When things don’t turn out… as expected

sunset and clouds reflected in waterI can be really miserable to live with, when I wake up after a nap. Especially if I’ve slept more than 30 minutes. Resetting my system to regular life after being “down” is difficult.

A tired brain is an agitated brain, and that’s certainly true for me. Ever since my mTBI in 2004, I’ve been much more prone to anger when I’m tired. It’s neurological. And it’s not much fun.

Yesterday, I was pretty tired. And I was pretty agitated last evening. Cranky. Fighting over every little thing. Grousing and grumbling and having trouble with basic communication. Yelling was my default mode, last evening.

And we were supposed to be on vacation… My spouse and I had a 5-day vacation planned at a waterfront resort about 3 hours from our place. We’d planned on leaving at noon on Thursday, getting there around 3:00… unpack the car, go grab an early supper, and watch sunset over the water. Then we’d turn in, and have the next four days to chill out.

Well, none of that actually happened. My spouse couldn’t get up till noon — too tired. Okay… I adjusted. It did give me time to catch up on my own chores, packing, preparations. The three-hour drive turned into a 5-hour meander through the countryside, which was actually really nice. The weather was gorgeous, and we stopped at a little scenic spot where we relaxed and napped. So, I got about 30 minutes of sleep, which was great. I didn’t even realize how tired I was, till I put the seat back in the car and closed my eyes.

When we woke up, we drove to the resort town, stopping along the way to get some hot soup, which was delicious. It was getting late, so we skipped going to the condo and went right to the beach, where we watched an amazingly beautiful sunset that lasted for an hour, with the amazing afterglow.

Then we drove around some more, exploring the surrounding countryside in the dark. That might sound strange, but we love to do that. There are woody areas where wildlife comes out — we’ve seen foxes, coyotes, bats, raccoons, opossums in those woods, and we always like seeing what happens. We actually did see two big coyotes — one of them ran out in front of the car, but I braked in time. Whatever they’ve been eating, they’ve been well-nourished, that’s for sure.

We picked up some groceries at the local supermarket, then went on to our condo. The management folks just left the door open and a key on the dining room table. I parked in temporary parking and commenced hauling our 12 bags up the flight of stairs to the upstairs unit. We’d packed 5 clothing bags, 2 bags of books and laptop, 4 bags of food we brought, and one bag of beach shoes. That wasn’t counting the clothes on hangers or the beach supplies — we like to travel comfortably, and we also like to have our own food, so there’s always a lot to carry in.

My spouse was moving slowly, since they’ve got limited mobility, so I had everything in the unit before they got into the condo.

When they got inside, however, something was amiss. There was a strong chemical smell — and in fact, there was a sign out front announcing work being done by painters — interior and exterior. My spouse started to have a really bad allergic reaction, sneezing and coughing and throat closing up. It was really bad. We opened all the windows and got some fans running, but after an hour of that, it was clear that we weren’t going to be able to stay the night — or the whole long weekend.

So much for vacation.

There was no way we could stay. I was also starting to get a sick, throbbing headache, which wasn’t good. If a migraine gets hold of me, that’s pretty much the end of me, for days to come. Neither of us could chance it. So, I hauled our 12 bags back down to the car, we closed up the place, and came home.

We got  home around 2:00 a.m., which wasn’t bad, actually. And I got in bed by 2:30. I slept till around 8, so that was better than some nights, lately. I’ve been having trouble sleeping, so actually, Thursday night was kind of par for the course.

Except Friday I woke up even more exhausted than usual. Doing all that driving — about 8 hours, give or take — and packing and caretaking and attending and adjusting… it just took it out of me, and 5.5 hours of sleep didn’t patch things up. I had a little 1.5 hour nap in the afternoon, but again, that didn’t do much for me.

So, by Friday night, I was pretty agitated. I was off my regular schedule, which is always a challenge — even if it’s for doing fun things. And I was tired. And my spouse was upset about having to leave. I personally didn’t care about leaving. Vacations with them are never, ever relaxing. It’s one request after another, constantly helping them with… everything. Their mobility has gotten worse and worse, and their thinking is not great. They have not taken good care of themself, mentally, emotionally, or physically, and after years of neglect, it’s all coming to a head.

