no one believes me after mtbi

Yesterday someone found their way to this blog by typing in this sentence. And the other day, I fielded a comment from another TBI blogger who has been having problems getting support from her family.

I think one of the most challenging friggin’ impossible aspects of TBI, especially MTBI, is the amount of skepticism that the rest of the “neurotypical” world has towards the brain injured. Because they can’t see our injuries, they have no idea they exist. And they often flatly refuse to admit that they may exist.

Our struggles are seen as “laziness” or some other character defect. And if we really wanted to do some things, well, we should be able to, right? After all, we have free will, and where there’s a will there’s a way. Right?

Not always.

As one of my readers, M, recently commented quite eloquently, our brains are changed by the experience of injury, and it is vital for us to factor in that change, when setting post-TBI expectations. The will and indeed the whole personality is intimately tied with the brain, and when the brain changes, well, the personality and character of the survivor will, too.

It’s important to approach our changed brains with the right information, compassion, and non-judgment. If we don’t, it just makes matters worse. And no one is served.

One of the changes that can take place — which has been an ongoing challenge for me — is that the amount of information the brain takes in can be diminished. That can lead to all sorts of processing issues, with important bits of info getting dropped – or, at times in my case, never getting in at all. And when the brain has less information, but doesn’t realize it, then it can start to miscalculate without realizing it. This can lead to a condition called “confabulation”, where a person comes up with ideas and concepts that are only partly accurate, but they have no idea they don’t have the whole story. They may think they’ve got it all figured out, but they don’t. Yet they don’t even realize it, which is a problem, when it comes to dealing with other people, some of whom may know better.

I know that my own life has been marked by many, many instances of people thinking I was lying or intentionally misleading them about things I was saying, when I was simply confabulating. I was absolutely, positively, 100% certain that I had all the details right, I had the best of intentions, I was trying really hard to connect with them, and I thought for sure I was being intelligent and sensible and together… when all along, there were key pieces of information missing in what I was talking about.

I wish I could give a specific example, but I can’t think of one right now… no, wait — here’s one:

I was hanging out with my dad on a recent family trip, and I started talking about some new idea that I thought he’d really relate to. My dad’s a really heady guy and he loves to talk conceptually about stuff. Some kids talk to their dads about golf or baseball. I talk to my dad about ideas. So, wanting to really connect with him during my visit. I had this inspiration to tell him about a new concept that I’d been thinking about, over the past few months. My dad and I have had a somewhat rocky relationship — I never turned out to be the kid he wanted me to be, and he was pretty rough on me when I was young ’cause I wasn’t living up to his expectations. So, I’m always looking for some way that we can connect as adults, rather than as the standard-issue dysfunctional/disappointed parent/kid.

Anyway, I was totally psyched about having thought of this idea, and I was certain that another friend of mine (who is a lot like my dad) had told me about it. I went into all this detail about this concept, moving through it somewhat gingerly, so I didn’t miss any of the details or nuances… trying to sound halfway intelligent… getting kind of insecure, ’cause my dad was getting quiet like he always does when he’s about to correct me or criticize me… just soldiering on with this idea, trying to flesh it out and make it sound out loud like it sounded on the inside of my head.

My dad kept getting quieter and quieter, and I got more and more nervous, and I started talking really fast about how I’d heard about this idea from a friend of mine… Eventually, the conversation petered out, and my dad went off to do something else. He seemed like he was upset with me or something, but I couldn’t figure out what I’d done wrong. 43 years old, and I’m still trying to figure out why my dad is miffed at me… It’s kind of sad.

Well, long story short, after a few days, I suddenly remembered that my dad was actually the one who had told me about this concept I’d been discussing. It wasn’t my friend, it was him. He’d told me about it either on the phone, in an email, or during one of my past visits. And when I was going on and on about my friend and their ideas and the details of what “they had told me”, I was actually repeating back almost verbatim what my dad had told me about, as though I had good sense.

How humiliating. I had been so very, very wrong about some very key ideas, and yet I had been so utterly convinced that I was right. And there I was, a grown adult, still trying like crazy to win my dad’s approval, like some little kid who’s got no clue. And there my dad was, getting that same old look on his face that said, “Here they go again… what a liar… what an idiot… space cadet… dufus… dork. I can’t believe this is my kid — 43 years old, and still telling tall tales. When will they ever learn?”

Confabulation is no friggin’ fun. Especially in 20/20 hindsight.  It’s inconvenient and exasperating for others when it happens, it’s disorienting for me when I’m in the midst of it, and it’s humiliating for me, when I figure out later that it happened. I just hate it. But I’m not sure what to do about it.

I’m not sure if there’s anything to do about it, other than educate the people around me about what it’s about and how/why it happens. The only problem is, figuring out how to educate them. Because by now, after a lifetime of this foolish consistency, a lot of people who are close to me have a hard time believing me, to begin with.

How to ask for medical help

It’s only taken me 20 years, but I’ve finally figured out how to ask for help from medical folks in a way that not only lets me sound halfway intelligent, but also helps them to help me.

I had a very positive and productive interaction with an individual at a hospital the other day. I had undergone some testing a few months back that came up with inconclusive results that didn’t help explain some weirdness I’ve been experiencing most of my life. So, I need to get some more testing, but I’m not sure if my insurance will cover it. So, I had to contact this hospital to find out what billing codes they use and then call back the insurance company with the info. I didn’t have high hopes of getting very far — most of my interactions with hospitals have been tremendously frustrating for me.

But this time was different. There was no fussing. There was no confused back-and-forth. There were only questions and answers — the right questions, too — and positive results. It was so positive and productive, it left me a little speechless. This is a new experience for me — usually, I flounder and flail and can’t figure out what to say to medical folks, and then they get mad at me for not making their jobs harder. But the other day, I managed to conduct a level-headed, objective, intelligent, mature interaction with someone who actually helped me.

The things I did were so basic, so simple, I feel a little stupid talking about them. But not everyone knows how to do this — including me, for the past 20 years. Here’s what I did:

1. I identified myself with my name
2. I identified who my doctor is
3. I gave a brief overview my background — I had some tests, and I need to have more.
4. I identified the issue to solve — I have to figure out if my insurance will cover these tests.
5. I identified where I was having trouble solving this issue — my insurance company needs certain billing codes for this test
6. I identified what I needed to solve my problem — could they tell me what the billing codes were?
7. If they could help me, what were those codes?
8. If not, did they know who could tell them — and yes, I would hold.
9. I got the details from them and wrote them down
10. I repeated the details back to them for confirmation
11. I got their name and their telephone number
12. I repeated once more what they had told me and identified my next steps
13. I thanked them for their help and wished them a good day.

