DIY OT for TBI

The magic koosh ball

When it comes to TBI/concussion recovery, we are so very often on our own.

We frequently don’t get the rehab help we need because:

  1. we don’t realize we need it
  2. we under-report our symptoms so they go unaddressed
  3. the people around us don’t recognize the signs
  4. our medical care providers don’t have a clue
  5. long-term options for ongoing treatment aren’t always great
  6. different sorts of therapy can’t go on as long as we need them (insurance won’t pay)

Now, most of us reading this know that. What we don’t always know is what to do about it.

I have found a number of “occupational therapy” (OT) solutions for myself that — in addition to getting regular feedback from a trusted source — have really moved me ahead in my life. They are simple, they address basic issues I have (but nobody realizes this, or they think I “shouldn’t” have), and they are practical — and fun — things I can do for myself, each day, to get myself on the good foot.

Some of these things are:

  • Making lists of what I need to do — especially things that I do regularly, that I screw up regularly, like get out of bed and get ready for work each day. When I started my TBI recovery process, just getting from the bed to the office each day was a bit of a gauntlet. I began using a list of all the things I needed to do — in the order that I needed to do them — and it solved a lot of issues for me. Things as simple as the order in which I brushed my teeth, showered and shampooed, got all jumbled up, and I spent way too much time thinking about “what comes next?” to have a very relaxing morning. A list of the most basic activities solved that for me. Even though people around me said having a list was too “remedial” for me — I knew it wasn’t. It truly helped me.
  • Cooking — breakfast and dinner. Again, this is about doing things in order at the right time. I have been the main cook of the house for years — ever since my spouse got seriously ill in 2007 and could not function as well as they used to. I started my TBI recovery about a year after that, when I realized that there was something very wrong with how things were fitting together in my head. Cooking helped me with organization, and timing things out. It also helped me with my emotional regulation. Years ago, if I was in the kitchen, nobody could talk to me because it would throw me off and I would mess up what I was doing. It’s been several years, since that stopped. Now I can have a conversation while I am cooking, most of the time. And when I can’t, I now know enough to say I can’t talk now, but can later.
  • Dual N-Back training — helps with response times and short-term working memory. It helps me think more “fluidly”, and it helps me follow conversations better. It also helps me interact with others more easily — and I am noticing this after only a week’s worth of work — so that is a huge help to me socially and in general. It gives me more confidence, it improves my self-image, and with my Brain Workshop program, which I have on my computer, I can do it whenever I like, without needing to be on the internet. I also have one for my smartphone, and I need to get one for my tablet, so I have it on the go, as well. It has really helped me, and I keep doing it each day.
  • Juggling — this is also a new one for me, which is a welcome addition to my daily routines. It helps me with
    • eye-hand coordination
    • timing
    • being able to pick up quickly after mistakes and move on without getting bent out of shape
    • dealing with frustration — not getting so upset over disruptions
    • physical stamina
    • left-side abilities
    • left-and-right-side coordination
    • sustained focus
    • resistance to distraction

    Probably more than anything, juggling has helped me gain a new balance and poise in my outlook and abilities. After just a couple of weeks of training, I am really enjoying it AND I am seeing the benefits in my outlook and my fluidity. It is helping me to keep calm in situations which normally fluster me, and that did wonders for me at my interview — which turned out successful on every single count. Six out of six people want me to join the company, and that’s a great testament to the power of just some simple exercises I do for fun and conditioning.

These four things are all DIY — Do It Yourself. They are also either free or extremely low cost, and some of them are part of everyday living — like cooking and making lists.

The one thing that determines the success of these approaches, I believe, is motivation and consistency. You have to do them, and you have to keep at them. You can’t just do them now and then, and take a long break to do something else. You have to really commit to them — like anything important — and be willing to learn the lessons they teach.

That commitment to work and to steady improvement — more than anything — is probably the biggest ingredient in all of this. Without that, none of these DIY techniques would work. In fact, it’s probably even true that just about any activity in the course of the day-to-day can be DIY TBI OT.

But juggling is a fun break.

And dual n-back has specific things it trains in your brain.

So these are good foundations to get the brain rewired in a positive direction.

 

 

 

 

 

TBI Anger Hack – from cracked.com

Cracked.com has a great piece on 5 Brain Hacks That Give You Mind-Blowing Powers. The title is a bit overblown, but it hooked me, so I picked up some tricks… and found this useful piece of info. I’m going to add it to my collection of lifehacks to deal better with all the crap that gets sent my way. The principle is the same as with intermittent fasting — which helps me with my self-discipline and helps me learn to better manage my internal state when I’m just a little stressed. Here’s what they have:

#2. Control Anger by Using Your Less-Dominant Hand

Hemera Technologies/AbleStock.com

Everyone knows at least one guy who hulks out over the stupidest things — a messed up coffee order, a red light, global warming. Usually these people are just harmless joke fodder until they road rage on an elderly person over a politically charged bumper sticker. If you don’t know one of these people, consider that it might be you.

Of course, there are all these tricks that your mom taught you that are supposed to calm you down (“Stop and count to 10!”), which of course don’t work because in the moment you’re enraged, you can’t think logically anyway. What you need is to beef up your anger defenses before it gets to that point.

Hemera Technologies/AbleStock.com
“Somebody stop me before I rob a sperm bank and make this town disgusting.”

The Hack:

This one comes from the University of New South Wales, who found the perfect anger-management trick, and it wasn’t cool jazz music or playful kittens wearing sunglasses. People who had anger issues were asked to spend two weeks using their non-dominant hand for anything that wouldn’t endanger anyone: opening and slamming doors, writing hate mail, pouring coffee, and other dirty activities that are now crossing your mind. After two weeks, the subjects could control their temper tantrums better, even when other participants deliberately insulted them to get a reaction.

