What went wrong, what went right

Lose some... and win some too

Lose some… and win some too

So, I had an interesting vacation with my family, last week. I took some time and traveled to visit the folks we hadn’t gotten to see over the holidays, when both my spouse and I were sick and could not travel.

It was an interesting mix – a lot of things got screwed up, but a lot of things went really well.

What went wrong:

  1. I was helping my parents with their gardens. My father asked me to connect the hose to the spigot on the side of the house and join together two lengths of hose, so he could water his new lettuce and beets and onions in the back garden. I managed that, no problem. But when it came time to reconfigure the hose, I got completely confused. He asked me to 1) turn off the water at the spigot, and 2) disconnect the two hoses at the center, so he could attach the one nearest him to his rain barrel in the back.  Simple, right? I thought so, too… until I turned off the water and then proceeded to try to unscrew the hose from the spigot. The hose was screwed on tight, and I had to go get a rag to get a tighter grip on the coupling. It wasn’t until I got the coupling off — after many minutes of sweating it out — that I realized that I wasn’t supposed to disconnect that  – I was supposed to disconnect the other end of the hose from the second length. As so often happened when I was a kid, my father was futzing around with something or other in the back, impatiently waiting for me to figure things out. Eventually I got it right, but only after getting it wrong the first time — and using up a lot of time doing the wrong thing right.
  2. I lost my prescription sunglasses. I have no idea where they are. Last I remembered, they were in the side compartment in the door of my brother-in-law’s SUV. I called to ask if my in-laws had found them, but no dice. My very expensive prescription sunglasses could be gone for good.
  3. I left the gas on in my in-laws’ house. Anybody could have made the mistake, really, but the fact that it was me, really freaks me out. It’s not the sort of thing I generally do. But I was so tired and out of it… Basically, one of the knobs on the gas stove was broken. My in-laws don’t have a teakettle – they use a coffee maker – and I needed to make a cup of coffee. So, I used the stove and a saucepan with water in it. The first knob I tried turned on, and it was fine. But I couldn’t figure out how to turn it off. There was a steady flame, even when I turned the knob to the “off” position. I finally got it to turn out, and I thought everything was okay. I didn’t smell gas, and neither did my in-laws when they got up later. But then later, we went out… and when we came back, the kitchen smelled like gas, and my brother-in-law had to turn off the knob, which was screwy. For the record, I friggin’ hate gas stoves. And I hate coffee makers. And I hate having to heat water on a stove. Luckily, the house did not blow up when we came in and turned on the lights. I think there was enough of a cross-breeze to ventilate. But still, it’s not a great feeling, to leave the gas on in your hosts’ house.
  4. I couldn’t sleep. I got between 4 and 6 hours a night. It was really rough, and I’m still struggling with my sleep.

Now, for the things that went right:

  1. I got to spend some good time with my folks. Not as much as we’d been hoping to, but still it was something. I got to see their gardens, and I got to just be there with them, even though tensions were high with some health issues that family members have been having. I’ve been hearing all about how terrible things are going, from people who were sharing news. But when I got there, it seemed to me that people were actually handling things pretty well, under the circumstances, so it wasn’t all a catastrophe.
  2. I didn’t lose it over misplacing my prescription sunglasses. I went out and got myself some clip-ons that actually fit my regular glasses really well — and also look better than my prescription ones, which I bought with a whole paycheck, about 23 years ago. As familiar as they had been, and as much as everyone always told me they liked them, it was a pain in the ass to have to have two pairs of glasses on me, at any point in time. I need sunglasses way too much and way too often and under too many different circumstances, to enjoy switching between regular specs and shades, every 15 minutes. This way is much easier. And I also like not having to worry about losing or damaging what I’ve got – if these shades break, I can always get new ones, no problem.
  3. I didn’t lose it over leaving the gas on at my in-laws. True, it’s a pretty embarrassing (not to mention dangerous) situation, but unlike before, this time I did not let it take over my life and turn me into a wreck. In the past, I have gotten completely derailed by things not going right, or screwing something up, and I’ve retreated into my shell to “protect” the rest of the world from me and my screw-ups. This time, I felt like crap for about 6 hours, then I let it go. I apologized profusely, and then got on with just living my life. That, my friends, is progress.
  4. I managed my fatigue pretty well. I laid down and took naps when I could. I took it easy and didn’t push myself too hard. I could really tell just how tired I was (and I can tell I still am), and I acted accordingly. I didn’t just push through for the sake of pushing through. I was flexible. I pulled over and slept, instead of keeping on driving through, when I was so damned exhausted. I hate being that tired, and it has a negative impact on me, but at least I didn’t let it wreck my time.