It sounds so simple… but until the other day, I had rarely managed to conduct any kind of conversation in this systematic a manner, and it always went poorly. I got turned around and angry, and the people I was talking to always got a bit beaten up in the process.

But the other day, that didn’t happen.

Now I know how to do this.

Magic.

Ouch

Physically, I’m in a lot of pain, these days. Ouch! Someone touched my arm the other day, and it was like they were driving a hot poker into my skin. Crazy. I hate when it happens, and the stupid thing about it is that my reaction time is slow, so I end up having a thorough pain experience, before I can pull away. How annoying.

The pain has gotten a lot worse in the last couple of weeks. I’ve been working outdoors which is great, BUT I’ve also been eating sugar and “cheap” carbs, which is such a bad idea. I really can’t make a move without some kind of pain, but I manage to keep my mind off it, so it’s not wrecking my life. Still, it might be nice to not have this stuff with me 24/7.

And then there’s that pineal cyst I’ve got. It’s a small one, but who knows what will happen with it? I think that one of the reasons that I’m just motoring along with this pain, is that I’m trying to acclimate to the constant presence of pain. Pineal cysts are notorious headache-producers, and there’s no know “fix” for it other than surgery… which I don’t want. I’d rather just live with the side-effects, I guess.

It’s not like I’m going looking for pain, but it seems to have no trouble finding me. I have headaches that do not respond to medication. Or relaxation. Or stress management techniques. I have blazing joint pain that’ s unpredictable and variable. My hands and neck and back and shoulders and knees and… well.. all of me, hurts.

Oh well. I don’t have much hope that it’s going to change anytime soon. I used to think it would, but that was 20 years ago, and I’ve sort of given up on that idea.  So I’m getting in the habit of just being functional while in pain. And coming up with other ways of addressing pain, like learning.

That helps. It keeps me interested. It keeps me alive.

So there.

Life – the best therapy of all

I’ve been checking my stats, lately, and they’ve really taken a nosedive. From 2,555 on a peak day a few weeks back, to 67 yesterday.  I’m not sure why my stats peaked over 2,000 several days in a row. A fluke, I guess. A heady one, too.

Anyway, I was getting a little bummed out about the drop, but then I looked at the weather outside and realized that it’s probably a really good sign, that people are not reading this blog. Chances are, they’re out and about, living their lives, experiencing spring, and really getting into life. That’s a good thing. In fact the fewer people who read this — who spend less and less time noodling over all this bla-bla-bla — the better the indication may be that they’re out living their lives.

And so should I. Over the past several years, I’ve spent altogether too much time inside. I’ve spent too much time being turned around. I’ve spent too much time doing… nothing. Because doing something was confusing, frightening, frustrating, and exasperating for me, and being involved in life as a regular human being was, frankly, too much for me. I’ve invested a fair amount of time, over the course of my life, trying to figure out what was “up” with me. I’ve filled countless notebooks with my journal thoughts — the other day, I just unearthed another 6 notebooks I’d put in the bottom of a drawer. I’ve written and written and written some more about what my experiences were, all the time missing some of the most central, core issues — my cognitive/behavioral problems, my physical issues, etc. And I thought I was doing myself some good, but in fact, I was doing the opposite — slowing my progress and stunting my recovery by refusing to engage with them on a practical, everyday level.

Now, it’s all very well and good for me to have some level of self-awareness.  It’s all very well and good to grasp the inner workings of my psyche. And it’s a good idea for me to be learning about my brain and how it works. But in the end, life is waiting. I can’t sit around in my house, hiding from the rest of the world. I can’t sit around contemplating my belly button for weeks, months, years on end. Well, I suppose I could, but what would be the point? I need to take what I learn inside my head, inside my journals, inside my house, and translate it all into a life outside, a life beyond, a life engaged in… life.

Because like it or not, life has a way of rehabbing us. It has a way of teaching us what we need to learn, even when we’re not paying attention. It has a way of refining us and adjusting us and remaking us, a million times over in the course of a lifetime. And when I don’t fully get involved in my own life, I miss a lot of chances to see where life is taking me — and enjoy the ride in the process.

It’s true, I do have a whole raft of issues I need to deal with each day. But don’t we all? Just ’cause my issues have showed up somewhat abruptly over the years, and they’ve thrown a wrench in my works, doesn’t mean I have to let them stop me. Plenty of people have woes and troubles and issues, and I am one of the lucky ones who has real information about what the nature of my troubles are, and I have the drive and desire to do something about them. I will do something about them, too. I AM doing something about them. I have to. I can’t sit around and wait for the insurance company to approve my request for assistance, and I can’t keep spending countless hours looking for who can help me in a timely manner. It takes me forever to do really basic things, like get on with my day. What time do I have to chase my way through a medical and insurance system that doesn’t see me on its radar, unless I go out of my way to get in their face 24/7? Like I have nothing better to do with my time, than navigate that maze that may lead nowhere, anyway?

I mean, come on… Whoever came up with this system clearly has no life of their own that they value beyond words. Else they wouldn’t expect others to sink countless hours of precious life force in hassling their way through it all.

So, I”m kind of doing a “sour grapes” thing here, telling myself that I don’t really need or want cognitive rehabilitation or occupational/speech therapy, since it seems so out of reach. But in a way, I’m also simply prioritizing my efforts — do I..

• sink the time and energy and hope and optimism into a woefully inadequate and bureaucratic system that’s seemingly designed to discourage me from seeking help in the first place, turning my schedule upside-down and wearing myself out for the questionable benefit of meeting with someone with whom I may or may not be able to communicate, and who may or may not be able to help me,

or do I

• tend to my own issues on my own, in my own way, on my own time, learning everything I can about how my brain works and what my core issues are, and how I can possibly address them with certain modifications, using my life as a great laboratory where I’m the one who designs the tests and experiments and therapies, based on what I know about myself and what I want to accomplish in the world?

Some might say I’m walking an iffy line, taking matters into my own hands, but what’s the alternative? Sit around immobilized by my difficulties? Hide in the house and never go out, ’cause I’m not sure what will happen? Keep avoiding my issues and covering them up, never confronting them head-on? That’s just not an option for me.

I do know I have certain issues I need to address. They’re all right there on my self-assessment forms — verbal aggressiveness, temper flares, emotional volatility, chronic pain, confusion, difficulty communicating, trouble sleeping, light sensitivity, sound sensitivity, possible seizures (the jury’s still out on that one, but if certain experiences I’ve had since childhood have been seizures, it would explain a whole lot), trouble reading and concentrating and learning… the list goes on. And each and every one of these things gets in my way, in one way or another, in the course of each day, so I have to deal with them.

