’m not crazy for thinking this stuff can be fixed. It can. People do it. It’s been done. Why not me?

Indeed, why not me? I’m brain-injured, I’m in more trouble than I care to admit, I get into trouble constantly, I have plenty of head-injured moments through the course of each week, and I’m more than willing to do what needs to be done to address the situation. Most importantly, I am not prepared to live my life marginally, missing out on all the opportunities out there to learn and live and experience.

I am not prepared to be anything less than fully functional as a living, breathing, involved human being.

So, it’s time to kick it into gear and get on with the work.

Onward…

Invisible Me – The interactive dynamics of a doubly-hidden disability.

Hidden disability is an “interesting” phenomenon. On the one hand, a person can have real and serious issues with interacting with the world around them, be it due to a neurological issue or a physical one. But on the other, the rest of the world cannot see what’s going on, and because people tend to be very visual — especially when they first meet someone — and they work off visual clues to figure out how to interact with someone, if they cannot see your difficulties, they may have a hard time:

  1. believing you have something going on with you
  2. figuring out how to interact with you effectively

I have heard of an individual who was legally deaf — couldn’t hear a thing — but had become so adept at reading lips, nobody believed they were deaf when they first met them. And stories abound about people who are autistic or have some learning differences, who are not recognized as having difficulties by the mainstream, and so cannot get the help they need.

Having a brain injury can be about the most extreme form of hidden disability I can think of — and that’s not just because I’ve had ’em. Think about it — the brain is something we ALL take for granted. It’s perhaps(?) THE most important organ in the body, when it comes to regular functioning. Yes, you need properly functioning lungs and heart and other internal organs to stay alive. But the brain is what pulls it all together and keeps us off life-support and a (semi)vegetative state.

Our brain is what makes us human, in my own estimation.

And yet, we know so little about it. I’m dumbfounded by the degree of ignorance that prevails about how our brain works and what it does. We all have one, we all rely on it, we all use it constantly. Yet, how many of us truly understand our own brain? And how many of us are prepared and equipped to explore its inner workings? It just amazes me, that we don’t know more about it, in this age of digital imaging and info gathering. We can collect moon dust and photograph stars and new planets in distant galaxies, but we don’t know how our friggin’ brain works? What’s up with that?!

Anyway, I’ll redirect my outrage, now…  Hmmm… what would be a more productive use of my energy? I know — I’ll get back on topic! 😉

Anyway, when the brain starts to malfunction — especially after a relatively long time of behaving normally — things can get very difficult, both inside and outside. The rest of the world can’t necessarily see that you’ve got hurdles to cross in your daily life — cognitive issues, physiological issues, emotional issues… And when you slip up, people can be pretty hard on you. If they can see that you’ve got a limp or you’ve lost an arm, they can adjust their interaction with you (tho’ lots of people don’t do a very good job of adjusting in a positive way, and some mean-spirited people just use that as an invitation to be cruel or ignorant). But if they can’t see you’ve got issues, then your interactions with them can become… well, problematic.

Now, let’s add to that mix some of the interior problems that come with having an impaired brain.

Take, for example, the condition called “anosognosia“. This really fascinating condition is literally not knowing that there is something wrong with you. The injured brain doesn’t register that there are difficulties in its experience. It won’t realize that, for example, the left side of the body is not moving, that you’re not taking care of one side of yourself, that you cannot do certain things, that your judgment is impaired… all sorts of things can slip through the cracks of an injured brain that’s “anosognosic” (I think that’s how you’d describe it). It’s a pretty common, but not very well-understood condition that some people are studying and have written about. One of the folks I’m a real fan of is George Prigatano, M.D., who (I believe) works out of the Barrow Neurological Institute in Arizona. He’s written a fair amount about anosognosia, and I really like his style. He also seems like a decent fellow — from his photo and his writing style. (Then again, as with most things, I could be wrong — my brain could be playing tricks on me)

So, when your own disability is hidden even from you, it can make things really interesting… frustrating… confounding… infuriating… confusing… amusing… hazardous… adventurous… you name it. With brain injuries, everybody in the mix can be at a loss about what’s going on with you, and how best to handle things.