So, things weren’t perfect – far from it. There was the usual family tension and the usual frustrations. There was the expense of traveling and the time I lost from projects at work. But overall it was a good time, and I’m glad we went. It will take me days to catch up with myself, but catch up I will. I’ve got a good open schedule ahead of me in the coming weeks, and I am honing my approach to my job search and skills building, narrowing all the things I am planning to learn and practice, so I don’t overwhelm myself.

One thing about intense fatigue, it forces me to make choices, to rule things out. When I’m energized and feeling “up”, I tend to take on too much, I don’t pay attention, and then things get screwed up. But when I’m tired, I focus more, I take more time to double-check my work, and ironically things tend to turn out better. I still feel like sh*t, but at least I’m the only one who’s suffering.

Tutorials for dealing with TBI

Dealing with TBI takes a team effort

Dealing with TBI can be hugely confusing and frustrating. There is so much information out there – some of it conflicting, some of it duplicated, a lot of it outdated (and never updated on the web, because people stop updating their web pages). So, finding useful information that cuts to the chase, that’s practical, and offers more than just a marketing promotion can be a challenge. Fortunately, there are such resources out there. Project LEARNet is one of them.

Project LEARNet, which is “A Resource for Teachers, Clinicians, Parents, and Students by the Brain Injury Association of New York State”, has some great tutorials on Common Issues for students after TBI. Don’t let the focus on kids / students deter you – these are great resources for anyone who is seeking to better understand TBI. Check out the tutorials here. They are downloadable PDFs that you can print and take with you – great stuff!

All Project LEARNet Tutorials
1. Assessment Issues
2. Cognitive/Academic Issues
3. Self-Regulation/Executive Function Issues
4. Behavioral Issues
5. Social/Emotional Issues
6. Family Issues
7. Physical/Medical Issues

It is so rare to find a concentration of truly helpful information in one place. Also very useful, for anyone seeking to better understand TBI, is their page on Problems Seen after TBI. You can read about them here and then follow the links for more information and specific tutorials. They cover many different bases on their “Problems Seen” pages – general medical possibilities, cognitive/self-regulatory, behavioral, and social/emotional possibilities for the source of the problems.

If you’ve got these issues – or you’re dealing with someone who does – this is a great place to start.

Again, don’t let the focus on kids/students dissuade you. This is good and useful information and it can be of great help to just about anyone trying to figure out WTF?! after TBI.

Brain Injury Resources Updated – general info and Behavioral Stuff

Modulate… modulate

I have been meaning to do some more work on my Brain Injury Recovery Tools pages. So, this morning, I did. There’s nothing like doing something for someone else, to get you out of a funk. There is a lot that I need to add to this tools section. I don’t think it will ever be “done”. There is a lot of information that I need to find. And there is a lot of information that I need to screen out, because it’s a thinly veiled advertisement for services. Brain injury issues are so pervasive and so problematic for so many, it just makes sense to pull out everything I can find — in my files as well as my bookmarks and favorite sites — and post it. It’s also helpful for me, too, because I tend to forget about this stuff and overlook that I’ve got some pretty great resources available right in front of me.

I just added a few links on the “different flavors” of brain injury page for overview information and resources on ABI, TBI, Stroke, and Concussion. There is a ton of information out there to sort through, so I’m trying to keep it pretty simple and just list overview stuff. Folks with more time (and probably more patience) than I can Google away and see what else is out there. One of the biggest problems with finding information is that there’s just so much… and often the information that’s there is funded or outright provided by commercial interests, such as rehabs or healthcare providers. That’s the case with some of the ABI resources I found. But at the same time, they do have some interesting videos and some useful links, so I figured I’d include them and hope for the best.

I also added to the Behavioral Issues page – a few links to Impulsiveness issues, courtesy of Give Back LA. The Give Back material has helped me tremendously over the years, and it’s well worth reading — and re-reading. Here’s what I added on my Impulsiveness page:

  • For Family & Caregivers: Managing Impulsive and Inappropriate Behaviorcheck this out for some excellent caregiver information from Give Back LAImpulsive behavior–actions not thought through–probably impacts your life and your loved one’s more than any other deficit. Impulsive behavior is what embarrasses the family in public places and social gatherings. It is why adolescent siblings and old friends don’t want to be seen with the survivor. It is the source of so many kinds of inconsiderate behavior, words or actions produced without any awareness of how you will feel or be affected…

I really want to add even more, and I will. I just don’t have a lot of time right now, and I need to get on with my day. I’ll need a nap this afternoon, as well as a lot of stamina, as I’ve got weeks of procrastination to make up for. But I’ll make up for it. And I will get my nap.

Onward.

Back to some productivity

You betcha

Wow, I can really tell I’ve been away. My head is in a whirl, thinking about a ton of different things, not staying “on point” very well. I have a lot of chores and errands I need to do today, to get myself and my house back up to speed, but I’m scattered. And I’m not sleeping well. The trip really took a lot out of me. It’s going to take me a while to get back.