Why would this possibly work? Well, looking at angry people under brain scans shows that outbursts are less about too much anger and more about depleted self-control. That’s both good news and bad news. The bad news is that self-control is a finite thing, and you can run out of it. The good news is that it’s a physical mechanism of how your brain works, and you can strengthen it (or hack it into working better).

Digital Vision/Digital Vision/Getty Images
“Fudge you, mother lover!”

Now, you’d assume that the only way to do that would be some kind of meditation or long classes in anger management. Or maybe to pay somebody to make an annoying noise in your ear for hours at a time and slowly decreasing the frequency with which you punch them in the head. But it turns out it doesn’t take anything like that — just asking these people to use their clumsy hand to do everyday tasks forced them to deal with hundreds of tiny, totally manageable moments of frustration. But that was enough to make them somewhat immune to it.

So, when things got ugly, suddenly they found that the walls around their internal anger demon were stronger. And it’s probably also calming to know that if things get so bad that a gunfight breaks out, you’re now capable of dual-wielding that shit.

BananaStock/BananaStock/Getty Images
“Oh, hey, you are totally correct. The grass is indeed purple. My mistake.”

Watching within

“You’re feeling sleepy…” No, I’m NOT!

So, this year is off to a roaring start. I’ve already had a few situations of hurting people’s feelings — that escalated from people being super-sensitive to something I said, or how I behaved.

I will admit, I have come on very strong at times, and I have had a little “scorched earth” action, where I felt like I was either being threatened or disrespected.

Yeah, I’m not much for being threatened OR disrespected, and I will react if it seems like that’s happening. I have to watch myself, though, because that can cost me — in damaging existing relationships or nipping new ones in the bud before they get a footing.

The thing is, I need to make sure I don’t over-react, which I can certainly do. Especially if I’m not paying attention to what’s going on inside my head and veins and autonomic nervous system, I can quickly switch into survival mode over some interpretation. In some cases, I need to be in survival mode, but I don’t need to completely scorch the people who I perceive as a threat, like Smaug laying waste to so many Middle Earth towns.

Yeah, gotta watch that. Particularly when I am tired and stretched.

I had a couple of tricky situations this past week, during the conference. Even before I left the airport, I had sent an email to a colleague who is also a good friend, which really hurt their feelings. I was reacting to them running their mouth and getting me in trouble because they don’t know how to be discrete about sharing information with upper management before it’s been fully analyzed. They let a few little factoids slip, and the uber-uber-boss got wind of it and proceeded to tear my boss a new one, over what was really nothing.

Geeze. And this after I’d specifically told this person to NOT share information with the uber-uber-boss. God help us.

Anyway, the email I sent was terse, abrupt, and pretty harsh. The situation called for it — something had to be done to keep them from continuing to run their mouth. But then they got all worked up over it and pitched a little hurt-feelings hissy fit, and then it blew back on me and I had to spend days patching things up. If they’d been able to keep their mouth shut, this never would have happened. But the individual who “over-shared” has impulse control problems. They always have. They get carried away and say and do things that make them extremely difficult to deal with. I don’t doubt for a minute that it’s due to them having sustained a severe brain injury when they were younger — they got thrown from a motorcycle and landed on their face and spent the next week in a coma, then had to learn to do everything — walk, talk, function — over the course of several years.

When they get tired and out of sorts, all the standard TBI stuff comes up — impulsiveness, outbursts, emotionality, aggressiveness, confusion, disorganization… and last week, when I sent that email, they were coming out of an extremely long week that was a prime recipe for TBI meltdown — for both of us.

Because I was tired, too. And under pressure. And I wasn’t minding my P’s and Q’s, and I let things get out of hand. I wasn’t the bigger person, and I took matters into my own hands, and the result was not pretty. It’s human, it’s to be expected under the circumstances, but I don’t want to do it again anytime soon.

The second experience I had was at the conference, when I met up with some old friends whom I hadn’t seen for a long time. One of them brought their new love interest with them, because they wanted to introduce them to me and my spouse. After an initial contact at the hotel that was pleasant and friendly, I had to run out and take care of some more things, then I came back, and we spent more time all hanging out together.

That’s when things got dicey. The new Love Interest started telling us about themself, and the more I heard, the less I liked. First of all, they had dredlocks, which is a huge flag for me with white people. Something about white people wearing “dreds” pushes a bunch of buttons with me, partly because every white person with dreds I’ve ever known has come from a privileged background and they live their “alternative” lives scamming off other people. This is only my own limited experience, but every white person with dreds has given me attitude about being part of the “system” and selling out for my full-time job and my house and my regular life.

It makes me insane. Partly because I work in the “system” and have a full-time job and house and regular boring life, because it’s the only way I can function under my circumstances. I need routine. I need predictability. I need a full night’s rest, or I cannot function. At All. This isn’t by choice — it’s by necessity. Certainly, I would love to be able to come and go as I please and be all alternative and what-not and “live my dreams” and “embody my passion” however and whenever I like.

But for me, that’s a recipe for disaster. My brain is such that if I don’t have regular routine and predictability and a whole lot of really boring stuff giving structure to my life, I lose it. It’s not pretty. I become extremely difficult to live with — as the Love Interest found out.