The whole experience is pretty crushing, actually. Watching someone you love with all your heart decline… and being helpless to stop the downward slide… that’s not my favorite thing. At all. There’s so much they could be doing, so much that we’ve discussed them doing, so much they intended to do, but can’t seem to do by themself… it just doesn’t get done. And they get worse and worse off, as time goes on. I have no idea how much longer this is going to go on, but when it’s all over, I doubt I’ll have any interest in re-marrying. It’s just one long slog for me, and I need a break.

But so it goes, sometimes. I’m not the first person to watch their beloved decline before their very eyes. But it still takes a lot out of me.

And that was probably one of the things that got to me so much yesterday. I was tired, yes. I was agitated, yes. And I was also heartbroken that my spouse can’t keep up. Through the results of their own choices, their own actions. It’s crushing to see that — and realize that you probably care about your beloved more than they care about themself.

But like I said, that’s how it goes, sometimes. I’ve had friends whose spouses completely bailed on taking care of themselves, too, and I’ve watched them either get divorced or just fade away. I’m in the latter category. I’m not getting divorced — I don’t have the heart to do that, just bail on my ailing spouse. I’m just going to watch all this slowly fade away.

And take care of myself in the process. Because I still have a lot of life in me, and I’m not about to let someone else’s choices bring me down. We all have choices to make, we all have ways we can help ourselves. I can’t always help others — even the person closest to me — but I can certainly help myself.

And so I shall.

Whatever else happens.

Vacation time

road leading into the distance, with country landscape surrounding it
The road ahead is a lot more straightforward than the road behind me was

I actually get a few days off work, starting today. Well, starting at 11:00 today — I have a meeting at 10:30 that I have to lead. But then, I’m done.

It’s been a really challenging time, lately. Morale is terrible at work, and it’s like wading through thick, sticky mud, trying to get anything done. My own morale is not great, I have to say, but I keep on with my work, regardless.  For me, the real pleasure comes from actually being able to DO the work. 10 years ago, that wasn’t the case. I was pretty much of a series of accidents waiting to happen.

  • My short-term working memory was shot.
  • I couldn’t understand what people were saying to me.
  • My ability to plan and follow through was negligible.
  • My temper was short, and the recovery time was long.
  • My spouse was afraid of me.
  • I couldn’t seem to keep a job for more than 9 months at a time – and that was pushing it, for me.

It’s all very different now, thank heavens. I’ve worked at it. I’ve rehabbed myself. I’ve pulled out all the stops to figure out how to restore myself to my former abilities — and the very positive thing is, I’ve actually exceeded my former abilities. I now have much better skills than I had before my mTBI-inducing accident in 2004. Because I could finally see what was going wrong with me, I got help from someone who could assist me, and I worked at it.

Every single day.

It was my other full-time job.

I have to constantly keep this in mind, because it’s so easy to forget. I get caught up in my daily life, I get wrapped up in my everyday experiences, and I lose sight of the fact of how far I’ve come. I get tired. Every day, I’m wiped out at the end of it all, which makes it difficult to be thankful for anything. It makes it difficult to even think or keep my temper cool. Lately, I’ve been snapping a little more in the evening than I’d like, and that’s got to stop.

I’m hoping a good vacation will help with that. Even if it’s just for a long weekend at a waterfront down three hours away. It’s something. It’s a break from the regular grind. And it’s a much-needed “reset” for both myself and my spouse.

So, as I go through my daily life, these days, surrounded by people who are none too happy to be at work and who are deeply fearful about their future, I think about how much I have to be grateful for. I think about how much better I’m doing that I was in 2007. And I think about how much farther I have to go.

Once upon a time, all my dreams had evaporated. Once upon a time, I could see no clear path forward. Once upon a time, my life was collapsing around me, and I didn’t know why.

It’s not like that, anymore.

I’ve come a long, long way.

And I never want to lose sight of that.

Shaking things up just a little bit

railroad tracks on a gravel bed, one of them ends in the gravel
Time to step off the track and improvise. It’s good for my character.

I took a break from my memory training yesterday. I need to let my system just chill out and acclimate. I pushed myself for several days straight. Now it’s time to let the new connections in my brain (and all-over nervous system) chill out and have a rest. I’ll come back to my exercises in another couple of days.

I’m changing things up a bit. Heaven knows, I love my routines. I have had a lot of trouble in the past with getting things done – especially everyday things – so I have routinized many, many aspects of my life. It’s to the point where I don’t even need to think about doing a lot of things that used to really trip me up — getting myself out of bed, showered, dressed, fed, and out the door to work. It used to be such a trial and a pain — and every morning started with rage.