I’m thinking in particular about many conversations I’ve had with people over the course of my life that went very badly due to my penchant for confabulation. Confabulation is when you get the details of a story wrong, when you think you’re getting it right. You think you’re being 100% accurate, but you’re actually missing important details, getting them turned around, or whatever. I would be talking to someone and I would get the facts and figures turned around — like times I was at a place… or things I did… or people I saw… or the progression of events. I would get so turned around, without even knowing it, and by the end of the conversation, I sounded like I was either a pathological liar, a fabulist, or I was trying to impress them with bogus information.

All I wanted to do, was relate an interesting story or tidbit, and I ended up looking like an idiot.

Now, until about a year ago, I had no clue that the head traumas I’ve experienced over the course of my life had affected me the way they had. I didn’t realize A) that I had issues, and B) why that could be. I figured I just wasn’t trying hard enough to think things through, and I really beat myself up over this stuff a lot. No one else realized that I sustained multiple tbi’s, either — it wasn’t something I talked about, and it wasn’t something I thought was worth mentioning. And no one around me seemed to realize that my confabulation issues were possibly neurological, and not character-flaw-based.

So everyone in the mix — myself and others — went around with the belief that I had trouble telling the truth at times. And that’s a hard thing to bear. Especially when you don’t mean to mis-speak.

Yes, the doubly-hidden disability of brain injury can complicate things in so many logistical ways, when it comes to interacting with a world that cannot see the problems you’re having… and you yourself cannot tell what the problem is (if you can even tell there is a problem).

In my case, my problems are often not obvious to everyone around me. I they “seem fine” but I’m not processing information as fast as everyone around me. I tend to think visually, using pictures and “little movies” of past experiences to understand what’s going on around me. And that visual processing — while it’s more in-depth and full-spectrum than purely verbal thinking for me — takes longer than just thinking in worlds. Or I might be having trouble with sensory processing — when I’m not able to tolerate the lights/sounds/smells or other stimuli that everyone else is fine with, and I can experience a lot of distress that others cannot relate to because they just don’t have that experience. If you have light sensitivity or you’ve got high tactile defensiveness, you know what I’m talking about. If you seize when you hear certain sounds or smell certain things, you now what I’m talking about. But most of the neurotypical world, which isn’t subject to such disruptive experiences, may not be able to fully grasp what it’s like, which makes it hard to figure out how to relate to someone like me.

But how does it look?

I’ve been thinking hard about how to express the dynamics that take place between a person with hidden disabilities interacts with the ‘normal’ world. A picture’s worth lots and lots of words, so I’ll try to illustrate. Using my own experience as a guideline, here’s how I conceptualize my own situation:
invisible me - I'm on my own

I’ve got all these different internal parts of me that are unique to me and that take up space in me. They aren’t ALL there is to me, but they are significant parts. Things like mood volatility (lability). Things like slowed mental processing speed. Things like non-verbal social communication preference and difficulty decoding auditory input. Things like not being able to take a lot of noise and light. Things like needing to rest more than most people I know. They’re not bad things, per se. They just are. But they do make up a substantial part of me.

Now…

Enter the world…

invisible me - the rest of the world shows up

People around me have a different “color” to them, a different “shape” to their lives. They seem different to me, and while I recognize them and relate to them as other forms in the world, they are definitely different than me. Of course, everyone outside of me, being “shaded” they way they are, with their own “hues” of perception, have plenty in common with others, but they don’t always realize that I’m not like them.

And so they tend to encroach on me…

invisible me - the rest of the world encroaches on me

I don’t think they necessarily mean to encroach on me and impose their own specific sensibilities on me, but that’s what they do. I think that’s what most regular people do with everyone they meet. People need to feel included. They need to feel like they’re part of something. They need to feel a connection with others. There’s nothing wrong with that — it’s one of the things that makes us human, and it’s good. But a lot of times, in their intention to include others in their circles, they jump to conclusions about how other people are — how they should be — how they can be. How I should/can be.