So, there I am, hanging out with people I really love and care about, and here’s this dredlocked person making snarky comments about “white people”. As though they’re not white. And they start talking about their past, moving around here and there. Back and forth all over the world. USA – China – South America – Europe – Asia – back to the US – all over. I guess I got a bit jealous, because that’s the kind of life I would rather be living, but circumstances demanded different choices from me. It’s a little rough to move around the world all the time, when your spouse is disabled and ill, they depend on you to survive, and you can’t keep a thought in your memory for longer than 15 minutes.

According to my spouse, I got pretty aggressive with this Love Interest, firing off questions about where they lived and when. Thinking back, it was definitely an Alpha-situation, with me standing over them, like some interrogator, bombarding them with questions. At the time, I was so caught up in learning more – I actually wanted to hear more about what they did, and when. At the time, I didn’t intend to be aggressive. At least, I don’t think so. I was actually really interested in hearing what they had to say. I wanted to hear more.

But it wasn’t perceive that way, and apparently I made everyone in the room very uncomfortable. I was clueless that people were uncomfortable. I was just focused on hearing more, because my life has been so incredibly uniform and established for the past 20 years.

At the same time, though, there were some alarms that were going off in my head — so maybe I was being aggressive.

The first alarm was the dreds. The second alarm was the Love Interest trying to sell my spouse on their services doing “neurolinguistic programming” — a/k/a hypnosis — to solve some of their mobility issues. My spouse has some serious and long-standing mobility problems due to back and leg pain, and many people have told them it’s because of some emotional block or unresolved issues. Personally, I think it has more to do with them just not moving enough and not strengthening the right muscles to support their frame. They also need to lose about 30 pounds. Most healthcare professionals we talk to, feel exactly the same way. But lo and behold, here’s yet another “alternative healthcare practictioner” trying to sell my spouse on mind control techniques to solve their physical problems.

Of course, it couldn’t be done in just one session. But after an “intake interview” they could continue to work over the phone at any distance. The rate was $100/hour.  No insurance coverage available.

So, yeah, here’s this individual who’s living on the margins, pretending to be something they are not, just flitting around doing as they please, subtly slamming people like me, and they’re trying to hard-sell my spouse into signing up for hypnosis, which of course I will be paying for out-of-pocket, if it ever happens. On top of it, they’re talking to my spouse about working together to create some sort of alternative event, and I’m getting a sickly deja-vu in the pit of my stomach about all the other marginal folks my spouse has tried to work with who started out seeming so alternative and progressive, and just turned out to be nutso, flighty, opportunistic users who thought they could take advantage of the “rich” people with the salaried job, the house, and the two cars in the garage.

Come to think, of it, I’m surprised I was as polite as I was, that night. If I had really been aware of how I was feeling at that time, I probably would have 86’ed them, or called it an early night.

But like I said, I was pretty clueless about just how threatened and aggravated and antagonistic I was feeling. I was in the “zone” — or so I thought. And my memories of the evening were totally different from how my spouse describe them to me later.

Anyway, the rest of that evening went slowly downhill. I was actually feeling pretty strong, that night, and I had a good time catching up with my old friends. But the Love Interest became increasingly withdrawn as the evening went on. They wouldn’t make eye contact with me, and when we rode back to the hotel, they made sure to sit far away from me. It was weird. I mean, I tried to reach out and talk to them, but they kept their distance. Maybe because I was a representative of “THE MAN”, and/or I wasn’t playing along with their alternative role-playing game.

In the end, they barely said good night to me, and they were obviously glad to get away.

I feel badly about the situation — mostly for my friends, who were obviously fond of the Love Interest. To them, they were wonderful, from what I could tell, and it seemed like they did really care about each other. But my shields went way up – to 110% – with this person around, and I was NOT going to have my spouse snookered into yet another boondoggle that was expensive, time-consuming, far from guaranteed, and happening on the other side of the country.

Yah, not gonna happen on my watch.

Looking back, I realize now that my instincts were pretty accurate. I was “tuned in” to what was going on beneath the surfaced, and I took corrective action without going ballistic. I could have gone ballistic, under the circumstances. The warning signs were written all over the situation. But aside from some pointed questions and uneasiness-provoking directness, I didn’t go all Rambo on the Love Interest. I just made it clear that I was not buying what they were selling, I didn’t just agree with every little thing they said. And I didn’t give a shit if I did piss them off.

My friends were certainly uncomfortable, now that I think about it, and they should be. Because here is someone they ostensibly love and trust, who is probably using them for their own selfish purposes. And I hate seeing that happen to anyone I care about. My friend who is dating them has fallen in with questionable people before, and they are extremely susceptible to users like this. I’ve seen it before, and it appears to be happening again. I think it has to do with some sort of guilt from their parents having money and being community leaders, and them wanting to reach out and help the less fortunate.

In my experience, the “less fortunate” can sometimes get that way because they would rather scam others than take responsibility for their lives. And I hate seeing good-hearted people used by those kinds of scammers. So, to stand by and do/say nothing and act like everything is hunky-dory… that’s not an option for me.

This isn’t a game, folks. This is life. I know that my friends come from money, so they will always have someone to help them, should things go sour for them. They can afford to fritter away their days and years without terrible consequence (like for me and my spouse). Their parents keep them well provided for, even well into adulthood. But can we really afford to squander our lives — our precious, precious lives — on people and experiences that constantly take, and do not give?

There is so much that needs to be done in the world, and it makes me absolutely NUTS to see the talented, gifted, intelligent people in my life frittering it all away on people who take advantage of their good hearts. They fritter it away to rebel… for entertainment’s sake… or because they don’t realize just how precious and rare their talents and gifts and intelligence really are.

What a waste.

