Weekend break : Food and travel and doing

This was like my weekend break – more fun than it looks like

I took a break this past weekend. Actually, I worked my ass off around the house, and I didn’t have my nap, either day, and I didn’t get a couple of of important things done that I *had* to do (oh, well…)

But I still took a break. I took a break from the crazy confusion, the frantic ad-libbing, the fly-by-the-seat-of-your-pants improvisation that wipes me out and depletes me and makes me feel worse than ever by the end of the day.

To be honest, I am pretty fried. I’ve been fried since Saturday morning, actually… I was in really rough shape — Woozy and out of it and really confused and off balance. Forgetting things left and right. Having to double back and do things over and over and over, till I actually do them correctly. Literally not knowing where I was or what I was supposed to be doing… till I stopped and took a breath and looked around, and then — oh, yeah — then I remembered. But in slow motion. Everything in    v e r y   s l o w   m o t i o n… Crazy.

Feeling all weekend like I was being dragged behind a horse with my foot jammed in the stirrup, and there’s no end in sight to the gallop. I woke up feeling sick and tired, Saturday  morning, and I’m still feeling sick and tired. The main difference is that this sick and tired is a whole lot less stressed than I was on Saturday morning, 48 hours ago.

Because I took care of business. I made my lists. I mean, I was brutal to myself this weekend. No Mercy. NO DISTRACTIONS. NONE.  ZIP. NADA. ZILCH. Not Even Going There. I had a lot to do, and the whole lot was a confusing mass of must-do’s, to-do’s, better-do’s, and what-not, some of the things more mandatory than others, but all of them feeling mission-critical.

Yeah, mission-critical. Whatever. I got my notebook out with my to-do list in it, and I sat down each morning, yesterday and today, with my special pen that I always use when I am writing Something Important, and I waded through my lists, culling the things that could wait, and making damn’ sure that I did the things that Couldn’t Wait. I felt like a blithering idiot, needing to write down each step:

• Go to the post office
• Check whether mail has come
• Pay box fee
• Go to the bank
• Deposit one check in one account
• Deposit the other check in the other account
• Go food shopping and buy [insert items here, grouped by the section of the store where they are located]
• Eat lunch
• Take the trash to the dump

… and so on, but I did it. Because if I didn’t write it down exactly the way I needed to do it, it wasn’t going to get done. I was going to get pulled in a million little directions by a million little distractions. And I needed to get things done.

I took that to-do-list notebook with me everywhere, and I checked in with it every few hours, to make sure I was still on track and not wandering off into never-never land.

And you know what? It worked. As fried as I was, as sick, as confused, as turned around and impulsive as I was, I soldiered through. And by the close of Saturday night I had completed the last of the Ultra Critical items that Must Be Done, and I could finally wind down the evening with some hot tea and a glass of cold water. And some Advil, of course.

Not that the weekend wasn’t without mishaps. I jumped the gun and ordered a $30 replacement battery for my cordless drill before I thought to check the Home Depot website, where they actually had the exact same battery for $9.97. That’s an expensive mistake. I can’t afford to just spend $30 at the drop of a hat. But I can’t cancel the first order. Screw it. I’ll justify it because I’m supporting a local business instead of a massive big-box chain store, so I’m fine with spending that $30 (almost). I went ahead and ordered a second battery at the great price, and now I’ll have two batteries that hold a charge, instead of one little weak one that peters out after I drill a couple of holes in some plywood.

It took me forever to get going in the mornings. I couldn’t settle down and get myself in the right direction for hours. I was incredibly distractable, both mornings, going in circles at top speed. Crazy. But when I reined myself in and got myself back on track, it was okay going.

Get that list together. Check that list.

Right now, it probably doesn’t sound much like a weekend break. But it was — with my lists. Sitting down and figuring out what I was going to do – and when – and then just going through the steps of doing it all, one piece at a time, really took the pressure off. It let me stop thinking about what I was going to do, and let me focus on the things I was doing, when I was doing them.

Trying to figure out what to do next is a big problem for me, and it’s a huge time and energy suck. I can literally run in circles, trying to get things done — and getting nothing done at all. It’s also a big source of stress for me, because I can get caught up in the logistics and trying to figure things out and trying to think through what’s next – what’s next – what’s going to be next after that.  Caught up and confused. Crazy. And then I end the day feeling like crap because I got nothing done that I intended to.