That’s a terrible way to live. So, I did something about it. I developed a routine I would stick with, each and every morning. It was rudimentary. It was far beneath my actual capabilities. But it relieved me of the need to think everything through, each and every day. So, it served a truly valuable purpose. I credit that routine with giving me a functional foundation again. And saving my self-respect in the process.

Now it’s time to shake things up a little bit. Change up the routines to get my brain to work a little harder.

As helpful as it is to do things the exact same way, in the exact same sequence every day, it’s also easy for my brain to just check out and not have to work at things as hard. When you’re struggling just to get out of bed and out the door to work each day, routine helps. But when you’ve got that down, and you know how to do it rote, sticking to the exact same routine can be a little deadening.

Because if you’re not continuously moving forward, then you’re actually moving backwards. Maybe not right away, but over time, if you don’t move… you’re in trouble.

So, I need to switch things around a little bit. I’ve been doing that at work, where I’m getting there earlier in the day. And I’ve been handling a wider variety of work, interacting with different people, taking on a wider array of responsibilities. I’ve been stepping into the kind of role I want to play in the future, and it’s been good. I figure I have the next year to figure out where I want to go and what I want to do — and that includes money. It turns out, I’m under-compensated. I checked on Glassdoor.com, and apparently, people are making a lot more money than I am, for doing the same work. I tend to lowball myself, because I tend to think that expensive people get cut first, but I may be wrong about that.

Anyway, I’ve been doing a wider array of things in my everyday life, too — more cleaning around the house, organizing, freeing up space and seeing how I can improve my living environment. I’ve been exercising religiously each morning, which itself is a bit of a change (I used to do it every now and then). I’m lifting weights differently. And I’m working on my swimming, doing more strokes that are harder for me and demand more of me. I’ve also been pushing myself to do extended laps, rather than just floating from one end of the pool to the other. It feels great to be in the water. And it also feels great to be tired, when I’m done with my workout.

I haven’t been doing as much walking on the weekends as I should. The summer was so hot and buggy. I just didn’t want to go out. I was also pretty tired. But I have to push myself to do better about that. I need to get out and walk today. Just up the road and back. Maybe on the hiking trails. It’s been raining for the past day or two, so things are wet and slippery, so I probably won’t go into the woods, where I could slip and fall and maybe not be found right away. I need to keep safe.

My spouse has a business engagement tonight, so I’ll be helping them get everything together for that. I have been more involved in their work, lately. It’s not quite to the point where I used to be involved, but I am doing more than I had been, over the past few years. They have lost a lot of supporters, over the past few years. I think their erratic emotions and highly demanding nature has put people off. Plus, my spouse expects people to do a lot for free — or be compensated just with words of thanks and gratitude. There’s more to compensation than that, but the don’t seem to understand that.

Well, that’s not my problem. I just need to take care of my own stuff.

But that also includes taking care of them. Because they’re getting older, and they’re not going to be 100% functional forever. We’ll need to make some changes — as my spouse becomes less able, and I continue to need to keep my career going, keep working, keep taking care of myself. I can’t see the point in sacrificing my success for them — no, our success, since everything I do really benefits us both. I am the breadwinner, after all.

So, I’ve been doing some research with regard to in-home care. It’s a thing now. I’ve had people tell me I should put them in a home, right after they had their severe health collapse, about 10 years ago. I was having trouble dealing with their constant neediness and the increased responsibilities of helping them get back on their feet, and a number of people told me I should look into some sort of managed care — that I shouldn’t stick around and have their bad decisions and habits affect me.

It’s just so bizarre to me, how people can be so cavalier about just ditching people who aren’t 100% functional and able-bodied. And I also can’t believe how easily others give up — that they don’t see how you can help someone work their way back to functionality (at least, without professional help). What a shame and a waste. Maybe if fewer people gave up, and more people realized just how much you can really do, we wouldn’t have as much human suffering. Maybe…

Anyway, after months and months of concern about how I’m going to help my spouse if/when they are unable to care for themself, I now know — I will find in-home care. It will be someone who they like, someone who’s really good and helpful. And I think it will be affordable. My spouse is on Medicare, so that might help pay for some of it. If not, I will find another way. If I can just stay at my current earning rate for the next 20 years (even if I never get another raise), I can afford to pay someone to come for 4-6 hours a day, four days a week. And if Medicare can help, even better. Unless something terrible happens to me (which is always a possibility), I can maintain my own state for the foreseeable future, just as-is. And that will let me adapt to my spouse’s changing status, as well.