I met with my neuropsych last week, and we discussed how I’m doing and where I’m at — after my last set of test results, which came back great, they’re feeling pretty good about my situation… as far as they can tell. I did mention, however, that things have been less than rosy in a number of different areas. In the past few years, I’ve been hounded by creditors, threatened by lawyers, dragged into court several times, had a close call with a suspected cancer scare, I’ve been dissed and demoted at my job, cheated on by my spouse (who is making increasingly bad decisions in their life, I’m sorry to say), betrayed by “good” friends, had a few run-ins with police, my money is at an all-time low just as I have house repairs I need to make, I can’t sleep for shit, and I have had a ton of physical pain.

My neuropsych is actually unaware of most of this. And they got a bit upset when I mentioned dealing with lawyers over money, the other day. They asked if I was keeping things from them. It’s not that I “keep things from them” — well, maybe I do — but I just can’t deal with all the processing around such things. It’s way too overwhelming, and when I discuss things with people in person, it usually gets me even more confused and turned around, and it keeps me from being able to just handle things. I guess I’m too independent for that.

I’m also a very non-verbal person, when I’m not writing in this blog. Most of my problem-solving for Really Big Deals takes place with visuals and pictures and non-verbal / spatial conceptualizations — I have a very clear view of how I’m going to do things, step by step, and that view is spatial & logistical, not verbal. When I try to put it all into words in conversation, it’s just too confusing for me, and it blocks my progress. I can never articulate exactly what I am thinking and feeling and experiencing, and it ends up sounding lame — like I’m just complaining.

I also have a hard time discussing things while they’re happening – I need some space from them, to get my head around them and understand how I feel about them. Otherwise, I get overwhelmed, and I end up shutting down or breaking down, neither of which is helpful for me. So, when I talk about Reall Big Things, it’s usually after the fact. It’s just how I am. It’s not a trust thing. It’s logistics. So my neuropsych can quit being so sensitive and feeling left out. They just need to let me do what I need to do, and provide support and feedback only for what I want to bring up.

Yeah, my life is way more eventful than it “should” be. It’s way more eventful than I would like it to be. Oh, well.

Not that I’m complaining. On the contrary. Things are sh*tty, but I feel good. And I think that because my mood is good and my ability to function and my self-confidence have all improved vastly over the past several years – especially since I started this whole tbi recovery process – they think that things are much better than they are.

Objectively speaking, if you look at things from a certain angle, they actually suck bilgewater. A lot of people I know would be totally traumatized by the stuff that’s going on with me. And I don’t think my neuropsych has the first clue that so much is falling to pieces with me. I just haven’t talked about it much because I can’t wrap my head around it, and I’d rather just soldier through than process it and discuss. It would take 20 hours a week to sort through it all, and I just don’t have that kind of time.

But on the other hand, if you look at things differently, everything is good – excellent – very hopeful (!). I have a ton of great prospects, I’m engaged in my life, I’m learning, and I’m not thrown off by all this stuff. Not completely, anyway. I’m hangin’ in there, and things are progressing. I’m like an action figure / folk hero. At least in my mind ;) Nothing valuable comes for free. It just doesn’t. I reckon, I’m getting what I pay for.

Plus, after a really intense bout of depression the other night, I decided to just say f*ck it all and give up … for the time being. Just quit trying to make everything turn out a different way, and pray more. Maybe start going to church again. I don’t know. I felt like sh*t, the other night, but I knew it would pass. I would get some sleep. I would wake up the next morning feeling different. I would get back into my routine. I would continue to brush up on my skills. And I’d just friggin’ let go of stuff I can’t control and seem to “handle”.

It worked, pretty much. I went to bed. I didn’t get nearly enough sleep – I’ve been waking up at 4:30 like clockwork, lately, even if I just get in bed at 11:30 – and I felt like death warmed-over yesterday. And my frame of mind was better, but not stellar. But screw it, at least I got myself up and out in to the day. And I got a lot done, actually. That “giving up” business actually helped a bit. And despite the knee-deep manure I seem to be wading through at any given point in time, I’m hopeful. I’m cheery. I’m optimistic in a blithely pessimistic sort of way. My expectations are quite low. So when things go right — as they often do — it’s a wonderful surprise and a pick-me-up.

My state of mind notwithstanding, at least I’m on my way back to my regular routine now. Nothing is perfect. My life is a work in progress. And all this brouhaha has helped me develop a high tolerance for crazy crap happening all around me, so I don’t get completely derailed by it. I have a plan for moving forward. And I’m following my plan. So, it’s good. It’s fine. Some things really truly suck in my life, but I don’t feel like talking about those things right now. I’m going to focus on the good things. And get on with my life.

Onward.