Fortunately – and thanks to my lists – I managed to get a bunch of stuff done around the house that I’ve been meaning to do for years. I did a bunch of work in the yard, clearing out a ton of weeds and invasive plants that have been wreaking havoc with my grass for years,  but I never got around to addressing. I also cleaned out my garage and gave it a good sweeping-out, which it has also been needing for years, but hasn’t happened. Till yesterday. I worked in my basement, rearranged things that needed rearranging, managed to hook up my web cam on my computer, fiddled a little bit with video, moved some files around on computers, did some research, and got just about everything important checked off my list.

Amazing. Pretty fantastic.

So, what’s with the food and travel? Well, this weekend I was flying solo. My spouse was traveling for work, and I had the house to myself. I also had the kitchen to myself, and I was able to experiment a little with the meals I made. Friday night’s experiment was pretty much a disaster. It didn’t taste bad, but the house smelled terrible all night, and I was concerned it might still smell bad by Monday. I aired the place out on Saturday, so that helped. I also decided to try my hand at making barbecue pork in a slow cooker. On our recent trip to see family, my sister-in-law made pork and onions in her crock pot, and it was amazing. I couldn’t remember what all she’d put in it, other than pork and onions, so I looked up some slow cooker recipes, combined some of the simpler ones that sounded good, and by 8 o’clock Saturday night, I had a killer batch of pork BBQ that was out of this world. I mean, it was good. Very sweet and mellow with just a hint of tang. I bought the cheapest ingredients I could find — it was an experiment after all — and I kept it super simple. But the end result was nothing short of phenomenal, and I dined on that all weekend.

And the travel? Well, both Saturday and Sunday nights, Anthony Bourdain was on CNN (in between the tornado alerts from the network), exploring regions to the north and mid-east. So, two nights in a row, I got to see parts of the world I may never get to see in person. And I got to see the food. The chances of me ever going to any of those places is slim-to-none, so I’m happy to let him go there with a camera crew and bring back his impressions. He seems to be one of those guys who just goes to soak it all in, enjoy it, and let the experiences affect him – be that positive or negative. He just is, in the midst of all that crazy doing and happening and activity. Sure, he does along with folks, but what strikes me the most about him is that he just IS.

And when I watch him just BE in the places where he is, talking to folks, exploring, taking it all in — and eating — I get to do that, too. I get into the spirit of his adventures and get to watch how he does it. It’s a good model for me, because that’s the kind of spirit I want to bring to my own work and life, and watching someone just be open to what happens, and then talk about how it is for them, reminds me that it’s possible to be that way — even when I am dog-tired and in pain and am running out of ideas about how to be in the world.

Not that I want to make myself into Anthony Bourdain. I’ve got my own ways, my own personality, my own take on things. It’s the spirit of his work that speaks to me, and that’s what I look for.

… Not to mention, learning about amazing new foods… most of which I may ever make, but some of which are giving me ideas.

Anyway, after a very full and productive weekend, I am feeling a little better, but I’m still feeling sick and woozy. So what — I’ve got to get on with my day. The thing with me, these days, is to not let feeling bad hold me back. I might be dizzy, confused, disoriented, distractable, forgetful, and have almost no impulse control, but I have my ways of dealing with it:

• dizzy : take it slow, keep one hand on a stable surface at all times, don’t make any sudden moves, and think about what I’m going to do before I do it
• confused : make notes about what I need to do, keep refining my list, striking off the unnecessary things, and using post-it notes to remind me of what I’m doing
• disoriented : again, use the notes, and don’t get too bent out of shape about being so disoriented
• distractable : keep things simple, keep one task in mind at all times, repeat to myself — out loud and silently — what I’m doing and why I’m doing it
• forgetful : see disoriented and distractable above
• almost no impulse control : take it easy, and when I screw up (which I often do), just take a deep breath, think about what I should really be doing, and do that, if I can.

It’s not fun and pleasant, and if I think too much about it, it’s pretty depressing, but in the face of all of the above, I can still get on with my life and be productive and effective. It might take me twice as long as I’d like, and it might make me nuts at times, but it can be done. And in the end, I’ve got something amazing to show for it.