Even if I can’t get help from another live person.

So, it’s DIY rehab time. Just because I can’t seem to connect with the right kind of trained professionals or afford to pay for their services, doesn’t mean I have to go without rehab. There are books out there I can read. And I have my self-assessments I can do on a regular basis to track my progress. I have my standards and my ideals I hold up as goals. And I can monitor my daily experiences to see how well I’m achieving those goals.

It’s a daily practice, this. And little by little, I make progress. I slowly acclimate myself to the things that make daily life difficult for me — things like textures and sensations that distract me and bother me, which I need to just get over. I also find out where I can’t expect to change my experience — when I’m overtired, it’s pretty pointless to try to acclimate my eyes to bright sunlight, because my brain is too tired to know what to do with it. I find the places where I can reasonably expect to toughen myself up, and I identify the areas where I’d best steer clear of irritants. It’s a daily process, a part of my everyday life, and it’s probably going to be this way for the rest of my born days.

And that’s fine with me. Because in the end, at least I have some understanding of where I’m at, and I can see from my self-assessments how I’m doing with it all. And all this examination and active involvement in my life actually gives me more of a connection with my own experience, and it adds meaning to it all. I have to be more involved in my own experience, and it’s actually a benefit to me.

Now, even if I hadn’t had all those MTBIs over the years, I’d probably still be into this. Because I’m fond of making sense of it all — even the senseless stuff. Having head injuries has NOT been “the best thing that ever happened to me”. It has sucked. Big time. But in the end, the practices that my little brain require in order to just get on with it, do have a deeper benefit and meaning, than pure functionality. In the end, there is depth and breadth and wonder to it all.

There is mystery in the mechanics. And that’s what keeps me interested, as well as occupied.

An answer right under my nose

Crazy me… Here I sit in my study, periodically looking up at my calendar, now and then, to remind myself what the date is… I have a “zen art” calendar that has pictures and sayings on it, and I have tended to contemplate those sayings to help keep me on track. But in the past month, for some strange reason, I haven’t looked that closely at the saying on my calendar.

It is:

So whatever you do, just do it, without expecting anyone’s help. Don’t spoil your effort by seeking for shelter. Protect yourself and grow upright to the sky; that is all.

Yeah, that.

Just the answer I’ve needed over the past months, as I’ve been struggling with my brain’s limitations. Hidden disabilities… Invisible problems… Issues that I never had to worry about before… Difficulties others do not know I have and don’t expect me to have… Falling behind and forgetting to keep on top of myself and my activities and my state of mind and heart and soul, not to mention body… I’ve hassled and hassled over a lot of stuff, especially as it’s become more and more apparent to me.

I’ve been getting some help from folks along the way who supported me the best way they knew how — by offering me their sympathies and lending me their ear. And it’s helped to know my difficulties were not only in my head, and that someone else could recognize them and offer me encouragement — as well as correction.

But I had a revelation while I was out working in my yard this morning. I was raking up deadfall from the winter, spreading organic fertilizer (it’s dried chicken manure, but ‘organic fertilizer’ sounds so much more glamorous) on my grass, and uncovering the shoots and leaves of tiny plants looking for the sun, and it occurred to me that something was shifting with me. Something was changing. Along with spring. Along with this new job I have. Along with all the changes going on in the world. Something in me had shifted.

Suddenly, I felt ready to fight on.

Maybe it was watching HBO’s special PACQUIAO/HATTON 24/7, last night, which follows two boxers training and living their lives, leading up to their boxing match next month that reminded me what I fighter I really am. Maybe it was seeing the “old dawgs” who had been fighters and were now trainers, who were living their lives just as they were, pugilistic damage notwithstanding. Maybe it was watching the training, seeing the fighters and all the others around them going through the motions of preparing for the face-off.

Maybe it was the last three weeks I’ve had on the job, finding out just how much harder I have to work at this learning business. Maybe it was figuring out (yet again) that I need to not focus just on job security, but on employment security, and not let the political scene at work distract me from my skill-building and practice. Maybe it was getting to a point at work, where the folks I work with, side-by-side each day are starting to include me in their conversations. Maybe it was being told that my contract may be up sooner than I expected, so I may have to go out looking for a new job, sooner rather than later.

Maybe it was the unseasonally hot spring morning. And the mayflies swarming me. And the physical labor of raking and lifting and hauling and pushing and wheeling. And the stink of chicken manure dust on my jeans and the sweat streaming down my back. And the realization that I haven’t taken nearly as good care of my house and my yard, as I should in the past few years, and that sustaining a mild TBI that threw me for a loop is no longer a viable excuse, now that I know about it, I know about my issues, and I am able to do something about them.

Maybe it was the acceptance of the fact that I’m probably going to be really, really tired much of the time I’m awake… and reaching a conscious decision to just learn to live with that and not let it stop me. I want to live my life. I want to have a full and complete life, and I’m not going to get that lying in bed. I am usually fatigued. Even if I do take two-hour naps on my days I’m at home, I am once again fatigued in a matter of hours after I wake up. That’s just how it is. Of course, I need to not endanger myself in the process and end up asleep at the wheel or convulsing with stress/exhaustion-induced seizures, but underlying fatigue is something I’ll likely just have to live with, the rest of my born days.

The headaches and general body pains and joint issues and ringing in my ears will likely be with me the rest of my born days, too. Nobody I’ve talked to has been able to figure them out or give me anything to ease them, and I just don’t have time to accommodate modern medicine’s enthusiastic cluelessness and get on with my life. None of my doctors have time for me. They literally don’t. They won’t take more than 20-30 minutes talking to me, and they sure as heck aren’t going to invest more time in understanding my underlying condition(s) from a wholistic standpoint. That’s not their thing, and I can no sooner expect them to change their ways, than I can expect the deer to stop eating my shrubbery towards the end of a deeply harsh winter.

I’m perfectly capable of functioning, even if I’m exhausted. And have a blazing headache. And creak and groan with every movement. And am having trouble keeping my balance. And can barely hear what’s going on around me for the whining roar in my ers. Heck, I’ve been doing it for years — and a lot longer than since my fall in 2004. I’ve been dog-tired, hounded by auditory static, and wracked by pain and for years. And yet I fight on.

Yes, I fight on. It’s what I do. It’s who I am. It’s what I’m about. I have friends who are all into peace and love, and that’s fine. I value their friendship, and they’re good people. But I’m a fighter. And while peace and love are wonderful, I’m not the kind of person who lets the absence of peace and love just stop me. If I did, I wouldn’t be where I am today. And I wouldn’t have been out today, working on my yard and my house on my day off work. I might have been out and about, but I would have been working on something that was the property of someone else. And probably feeling pretty sorry for myself, too.