Stopping the bad stuff before it starts

A storm was brewing…

Signs of progress… Yesterday, I was pretty worn out after a long day of work. I was supposed to leave for my vacation in the afternoon, but I had too much to do, so I ended up working through the evening to at least make a dent in what was happening with work.

After that, I got into the beginnings of a very familiar argument with someone over a topic that’s very touchy for me. Things have been tense for over a week, since the Boston Marathon bombing, which injured some friends of friends and had everybody at work talking and stressing… talking and stressing…

No matter where you are, these kinds of events can really take a toll on your mental health, and I was a little worse for wear yesterday — between not getting to leave for vacation on time, having to rush to fix all kinds of stupid sh*t that got screwed up because somebody at work didn’t want to do their job, and feeling pressured by my family to spend time that I don’t have, visiting them… and (had I mentioned?) working like a crazy person all day.

So, when this argument started, I could feel the familiar rush of indignation, getting upset because I “know better” than the person I was getting into an argument with. They were making unwise choices about their health, not taking care of themself, and then getting all tweaked because they have health issues. Uh, d’uh — you eat crap, you don’t exercise, you have no apparent regimen in your daily life, and then you complain about not being able to do things you used to do, and you’re freaked out about illness and getting sick and coming down with diabetes or a heart attack… without ever doing anything about it. I get so frustrated with this individual, whose behavior seems to have no connection with what they actually want to have happen in their life. It’s maddening.

And of course, I know better.

I started to get really tweaked over it, getting angrier and angrier with them over what they were doing and saying and how they were acting. Then it occurred to me — I’ve had this exact same argument with this person for years and years, and it never gets resolved. We just get pissed off at each other, go our separate ways for a bit to cool off, then get back in touch as though the whole thing never happened. There’s never any resolution, because they think they’re doing things right, making choices that make them feel good in the moment but which have been shown by tons of medical evidence, to do them harm in the long run. All they know is “the now” and all they really strive for in their personal life is to be “present in the moment”.

Yes, it sounds insane to me — trading your future for the sake of the now — but that is their perspective, and in all the decades that I’ve known them (they’re one of my longest friends), they have never felt or acted or believed any other way. And the times when they did have little health scares, they were back to their old ways, as though they’d never had the scares.

But as I sat listening to them, I could feel myself getting more and more tense, feeling myself really stressing over it… while they just carried on talking about things as happy as a clam. And when I said something about being concerned for them, they snapped at me… and I could feel that old argument coming on again. I noticed that in my own body, my head was starting to feel tight and pressurized. And my heart was starting to pound. I was starting to sweat, and my thoughts were starting to repeat over and over the same arguments and concerns I’ve had for years — like they were a dog chasing its own tail. I was getting really uptight, really stressed, and I was on the verge of flipping out at them — as I have often done in the past.

But I stopped. I stopped the downward spiral, I stopped the dog chasing its tail. I knew I was tired from a long day of working. I knew I was upset about not being able to leave on time for my vacation. I knew my patience had been running thin since about 10:00 that morning. I knew that where I was going was NOT a good place to be.

I also remembered what I’ve heard and read in a number of places — the average emotion lasts about 90 seconds. Its biochemical “recipe” gets into our blood — and then can get flushed out in less than two minutes. If left to its own devices without any kind of intervention on my part, it will dissipate and disappear. I don’t have to do anything, if I don’t much care for the experience — just breathe and let it go its own way. On the other hand, I can choose to feel something different and let that get into my system for a longer period of time.

So, if I’ve got 90 seconds to work with, that gives me a choice — I can either dive into whatever I’m feeling and get all worked up and bent out of shape, like I have countless times. Or I can distract myself (I’m very good at that), breathe, let my system chill out, and NOT have the same shouting match that has been the buggaboo of this friendship since almost the beginning.

So, last night I chose the latter. I distracted myself. I just sat there quietly while they talked, and I didn’t get into it. I was upset at first, but after a little while that feeling dissipated and I started to feel sane again. The dog stopped chasing its tail. The tension and pressure in my head relaxed. And even though I was still irked by what they were saying and doing in their day-to-day, that feeling didn’t “own” me the same way it usually does. I was able to tell them what I felt and how I was feeling, in a sane person’s gone of voice… and then let it go. I didn’t get into the blame, the fear, the anxiety, the frustration. I “went there” for a little bit, last night. But then I let it go and did something else with my attention. I stopped the flash flood of emotions before it got started.

And you know what? When I didn’t fly off the handle and yell and criticize and attack, the person on the other side of the discussion could actually hear what I was saying. They could actually get that I was concerned about their health, that I was worried about how much money they were spending on junk food, and that my frustration and anger came out of concern for their health. It wasn’t about me trying to shame them. It was about me caring about their well-being and wanting to see them have a better life and do better with themself.