This is yet another reason why I need to change things up with myself and my daily routine. I need to be flexible and capable under a variety of circumstances. I need to know how to keep my cool and soldier through. I need to be adaptable and not lose it, when things shift around me — as they invariably do. My current job is not secure, it’s not stable. It’s there for the time being, but I am pursuing different opportunities within my role at the company so that I can add them to my resume and beef up my desirability in the job market. Everything around me is an opportunity to improve and make myself stronger, more valuable, and able to command a higher dollar amount. I need those higher dollar amounts. It’s just ridiculous, that I should be paid less than I’m worth, so I need to start doing something about that.

And I am. Both by doing new and different things, and training myself to do those new and different things without losing my cool.

Onward.

#Brain training test results – 10-20-16

Here are the results of my testing yesterday. I got my test sheet and folded it in fours, then I studied the image below, committing it to memory. I traced the lines with my finger, and I also stood with my shoulders wide and my hands on my hips, to have a kind of physical memory of it, because it looks almost like a robot standing with its hands on its hips. I tried to take my time, but I was distracted by my busy day ahead.

Starting Image
10-20-16-start

I noticed when I was starting out, I was a bit impatient. I was tired (still am), and I was running behind schedule. So, I felt very antsy while I was studying the image

About four hours passed until I did my first attempt at recollecting.

First Attempt
10-20-16-try1

I did pretty well, getting the lines and all the pieces correct. However, I was a bit rushed, and the proportions were not correct. The top bar was too “chunky” (even though I remembered that the bar doesn’t go the whole way across). And I remembered the location of the circles in the middle. But I crowded them, and the bottom squares are too small. For some reason, I start out big, then I get smaller. I get nervous. I get rushed. And it shows.

At the end of the day, I took another shot:

Second Attempt
10-20-16-try2

I was clearly tired and rushed — I started drawing the bottom squares too quickly and forgot that I needed to leave room for the circles. Then I caught myself and course-corrected. The bottom squares are still too small, proportionately speaking. And the right one is smaller than the left. When I’m tired and nervous, I draw smaller. And I was rushed. I didn’t take my time — I think because I was nervous about possibly forgetting what I had in my mind.

So, what does this teach me?

Mainly, that I need to come up with a more effective technique for remembering things and keeping them in mind. I also need to relax and not rush. Because that gets me in trouble. It might not seem like that big of a deal here — it’s just a drawing — but that generalizes to other parts of my life that I really need to keep clear and steady. The skills I build while doing this can come in handy in other ways.

Additional test for today – and every day

circles-3-lines-2-1-r-up-1flagl-2flagsr-cross-r

Here’s a shape I’m going to study for a while… then write a post… and then see if I can replicate it from memory. I’ve found that this helps me really improve my ability to notice details and also remember things. I used to do it a lot. Then I got distracted by other things, and I stopped. I think I’ll start again. Like… now.

In the midst of just going about my life, I’ve gotten to a point where a lot of things I used to really struggle with, have now become rote. I’ve put a ton of energy into developing routines and also getting the discipline together to follow them.

And now I need to shake things up a little bit.

This past weekend was such a shaking-up time. I spent a day and a half going at top speed, helping my spouse with an out-of-town event. Originally, they were going to have friends help, then that fell through.

Rather than leaving them to their own defenses, I agreed to go along, drive the long hours, and help them with prep and wrapping up after the event. I’m actually glad I went, because it got me out of the house and it got me out of my rut. Now, I’m exhausted and I had to take the day off work to recover, but I’m still feeling pretty good, overall. And it was a good exercise for me — good training to work on my composure and ability to plan and follow-through.

I do need to work on a number of things:

  • My memory, which I’ve gotten a little complacent about. I’ve gotten used to forgetting things and then scrambling to make up the difference. I’d like to do better about remembering, to begin with.
  • My planning, which I’ve gotten lax about. I like to “go with the flow” at times, but that tends to get me in trouble, and I lose track of what I’m doing.
  • My follow-through, which doesn’t always happen… thus screwing up the plans I had made, in the first place.
  • Keeping things clean and tidy. It’s not that I’m dirty — I just let things get a little disorganized at times, and that makes everything more complicated than it needs to be. I’d like to simplify my life, which means I need to tidy up more often. So I don’t need to expend energy figuring out what’s where, and how I can find it.
  • Simplifying things by just saying “no”. I expend an awful lot of time deciding between competing priorities. I used to have a “never gonna happen” list, and I put a whole bunch of projects on it. But I still need to do more pruning, and not get pulled off-track by different ideas and intriguing pastimes. I need to just turn down offers from folks who want to collaborate, and stick with My Main Activity, till that’s done.