Unfortunately, I can’t spare my friends from their poor choices in love mates. But at least, in this case, I didn’t allow the User to “attach” themself to my spouse and come home with us. Yes, people got their feelings hurt, and yes, people were really uncomfortable. But I can sleep better at night, knowing that there is no way in hell that predatory parasitic Love Interest is going to come anywhere near my family again.

They tried to work their NLP hypnosis magic on us, and it didn’t work. I saw through it and took corrective action. I wasn’t consciously aware of the details at the time, while it was happening, but I went with my gut and my instinct, and as it turns out, I was — as they say — Right On, Man… Right On!

Breaking my fast

I get to eat the good stuff again

I had a good fasting day yesterday. I managed to get through the entire day without blowing up. I got a little frayed, at a couple points, and I got pretty revved over some things. But then when I stepped away from the situations, I was able to calm myself down and chill.

Sometimes, that’s all it takes for me — removing myself from the tense situation (if I can) and chilling out. I check Facebook or look at my email or I read one of the books I’m working on.

Part of my irritability was fatigue-related. I only got 5-1/2 hours of sleep the night before. I just woke up at 5:30 and I was awake. I didn’t feel really tired or out of it. I was just awake. So, I got up and got on with my day. I lay down later and took what was supposed to be a 1-1/2 hour nap, but I slept through my alarm and my spouse woke me up an hour later. So, I added 2-1/2 hours to my sleep quota. And I even got to bed before midnight last night. too.

Breaking my fast was interesting. I was starving by the time I had supper at 7 p.m., but I didn’t go wild with stuffing myself with all sorts of junk. I had a decent sized dinner with meat and starch and vegetables, then I had a piece of chocolate, a natural fruit popsicle, and some frozen cherries. I’m finding that frozen fruit really does the trick for me, as a snack. It’s not full of processed sugar, and since it’s frozen, it takes a little “doing” to eat it. It’s not like I’m just pushing cheap carbs into my face. I’m actually consciously having a snack — that starts out too cold to eat (I’m very sensitive to cold)… then it melts gradually, and I can slowly eat it. Not only does the slow pace curb my hunger, but it also gives me something to do with myself and my attention while I’m snacking.

I did quite well with breaking my fast, and I’m very happy about it. I’m even happier that I didn’t spend the day in emotional turmoil, the way I did, last time I fasted. The last time I fasted, I felt like a raving lunatic all day, and all I could think about was when I was going to get to eat next.

Yesterday, though, I kept it together pretty well. And I had a lot of energy. It was intense, focused energy that makes me feel a bit like the posters I see of Bruce Lee — coiled, intent, and ready to spring into action. This kind of energy makes my spouse nervous, and they switch to “high alert” when I get that way — even if I’m not going to do anything frightening, they are still on alert around me.

I probably need to learn how to manage my energy levels when they are that high, and that intense. I know I can get pretty revved at times, and I don’t always handle myself well. I fly off the handle, I say and do things that I regret later. Fortunately, I didn’t act on anything yesterday.

And that’s good. Because last night there was a situation that could have gotten out of hand, had I given in to the impulse that came up in me. I was in heavy rush-hour traffic, and some a-hole was riding my ass for a ways. I pulled into the right lane to let them pass, and they pulled up beside me. Then they came over on me, like the were trying to push me off the road. I honked and fell back and let them get ahead of me, and I put my brights on, so they would get the message that I was not pleased. And then they turned off to the right into a parking lot.

At the time, I wanted to follow them into the parking lot, pull out my jack, and break out their headlights, smash their windshield and beat them senseless. Insane, right? Well, it’s one thing to think it — lots of people do. But last night, I did NOT do that. I wasn’t even close to doing it, as I just let that thought come up… and then disappear. I did not follow the thought, and I did not follow that person into the parking lot and I did NOT assault them. Not even close. The idea came up, and I let it go.

This is progress. Just a few weeks ago, I got into a verbal confrontation with a police officer for legitimately pulling me over. They had every right to pull me over, and they were actually really decent with me, giving me just a verbal warning. This time, I had every right to be angered by the behavior of the other driver, but I did not put myself into a situation that could have gone really badly. I didn’t even take that thought all that seriously. It’s just what came to mind. And it went away because I didn’t give it any more thought. I just let it come up… and I let it go.

After all, who knows why that person was behaving the way they were? Maybe they were an a-hole, or maybe they were a frightened parent, rushing to their sick child… or a newly single parent whose own parents were not well, and who needed to catch a flight out of town to get to their bedside. Maybe they had a really bad day at work and weren’t thinking properly. Maybe they had been drinking and were dangerous, themself. Maybe they were just intensely distracted, being on the phone and not paying attention to what was going on around them. There are a million different explanations why they might have acted as they did. But I picked the worst case scenario and could have gone for it, had I actually held onto that idea and focused on it and made it into a “thing”.

Instead, I was able to just watch it come up, and let it go… And away it went. So, here I am, a free person, walking around without having to post bail. 🙂 As Martha Stewart would say, “That’s a good thing.”

This is where the mindfulness / sitting / za-zen / breathing meditation stuff comes in handy. Also the exercise, which helps me direct my energy somewhere positive, instead of getting “backed up” to where it’s making me crazy and dangerous. Meditation and weight training trains my system to not follow every single impulse that comes up. It keeps me focused and grounded and level-headed. That keeps me out of trouble. It keeps me out of jail. And that’s a good thing.

The last thing I need, is for my impulses to land me in trouble with the law — and ruin the life of someone who may have had a family emergency they needed to handle. That’s not how I want to start the year. 2014 needs to start on a good note, and me not giving into that road rage was an excellent start.