And it helped. Last night could have kicked off a really shitty vacation for me, starting me off on a foot that started with a blow-out, me not being able to sleep from being so friggin’ tired, having my chemistry out of whack, and having yet another instance of an impossible argument that never gets resolved.

I can’t say I’m that encouraged by my friend’s choices. And I can’t say I’m that optimistic about their long-term health and happiness. But for me, at least I didn’t drown in a flood of emotion that just swamps me and makes me feel really, really terrible. When I get that upset and blow up, the biochemical residue stays with me for days and drags me down, making me depressed and wiping out my self-confidence.

Today I don’t have that problem. And my friend doesn’t have to go through their day with the memory of yet another one of my blow-ups. Today I get to start fresh. Everybody does.

Onward.

Finding progress after TBI

It’s there if I look for it

It’s been a real roller-coaster of a year, thus far. Work changes, home life changes, and trying to “reboot” my life for the better.

I’ve been noticing that I get pretty FIXated on what needs to be “fixed” in my life — what’s wrong, what’s going worse than I want it to, what needs to be addressed so that I can relax.

Relax… hm. There’s an idea.

But here’s the thing — a lot of what I think is “wrong” is going to change on its own, so I don’t actually need to do anything about it. A lot of what I really struggle with isn’t going to last. The job situation changes, as people come and go and the company decides to do something completely different. Family situations change, as people get sick and get better and learn their lessons and talk things through. Everyday life situations change, too. It’s just the nature of things.

So, getting too caught up in fixing something in my life that’s going to change, eventually, anyway, doesn’t actually make a lot of sense.

What makes more sense, is to settle into my own life, my own pace, my own way of thinking and doing things… figure out what I want to do with myself in my life… and stay the course as I get there.

All around me, things are crazy. People are genuinely insane, and they’re not making much attempt to hide it, these days. I can’t even look at the news these days, because all that’s there is drama and pain and blood and explosions. There’s no news of anything really good going on on mainstream media. Seriously, there’s not.

So, I have to find a different way — in the outside world and internally as well.

There’s Good News Network, for example, which shows all the good things that are happening in the world that don’t get major media coverage. There’s Good News on the Huffington Post, and then there’s Happy News, which is real news of happy things.

Internally, I need to keep my spirits up, as well, and really concentrate on the good that’s happening in my life. I tend to be so oriented towards addressing issues, finding what’s wrong and fixing it, that I neglect the good when it’s there. And I end up feeling artificially bad about so much, when I could feel genuinely good about so much more.

The fact of the matter is, I can now live my life with 1000% more sense of capability, than I could, just a few years ago. The fact of the matter is, even in the face of really difficult conditions, I can function — and function very well. The fact of the matter is, I have learned how to manage my temper and control my anger outbursts. The fact of the matter is, people who used to be afraid of me, no longer are. I have a better relationship with my family than I ever have — I even spent an hour on the phone with one of my siblings on Sunday night, talking in ways we have rarely talked — nothing that heavy, just talking for real about our lives and how we feel about them.

So much in my life has improved over the past years of dealing with my TBI issues. So much has settled itself, or I’ve found ways of handling it all with more capability than I thought I could. I have done some pretty amazing work, and I need to remember that — maybe make up a record book of some kind to remind myself of how far I’ve come, and what I’ve accomplished.

Because I forget. I forget and I lose sight of those things. My memory is not my best friend, when it comes to tracking where I’m at and how far I’ve come. I’m pretty caught up in the everyday, so I tend to focus on that.

But there’s more to life than the present instant that needs to be “dealt with”. There’s a whole world of past and future that’s looking for my recollection and discovery. And the bottom line is, no matter how much I may doubt myself from day to day, I have a whole lot of experience overcoming substantial roadblocks, and I can be pretty proud of that. I need to pace myself… and remember that even overcoming roadblocks, as necessary and encouraging as that can be, does take a lot of energy. And when I get depleted, I get depressed — for no other reason than that I’m depleted and I need to recharge my batteries. I get so tired, I forget that the very reason I’m tired, is because I’ve been doing really good work — and a lot of it — all day.

So, as much as I think about “making” progress in the course of my daily life, I also need to remember to find progress — steps I’ve already completed (and successfully at that), which show me I’m far more capable and resourceful than I give myself credit for.

I can do better about giving myself a rest and letting myself take a break, so I can come back stronger than ever. And I can remember — whether through a note to myself or a sign on the refrigerator — that I actually am making progress, it just seems like I’m not, because it’s lost in the haze of my fatigue and all my future plans.

Progress — it’s right in front of me, if I but look for it.

Getting used to it — again

For some reason, there’s a part of me that thinks I’ll be able to soldier through this TBI stuff and come out on the other side, issue-free.

Like I won’t have any more sensitivity to noise or light when I’m tired.