Working up a sweat today, I realized that in the past several weeks — especially in the past few days — I’ve cycled around again to a point where I am looking less and less for sympathy regarding my condition; less and less, I am seeking assistance from others. Less and less, I’m asking my partner to pick up slack for me. Less and less, I’m looking to my co-workers to cut me slack. Less and less, I’m expecting my job to be secure and my work situation to be ideal. Less and less, I am in need of perfection — or accommodation, in order to succeed.

More and more, I’m looking more within for what I need. More and more, I am starting to look within for my own resources to see where and how I can help myself. More and more, I’m “giving up” on the medical establishment in a fairly good-natured way, allowing them their limitations, while not letting them hold me back or get me down. More and more, I’m just buckling down and doing the job in front of me, and it feels pretty good.

Now, on and off for about a year, I’ve been on a kind of quest to find out what issues I have and figure out what they mean to me. It’s been disconcerting and upsetting and unsettling to find out that in some ways I’m a lot worse off than I ever guessed. And it’s put me in a more vulnerable place than I care to be. I’ve been learning to reach out and ask for help. I’m also learning to see where and when I actually need help. That might not seem like such a huge deal, but for me it is.

But I have to say that trying to get others to help me is a bit of a losing proposition for me. I have a heck of a time articulating what I need, and frankly, I’d rather do a lot of things myself, than look to others. I have a hard time not only figuring out what I need from others, but also telling them what that is. And then I have an even harder time making sure they get it right. It’s just not where my skills lie.

And seeking for shelter in the face of adversity is also not in my nature. The “shelter” that others offer me is all too often not suited to me — it treats me like a victim, a hapless individual who has been acted-upon, rather than someone who acts upon my world. I have tried to find shelter with friends and therapists and family members and co-workers for much of the past year, and it’s just not working anymore. Not anymore.

So, I’m sorta kinda giving up on that. Doing for myself is really my first nature, and I need to get back to that. Blazing a trail through the jungles of my life is also innately me, and I need to get back to doing that with gusto. Yes, I have sustained multiple mild traumatic brain injuries over the course of my life. Yes, my difficulties have wreaked havoc with a lot of aspects of my life. Yes, things that others find really easy are very difficult for me, and things that others find difficult are quite easy for me. I’m at odds with the world. Always have been, most likely always will be.

And I’m okay with it. It’s just who I am. And I’ve been separated from that truth about myself for too long.

Now, I’m doing something about that. I’m getting back to just being who and what I am. I’m getting back to doing by just doing, rather than noodling everything through, up-down-left-right-inside-out, and mucking it all up in the process. I’m getting back to being okay in some ways and not-okay in others, and allowing that to be what is. I’m getting back to doing what I do, exactly the way I do it, and just letting myself be.

So whatever I do, I’ll just do it, without expecting anyone’s help. I won’t spoil my effort by seeking for shelter. I’ll protect myself and grow upright to the sky; that is all.

Yeah, that.

A beautiful day to pace myself

Well, I’m happy to report, this day is off to a really good start!

First off, I was able to sleep past 7:00 this morning! I can’t remember the last time that happened, even on a weekend. I took some L-Tryptophan last night, even though I was exhausted. I’ve used it in the past to help me sleep, but it didn’t seem to do much for me. I tried it again last night, and lo and behold, the first time I looked at the clock this a.m., it was 7:20, not 5:20. What a change!

Second, I have a lot to do today, but I have a good handle on what needs to get done. I have a bunch of chores I need to take care of, but I’ve figured out that I can do most, if not all of them, in the space of an hour or two, each. That will leave me more than enough time to:

• rake the lawn and seed it
• clean up dead leaves from last fall
• clear out my garden spaces
• take the trash to the dump
• go for a walk in the woods
• take a nap
• work on some job stuff that is still outstanding
• read up on my technology stuff and play with it a bit
• take another nap
• write a little bit
• do more work on my job skills

It might sound like a lot to do, and it is. If I devote an hour to each of these activities, plus a little extra rest time before and after, it will take me through to supper time, and then I can relax, fix the meal, and watch a movie before I head to bed at a decent hour.

The key to doing this well is only doing each activity for an hour or so. I have to pace myself, because all these things really need to be done — they’re overdue, in fact. So, I’ll make hay while the sun shines and do what I can, an hour at a time. Even less, if I can.

I’m learning to really hold myself to shorter bursts of energy for important tasks. I’m finding that I’m better able to get things done, if I don’t leave myself a lot of “breathing room” to do it. I need to focus myself intently on what I’m doing, in order to get it done. I can’t do what I used to — just leave myself wide open spans of time to do this, that and the other thing as the spirit moves me. That used to be the only way I could get anything done. But that was 10-20 years ago. Nowadays, my brain is different than it used to be, and I need to sit down with myself ahead of time, think things through, get clear on my priorities, and then move through them briskly, not getting mired in details and ending up drifting far and wide beyond what I’m supposed to be doing.

I must keep myself from wearing myself out on one activity alone. I must keep myself from becoming confused and frustrated when I drift off-course. I have to hold myself to what I planned to do, and keep my “contracts” with myself about what I will (and will not) do.

I can get all this done. And I can have a good time doing it. If I stick with my schedule and track my progress, it can all work out.

Moment by moment – on mindfulness and TBI

About a year ago, I had a conversation with a friend who was wondering aloud how I manage to get through life with the deficits I described to them. I had just finished telling them about my memory problems, my cognitive processing problems, my physical problems, the troubles I had when I was a kid… I didn’t hold back, but just let it all hang out. And when all was said and done, it was a lot to process, even for me (who’s been living with all that for as long as I can remember).

One of their first questions, when I’d finished, was how the hell I managed to get through life? How did I do it every day? How did I manage to make it through so many “regular” situations… not only adequately, but in fact better than many? For years, I’ve worked in high-stress, high-pressure environments that have one crisis after another. For decades, I’ve experienced job changes, moves from one part of the country to another, serious health problems that felled family members, deaths of close relatives, career insecurities, near-eviction… How did I manage to keep it all together, and actually look even more functional than others, who have not had brain injuries?

It sounded a little hokey when I said, it but the first words out of my mouth were, “Mindfulness. I just pay really, really close attention to each moment as it comes.”

At the time, I wasn’t sure that was really 100% accurate. And when I thought about it, over the coming weeks and months, I came up with a whole bunch of other ideas for how I get by:

• mimicking others who seem to have it all together
• being silent instead of speaking up and showing my limitations
• hanging with good people who care about me and can help me
• learning to ask for help in ways that don’t make me look stupid
• learning to be stoic under any given situation, and then falling apart when I’m out of sight of others

The list goes on, of course, and the more I think about it, the more coping strategies I can come up with.