I now have a clean garage and a mowed yard, and a lot more hope and peace of mind. Not bad for a weekend’s work.

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.

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.

A plan awaits

A year from now, you will wish you had started TODAY.

- Karen Lamb

The pieces are coming together. My earlier ambivalence about this job is dissipating. Now I know I am going to be leaving – after the big deadline I have in September. This gives me about 20 weeks to hone the skills I need to get up to speed. I just really need to do it.

I have resolved to do this in the past, but things broke down with me, and I did not follow through, much to my current disadvantage. Now I am in a situation where I need to move, I want to move, I have to move… but I can’t. Because I don’t have all my ducks in a row.

To be fair, though, I can’t exactly leave before this big deadline. I can’t just ship out before it’s done. I am a key player in this project, and leaving right now would seriously screw over my co-workers, and I don’t want to do that.

I want to leave the company, not stick it to people who I work with. It’s a classic conundrum, which I’m sure I can overcome – it just takes time.

You know, it’s funny, having memory issues when it comes to future planning. Sometimes I just plain forget what I’m supposed to be doing, down the line. I lose sight of things and I get distracted and pulled off in a million other directions. Then I forget what I’m supposed to be doing… and I lose ground on what progress I’ve made before.

And then I get depressed and feel like I will never make progress. Ever.

Which isn’t true, but it sure feels that way.

So, here is my plan :

• I have a set of skills that I need to hone and strengthen and prove.
• I have 20 weeks in which to do just that.
• I have chosen three different distinct but related skillsets to work on during this time.
• Each of these skillsets has books and documentation and training materials that I can use to gain expertise.
• Those books and documents have chapters, which I can use to break down my work into manageable pieces.
• I have sever space of my own, so that my work can be seen and experienced “in the wild”, not just on my hard drive, which is very, very important for a job search.

So, if I am systematic and focused on the taks(s) at hand, I will be able to position myself very well for a job change in the fall. I will have time to work on my portfolio, and I will have time to build things that are real — and are really the types of things I want to be doing — so that people can see that I’m not just a dabbler, and I know what I’m doing. I will also have time to focus in on emerging industry trends and participate in online discussions that show that I know what I’m talking about and I’m current on emerging trends and technologies.

I just need to stay the course. Not get pulled off in a million different directions. Stay focused. Quit looking at the news to see if they’ve figure out who bombed the Boston Marathon, stop obsessing over my marital issues and personal issues. Yes, they matter. Yes, they (some of them) affect me directly. Yes, they have the potential to make me really miserable. But at the very base of it all, at the very core, if I am not gainfully employed in a job that is meaningful and rewarding for me, everything else just falls apart.

So, I need to keep myself on track. Not get pulled in a million different directions by things that may or may not affect me personally, and may not be under my control at all. There is no point to me getting that distracted over so much. When I start to get overwhelmed, I become more easily distracted, and that doesn’t bode well.

So, I need to make sure I’m not getting overwhelmed. I need to pace myself. Not go faster than originally planned, but also not bag it when I feel like I’m going slower than originally planned. Just keep steady, which is so very difficult for me… because I get foggy and turned around and then my head goes in a hundred different directions, thinking that each of them is a good idea, which it is not.

It’s a problem, this distractability. And the morale-killing fatigue. And the overwhelm that narrows my cognitive resources and wears me out… AND makes me crave stress, so that I feel sharper and I feel like I’m able to handle my life.

A plan awaits. Yes, I am motivated. Yes, it is now time to start in earnest. And yes, I’m going to do this – because I can’t imagine doing anything different. And if I don’t, things will never change the way I want them to.

Enough talk – onward.

Relationships after TBI – the road back

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

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…

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.

Figuring out what NOT to do

My Not-To-Do List

So, I’ve had a couple of really good ideas over the past week. One of them is a redux of past ideas I’ve had, that got mired in exhaustion and confusion, and seemed to die on the vine… another is an idea that never got much traction after it occurred to me before… and the last is a brand new idea that I can’t believe I didn’t have before.

All three are very different ideas, and all three have great potential. And any of the three has the power to derail me completely… and send me back to my quagmire of confused exhaustion.