Like I won’t feel like going off the deep end, when I get overwhelmed and fee cornered.

Like I will finally feel rested and be able to live each day with an abundance of energy.

Like I will feel like my old self again.

Broken record me – it’s not happening.

But check this out – that doesn’t so much matter.

I mean, it does matter that I generally feel like crap on any given day, that I feel like I’ve been dragged behind a bus, at any given moment, and I feel like I’m going to just drop from exhaustion and overwhelm at the least expected times. That’s no friggin’ fun, for sure.

But the main thing is — these things don’t have to ruin my life. Sure, its unpleasant. Sure, it’s troubling. Sure, it’s a hassle to deal with. But just because it affects me, doesn’t mean it has to affect others, make them miserable too, and ruin my chances of being able to do something worthwhile in the world.

I can live and do the things I need to do, regardless of how shitty I feel.

And if I can’t get these issues to go away, I can at least keep them from ruining everyone’s day.

Just manage them. Deal with it. Handle ‘em.

And get on with it.

Onward.

Just updated – BI Recovery Tools for Behavioral Issues

Few things will make your post-brain-injury life more difficult than Behavioral Issues.

I just updated the BI Recovery Tools page for Behavioral Issues 

I’ve added info for how to deal with Impulsiveness, Aggression, and Raging Behavior.

Relationships after TBI – the road back

tbi-and-marriage-1

Coming to terms can be difficult

Here’s something a reader just shared — a web page full of informational videos on Relationships after TBI from the Model Systems Knowledge Translation Center – a site which shares information on TBI and how to address and recover from it.

The featured video is a great one – about a couple who have made tremendous progress since the husband’s TBI. It’s truly inspirational to see them, and it’s clear that things haven’t been a bed of roses for them.

One of the great things about this is that there’s actually work being done on helping couples to handle the changes and challenges after TBI. It’s absolutely true that TBI affects everyone, not just the survivor, and having people out there who can share the information and help others to do something meaningful with it, is very heartening.

The road is long, but it can be so rewarding

The road is long, but it can be so rewarding

It’s also very heartening when I see and hear stories about spouses who step up and really work at things, instead of just giving up. This varies from person to person, of course, and everyone’s resilience level is different, but TBI doesn’t have to be a death sentence for marriage.

I encourage you to check out the videos at the MSKTC

Brain Injury and Lying – The Rest of the Story

Summary: Brain injury and lying can go hand-in-hand. First, there is confabulation, where the brain-injured individual genuinely thinks they are telling the truth, but they have their details confused. Second, there is the outright lying, which can come from experiencing an intensely emotional “catastrophic response” to situations which seem insurmountable. This is an account of how a good friend of mine changed from a basically honest person to a compulsive liar after experiencing several strokes.

It seems so innocent...

It seems so innocent…

I’d like to write this morning about a friend of mine who had several strokes back in 2007, a couple years after I had my last TBI. In fact, I’d say that working with them after their strokes really make me aware of brain injury issues… so that I could recognize and deal with my long-standing issues, at last.

I have known this individual for more than 20 years, and we’ve worked together on a number of occasions. We have common friends and we have similar senses of humor, so it’s been pretty easy to become – and stay – friends with this person. I am friendly with a lot of people and I make a lot of effort to really be a good person, but this particular friendship is closer than most others I have. This individual knows things about me that I wouldn’t tell most other people. And I know more about them than most others do.

The one exception to this is TBI. When they had their strokes – two of them, a week apart – in 2007, I was one of the few people who didn’t back away from them and run. I have actually known a number of people who had strokes and TBIs, and even before I knew that I myself had traumatic brain injury issues, I was willing and able to hang in there with them. So, this time was no different really. Different strokes for different folks, y’know? ;) But when I was dealing with my TBI stuff, they just couldn’t deal with hearing about it. It was like they thought that it meant I couldn’t be there for them – and since I was one of their main supports after their strokes, the idea that I had neurological issues must have been pretty frightening for them.

Anyway, despite not getting any support from them, I really went out of my way to make time for this friend, to help them get back on their feet and rehabilitate. I have always been a firm believer that the human brain and body and spirit are incredibly plastic — and they can and will recover to a much greater degree than the “experts” believe, if you give them a chance, keep working, and don’t give up.

Working with this friend, we got them on a regular eating and sleeping routine… we got their weight down about 30 pounds… we managed, changed and then regulated their meds… we restored the strength and coordination in their right side… we got their speech and organization together… and – together – we got them back to functioning again.

We had to do it ourselves, and we had to do it alone. Because even though the MRI showed even more damage to their brain than “just” the strokes — they had other evidence of brain injuries that they couldn’t remember having — the doctors never gave them any indication that they needed any neurological or neuropsychological help, and their strokes weren’t “disabling” enough to warrant official rehab.

