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.

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Hits madness… the good kind

What a day I’m having… That little post I put together on the train while coming to work has caught people’s attention. My normally sleepy little blog has by now logged 1,646 visitors. Up from a high of 200-some, a few months back.

Suddenly, people are paying attention
Suddenly, people are paying attention

I’m pretty excited about this, and checking where the traffic is coming from, Alphainventions and Condron.us are both feeding me. Alphainventions mores0, but Condron is doing it, too.

It’s a pretty intense jump — a 10-fold increase over what I typically get. Dizzying. It’s kind of depressing, that this happened as a result of me talking about terrible things happening, but I guess in these times, everybody is paying closer attention to terrible things.

I think that perhaps we’re really trying to figure out how to handle it all. It’s not easy, living in these times, and I suppose it’s human nature for people to ponder imponderables. That’s not a bad thing. In fact, it’s a good thing. Writing about terrible things isn’t the most pleasant activity, but if we can come away with some lessons learned, then we may be able to turn negatives into positives.

One can only hope.

I talked to my friend today about their nephew. People think it was a drive-by shooting. Stupid, stupid, stupid. What’s the point?! What does it give us — anyone — to strike out against others from a safe distance?! From the safety of a passing car… What is the point?

I can think of a number of reasons someone would want to do such a thing. I can think of a whole lot. In a small way and on a very limited scale, it certainly has allure. But on a grander scale, within a community context, it has on meaning at all, and it only serves to destroy what little connection we have with our world.

And I think about how this relates to TBI. And PTSD. I can’t help but think about it. I wonder if the people involved were cognitively impaired, in some way. If they were socially impaired. If they had been injured so often and so badly by a wrecked family system and a wrecked culture, that there was no way they could get through it in one piece. If they were so brutalized by the inequities of this culture we tend to adore, that there was no hope left for anything but violence. Shooting. Cowardice from a moving car.

Certainly, whoever did this was alienated from their community, else they wouldn’t have done this. People are by their nature self-preserving. They do most things because they get something out of it. My logic is getting all tangled around, I’m sure, because I’m so pissed off about this shooting — about all the shootings that have been going on. But it seems to me that people who feel they have a place in the world, who have a future ahead of them, who can clearly see how they are interconnected with one another, and who have positive, mutually beneficial relationships with others they care about, are not going to run around shooting other people from moving cars.

But, you may say, people are responsible for their life choices. They have to make wise decisions and act on them, and if they choose the lesser, then they should be caught and punished… possibly put away for a very long time. I’m not saying that isn’t true. I agree with it. Personal choice is critical in all this, and I do believe in finding, catching, and punishing wrong-doers. I hope whoever killed my friend’s nephew is found, tried, and sent away for good.

But if someone is so f’ed up by a long, long history of abuse and neglect, and thanks to many beatings and falls and fistfights, their brains have been altered in ways they’re unaware, so that they’re doing things and making choices whose reason escapes them, and their skills and abilities are eroded by lifetimes of neglect and misunderstanding and seemingly random punishment, what chance do they have of acquiring the ability, even skill, of assessing their behavior and their situation and figuring out how to set right what’s been wrong for so long?

I do think, based on my own experience, that head injury probably plays a much larger role in our society’s ills than we care to admit. Certainly trauma and post-traumatic stress does. We should probably look closer at it as a nation. I suspect we’ll have ample opportunities to do so, as our veterans return from Iraq and Afghanistan, many of them with TBI and PTSD — and not all of them diagnosed and treated or supported in any way. I fear we are headed for social melt-down, even as our economic situation worsens waaaay past where we thought it would bottom out.

This is not to say that I think everyone who’s been hit on the head or suffers from PTSD gets a “pass” when it comes to bad — even evil — behavior. Some sh*t is precisely that — pure evil. The thing is, with brain injury, you don’t always know how evil your behavior is. It’s when you start to approach your injuries and deficits and learn to understand it and you get your broken head around the ideas of what’s right and what’s wrong and what you should and should not do, that you have the chance to examine your choices, become conscious about them, and become capable of taking responsibility for what you’ve done.

But until you can look at your injury and the after-effects, and come to terms with the person you’ve become as a result, you can’t really even start to approach the level of self-examination that’s so important, even vital, to responsible behavior.