Because I could blow each (or all) of them up to vast proportions and make them into a large-scale enterprise that could easily consume vast amounts of time and energy.

I could launch a company that would provide jobs to people who need them, providing a product that fills a need that no one has managed to properly fill. I could build an app that would improve the lives of millions. And/or I could create educational materials that would provide needed information to people who struggle with chronic health concerns. And I want to change jobs to do something that suits me better – way better.

Any one of these could work – and it would be amazing to do. The thing is, I want to do all of the above — and more, but I only have so much time and energy. There’s a part of me that wants to launch into all of them, never mind fatigue and fogginess, never mind the havoc that wreaks on my system. I just want to get going – start doing it – not waste any time, just get down to it.

Except…

Last week I learned that TBI-related catastrophic response can also take the form of jumping into action before getting all your facts straight. It’s not just getting bent out of shape and melting down… it’s not just running away from what’s confusing you… it’s not just overreacting to a perceived “threat” — it’s also jumping into action before you understand what’s actually going on.

Now, pretty much everybody does that to some extent — how many times have you leaped before you looked? The thing with my reactions like this, is that I jump in head-first, all-in, before considering all the information. So, I’ll decide I’m going to start a new company or launch a new web app without really thinking through all the ramifications of doing it.

So, I dive right in, start flailing around in all directions, and before you know it, I’m — once again — mired in the fatigue and confusion and frustration of trying to get so much done with fewer resources. And then all around me, people feel the burn. My spouse, my co-workers… pretty much anybody I encounter in the course of the day-to-day.

Not good.

At all.

And once again I end up with a plate full of projects, massive amounts of “stuff” I feel I have to get done, while I’m sinking in the massive volume of details — which I am less and less able to screen out and organize.

This is how it’s been with me for years — especially in the several years after my last TBI. At one point in time, I had 27 projects going on, all of which were so vitally important to me, that anyone who tried to stop me had to deal with a crazy person. I was Type-A x 1000% and nobody could stop me from being that way. I thought I was happy. I thought I was productive. What I really was, was confused and panicked and engaged in a daily catastrophic response to difficult conditions I was creating for and by myself.

Yeah, madness.

So, here I am today, with that same kind of mindset creeping up on me. I’m not happy in my job — that gives me stress, cuts into my sleep, and keeps me on edge. I’m short on money, which is never fun — more stress, more sleeplessness, more edginess. I’m consistently tired and in pain, which adds to the stress, fatigue, and edgy stuff. And on top of it, I have these ideas that I think would be great – just great.

What to do?

Actually, the question is, what NOT to do?

Literally, I cannot do all of this. And some of the things I dream of doing — like starting my own company — are actually not things that I excel at or really want to do. I like the idea of it, it seems very appealing to me, but when I look honestly at who I am and how I am, I realize that it makes no sense for me to take all of that on. As crappy as I feel these days, imagine how much worse I would feel, if I overloaded myself with all that extra activity.

So, I’m scaling back those ambitions. Not because I don’t think I can do them, but because I realize that I am only one person, and I not only cannot possibly do everything I want to do with these, but I also realize that I don’t want to do everything that needs to be done. There is so much more to these projects, than just deciding I’m going to do it. I have to manage my energy, manage my fatigue, manage my whole life in addition to these ambitions, and I have seen how things can go south when I cast my net too wide. Metaphorically speaking, casting my proverbial “net” too wide in the rich sea of details around me, ends up in catching so many fish that I get pulled into the water — and I end up drowning in details.

And then I feel like crap and feel like a failure, and I cannot dig myself out of the hole, so I have yet another catastrophic reaction and I bolt — leaving behind me the projects I loved so much… as well as a big chunk of my self-esteem.

And I become even more difficult to live and deal with.

Yeah, not good.

So, here I am… cutting my catastrophic reactions off at the pass.