They make a lot of assumptions about who I am and what matters to me, and what I want to do with my time and my attention. They tend to impose their views on me, thinking that I’m just like everyone else. What they don’t see, is that the shapes that make up my inner life are not shaded like theirs with the same hues. I am a “different color” than them, but because I don’t have the same hue as they, my own personal “flavor” of personality is invisible. And they don’t realize I’m not like them at all.

But I do.

And sometimes I need to “take my space” and carve out a piece of the world that is mine, all mine.

invisible me - I carve out my space and say what isn't me

I am often so busy trying to decode the sensations and stimuli and hidden clues of the world around me, that things like politics and economics and gossip and star-studded newscasts are either too much for me to take, or they’re so extraneous and irrelevant to my daily functioning, that they’re an annoyance at best and a draining distraction at worst.

I just have to block it all out, to remember who I am, and keep on top of my processing and functional difficulties… to just maintain a daily way of life without becoming completely exhausted and depleted, and then screw up my life all over again.

So, sometimes, I have to just come right out and tell people, “I don’t understand a word you’re saying.”

Or… “I would like to join you for drinks after work, but I’m exhausted. Yes, I know it’s only Thursday, but I’m really beat.”

Or… “I know you’re really excited about seeing that movie on opening night, but I can’t take being in a crowd of people waiting in line for tickets… and then being in a closed dark space with lots of different smells and sounds for hours on end.”

Or… “I have absolutely no interest in what you’re discussing. I really don’t care about American Idol, I really don’t care who gets voted off the island, I really don’t care about someone’s clothes, I really don’t care about their hair. I don’t care who is best-dressed and who is worst-dressed.”

Of course, this doesn’t always sit well with the rest of the world.

Sometimes people react with surprise. Sometimes they react with offense. Sometimes they’re amused and have to admit they secretly agree with me. But whatever their reaction, I can tell that it sets me apart from them.

invisible me - the rest of the world gets pissed off at me

Regular people who aren’t dealing with disability, I’ve found, sometimes really dislike being told that their pet peeves and attachments are not essential to me.

They may feel invalidated, and they don’t like being invalidated.

They don’t like being excluded from the world of others — from my world. They want to interact with me, but I just can’t…

They don’t like feeling dismissed, and sometimes when I brush them off they seem to feel that way. They don’t realize that I just don’t have the bandwidth to be interacting with them the way they need me to.

And some especially insecure folks really dislike having it brought to their attention that they are not necessarily in the right all the time, and some people have other things to think about, than all the stuff we’re fed on a regular basis through the news and media.

So, people tend to get mad at me. They get upset that I’m not validating their fears and insecurities. They get upset that I’m not participating in their conversations. They get tweaked that I’ve got other things to think about than American Idol and Survivor and the Atkins Diet. They can’t see why I don’t compliment their car or their clothes or their job title.

It’s not that I don’t want to — well, sometimes I don’t — it’s that I am trying to keep myself stable in a world that constantly bombards me with all sorts of stimuli that I have a really hard time managing. People look at me and think, “They’re so together… they’re so mellow and calm and intelligent and thoughtful… ” And they interact with me as though I had everything together, because they cannot see the frayed wiring in my brain, they cannot detect the subtle clues that I’m having trouble with my sensory input, they cannot see the intense pain that simple contact with my clothing causes me. They cannot see the pain in my head that never, ever goes away.

They have no way of knowing what difficulties I’m having, and if they did, it would probably freak them out. If people knew half of what my daily experience is like, I suspect they would weep. I’ve done my share of weeping, but it’s not the most productive use of my time. I have a life to live.

And so I capitulate.