My friend’s nephew is dead. It is a goddamned tragedy. Hearts have been broken, and some of them will never heal. This happens every day, all over this country… all over the world. And every time it happens, it is a tragedy. There’s no two ways around the awfulness of it all. But the worst thing of all is, this sh*t keeps happening, and we don’t seem to learn. We can’t seem to figure out how to stem the tide of this wretched self-destructiveness, and we can’t seem to figure out how to make our streets safe. Not just the nice streets in the nice neighborhoods, but all streets. In all neighborhoods.

I’m just one person looking on from something of a distance, but I am holding onto some hope. Maybe it’s easier for me to do it, because I’m not in the middle of my friend’s family’s pain. I’ve been in similar pain… and if nothing else, I cannot lose hold of hope.

I can only pray that maybe someday we’ll figure out ways to approach our social limitations with common sense and compassion, find the courage to reach out to ask for (and offer) much-needed help, and force ourselves to look at social ills not just as opportunities to capture and punish the anti-social dispossessed, but as gateways to greater understanding… Gateways that not only make it possible for us to understand, and sometimes forgive, but which force us to face up to the terrible things we have done… and change our ways.

Maybe I’m being overly optimistic. I’m sure on some level I am. But after all I’ve been through and survived, after having come through so much wretched difficulty in my own life, after having won so much and achieved so much despite my limitations, I’m convinced, there are such things as miracles.

Hello, Officer… A Temper Flare (Almost) Gone Wrong

What a beautiful day it was! The mid-winter sky was bright and blue, and the sun was finally showing its shining face after days of inclement weather. Driving home from work, I gazed around me at the gorgeous landscape. A thick blanket of fresh new snow covered the fields on either side of the back road home, softening the stubble-covered terrain. Intermittent stands of woods were silent with insulating white, trees sleeping silent beneath a delicate frosting that broke loose in passing breezes and showered to the forest floor in a sparkling cascade. Babbling brooks flanked the country road, here and there, cascading cheerily down rocky beds, icicles dangling from sticks and grasses which hung close enough over their splashing course to catch — and instantly freeze — splashes from the snow-melt swollen streams.

I was on my way home from my new job to my new house, and as I gazed around me at the beautiful scenery, it felt as though my life were being made new again. The stress and strain from the recent move from the suburbs to the country had tested my endurance sorely, and all but exhausted my strength. The transfer from my old job had not been without some challenge, as well. Change is never easy for me, and adjusting to not only a new home in a new place with new neighbors, but also a new job with new responsibilities and new coworkers, had turned my post-holiday season into a see-saw of elation and despair.

But after weeks of settling in, getting acclimated, developing my new routines, and finding better ways to drive to and from work than the freeway filled with aggressive drivers, I was finally starting to feel my balance returning.

That day, as I motored happily across the countryside, making it home before dark (for once), everything seemed like it was falling into place. I had the radio on — loud — and my spirits rose with the energetic dance beat. My little car — a late model hatchback with a funky heater — had finally warmed up, after running for 10 minutes. I was making good time, and I’d be home soon.

Or was I? I suddenly looked up at my rear-view mirror, and lo and behold, there was a local cop with his lights flashing… coming on fast. I instinctively took my foot off the gas and glanced down at the speedometer. The needle drifted quickly south from around 45 mph… and I looked up as I passed a sign that said I was in a 20 mph speed zone. Shit! I had been so busy listening to music, and thinking about getting home, I hadn’t even noticed the speed limit. Maybe he was after someone else, I thought for a moment… But no, as I slowed down, so did he. I braked, signalled, and pulled over to the side of the road, and he pulled in right behind me.

*&%! I thought to myself. How could I do something so stupid?! I knew that this stretch of road was where the local cops hung out. I’d passed them plenty of times before, as they lay in wait of commuters taking the back way home. A wave of angry frustration welled up in me, and my head began to spin as the officer got out of his car and approached. I could feel my pulse quickening, a roar in my ears starting, and my gut churned as I started to build up a head of steam. All I wanted to do, was get home. All I wanted to do, was get through this town. All I wanted to do, was put the tough day behind me and relax in front of my fireplace. I didn’t ask for much. And I didn’t mean to speed through this town. I just lost track of how fast I was going! What the hell was this cop pulling me over for? Didn’t he have other real criminals to catch? What the fuck?!

I could feel the indignation rising in me, with every approaching step of the cop. Strings of profanity coursed through my head, and my gut continued to constrict as my hands tightened around the steering wheel. I couldn’t believe I’d been stupid enough to speed. I couldn’t believe this cop had been that stupid to pull me over. Everybody was a fucking idiot. Jesus fucking Christ.