Harriet Katz Zeiner says that people typically display about two different types of catastrophic reaction. The six possible variants are:

1. Silly laughing
2. Flight
3. Tears
4. Anger
5. Freezing/thought blocking
6. Being confused, but not seeking clarification

I think the last one also involves jumping into action — I believe I have heard her talk about that. In any case, I have to say that all of them tend to be a problem for me, and they generally come in this order:

In the face of an overwhelming situation, I tend to experience:

1. Freezing/thought blocking – I instinctively block out the threat (but I don’t always freeze)
2. Being confused, but not seeking clarification – I don’t realize I need to get clarification about the situation
3. Flight – I spring into action to do something about the situation… and when that doesn’t work (because it often doesn’t), I go through
4. Anger – lashing out at people around me, throwing/breaking things, and yelling (often at bosses or authority figures, like cops)… or
5. Tears – which is really embarrassing, especially at work… or
6. Silly laughing – which makes me look like a jerk-off and a clown in tough circumstances

All of the above have been major problems with me over the years, on and off — usually at the worst possible time, and generally when I’m tired and overwhelmed to begin with.

They can happen under even good circumstances, when I’m overwhelmed with good things that are on my plate… which then progress to bad things being on my plate. Really good can turn to really bad in a hurry, when I’m going through a catastrophic response.

So what to do? Well, first off, get real about my time and energy and how much effort and attention to detail each of my projects is going to take. Let go of the idea of launching everything at once in three months, and step back to do some planning, as well as some research to make sure I’m not smoking bananas.

I need to be systematic about these things, not fly into them with all these grand plans that are just pipe dreams that will dissipate (or explode) when I’m under the gun. I need to pick and choose the things that are most important to me — and the most doable — as well as the things that will benefit me most in the short-run to get me where I’m going.

I need to be strategic about these things, as well as tactical and logistical. And I need to be smart, not wildly impulsive. And most importantly, I need to know not only what I will do, but what I won’t do.

After I figure that out, I can get started.

Speaking of getting started, the day is waiting. Onward…

 

mTBI – Like Permanent Jet-Lag

Back to regular life…

Well… I’ve been back in my own time zone for more than 48 hours, and I’m still feeling the burn. It usually takes me about a week at home, till I start feeling like myself again. It’s weird – when I travel outside the States, I acclimate pretty quickly — I’m good to go after a day of acclimation. But when I come home, it’s much, much harder. Strange. Most people I talk to say it’s the other way around for them.

Well, wouldn’t be the first time I was oriented in the opposite direction to everyone else.

Maybe it’s more a question of returning home. The folks I know who do better coming to the States, live outside the States. So maybe it’s the return home that’s the trouble.

Anyway, I’ve been thinking about this jet lag business, and thinking that given my history and the issues I have on a daily basis, I’m probably more adept at functioning when jet-lagged than most people. The “symptoms” I experience when I’m jet-lagged — foggy head, slowed reaction times, intense fatigue, general disorientation, and feeling just plain “blah” — are pretty much run-of-the-mill for me under normal circumstances. I don’t even have to get on a plane to have a full-blown case. I just need to be off my routine… and push myself… and not be eating right… and have all kinds of stress and troubles… and voila — instant jet-lag! And now for my next trick…

Or, sometimes I don’t even need to do anything. I just live my life like everyone else — which, come to think of it, is full of lack of sleep, not eating right, pushing yourself, and being deluged by a daily dose of stress and strain and troubles. So whether I try it or not, I end up with “walking jet-lag” — kind of like walking pneumonia, where you’ve got fluid in your lungs, but you’re still able to walk around and function.

So, there is some comfort in knowing that I can function under even these kinds of conditions, and it’s not that huge of a deal for me. It’s just business as usual — and then some. Actually, even though I can function, it really truly sucks to have even more strain put on me that keeps me from living my life. I swear, thinking about all the things I cannot do anymore because I am so friggin’ fried from just everyday life… all the things I choose not to do, because getting into social situations or navigating “exciting” night life sets me off and sends me into an anxiety-attack-like catastrophic response and I shut down… I’ve actually given up a LOT over the past years, because A) I lose it if I get into those situations, and B) I don’t feel like watching myself lose it… yet again.  Heck, even something as simple as going to a movie can throw me for a loop, which is not fair to my spouse. Or to me. Or anyone else around us.

So, yeah, I’ve given up a lot of things over the years because I just don’t feel up to them. I’ve started doing a lot more things in the past three years, like traveling for work and going to professional conferences and what-not… but to tell you the truth, I’d rather just stay home, read and study and explore online and write on my blog and watch movies and make a nice dinner to enjoy with my spouse, than go out and deal with crazy-ass people who love drama for the sake of drama.