Onward.

All that I have gained

What was … and what will be…

Happy New Year everyone! I am feeling quite positive about this coming year. 2013 was a bear — for me, as well as many others I know. I’m none too sad to see it go, and after that “inoculation” experience with all the crappiest of crappy crap that came down the pike, I feel like I’ve developed sufficient scar tissue to move on.

Yesterday I had to work again — I used up one of my year-end vacation days to run errands, a few weeks back. So, it was a mini practice ramp-up for the new year. It was pretty good. I got to just settle in and take care of some things, close down a handful of pending items, and get a jump on the next year’s activities.

Most of my work time yesterday was spent in planning — thinking through what needs to be done, and how it needs to get done — so that when I actually can do it, I don’t have to think too much about it, and I can just go. I hate getting stuck in that analysis paralysis situation — taking time off busy work to really strategize and plan my approach helps me avoid that pitfall.

I spent a fair amount of time, over the past few days, thinking about my past years of TBI recovery. I have been through a number of distinct cycles after my TBI at the end of 2004 (holy smokes has it been almost 10 years?!):

  1. Dissolution and Oblivion — things unraveled and I had no clue that anything was actually wrong in my life. Blow-ups, melt-downs, increasing forgetfulness and volatility, worsening physical fitness and balance, poor financial decisions, difficulties sleeping and eating properly…  things just dissolved around me, and I did not perceive that it was so. As far as I was concerned, it was all because of things other people did, and my reactions to what they did were justifiable, because, well, there was nothing at all wrong with me.
  2. Dawning Realization — when I realized that my money had disappeared and I didn’t understand why, it sank in that something was “up” with me. Oddly, none of the other signs registered with me. My realization was more about money in the immediate present, and also about all the difficulties I’d had as a regularly concussed kid, growing up with multiple TBIs. All of a sudden, certain things seemed quite off, and I knew I needed help.
  3. The Quest for Answers — I embarked on a full-throttle quest for answers to what was going on with me. I didn’t even know exactly what was “up” — just that certain things were not right, and I had to figure it out, or I was going to lose everything. I kept voluminous notes about my life experience, I sought out every conceivable avenue for learning about and understanding what was happening to me. I scoured the internet. I read medical study after medical study. I looked for websites. I plumbed the depths of my local library system. I collected binders full of notes about concussion and TBI and my own personal experience, and I made daily lists of all my symptoms, what I was doing about them, and whether or not things worked for me. I watched for patterns in my experience, and I spared no detail in describing my life, from the inside-out. I went down a lot of dead-ends, and I incidentally decided that I suffered from a variety of disorders, based on passing input from numerous people, which made me look like a raving lunatic to the professionals to whom I turned for help. I endured a number of truly humiliating encounters with suspicious experts, who could have really done me harm, had I given them the opportunity. This was both the most intense and the most frustrating and anxiety-producing part of the process — but it kept me going, because I had a mission and a purpose. And I was not going to take “no” for an answer, till I found the help I needed.
  4. Building a Foundation — when I finally found a neuropsych who could help me, I had a neuropsychological assessment, which was a several-day affair that tested my memory, processing speed, and a number of other aspects of my functioning and behavior. That showed both of us what was really going on with me, and it pointed towards the things that could be addressed. It also showed what was NOT wrong with me, and it steered me away from this wholesale decision that I was 100% broken and had more problems than I knew what to do with. It was about finding out both what was wrong and what wasn’t, and figuring out what direction to go from there.
  5. The path to normalcy — I’ve never actually been “normal” (that would be boring!), so this part of the process was about just getting some stability back into my life. I had jumped ship on a number of jobs, since my TBI in 2004, and my years of stable employment for 10 years prior to that was in serious jeopardy, by the time I started working with my neuropsych. I had taken a string of short-term assignments, and I had ditched a permanent job after just three months of discomfort, and none of that helped my case, when I went job-searching. Over the course of the first few years working with them, I went through several more job changes, but I developed a good routine for my days, and I made some significant improvements to my life that got me out of constant fight-flight mode. Getting normalized meant getting off the roller-coaster of reacting to every single emotion that came up, and learning to make choices based on my own wishes and plans, rather than as a reaction to everything that (I thought) was going on around me.
  6. Real progress — this started to happen, as my life became normalized. The wild ideas about all the different syndromes I had, subsided, and I was able to see beyond the immediate reactions to events taking place in front of me. I was able to better think in terms of what I wanted my life to be like, rather than how I didn’t want it to be, and I was able to take real, substantial steps to making my plans a reality. I was able to land — and keep — two good jobs that looked good on my resume, and I was able to leave the first one for the second because of a legitimate, publicly defensible reason, rather than just panic that I had to excuse away to recruiters and friends and family. It has not been easy… there have been a number of plateaus, when I felt like I wasn’t making any progress at all… and it’s been quite a challenge to keep steady in the midst of all the storms. But I feel now like I have come through to the other side in a big way, and I’m able to hold my own, no matter what the outer circumstances around me. This is huge. After a lifetime of being pushed and pulled by every little wind, after being beaten down by one defeat after another, and deciding that there was no hope for me, I can now hold my head up and stand tall, knowing that I do in fact have the inner resources to withstand the storms of life — without becoming a danger to myself and those around me.

So, that’s where I am today. Standing tall on this first day of 2014, grateful for all the help I have received over the past years. There have been a lot of low points, and sometimes I felt like I was never going to get out of that dark abyss, but I have persevered, and I have come through. The hard times, the boring times (probably even harder than the hard times), the exciting times, the mellow times, the exhausting times… it’s all been a part of the whole picture.