The cop reached the side of my car, and I rolled down the window.

“Do you have any idea how fast you were going?” he asked.

“Too fast?” I heard myself say. It sounded smart-assed, and he didn’t like that.

“License and registration please,” he said, and I pulled my license out of my wallet and handed it to him. Still seething, I reached into the glove box to find my registration. I always kept it in the same place — in a long sleeve that held my insurance papers as well. But as the crashing ocean of agitation crashed in my head, I had trouble finding my papers. I couldn’t find my registration. I couldn’t find my insurance stuff. I couldn’t find anything… and I started to lose it. The cop at my window was getting impatient, and when he prodded me to come up with my papers, I snapped at him that I was looking as fast as I could. I finally just pulled everything out of the glove compartment and spread it across the passenger seat.

“Is this your car?” the officer asked, with a wary edge in his voice.

“Yes, it’s my car!” I barked. “I’ll have the registration in just a minute. I know it’s in here somewhere…”

My vision was getting cloudy and blurred, as I sorted through the mess on the seat beside me. Finally, I found the sleeve, pulled out the registration paper, and handed it to the cop. But after taking a look at it, he handed it back to me.

“This isn’t current,” he said. He sounded like he was talking to a criminal.

A wave of resentment washed through me, pushing to unleash some crack or curse.

I took the paper from him and examined it more closely. Sure enough, it was from a few years back. Consternation welled up in me, and I bit back the curse that sat on the tip of my tongue. I ran through the rest of the contents of the sleeve — there were plenty of registration papers there, but none were current.

The cop pressed me for the papers, and I snapped at him again, “I’m working on it!” I couldn’t believe this shit. I rummaged once more through the pile of stuff on the seat beside me — ice scraper, breath mints, tissues, various receipts, notepads, souvenirs, tools, more papers… where was my goddamned registration!?

“Are you sure this is your car?” the officer asked.

“Yes, it’s my car!” I snapped. “Just give me a second…!” I cringed at the edge in my voice, knowing — from past experience — that police officers don’t respond well to aggressive disrespect. I’ve had several run-ins with cops over the years that escalated when I spoke out of turn or got verbally aggressive with them. A few times, I came close to being arrested, and I couldn’t afford to have something like that happen today. Not when I had this new job and a new house. I just couldn’t afford to get on the bad side of the local cops.

If only he would give me a second. Just one more moment…

But he wasn’t having it. I heard him turn and go back to his car, and when I looked up in the rear-view mirror, I saw him back in his car punching something into his onboard computer. He kept looking at my license plate and then back at his computer, and it looked like he was talking on his radio, too.

What the hell…? I couldn’t believe I’d gotten pulled over… I couldn’t believe I couldn’t find my registration papers. I distictly remembered renewing my registration just a few months before, and I distinctly remembered putting the papers in my glove compartment. Where the hell were they? Where the fuck had they gotten to?!

Suddenly, as though by magic, an envelope from the Registry of Motor Vehicles appeared before me. Inside was my current registration. It wasn‘t in the sleeve where I always put it. It wasn’t in the one place I was sure to find it. Like an idiot, I had just tossed it in the glove compartment. Stupid, stupid, stupid. I pulled out the paper and double-checked the dates to make sure I wasn’t going to make an ass out of myself — again. Then, I waited for the cop to return.

He did… with a citation in hand.

“Here’s my registration,” I said, using as neutral a tone as I could muster. I handed him the delinquent paper.

He took a long look at it and then took a longer look at me and my license.

“You should have found this sooner,” he said, handing them back to me, along with the ticket. He sounded like he wasn’t sure what to do with me — let me off the hook or cuff me and haul me into the station.

I shrugged, biting back words that I was afraid might provoke him even more.

“I had to run your plates, so now I have to have a record of this stop. I’m just giving you a warning, this time, but it’s on your record.” He sounded a little regretful, but also irritated with me. “If you had gotten your registration, I wouldn’t have had to run your plates.”

I wanted to say, “If you hadn’t been in such a godawful hurry and had given me a minute or two, I might have found it in time!” But I held my tongue and just nodded.

As he drove off, I started to shake, my stomach in knots and my torso damp with sweat. I felt like I’d just dodged a bullet… a bullet I’d stepped right in front of.