I really don’t need that. It serves no useful purpose. And it makes me feel even worse than I did before. So there we have it.

Anyway, it’s time to get on with my day. Life is waiting, jet lag or no.

Onward.

Back again – with lots more work to do

Back at it

It’s been about a week since I was last able to write. I’ve been traveling out of the country, as I did about six weeks ago. This trip was not nearly as successful as the last one. Well, in some respects it was — in that I was able to make some good connections with people pretty high up in the company. But in terms of working with my immediate team… not so much.

The new team I’m supposed to be a part of was pretty cold towards me and the other coworker I traveled with. So, the warm welcome from before was pretty much rescinded, and it just left a bad taste in my mouth.

Not to worry, though. I have other ways I can make the most of this situation. If I let other people’s bad behavior put a crimp in my style, then it’s my bad. It just can’t mean that much to me. At least, that’s what my objective mind tells me. My subjective mind that wants to prove that “I can do it” and wants to be on top of everything and have everything go my way, is really struggling with this shift in dynamics. It feels like I’ve failed. It feels like I’ve done something wrong and I need to fix it. All my fault. My doing. My bad. Yada-yada-yada.

Yeah, the “you’ve done something wrong” voice is loud and clear in my head, and I can’t seem to get it out. I’ve tried, but it’s a real bitch.

What I really need is a long hike in the woods. Something to get me out of my head and remind me that I am home again and spring is on the way. I need to get more exercise, period, since I didn’t get a lot while I was overseas, and I ate a lot of local desserts which tasted great but haven’t done my body much good. I need to get the circulation pumping and move some of this on through. Clear my head. Get my house in order.

One thing I did manage to do while I was away was watch some videos of TBI rehab pioneers who seem to have a pretty good idea about how TBI works and can affect your life. I found some videos of George Prigatano and some of his other colleagues at the 1st International Brain Injury Conference. He has some great things to say about the role of psychotherapy in dealing with brain injury. One of his colleagues, Harriet Katz Zeiner, talks about CRATER therapy, which – as I understand it – is a way to structure life after brain injury in ways that require less from an impaired memory, to work with survivors and their family members to support and monitor progress, and also to head catastrophic reactions off at the pass before they hijack the whole recovery process.

It’s interesting — in the past four years, I have had huge improvements in my anxiety level. I wasn’t fully aware of the intensity of my anxiety up until a couple of years ago. For years, I thought that my outbursts and freak-outs and melt-downs were totally justified because things just got so incredibly overwhelming for me, and I couldn’t — just couldn’t — deal with them.

Getting too much information to process all at one time… being put on the spot and not feeling up to the task of sorting through it all and dealing with what was going on… being challenged and taken to task and pressured… it set me off.

When I was with people in a work setting, I would just check out or walk away — on a small scale and also on a large scale. I think a lot of my job changes were reactions to things just getting too overwhelming for me, so I couldn’t deal — even if they were going right — and I “moved on to better opportunities.” On a smaller scale, I can think of countless times that I just bagged something — just quit a task that I was supposed to complete, be it a chore that my parents asked me to do, or a project that I was given at work. Either way, the result was that I just quit. Just bagged it. Fuggedaboudit. What-ever.

In my personal life, if I got too challenged and too put-upon, I would retreat into my “strong silent type” role, or I would blow up and go off on whoever was pressing me. And the people I would go off on, would get so freaked out by the intensity of my response that they became afraid of me, treated me like I was a threat. And that didn’t do much for my self-perception and self-esteem.

Then I realized that I was doing all this — you’d think I’d get a clue that this was happening with me, right? But it just didn’t register as something that wasn’t 100% justified, and that I might be over-reacting and going off for no reason. I have friends who have anxiety issues and after talking to them, I thought for sure that it was pretty much that this behavior was an anxiety issue with me — that it was psychological, being related to my thinking and how I was choosing to react to situations around me.

And that’s how I’ve been thinking about it for a couple of years, now. It’s been helpful to have that kind of mental construct. And when I look back, I can see so many instances where I got anxious and either ran from something or someone that overwhelmed me, or I lashed out and attacked.