But once I got tired of thinking how else I manage to get by, I came back to my original thought, which was correct:

I get by in the world, head injuries and all, by paying really, really close attention to each moment, and living the very best that I can in that moment.

Throughout the course of each day, countless situations arise which enable me to learn more about myself and be true to that moment.

People approach me for help or input. I can choose to pay attention to them, really get what they’re saying to me, and respond to the best of my ability… Or I can pretend to listen to them, brush them off, and go back to what I was doing before.

People interact with me in stores and public places and at work. I can choose to be pleasant and polite to them, or I can be rude and impatient and make them sorry they ever met me.

Opportunities arise to make choices that will change the direction of my day. Will I dress up for work, or will I dress down? Will I take back roads to work, or will I take the freeway, or will I take the train? Will I slow down when the traffic light turns yellow, or will I speed up?

Every single choice I make through the course of each day has the potential to change my course in good ways or bad. And every action I take is both informed by my neurological profile and affects my personal relationship with my brain. It’s a two-way street. I have to both factor in the issues I have with my broken brain when I decide how to act… and deal with how my perception of myself alters, based on the outcomes of what I chose to do before.   If I neglect the former — e.g., don’t bother to remember that fatigue is a huge issue for me, and it’s impacting my ability to think and coordinate my movements — then the latter can suffer — e.g., I’ll get really down on myself for being dumb or dense or uncoordinated. Even though I know I’m somewhat impaired, I still get down on myself for doing/saying/choosing things that were better left alone. And that takes a toll… like water dripping on a rock and eventually eroding a virtual Grand Canyon through my self-esteem.

Mindfulness matters with me. Perhaps moreso with me than with other folks who are neurologically normal. Because if I want to live my life to the best of my ability, I don’t have a choice, but to force myself to be mindful. When I’m racing through my days, not paying attention to my limitations, not being mindful of where I am and what I’m doing, unfortunate things tend to happen. I rub people the wrong way. I say things I shouldn’t. I get pulled over by cops. I bump into hard/sharp objects and bruise myself. I get snarky with authority figures and alienate my supporters. I tend to end up in hot water, and then I feel just awful. I start to doubt myself. And when I doubt myself and my self-confidence takes a hit, I have a harder time just living my life later on.  Even the most basic activities can become a difficult chore, when my self-confidence has taken a hit… they’re hard enough, as it is, without the added burden of screwed-up self-confidence.

But when I slow down and focus on the present moment… When I’m totally involved — to the best of my ability — in what I’m doing, what someone is saying to me, what is happening around me… When I manage to block out everything else around me and focus wholly on what’s right there in front of me, magic happens. I become involved in my own life. I am able to see, feel, hear, and experience all-round the situation that has presented itself to me. When I can manage to stop the rest of the world from intruding, and I can slow down the action enough to devote my full attention to what’s going on in that moment, at that specific place in time, I can turn the full force of my abilities towards it, and be true to it.

Now, looking around at websites about mindfulness, I’m finding a lot of mystical stuff. Enlightenment stuff. Claims that mindfulness is the path to Buddha-hood. A cure for psychological ills. A cure for the soul. I don’t know about all that. I think that mindfulness is certainly a key part of becoming a fully conscious individual. But in my case, mindfulness isn’t something optional that I add to a personal spiritual practice for the sake of additional help. It’s a central and esential part of my day-to-day coping strategies, without which I’d be totally sunk. If enlightenment comes along with it, then great. But I’ll settle for basic functionality.

And that’s exactly what it offers me. Because when I’m not paying attention, when I’m not cognizant of the fact that I’m overly tired, when I’m ignoring the fact that I’m getting more and more agitated, bad things happen. I lose my cool. And when I lose my cool, I blow up. When I blow up, I say things I don’t want to be saying. I say things I don’t really mean. I break things. I throw things.  I flip. Trust me, it’s not pretty. And people close to me are occasionally afraid of me, which does not feel good. Ultimately, I start to close down, shut people out, stop communicating with them, start to get down on myself… and I slide down in that sinking spiral… sometimes into total and utter despair. The cost to myself and those around me is very high, when I’m not being mindful and paying attention to what’s going on with me.

But when I am paying attention and I’m aware of where I am and what’s going on with me, I can manage my limitations. I can see that I’m tired, and take a nap. I can see that I’m not following what someone is saying to me and either ask them to clarify or make a note (a real note on paper, ’cause I’ll forget mental notes). I can tell that my attention is wandering and bring myself back to the moment. I can see that I’m starting to lose my cool for no good reason and physically remove myself from the situation – walk away or even run, do something different, or just stop talking. I can prevent myself from going off the deep end and overreacting to what others are doing and saying. Just reminding myself that I’m  being “very TBI” at the moment chills me out. I can remind myself that my brain is misbehaving and I’m probably getting overwrought for no good reason. And I can stop the downward slide before it starts.

I cannot even begin to say how important this is. For myself, and for everyone around me. It means the difference between being a good partner and being a vexation (and sometimes a threat) to the ones I love. It means the difference between having a conversation and having a fight. It means the difference between finishing a thought and taking a definitive action, and getting mired in bogus details that keep me from going anywhere. It means the difference between being a TBI victim and a TBI survivor.

Mindfulness is not just an optional practice for me. It’s not something I can do now and then, when the spirit moves me or I’m in a meditation session. It’s something I absolutely positively must do all the time, in order to meet the most basic requirements in my life.

The beauty part is, because mindfulness is such a powerful practice outside of basic coping, it enables me to do the most basic things with tremendous focus and energy. Taking one small thing at a time, focusing fully on one moment at a time, allows me to use the full range of my abilities on that thing, in that moment.

And in so doing, my life becomes more than just a series of limitations to be dealt with. It becomes more than just a sequence of chores and tasks and obligations. It becomes more than work, work, and more work. My life — through mindfulness — becomes a form of worship. It becomes art.

Brian Scalabrine keeps his head up

Great article at the Boston Herald… check it out

Brian Scalabrine has optimism in his blood. The Celtics forward is to positive thinking what Paul Newman was to acting and salad dressing – synonymous with the concept.

So when Scalabrine was diagnosed with post-concussion syndrome after suffering, in a horrible quirk, three concussions in a month midway through the season, he only thought about his return.

“I don’t feel he ever got down and out,” said his wife, Kristen Scalabrine. “He’s taken perspective of what he needs to do to heal. He wants nothing more than to be out on the floor. But I think he’s taking it all in stride.”

Read the whole article here…

Basta with the credit lectures!