Yes, I’ve been sleep-deprived and anxious. Yes, I’ve been in a lot of pain. Yes, I’ve been angry and raging. Yes, I’ve had run-ins with the police and other authority figures. Yes, I’ve gotten in trouble, and I’ve covered for myself — which has made it harder to get me the help I need. Yes, I’ve been really confused and unable to clearly formulate real questions to truly understand my situation. Yes, I’ve been down one dead-end after another, and I’ve had some really bad experiences along the way.

But I’m still here. And for all the bad times, there have been good ones, as well. I can now leave my house and walk for hours in the forest without losing it and running home in a quivering mess of tearful anxiety. I can hold extended conversations with people and understand what people are saying to me — and ask for clarification when I need it. I can spend a relaxing week with my spouse without both of us losing it. I can hold down a job and stay steady enough to let people see my true worth over time. And whatever comes my way, I can break it down into manageable pieces to handle one at a time.

Now that I look back over the years, I can see how beneficial it has all been, even if it has not been the easiest or most pleasant at times. The hardest lessons were the ones most worth learning. And they are the ones that will stick with me the most.

And looking forward to the new year — and all the years beyond — I feel a great deal of hope. There are many, many individuals suffering on a daily basis from concussion and traumatic brain injury, as well as acquired brain injuries like stroke and viruses. Along with it, comes PTSD, all too often. There is so much suffering, and it too often takes lives. And yet, I do believe there is hope. For all of us. I know there is for me, and I hope I can pass along some of that to others. Maybe someone in pain will find their way to this blog and find their own hope. Maybe someone in need of answers — or just hearing what another person is experiencing — will find their way here and get a little of what they need. Maybe someone who knows someone who is struggling, will pass along this blog to them, so they can find a kindred spirit.

That’s about the best that I can ask for — that my life stays real, and that I can keep on sharing my own experiences…. and hope that good will come out of it all.

And now, for 2014… Onward!

Six years and counting

How time flies…

Today is the six year anniversary of this blog. To say that it has changed my life for the better would be an understatement.

Six years ago, I was at my wits’ end, unable to make sense of my life or understand why everything that once was so familiar, now seemed so strange to me. I was in a pattern of learned helplessness that kept me stuck in behaviors and choices that sabotaged me on a regular basis.

I was convinced that I could not understand what people were saying to me — and never would.

I was convinced that I was a total loser who was good for nothing.

I was battling difficulties with balance and distractability and agitation and irritability and aggression that shredded relationships and put my marriage in dire danger.

I could not read and comprehend what I’d read, and I couldn’t remember a plot line of a book from one page to the next.

I had become slightly dyslexic, getting letters turned around when I wrote.

And I could not keep a job. My life was a shambles, my money was disappearing on a regular basis, and people took advantage of me – left and right – because they could “smell” that I was an easy mark.

To say that this has changed would be an understatement.

I now know how to listen so I can understand what people were saying to me — and ask for clarification when I need it.

I know that I am NOT a total loser who is good for nothing. I have a lot to offer, and I have what I would describe as a very successful life.

I know how to handle my difficulties with balance, I understand what exacerbates my distractability and agitation and irritability and aggression, and I know how to head off problems before they trash my relationships and threaten my marriage.

I can now read and comprehend what I’ve read, and I can remember a plot line of a book from one page to the next.

I am still slightly dyslexic, getting letters turned around when I wrote, but I don’t let that stop me or hold me back. I just make the corrections and move on.

I can keep a job. In fact, I have won awards at my job. My life is no longer a shambles, my money situation is turned around and I have much better handle on things, and I am learning how to change my behavior and outlook so that people cannot take easy advantage of me – because I am learning how to be a “hard” mark.

It’s pretty amazing, when I think about it. And I’m profoundly grateful for all the good I’ve received in the course of the past six years, as I’ve pursued this journey of TBI recovery.

Many of you have helped me a great deal – both by supporting me, sharing your own stories, or calling “B.S.” on me, when I was being ridiculous. I have learned so much from you, as well as from my own life, and I have been truly blessed by this whole blogging process.

So, that being said, thank you all for your contributions and continued support here. I wish you all the very best of New Years — and an amazing year to come.

Onward!

Steady as she goes…

It’s not always going to be smooth sailing

I had a bit of a revelation, this morning. I’ve had a pretty rough 48 hours, and it’s gotten me thinking that maybe I should take my neuropsych up on their offer to help me find a medication that will take the edge off my irritability, so my temper doesn’t flare so violently.

They say that they can manage the dosage so I will have very few side-effects, which I’m taking with a grain of salt, because I have never taken a prescription medication that didn’t have side-effects, and I’ve had some pretty hair experiences.

The thing that really worries me about using meds to take the edge off my experience, is that I may become dependent on them, and if by some chance they get taken away, I forget to take them, or I (like so many other people) decide I really don’t want to be on them anymore, then I will crash even harder, and some serious damage will get done, not only to myself but to others around me. I have such intense “fits” of rage, that it really frightens me after the fact.

While I am in the midst of it, I do not care. There is a coldness to me that doesn’t care who gets hurt or how it affects anyone. I have no empathy, I have no compassion, I have no patience, and I have come close to breaking things in my home (where I literally cannot afford to break things, because I don’t have the money to replace them). Over the past couple of years, things have gotten worse with me, and my outbursts are becoming even more violent than before.

Maybe it’s me, or maybe it’s my spouse, who gets so afraid. I think it may be me. I will need to check with my spouse on this, to see what they think. Again, I need to take what they say with a grain of salt, because it doesn’t take much to frighten them.