The thing is, there was this little piece that seemed to be missing, and I found it during my trip. The missing piece, I think, is what they call the “catastrophic reaction” — an emotional outburst (sometimes accompanied by physical acting out) that is way out of proportion to the situation at hand. Sometimes, it’s an extreme reaction to an imagined problem that doesn’t even exist. Some examples from my own life — cursing a blue streak and throwing and/or breaking things when I drop something, verbally attacking someone who is just making me a little uncomfortable, or flipping out when things don’t go the way I expect them to.

That pretty much describes my behavior for years – being an unpredictable powder-keg who might say or do just about anything, if things don’t go my way.

And it comes with a ton of anxiety.

But why? What’s the big deal? Why am I so on-edge over things? Whence the anxiety? I’ve puzzled over that for quite some time, unable to see why I should be so anxious, and why it has really increased over the past years. I didn’t used to be so anxious, but “all of a sudden”… It didn’t make any sense to me. I know that TBI can seriously mess with you and your sense of self and make you incredibly anxious and self-doubting. But there was a whole concept that was missing… something that brought it all together — and I found it over my business trip:

The Catastrophic Response.

I want to write more about this right now, but I’m pretty jet-lagged, and I need to take a walk. I need to take care of some things around the house, now that I’m home, and I need to give my brain a rest, so I can function well today – and beyond.

Bottom line: This Catastrophic Response (now that I have a name for it) has been wreaking havoc with my head and my life for a while. It keeps me from approaching the things in life that I want to approach – including discussions I need to have with my neuropsych about my freak-outs and behavioral issues. It keeps me on tenderhooks of anxiety and avoidance, and it keeps me from living my life.

Seriously.

And I need to do something about it. Now that I’m aware of it, I need to do the work to address it.

So, I shall — by taking myself outside for a long walk in the woods. That should help a few things…

Managing TBI symptoms all around

Lots to work with

So, I’m headed back out on a business trip again next week, which means it’s probably going to be pretty quiet here for the next 10 days or so. I may get a chance to check in while I’m traveling, but I’m guessing things are going to be busy, so I might not get to check in.

One thing that’s been happening, which I’ve talked about before, is that I’ve been discussing my testing results with my neuropsych, comparing how I am now to how I was before. Back in 2008, when I had my first test, I was in pretty rough shape. I was struggling with a pretty constant sense of overwhelm, I had a pervasive sense that there was something terribly wrong with me, and my mental health was all over the map. I was borderline disabled… and headed in that direction, due — I’m sure — at least partly to the fact that almost all of my friends and associates were living disability-centric lives. By that I mean, they either considered themselves too broken to do much with their lives, or they devoted their lives to comforting and counseling the broken.

But in either case, their focus was on disability, wounding, victimization, and struggle. And in most cases, their perceptions of themselves and others was very similar — they not only helped wounded, damaged people, but to at least some extent, they also considered themselves wounded and damaged.

Sigh…

Anyway, the one exception to that has been my neuropsych, who has never let me get away with settling into a victim mindset, and who has really reminded me on a regular basis of what I really think about life — that it throws us some pretty intense curve-balls sometimes, and sometimes it really roughs us up, but in the end we do have the means and the ability to turn things around for ourselves and no matter how bad things may seem on the surface, we have the capacity to move on and do better.

And that’s been my experience. Truly, it has. They have helped me and offered me encouragement and information all along the way. Granted, I’ve only seen them for an hour a week — and sometimes not even that often. But they really have been a help. Because they’ve been the one person in my life who has not been sucked into the abysmal void of mistaken beliefs telling you that you have to settle for less, which I see all around me, each and every day.

I have been getting better. A lot better. My numbers are remarkably improved over last time. And we haven’t even gotten to the purely cognitive stuff yet.

What has been getting notably better is my overall functionality and my self-perception. The old depressiveness and the overwhelm is down — way down. Anxiety levels, impulsive acting on anger, social discomfort and avoidance, negative emotions, and my general sense of maladjustment are all significantly reduced — often to normal levels.  It’s literally like a light has turned on in my life. It’s like I am a completely different person on paper, and my life has gotten one of those major renovation makeovers you see on HGTV.