Here’s a somewhat rambling end-of-day post about something that’s near and dear to my heart — credit cards!

Lately, it seems like I can’t turn on my radio without hearing someone offering help for credit-strapped consumers. Let the record show that my own credit  card debt load far exceeds what the recommended amount is. And there is no way I’m going to pay it off in a year. I don’t care what kind of magical schemes they’re selling. I’m not going to come up with half my annual salary to pay off those balances.

Now (and I apologize in advance for my snarkiness), the popular response to carrying that much credit card debt is a well-conditioned horror. Everyone – from my parents (I quit telling them how much I make and how much I owe about 10 years ago), to the government, to my bank, to my peers, to strangers I stand next to at the post office – is avidly anti-credit-card-debt. Who isn’t? Paying up to 29% APR to people who are prone to cut your available credit without warning and just ’cause they can really sucks.

And our current popular culture is chock-full of gurus, financial “advisors” and online/broadcast marketers who are telling us in no uncertain terms that we need to be credit-free. For the sake of our savings. For the sake of our peace of mind. For the sake of our children (that’s always a compelling reason). For the sake of our retirement. And for three low installments of $129.95 (plus shipping and handling), they’ll tell us just how we can do that in less than a year!

But I’ve had it with all the personal finance pomposity. I’m sick and tired of all those “money people” lecturing me about how bad credit cards are, how much they threaten my safety, how zealouslyI should avoid them. I’m sick and tired of people who supposedly know all about money (and many of them do, because they have an awful lot of it) telling me how I should handle mine. I don’t have an awful lot of it, and I sincerely doubt I ever will — being RICH is just not that big of a priority with me, and any extra money I have, I tend to give away to organizations that are defending the defenseless or spend on occasional vacations and computer stuff… and my house. I’m tired of people who operate at higher financial levels thinking that their rules apply to me, down here in the “pedestrian zone” of personal finance. I’m sick of people preaching budget-budget-budget, as though anal-retentively socking away $25 a week is going to dramatically impact my long-term prospects.

I’ve got news for those folks – in case they hadn’t realized it by now – people like me don’t live by the same rules that people like them do. If they haven’t gotten that simple fact through their thick skulls, either their math isn’t nearly as good as mine – which is frightening – or they don’t have a clue how people like me really live, or they are actively concealing the truth about money management, so they can sell little shreds of hope to those of us whom they assume know precious little… after all, if we were that knowledgeable and smart, we’d be rich like them, right?

Anyway, even if I did put away $25/week for 52 weeks a year, I would save $1,300, which is nothing to sneeze at. And if I earn 5.5% on this amount (compounded monthly) like I do on my ING Direct savings account, after a year I would have $1,336.38. Not bad – that’s the magic of compounding, where every month your total balance (including interest) gets compounded.

But let’s remember, that’s a little over $100/month I’d be putting away. And in these tight times, there are about 1,336 other places I can think to put that money. And like the trickles of water that carved out the Grand Canyon, those places and reasons have a way of seriously eroding my savings. Or it can take just one or two ill-fated twists — like car repairs after being rear-ended in holiday traffic, or veterinarian bills when one of my pets gets in a fight with a stray animal or falls ill.

Now, if I want to be a little more modest — and realistic — and calculate for $25/month, at the end of a year at 5.5% compounded monthly, I’ll have $308.74 in the bank. Great. That should just barely cover the emergency dental work I need that my insurance doesn’t cover.

Note: I used the savings calculator over at Bankrate.com for these calculations.

There are countless sudden low-scale financial crises that can crop up over the course of a year, which are unpredictable, unavoidable, and immediate. Indeed, there have been more sudden extreme needs for cold, hard cash that have cropped up in my life on a regular basis over the past 20 years. Many an event has been as extreme as it has been sudden and unexpected. Car accidents. Medical and dental emergencies. Getting laid off. Health-related relocations to cleaner and safer parts of the country. Family crises that require immediate travel. Veterinary bills. You name it, I’ve probably whipped out the plastic to pay for it.

Never were these events foreseen. Many of them might have looked predictable to the trained eye, but trust me, if I’d been able to see ahead and take steps to avoid them, I most certainly would have. Unfortunately, being human and all, and living in a country that simultaneously doesn’t favor paying a living wage and demands that we all “play our part” as active consumers, the proverbial cards are well-stacked against me and my kind. And make no mistake, the cards are stacked. Anyone who tells you otherwise is sitting across the table from you in the dealer’s seat.

I don’t want to be a whiner and blame the rest of the world for my troubles. I’m big into personal responsibility. But at some point, the gross inequity of power and influence starts to get a little ridiculous. At every turn, the American middle and working classes are constantly prodded to buy-buy-buy… and all the while, our employers keep telling us they can’t afford to raise our pay… and we’re being lectured from every corner about how we shouldn’t borrow more than we earn. It’s a recipe for disaster, mental illness, systemic infrastructure collapse, or all of the above.

The system truly is totally schizoid, at odds with its conflicted self, and seemingly incapable of any sort of sustainable, consistently coherent cultural message. Sure, we’re supposed to be Good Americans by being good consumers. But heaven forbid we be paid what we need to live on, or have access to adequate medical coverage for the procedures and the tests that we are assured are absolutely necessary for us to stay alive and healthy. And God forbid we charge it — or don’t charge it. If someone could tell me, once and for all, what exactly I’m supposed to do, to keep America strong with my wallet, I’d be deeply grateful.

Now, on the whole, I’m doing pretty well for myself. Credit card debt notwithstanding, I’m making decent pay. But countless other Americans are not, and that’s what tweaks me to no end. Because we are all — no matter how much money we are making — are under constant pressure, these days, to manage our money better. Money we only wish we had. Money we’re sure we had just a few weeks ago, which has mysteriously disappeared. It’s so maddening. I’ve got siblings whose whole families are working more than one job, each, and they’re struggling. It’s stupid, for such good, hard-working people to suffer so much, and live in constant fear of Losing Everything, while our lawmakers languish in Washington with their cushy benefits plans, pontificate about how to be Patriotic, and vote through legislation they haven’t even read.

What the hell can people at the bottom of the barrel do? On the one hand, our country pats us on the back for being responsibly contributing citizens by spending like crazy… while our political, social, and thought leaders keep lecturing us about doing more with what little we have, and not being such irresponsible, greedy gits. Their pulpits are the television, the internet, the radio, the bookshelves. And they just keep preaching away. Sinner, put down your credit cards! Repent! Come to your senses and lay your burden of debt down…

Indeed, there is a quasi-religious fervor to this anti-credit craze. People are spinning the mortgage lending crisis into a sort of anti-credit virtual run on banks, with all these hawkers standing at proverbial street corners shouting that The End is Nigh, and it’s all the fault of “easy credit”, so zero out your balances, bite the consumer bullet, and “live more simply so that others may simply live” (as though my doing without plastic is going to save Darfur or put roofs over the heads of homeless Katrina victims).