I do know that I have had several pretty intense blow-ups in the past weeks, and I had a run-in with the police that could have ended badly for me, had I followed through on what I intended to do — actually seek out and verbally challenge an officer who pulled me over one night for a broken headlight, after they gave me a warning and sent me on my way. I was going to find them and give them a piece of my mind, later on that night. Crazy, right? Well, it seemed like a good idea to me at the time. Fortunately, I did not do it. Or I might be writing this from jail.

Anyway, all this has got me thinking very seriously about how I handle my stress and the situations in my life. I am concerned that I may start acting out at work, with the increased pressures of my position in the new organization. I am concerned that I may do the same sorts of blow-ups that I have at home — that cost me my job in the past, and it will not help my current situation one bit. I have mentioned some things to my neuropsych — and yes, they have suggested a medication to help with the moderation of my agitation.

Once again, I’m concerned that I will become dependent on this for my well-being, and that gives a pill and the medical establishment control over me, which I do not want. I understand that many people are helped by medications. I have no problem with others taking them. I just feel very vulnerable about the thought of doing it myself.

So, I need to find a way to navigate these stormy seas, and better manage my stress and my behavioral responses to pressure. It does no one any good for me to assault people or tangle with the cops. It achieves nothing. It seems like such a good idea at the time. Just a relief — a release… but it can end up with me in some pretty hot water. I need to find a way to #1 keep my stress levels manageable, and #2 keep from letting every internal storm carry me away.

I have done meditation in the past, and I have done sitting practices that helped me keep my fight-flight balanced. I haven’t done that in a while, and I’m sure that’s not helping me. So, I need to get back to that regularly.

In the moment, too, I need to have a coping mechanism that will chill me out and keep me from going overboard. I think of a ship at sea… and I think about the sailors aboard who are navigating. Just steer the ship, keep the sails trimmed, and just keep on board… and hopefully the storm will eventually pass. There is nothing the sailors can do about the storm — it is just there. They simply have to keep steady as she goes, and take care of the basics, to keep the ship righted.

That’s what I need to do for myself – just keep my ship from capsizing. Focus on the essentials, the basics, and keep going. Just keep going. Don’t get worked up over the fact that a storm has arisen — just accept that it has, and keep my “ship” from capsizing due to my own emotional upheaval.

See, this is the thing — emotional volatility (or lability) just comes up. It just happens, as a result of many factors, some of which can be controlled, others of which not so much. If I can see the inner storms that wrack me and rake me over the coals, as something outside myself that just happens — as a storm that comes up as I’m sailing through my life — that makes it less about me being damaged beyond repair and makes it about me dealing with an external force — like thunder, lightning, high winds, high seas — to keep myself afloat.

When I have an image in mind, it helps. Like when I was going to take on that cop — I was this close to pulling into the parking lot where they were lying in wait for more motorists like myself, when I had a visual of a video of one of those “world’s dumbest criminals” who was acting like a complete mad person with a copy — on camera. I watch those “world’s dumbest” shows for a laugh — and this time it probably saved my ass, because I had a very clear sense that if I did take on that cop, I would look a lot like that idiot I was laughing at, not very long ago.

So yeah — visuals. Video clips in my head. I also need to break out my old copy of “Two Years Before The Mast”… or get the DVD of “Captains Courageous” from the library… and get some of that imagery in my head.

Because it’s no good for me to hurt the people I love, or end up in jail, or trash my home, because some storm comes up.

And I don’t want to take a pill to stop this.

 

 

 

 

Recovery Day… #2

Watch out… a “day off” doesn’t always mean good things are going to happen

So, yesterday I had a recovery day from my week before. More or less. I did some work in the morning and I took it easy in the afternoon and evening. I even got a nap and a walk in. The weird thing is, later in the evening when things were winding down, I had a melt-down and went off on my spouse over some stupid sh*t that didn’t amount to much of anything. And it was partly a misunderstanding, anyway.

It’s like someone put a match to tinder, and I was off — flipping out and really reaming them in ways that only I can do. Of course, it doesn’t help that my spouse has a bunch of issues of their own, and those issues come front and center whenever I start to get edgy. They grew up in a very edgy household, so whenever I get “that way”, all their old memories kick in, the old neurological wiring starts to fire, and they start interacting with me like I’m their abusive parent. It escalates rapidly, and all the while, I’m thinking, “I’ve got to stop this – I’ve got to stop this – I’m sliding into that hole again – I’ve got to stop the slide – gotta stop…” to no avail.

I can’t stop it. I say things I don’t mean, and they hear things I never say. It becomes a crying, screaming, shouting, stomping, roller coaster of acid madness. And the emotional hangover lasts for days.

Crushing. For them, as well as for me. The end result for me was that I felt like crap, mentally, spiritually, emotionally, and physically. And for my spouse, they — yet again — had good reason to fear and resent me. They couldn’t get away from me fast enough this morning – they have some business travel they’re doing, and they skedaddled promptly this morning.

Can’t blame them. I wish I could skedaddle from myself, in fact.

Down, boy

See, this is the thing that nobody around me seems to understand with TBI — that things get out of hand, even (sometimes especially) when I’m trying to stop the slide. I know things are getting out of hand. I can feel it. I know I need to keep things from getting out of control. I’m trying like crazy to get myself to stop, I’m trying like crazy to think it all through and protect the people around me, I’m trying to reason with myself and get myself under control before I do/say something I can’t take back, but no amount of thinking helps. It’s like there’s this wild junkyard dog lunging at the end of its chain, and it doesn’t listen to reason.