All in all, I’m feeling pretty positive about my life and the changes I’ve made over the years. Now it’s time to bump it up a notch. I need to test myself more than I have been. I feel as though the rest of my life has taken off without me, and I’m riding in a wagon with a team of galloping horses. I’d like to have a better handle on the reins, if that’s how it’s going to be.

I also need to spend a lot more time thinking about what I’ve done right, after I’ve done it, than get bogged down in the things I want to do better… eventually… whenever I get around to it. I tend to get so caught up in making lists, that I lose sight of actually just doing the items on the list. So, I need to focus on the completion of items, and thinking about them after the fact, rather than planning ahead and getting myself all psyched up … that tires me out. And then I have no energy to just get everything done.

Okay, now for my attempt at recreating that image…

memory-attempt-10-17-16

Mostly, it’s right. I’m feeling pretty positive about it. The places where I messed up, are with the direction of the “flag” on the left, as well as the sizes of the circles, relative to the lengths of the lines. The circles need to be a little bigger. I often seem to under-size the circles, for some reason.

All in all, though – it’s a good “go”.

Now you can help me to help others with TBI

group of hands holding onto each other in a circle
Reaching out to others is what brings us back to ourselves

After some very helpful feedback yesterday, I decided to go ahead and put a “Donate” button on my blog. You can see it in the right-hand column of the page. I’ve been thinking about doing this for a long time, but I never got around to it. I’m a firm believer that, of all people, brain injury survivors need access to information and connections that’s comprehensive, accessible — and free.

Experiencing a brain injury, or sharing your life with someone who’s had a TBI is taxing enough, as it is. And I think there’s a special place in hell for people who prey on TBI survivors and their families. I’ve had the mixed blessing of getting clunked on the head a bunch of times, along with a love and passion for writing. So, the two of them have combined to produce this blog. I’m committed to carrying the message that

Brain Injury Recovery is Possible.
I should know. I’m doing it.

and spreading that word as far as I can. I’ve been doing it on my own, since ’round about 2008, and as unlike me as it is, I’m actually reaching out to ask for help in doing that. Ideally, I would love to support myself through my writing and this work, but that’s not going to happen overnight. I have a number of writing projects in the works, which I very much want to get done and get out there. It’s just one step at a time with this plan of mine. And if I just keep at it, I believe I can get there — and learn a whole lot in the process.

Putting up a “Donate” button is a first step in that direction. Eventually, I may get to where I can focus on this work full-time. But for now, I’ll simply live my life as it is, share my experiences and lessons, and give others the chance to pitch in, if they like.

Ultimately, though, this is not about me. It’s about you. It’s about the readers. It’s about reaching out to others in a frank and hopeful manner, to offer insights into how brain injury recovery progresses — or regresses — and what can possibly be done to help the process along. It’s a complicated thing. It’s a very, very human thing. And more needs to be written and shared about it on a regular basis.

Whether or not money comes in, I will continue this work. It’s needed. I wish to high heaven I’d had access to this, when I had my last “mild” TBI in 2004 and everything started to fall apart in my life. But I didn’t. I had to learn from too many costly mistakes — which are still dragging me down, to this day. I would hate for that to happen to anyone else, but I know it does. And many people have it much, much worse than I. It’s heartbreaking, really. Absolutely crushing, to think of the level of human suffering — much of which happens because of lack of access to the right information at the right time.

We do know this from multiple studies:

Early intervention with the right information can help to reduce the impact of mild TBI / concussion.

It can help people with recent brain injuries understand their injury and make better choices about how to manage their lives. It can help keep recovery times to several months (sometimes weeks), instead of the years and years that some people experience.

And that’s part of my mission — to get brain injury recovery information to recently concussed individuals quickly, before the desperation sets in and/or they start making the kinds of decisions that will either further endanger them or prolong their recovery.

Beyond the initial “acute” period, I want to provide support and encouragement to individuals who are recovering from mild TBI and are confused about what they can expect, and why it’s taking so long for them to heal.