But it’s an overly emotional message they’re sending, and it’s at complete and total odds with the reality many of us live with — that we’re just getting by, no matter how much or little money we’re making, and even if we did rob Peter, it wouldn’t be enough to pay Paul. And then Peter would come looking for us and break our kneecaps with a lead pipe.

And as much as people love to tout the benefits of everyday budgeting and personal money management, for some of us, that level of attention to detail to our pitiful little pile of coins is unrealistic, if not impossible.Again, I don’t want to blame the rest of the world for my money woes, but I actually have had certain issues that prevented me from handling financial complexities in a sustained way. I do the best I can, and I’m learning how to do it better all the time, but back when I fell in 2004, I was about as far from being able to make wise money decisions, as a color blind person is from being able to dress models for New York Fashion Week. Sometimes, you just can’t make good money management decisions, no matter how hard you try. Especially when you’re dealing with a neurological condition that hides your own limitations from you.

Yes, some of us — perhaps more of us than care to admit it — are genuinely challenged, when it comes to handling money with facility and grace. And when I think back on all the screw-ups I’ve made about money, these gung-ho messages about dispensing with credit cards just irk me. They’re just so idealistic, so pie-in-the-sky, so insistent that credit cards can be just gotten rid of, like that.

Now, I don’t dispute that there may be some useful strategies for doing away with debt out there, but how many of them are for real? So much of the marketing is driven by raw emotion — fear – fear – more fear – I have to wonder if folks are able to truly use their heads when they take panic-instigated steps. And in the long run, might not some of those schemes to get rid of debt actually be more trouble than they’re worth? Some of the most beloved schemes involve additional mortgages on your house… and by now, most of us know where that can lead.

So, I don’t know what the answer to all of this is. All I know is, I’m in deep with Citibank, Chase, Discover, Sears, and Bank of America, and that isn’t likely to change anytime soon. I can only hope that someone somewhere on down the line I’m able to dig out from underneath these creditors of mine and keep some of my money for myself. I am very grateful that they hauled my ass out of hot water, time and time again. I’m grateful for the dental work, the prescription drugs, the veterinary services, and the emergency plane tickets they’ve all made possible. And now that they’ve managed to keep me alive and a viable member of society, I can pay my debt to them… like I pay my debts to society in general… gradually, sometimes grudgingly, but with a certain sense of duty and the hope that perhaps the resources I’m putting into them will help someone else on down the line. Someone like the customer service rep on the line who’s asking me when they can expect my next payment.

TBI Survivor Loved Ones – Don’t Put Up With Our Crap!

If you are a friend or family member or a significant other of someone who has sustained a head injury, you definitely have a unique set of challenges. Head injury is a terribly intrusive and disruptive condition to deal with — it can be extremely difficult for the survivor to deal with, and it can be utterly maddening for the people around the TBI survivor.

They got hit on the head, sure, but it wasn’t a bad injury, from what the doctor said. They weren’t even admitted to the hospital! They were foggy and groggy for a little while, but that passed. As far as anyone can tell, they should be back to normal, no problem. But all of a sudden, the person you once knew and loved — who may seem perfectly fine on the outside — is changed. Their temper is shorter. They forget things. They make stupid decisions and don’t even seem to understand how dense they’re being.

Subtle little differences can sneak in from out of the blue, and you sometimes can’t quite put your finger on it. They seem… different. You know they’re the same person they always were. But they’re not quite themself. And no matter how long you wait, no matter how patient you are, no matter how much you try to reason with them or walk them through things, they don’t seem to be getting any better.

Or, you can definitely see how they are different. They fly off the handle over nothing. They freak out over stupid things. They sleep all the time. Or they can’t seem to get to sleep or stay asleep more than 5 hours or so. They complain of constant headache. They complain of that blasted ringing in their ears. They suddenly grow aggressive, even violent, and they just “go off” for no good reason. They can’t seem to keep their act together and they keep getting in trouble with authorities – teachers, bosses, the police. Nothing anyone says seems to make a difference, and they don’t seem to learn from any of their mistakes.

For a loved one of a TBI survivor, standing by and watching someone seemingly self-destruct… or at least struggle terribly with things that used to be easy for them… must be terribly frustrating. And dealing with someone who used to be so sweet and loving, who’s now a pure terror when they’re tired or stressed, can be quite frightening. I, myself, have frightened lots of people I loved over the course of my life, due to my quick temper and a sometimes violent streak. I’ve never struck anyone I loved or lived with, but I have thrown and broken things and given people good reason to feel very afraid.

As a TBI survivor myself, I really feel strongly about what an important role loved ones can play in helping a head injury survivor not only recover from their physical injury, but rehabilitate behaviorally. True, the inside of our heads — our fragile, sensitive brain — has changed permanently, and some abilities we may never get back. Some of our cognitive challenges just can’t be helped. But when it comes to our behavioral issues, something can be done. I’m convinced of it. I’ve managed to overcome some really serious behavioral difficulties, and because of my relative success in this area, I’m able to find and hold down regular work. In this economy, you can’t put a pricetag on that capability. And most importantly, I haven’t done it alone.

Perhaps the number one TBI issue I have, is my temper. The inner storms that come up for no good reason really tear the crap out of me, at times. For the most part, I can keep my act together. 7 out of 10 times, nobody knows what a hard time I’m having dealing with something as simple and basic as dropping something or flubbing up. But it’s the 3 out of 10 times that get me in trouble. And it’s not good.

In my case, I am blessed to live with someone who is  pretty demanding. They are that way by nature — they have very high standards, and they expect people to live up to them. I have been constantly pushed and prodded over the years to improve myself as best I can, to not misbehave, to not be lazy, to not be lackadaisical, to not just give up. They have “ridden me” very hard, over the years, sometimes nagging and nagging and nagging until I thought my head was going to explode. But at the end of the day, when I did what I promised I was going to do, or I finished a job I’d started, or I’d done what I was supposed to do, or even when I’d tried and failed, the fact that they’d stayed on me turned out to be more good than bad.

Their encouragement has sometimes been gentle, sometimes strident, sometimes impatient, sometimes overly demanding. But even when they’ve been too hard on me and have given me all kind crap about things I couldn’t control – like my difficulties with remembering things, or hearing them when they were talking to me, or being slower on the uptake than they expecte me to be.