For the sake of navigating the seas of social interaction, I pretend to care about the details of their lives. I pretend to care about their hobbies, their travels, their children, their houses, their pets. I pretend to care about the stock market. I pretend to care about the election. I feign interest in their lives. I mirror their statement with carefully re-phrased repetitions of what they say to me.

invisible me - what happens when I cave to the pressure

It’s actually quite easy to do — all you have to do, when someone says something to you, is repeat it back to them in a different words, with a “punch” of positive emotion that validates them and makes them think you’re on the same wavelength as them.

Case in point:

Guy on the street says, “Hey – did you see the game the other night?”

I say, “No, but I heard about it.” (which is true, because he just mentioned it)

Guy on the street says, “The team is doing great this year!”

I say, “You bet! They’re kickin’ ass!”

Guy on the street says, “We’re going all the way! Can you feel it?!”

I say, “Go Pats!!/Go Lions!!/Go Bears!!” or “Go ________ (whatever team) is local!!!” and I give it a real punch, to make him think I’m totally on board.

Guy on the street goes his own way, feeling like he’s just had a personal exchange with another fan, and I go my own way, having had a successful interaction with someone who needed to connect with someone.

I don’t do it to deceive people. I do it to let them feel like they’re participating in my life. In some cases — especially if the interaction feels a little edgy or dangerous — I do it to assuage them, to pacify them, to make them think I agree with them, when to disagree might result in an argument — an argument that I cannot and will not win, and which may get me in trouble.

It’s not 100% socially accurate, but it works. They’re happy, I’m off the hook.

But in a more in-depth relationship, in my closer friendships and intimate connections, following this strategy compromises the parts of me that are true to me. It’s one thing, to have a casual conversation with people on the street whom I’ll never see again. But in my real life, in my deeper life, in my genuine life, this strategy just works against me, and I lose out.

When I “act the part” that other people expect of me, the parts of me that need special attention, the parts of me that are different and unusual and full of nuance, can get blurred and full of noise. And the parts of others that I try to emulate, as I’m pretending they’re part of me, are just blurred and full of noise

Ultimately, in the end, who is truly served by my attempts at simulating normalcy? In the outside world, it may serve to keep me safe and buffered from the dangers that come from being radically different and deeply defenseless. But in my real life, the up-close-and-personal sides of me, all that is achieved is that the folks around me who cannot — will not — recognize my differences, are placated and appeased and made to feel a little less uncomfortable around me, while I am left at an internal disadvantage in the world.

What I’d really like most is this:

invisible me - what I would like most

That is, for people to recognize there are radical differences within me that prevent me from being just like everyone else… and for people to realize that every “normal” person has within them some aspects that are similar to me, that make them different from the norm. My differences do not make me a threat to others. My different information processing speeds and methodologies pose no danger to others — if anything, they actually help. And my sensory issues, while they are at times problematic and can exclude me from living a full life, heighten my abilities to detect certain details that just fly by others. My on-again-off-again coordination issues may disqualify me from professional sports, and they may cause me to knock lots of things off counters and break things I just try to pick up, but there are also lessons to be learned from slowing down and not flying around at a break-neck pace.

Ultimately, in addition to my accommodating the rest of the world by adapting myself (however superficially) to it, I would also like the “permission” and ability to carve out a space for myself in the world that is truly genuine and authentic to who and what I really am — a mild traumatic brain injury survivor whose experience is atypical and whose abilities vary from the norm. I want the right to express myself and my talents and my abilities in a way that is true to me and my essential nature. And I’d like others to find within themselves the parts of them that are not “normal” — and come to accept and integrate them as a regular part of human experience.

We all have differences, we are all varied creatures on this good earth. We all have our secrets and our hidden abilities and disabilities. My deepest hope is that we may someday create a world where all of us are able to participate in ways that make the most of our abilities and shield us from the pressures to compromise our safety and overstep our common-sense boundaries, in order to appease others or fit in with a world that cannot accept our warts along with our beauty marks.

I want a world without narrow-minded judgment… a world that has the good sense to find the best in each of us and bring that out, while forgiving us for our limitations. I want a world that cares more about its own survival, than keeping up appearances. I want something real. And I want something dignified. For all of us.

Call me crazy, but I don’t think it’s too much to ask.