And yet, what all has changed? Seriously — what has actually changed in my life?

I don’t have the blindingly intense, constant headaches I once did, and the seizure-like behavior has subsided. I don’t go into anxiety/panic attacks the way I used to, and the anger and sense of confusion has subsided. But other than that, a lot of things have objectively stayed the same. I still have chronic physical issues — the pain, light-sensitivity, noise-sensitivity, balance issues, vertigo, headaches, insomnia, sleep issues, and I still find myself flying off the handle over things that “shouldn’t” get to me. I still get confused over things, I still lose track of where I am and what I’m doing, and I still actually have a lot of the 84 concussion/TBI issues that can make your life really interesting.

So, what’s changed? Basically, a few things have made a world of difference.

First, I am aware of the issues. I know I have these issues, I know that when I am not sleeping well, it affects my thinking and my sensory sensitivities, which makes life more of a pain in my ass. It’s not all this big mystery for me anymore — I’ve spent a lot of time observing my life and seeing what sets me off and what works, and after several years of serious study, I have a pretty good working understanding of what impacts me, and how.

Second, I have stopped fighting the issues. Sh*t happens. That’s just a fact. Especially with TBI. Instead of battling against the things that just are and fighting their existence, I use my energy for simply noticing that – yes, again – the sh*t has happened, and I need to respond to it, instead of wringing my hands and crying poor-me and cursing life for dealing me a crappy hand.

Third, I actively manage the issues. From my observations, I can clearly see that one thing leads to another, and I can tell when I need more sleep, or I need to wear my sunglasses when I go out. I generally know when I’m in rough shape (which is more often than I’d like, but oh well…), and I can then anticipate things going a certain way. For example, when I am very tired, I get clumsy. When I’m clumsy, I drop things. When I drop things, they often make loud noises, which startle me and set me off. So, when those things happen on days when I am tired, rather than getting completely bent over them, I just deal and move on. I take a deep breath, pick up the fork I’ve dropped and get a clean one from the drawer, and I eat my food. If I’m dizzy, I hold onto the side of the counter when I’m leaning over, so I don’t fall. And if I’m sick on my stomach because of fatigue and dizziness, I just move more slowly and eat my food at a more leisurely pace. And I get on with my day.

It might not sound like much — it might even sound very common-sense to a lot of folks — but for me, this is huge. It means the difference between

• starting out in a really shitty frame of mind, thinking I’m damaged and wrecked and whatnot, and not feeling up to much of anything… which often becomes a self-fulfilling prophecy… and
• starting out on a note that shows me that I can manage my situation just fine. It’s not ideal, but I can manage. And that certainly helps.

You know, it’s funny — while we were going over my test results, my neuropsych was saying how my physical problems had been really reduced almost to non-existence. Au contraire. Sure, they don’t ruin my life like before, but they are still very much there. They’ve been there for as long as I can remember. I’m just doing a hell of a lot better job of managing them, of dealing with them, of working them into my daily life, than ever before.

Again, being aware of them and realizing how they fit into the overall constellation of my life, how they shade my existence and contribute to things like anxiety and overwhelm and difficulties with thinking and processing information on the spot, has made a huge change. It’s not that I have this identity as a disabled person who cannot do anything much with their life. I have an identity as a human being who can do a lot with what they have, despite the issues that come up on a regular basis. I manage my TBI issues all around, and while it’s not my favorite way to live at times, it still gives my life a unique and very hopeful feel.

It pretty much sucks that I have these issues, and that they show no signs of going away permanently. But at the same time, I usually know how to handle them, so even though they’re there, they don’t have to ruin — and run — my life. They’re just there. Background noise. Oh, well. If nothing else, they are an opportunity to learn.

So, the bottom line is that things aren’t perfect. When are they ever? But I can manage. I do manage. Personally, if something has to be wrong (and part of me think there’s always gotta be something), I’d rather have it be this, than something more terrible that is insurmountably soul-sucking. There are plenty of folks who struggle in pain they cannot identify or address, and I’m not one of them. Not anymore. I struggle, sure, but after years or work, now I can identify the real source of the pain, and I can sure as hell do something about it.

So yeah — onward.