One of the things that’s made our life together more challenging over the years is that we didn’t factor in TBI in our interactions and my shortcomings. But when they started to learn more about TBI, they started to change the way they interacted with me, and they have been far more helpful than ever.

Once upon a time, they pushed and pushed and cajoled and nagged and cursed and hounded… with different levels of success. Now, they understand that patience and encouragement can go a long way. But they — and I — also know that sometimes I do need to be yelled at, in order to get my attention. Sometimes, I’m being so slow and dense, I can’t “get” what’s going on, unless it’s expressed at the top of someone’s lungs.

I don’t take the yelling personally, when situations are tight. I actually need to be yelled at. Or I’ll miss an important cue, I’ll run over that pothole, or I’ll do something that can get me hurt. The important distinction for me is that the yelling happens before an event, not afterwards, when it’s too late to do anything about it. If someone is yelling at me, because I am being dangerously slow and they’re trying to protect me, well then, please, by all means, yell at me.

For me, it’s important that people not handle me with kid gloves. My brain has been rattled a number of times over the course of my life, and in some ways, I’m really, really dense. I can’t be coddled and accommodated and treated like some victim by the people in my life.  And I also can’t be given carte blanche to just do and say whatever I damn well please, ’cause I’ve had bunch of brain injuries. It doesn’t help the people I love, to let me run roughshod over all of them. And it makes me feel terrible, when they let me do that.

Like it or not, there are sides of me that need to be disciplined, that need to be kept in check. And they need to be called what they are — unacceptable — by the people who are affected by them. Including myself. There are certain sides of me that need to be called out and stopped, before they do damage. My temper is hot and precipitous and often flares up with out my realizing how or why or that it’s in the process of happening. And when I’m going off over something that doesn’t warrant my level of rage, I need to be told to be quiet. I need to be told to calm down. I need to be told that my outburst is not appropriate, and I need to step away and calm myself down before I can be around other people. I need to be called on my crap, and I need the people around me to refuse to accommodate bad behavior.

There really is no excuse for bad behavior. There are plenty of reasons for it and my TBIs have not helped, but there’s no excuse for letting myself get out of hand and stay that way. Left unchecked and unstopped, temper tantrums, yelling fits, being snappy and course and crass and obnoxious is disruptive to everyone, hurtful to others, and it’s embarrassing to me. After all, I have to live with me, too. It’s not just about my loved ones. It’s about me having to look myself in the eye every morning when I get up. It’s about me being able to hold my head up, having self-confidence that comes from knowing I can manage my behavior, and having the pride of knowing I’m in charge of my own fate, even if my brain doesn’t always cooperate.

But I need help managing. I need help from my partner, who constantly amazes me with their patience and their intelligence and their willingness to stick with me — as well as their strength in keeping me from running roughshod over them. I need help not only with encouragement, but also being pushed to see what all I’m capable of, to see how far I can go in life, and to keep tabs on my inner situation as I go. And my partner has given me that regularly over the yeras.

Most of all, they’ve helped me by keeping me honest, by refusing to tolerate my bad behavior, my laziness, my eagerness to just give up. They have “kept on me” about so many, many things that I wanted to just let drop. They have prodded me to do right, when I wanted to just quit or do wrong. And they have flatly refused to put up with my crap, threatening many times to leave my ass if I didn’t get my act together and stop being such an a**hole.  They have told me in no uncertain terms that the tone I was taking was verbally abusive, or that I was frightening them, or I was getting out of line with my snarky comments. They have yelled at me, cussed me out, made me sleep in the guest room, refused to cook me dinner, given me the silent treatment, taken away my credit cards, and nagged-nagged-nagged me till I did what I was supposed to do, anyway. And I have never once doubted that they loved me, and they were doing all of that not because they were mean-spirited or wanted to hurt me, but because we both have standards to live up to, and they weren’t going to let me off the hook that easily.

Now, sure, there have been plenty of times when I’ve railed against their behavior. I’ve moaned and bitched and fussed over their demanding streak, and how hard on me they could be. I’ve wept bitterly and angrily over things they’ve said and done, and I’ve yelled back plenty of times. But in all honesty, I have to credit them and their unwillingness to tolerate my TBI-induced stupidity, aggression, and stinkin’ thinkin’ for much of my success.

And I also have to credit myself. Because frankly, I wouldn’t be with this person — and I wouldn’t have stuck with them for 18 years — if I didn’t have standards of my own. If I didn’t agree with them about the range of acceptable behavior, and what is and is not allowed in our marriage, I wouldn’t be able to tolerate their level of demanding-ness. Rather than finding their standards annoying and aggravating, I find them good and positive reminders of things I already know, but easily lose track of.

Of all the things that make successful TBI recovery possible for me, standards of behavior — and the enforcement of those standards — are some of the most important. Understanding that some kinds of behavior are good and allowed, while others are not, is key. Having a code to live by. Having a set of internal guidelines. Agreeing upon rules about what is and is not okay. And submitting to the discipline of being policed — both from within and without — is key.

And my partner has played a huge role in all of this. If they had been inclined to hold back and not engage with me… to be the silent suffering type who just let me go off as much as I liked, and didn’t challenge me… to put up with my crap and then go talk to friends about how hard I was to live with… to not face me down and make me behave myself — or else… to do like so many people I know, who don’t understand what’s going wrong and don’t want to make waves and piss other people off, so they do nothing besides take the brunt of their loved-ones’ anger/rage/temper/sharp tongue… If my partner had been like that, I would not be as well-off as I am today.

Now, make no mistake — my life is no bed of roses. I’m really struggling, these days, with job stuff, learning difficulties, job performance issues, and extreme fatigue. I’m almost beside myself with frustration and agitation, and I am having a hell of a time sleeping. But I have no doubt that all these things would be catastrophic for me and my career and my living situation, if I didn’t abide by very strict guidelines about what is and is not acceptable, what is and is not okay to do/say/outwardly express. If I just cut myself slack, or if I lived with someone who suffered silently while I went off on tears all the time, I probably wouldn’t be here.

I’d be in jail.

Or on the streets.

And I would be alone.

I’m not kidding, and I’m not being facetious. I don’t say any of this lightly.

So, it may sound a bit overly controlling to some, and it might sound like borderline BDSM, but discipline is one of the biggest keys to my success. I’m not advocating loved ones of TBI survivors being strident harpies who give no quarter and drive their brain-injured loved ones to the brink of madness with an unending string of impossible demands. But there is something to be said for demanding that people do/be/talk/relate better than they are at the moment — and better than they think they can.

Ultimately, I think that we are all capable of far more than we think we are. And the first step towards being/doing/living better, is refusing to be/do/live worse than you have to.