The impact was pretty noticeable to me, though. Their processing speed had really slowed down. They got confused a lot more than before. They had extreme emotional reactions to things that are sad or frustrating but aren’t exactly the catastrophes they thought they were. They had trouble keeping a conversation going. Their ability to multi-task was pretty much out the window. They basically went from having six gears, to having two, one of which was reverse, and when pressed to do more, they blew up or broke down in tears.  But since I’m not an “official” family member, there was only so much the doctors could offer me. Unfortunately, they and their family weren’t really emotionally or logistically able to deal with all of it. They just wanted things to go back to normal.

Out of everyone, I turned out to be the only one who was A) able to deal with the fact that they’d had several strokes (and evidence of previous TBI), and B) willing to do something about it. I’ve worked with relatives who had strokes and TBIs in the past, and this time was a repeat of those past experiences.

It took several years to get them back on track, but we did it.  And it was really gratifying to see. Plus, in the process of helping them, I realized I had my own set of issues I needed to deal with — which I’ve written about plenty in the past. Again, it’s taken me years to get back on track — more years than my friend, actually — but I’ve done it.

The only thing is, this friend of mine didn’t continue to take care of themself. They didn’t have the support of their family and friends, and I couldn’t be with them 24/7. One of the reasons that I’ve “gone off” on therapists in the past, was that I was being actively undermined by their friends who were therapists, who kept telling them that their issues had to with their terrible father, their hell-on-wheels mother, or other past relationship issues. When I tried to get support from these therapist friends, to deal with the neurological issues, I got either blank stares or active opposition, because they were so sure it was an emotional thing, not a neurological thing.

So, with family pressuring them to just get back to how things were, their friends telling them that they just needed to make peace with their parents, and me not being able to be around as much as I wanted to, because I had a lot of work commitments, they just went back to how things were before.

They stopped eating the right things and they stopped eating at regular hours.They started eating the wrong things, too — lots of sugar and fats and junk food, which has put the weight back on them — and is how they got into their situation to begin with. They let their sleeping schedule go all to hell, and by now they are pretty much nocturnal and they are rarely available during daylight hours.They stopped cleaning up after themself, and they live surrounded by piles of stuff that they can’t seem to figure out how to clear away.

It’s been really weird — it’s like they just got to a point where they decided, “Oh well, I’ve had some strokes, and I’m getting old like my parents did (my friend is  now in their 60s, and their parents both died in their late 60s/early 70s)…. so I really don’t feel like doing all this work anymore. I’m going to take a break, because I’m going to die pretty soon, anyway.

And it hasn’t had good consequences. A lot of times when I see them these days — which is more rarely than before, because I’m on a “real world” sleep-wake schedule — they look more and more like a “stroke victim” — and less and less like the person I know they are. I try to bring up their progress with them, but they always shut me down. I try to hint that they may want to take better care of themself, but they either start to yell at me, or they change the subject, or they start to cry. It’s that catastrophic response, for sure — a reaction that is just dripping with the emotion of fear and overwhelm.

Fear that there is something terribly wrong with them.

Fear that they are damaged beyond repair.

Fear that others will hate and look down on them because of the strokes.

Fear that they will never be “normal” again.

Fear that they’re going to die a horrible death and go to hell forever.

Fear that it is all TOO MUCH to handle.

So, even though I have seen changes in their behavior and their functionality, I am helpless to change any of it. I can’t even bring it up – not with them, not with their family, not with their friends. People tell me that I have no control over others, and that I should take care of myself first, but it is so painful to watch them do this to themself. Not only do they have physical and logistical issues, but there’s more.

There’s the lying.

I’ve written before about confabulation and how traumatic brain injury can mix things up in your head and make you think you’ve got it right, when you have it completely wrong. I have a had a long history, myself, of accidentally “lying” about things  — it wasn’t my intention to lie, and I didn’t actually think I was lying, but I had my facts all turned around… which looked a lot like lying. I still do it today — I miscalculate, or I get things turned around — but fortunately I have a lot of people around me who genuinely care about me and want to help, and they don’t hold it against me. So, the consequences are less, even if the problem persists.

I have seen confabulation happen with my friend, as well. They were so sure they had things exactly right… but they didn’t. Not even close. Over the past few years, however, I have seen their accounts turn into outright lies — some of them more extreme than others. They know they’re lying, but they either can’t seem to help themself or they just LIE, and then make excuses.

It’s getting really bad. On a number of levels.

First, there’s the routine lying to people about what they do with themself all day — they paint a picture that makes them look quite functional, when the opposite is true. They talk about doing things that they aren’t even close to doing — like running errands or working on important projects and going about their business like they’re “supposed to”. They’re just thinking about doing them, but they tell others that they actually have done them.