It rips the sh*t out of everyone, including myself. And the rips last for days with me — even weeks. Other people can forgive and forget, but I can’t get away from the recollection of how I was. I can’t get away from the reminders of how I talked and behaved towards my spouse. I can’t get away from the reinforcement of the fear and the anxiety around me, and the effect that has on my spouse’s life and health. They’re diabetic, and I am pretty darn sure that my TBI in 2004, and all the craziness that came out of it, played a significant role in their blood sugar going out of whack. I’m not blaming myself for them not taking care of themself, but I know for a fact that I have not been easy to live with for quite some time, and that can wreak havoc on a person’s glucose levels.

Not to mention their peace of mind.

I do pretty well with having compassion for myself and being forgiving and not beating myself up too badly after my episodes. The thing that gets me is the physiological after-effects. And this is the part that I think a lot of TBI recovery and rehab folks overlook — the subjective, emotional and mental effects of the physiological “flood” that swamps us. All that adrenaline, all that rage, all that violence (be it internal or external) soaks our system full of pain that manifests as depression and confusion and fog. And it can take a long time to clear it out. Days, in fact. Sometimes weeks.

Fortunately, I have all day today to myself to decompress, take care of myself, feed myself properly, get some exercise, and examine my life to see what the hell I am doing. I keep thinking that I’m getting so much better in my recovery and that I never have any problems with volatility anymore, but the fact of the matter is, I do. When I least expect them. This volatility is insane — literally. It is just like a wildfire that spreads quickly and takes over, and no amount of reasoning is going to stop it from doing its worst.

Ironically, it often happens when things have been going really well for a while. And it usually happens after a “day off” after a long and stressful week, when I have had a nap and the evening is approaching. I relax and take it easy all day, and I don’t look at my lists of things to do, and things are going well… until the evening, when I start to get antsy and “spring a leak” with all the churning, pushing energy inside me. All my pent-up restlessness spikes and shoots right out of me like wild solar flares — at whomever is nearby, which is usually my spouse, on Saturday evenings.

I suspect it may have to do with anxiety that comes up in me about the things I was “supposed” to get done during the day, but didn’t. I have a whole list of things I need to get done these days, some of them more critical than others. And when I don’t look at my list and figure out where I am in the process, I get extremely anxious and can freak out — like I did last night. I think I’m doing myself a favor by taking a break from the list, but it’s actually making things worse.

Bottom line is, I need my lists. I need to keep my bearings. And I need to learn to shut the hell up, when I feel myself getting going. I can be such an a$$hole at times. It’s not fair to anyone. I’ve gone off on too many people in my day, because my temper got the better of me, and it hasn’t helped me. People say they can handle it, but the fact is, they’d rather not deal with it. I’ve lost jobs over this stuff — good jobs. Jobs that kept me out of debt. I’ve been paying for my aggressive restlessness for years, now, and so has my spouse.

So, today is another recovery day for me. I’m all alone in the house, which is good. This wild animal needs to just prowl around in my space and let off some steam. Go out for a really good walk — not just a walk, a real hike. Up the side of the mountain and down again. Work off some of this energy. Give it somewhere to go that’s constructive and positive, instead of turning on me and everyone around me. Get myself in line again. And settle in to get some things done.

Not everything. But some things.

And take some naps. Not just one. Perhaps two or three. Short little 20-minute naps that refresh me and keep me going. Real breaks that get me out of the grind that takes over. Something good and substantial.

I also need to get out in the day. Part of the problem yesterday was that I was inside and by myself most of the day. I didn’t feel up to going out and doing things, like I usually do on Saturday mornings, and being relatively sedentary and isolated does a number on my head. I literally need to get out of the house and interact with other people, in order to stay sane. It’s a challenge for me, these days, because I haven’t been hearing very well lately, I’m dizzy and foggy, and I just don’t feel like interacting with people much at all nowadays.

But I have to get myself to do it. It’s not optional. I’ve got to do it. Push myself. Challenge myself. Make myself leave the house and even just go to gas up the car. Interact. Get out of my head and out of my house. “Taking a day off” is not something that’s very good for me, actually. It’s not a break — it’s a bit of a torture at times. It’s much better if I pace myself and do at least something useful and directed each day, especially on “days off”. Pushing myself a little bit to interact with others and take care of things is the one sure way I can make sure I’m not getting stuck in a rut and starting to believe all the crazy sh*t in my own head. That can happen so quickly. And the results are not that great.

So, yeah – my lists. Having everything written down in front of me only helps. It can be a little overwhelming at times, but in fact the challenge of making sense of it all helps to focus and calm me. There’s something about pushing myself just a little bit that clears my head, and that’s what I need. To push myself a little bit, focus in, and clear my head with the challenge.

Of course, then I can get into the whole overdoing it thing, and then I run the risk of turning into a crazy person like last night, but if I can keep a balance and not throw too many unusual and unexpected things in the mix, I can manage to keep my act together.

And make progress. Because it’s not just all about keeping things calm and level and uneventful. It’s also about making real strides forward to where I want to be and what I want to be doing with my life. It’s not just about maintaining — it’s about growing and improving.

That being said, I’m going to make myself a couple of eggs and have some good protein. My head is still foggy and dull, and I need a little something to perk me up. Protein does that. And it will get me up from this desk and computer… get me going in the direction I should be.

Yeah, I feel like crap — physically, mentally, emotionally, spiritually — after the scene last night. But it’s not the end of the world, and as long as I give myself time to really recover today — and ease back into what the next week is bringing in another 24 hours — I can recuperate and get my balance back.

And be a sane person for my spouse in the morning.

Onward.

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.