And then there’s the deeper sorts of lies — the adulterous affairs, where they aren’t only sneaking around behind their spouse’s back and flirting with people who seem intriguing, but they are actually having sex — a lot of it, and really wild stuff — with these adulterous interests, lying about it, getting hotel rooms, visiting the long-time family vacation spots with the object(s) of their adulterous affairs, and openly talking about their affairs with people who know both them and their spouse. I found out about it by accident, and I got a lot more details than I wanted to. I almost wish I’d never found out, to tell the truth.

And that’s a pretty extreme turn of affairs. Not only are they spending money that they (and their spouse) cannot afford to spend on hotels and meals and entertainment, but they are also doing it in plain view of people who know them and their spouse. But when I have confronted them about it, my friend has lied right to my face about what was going on. They have sworn – up – down – left – right – that there was nothing untoward happening, just a “close friendship”, and when I have pushed them, they claimed it was just for “emotional support”.

Right. Emotional support. Unfortunately, I know differently.

This, dear readers, is very out-of-character for my friend. For as long as I have known them, they have been stable and loving and committed to their spouse. And they’ve at least tried to be honest. Until the strokes. Since the strokes, and especially they stopped taking care of themself, their behavior has become so erratic, so chaotic, so extreme — with the cursing and laughing and crying and lying — that I frankly don’t want to be around them much. I can’t just abandon them, but it’s hard to be around it all. And when I try to bring this up and discuss with them, they just can’t hear anything about how their strokes have affected them. It’s too much. It’s just too much for them to handle. And they pitch headlong into yet another mother-of-all-catastrophic-reactions. Yelling, cursing, crying… and more lying.

Watching someone who used to be level-headed, strong, secure, and self-confident burst into tears or blow up in a rage or come up with some cockamamie fantastical version of “reality”, because you’ve drawn their attention to something that everyone else on the planet can see clearly… something that is really and truly wrecking their life (how long till their spouse finds out about the affair(s)?)… well, that’s a pretty bitter pill. Trying to reach out and help one of your best friends — only to have them freak out on you and become threatening… it’s a hard one.

And it’s complicated. There are a lot of factors in play. And I can understand why a lot of this happens. But the lying doesn’t help matters any. It’s one thing to confabulate, but outright telling a falsehood deliberately is something that doesn’t sit right with me.

It’s just wrong. And to see them do it so compulsively… that’s pretty hard to take. I am almost neurotic about telling the truth — I get myself in trouble all the time, because I’m not willing to lie to people. And when someone who matters this much to me just runs around lying through their teeth, left and right, to everyone — including their spouse — it really works on my nerves.

But when I look at this in terms of catastrophic reaction, it starts to make sense. It’s like there’s all this conflicting stuff rattling ’round in their head that they can’t make sense of, and it puts them on edge. They have a history of trauma, too, with a father AND a mother who were each a real piece of work, so that personal history has biochemically primed them to go into fight-flight over just about anything that looks like a threat. From what I’ve seen, they are geared towards a fight-flight response to life in general… and their blood sugar is out of whack, so that it’s making that fight-flight even worse, and every little uncertainty looks like an enormous THREAT!!!

So, being on edge, and having the perception that there are things that are too big for them to handle, and they’re not going to be able to handle them, and they are in DANGER because they can’t handle them… well, that sets up the perfect “petri dish” for growing lies. Because lying is the one (and only) way they can immediately cope with an imminent threat — which of course everything looks like, especially when a social situation calls for the kind of quick thinking they cannot do anymore.

When I look at this whole business through a neuropsychological “lens”, I can understand the reasons for their behavior. And bottom line, knowing what I know, I actually don’t blame them. Yes, they are an adult, and yes they are responsible for their actions, but this is a neurological condition, not a psychological or emotional one. I’m not letting them off the hook — lying is still wrong, and I am still very uncomfortable with it.

At the same time, I’m seeing the real reasons behind it. I’ve discussed this a few times with my neuropsych, and they propose that their brain might be experiencing further vascular damage, because not only do they have a history of strokes, but their blood sugar is on the diabetic side, as well, which can cause more vascular “insults”. And that’s a whole other ball of wax to deal with.

But still, the lying… I keep coming back to that. It’s really tough to watch, really hard to handle. One of my best friends is self-destructing before my very eyes, and I am helpless to do anything about it. All I can do, is learn from their actions and their mistakes, and do what I can to help them as best I can. To be honest, it motivates me to take even better care of myself and better manage my physical and neurological health, because I don’t want to end up like them. I have noticed myself lying at times, when I felt cornered and felt I couldn’t handle everything that was coming at me. That is something I DON’T want to make a habit of, and seeing my friend go through everything they’re going through, is lighting a fire under me to do better. To be better.

None of us has control over others, which is probably a good thing. But we do have control over ourselves, which is an even better thing.

Here’s to life – onward.