In the long run, for those of us who have prolonged periods of difficulty, struggle, and various levels of catastrophe, I want to provide an insider’s view into what it’s like to piece your life back together, after others have given up on you, or flatly refused to help you anymore. That happens all too often. I’ve lived it. I’m still living it. And it breaks my heart to think that others have to go through this… “experience” (that’s my nice, polite way of putting it).

So there it is — why I do this, and what my mission is.

I realized today that I’ve been feeling depressed and defeated over my old neuropsych moving away. I really did enjoy working with them, and they gave me so much good, encouraging information to work with. They gave me a weekly shot of hope, like no one else ever had. Losing them was a pretty big loss for me, and five months later, I think I’m nearing the end of my grieving period for that loss. I think it takes about six months to regain your footing after a significant loss. And yes, it was a significant loss for me. I’m just now realizing that.

But I’m ready to get back to work. And getting clear (again) about what this blog is really for, is a good place to start from. It’s a very good place, indeed.

So, if you also believe in this mission, and you’d like to help me get the word out, you can donate below. You can make a one-time contribution, or contribute monthly. Any amount is welcome. Thanks!

 

Onward! … Together

 

More clarity – yes, more clarity

clarity-of-thoughtSo, I posted a TBI injury and recovery story from a reader, the other day, and it seems like a lot of people think her story is mine. Not at all.

Well, of course, there are some similarities, but it’s her story, not mine. I’ve just gone back and updated it with a notice at the very top and quotes around the story — it was easy to fix.

I wish all misunderstandings were that easy to fix.

I’ve also been fielding some comments in Twitter about things I’ve said, that apparently came off wrong. It is really, really easy to be misunderstood on Twitter. I’ve had people thinking I was attacking them, or their sport, or something else they held dear… and then they “fought back” with both barrels blazing, when all I was doing was raising some questions.

All around, it seems like the online world is just primed for misunderstanding — and consequently, a fight. All around us, we are trained to see opponents and aggressors. And that’s a huge problem, when you can’t even disagree with someone and/or challenge their thinking without being seen as an aggressor (or micro-aggressor). There’s a fantastic article in The Atlantic about this (click here to read it), which I came across a while back. It explains a lot — especially with regard to the younger generation who seem to have amazing potential, but also seem incredibly hung up over every little thing.

All the fighting… good heavens. There’s a reason I backed off Twitter for a while. But there’s so much good research coming out that gets posted there, I have to check it out. There’s seriously some great reading available, thanks to all the tweets flooding my feed. I think the key is to not follow a lot of people who get snarky and vicious and outraged. Especially about politics. ‘Nuff said about that.

Anyway, I’m taking more time to think things through before I say / post / tweet them — or trying to, anyway. It’s hard, when the moment to respond presents itself, and there’s something in your mind that seems 100% appropriate and on-point.

I should know by now that that feeling of 100% certainty is a tip-off to the exact opposite being true. The more convinced I am of something, the more likely I am to be very much mistaken. So, I do know that. But that doesn’t always rule how I react and interact. Impulse control issues and all that.

I guess that’s what keeps things exciting. I just have to keep revisiting things that need a little tweaking… making sure I don’t do more damage along the way. I also need to know when to let it go. Not everything needs to be fixed the way I want it to be. It’s also important that I hold my ground and not give into bullying. Just state my case, say my piece, and leave it at that. If people understand, then great. If not, there’s no guarantee I’ll convince them.

Sometimes it’s best to just move on and leave it at that. Or just stop following some people… which I have been doing regularly, when their tone gets too unremittingly intense.

Anyway, it’s a new day. It’s Saturday. I have some time to myself today, and my headache has abated somewhat. I’ve got some reading I want to do, as well as some thinking. “Tinkering and thinkering” as I’ve heard it described in something I read recently. I’ve always got to be careful when I have free time, because I can very easily get carried away in all sorts of distracting directions.

Last week, I was caught up in researching mind-control techniques of expensive large group “personal growth” programs… and a week before that, I was caught up in some fringe neuroscience that is so far beyond me, it became apparent after two days of compulsive reading that I couldn’t even scratch the surface enough to wrap my head around the name of the phenomenon. Admittedly, it is good for me to range a bit farther afield in my reading and studies, but I can get too caught up in too many fringe activities, and then I lose valuable time for the things that I really do want to work on.

Like the handful of books I’ve started to write and got 3/4 of the way through, but are all waiting for me to pay attention to them again, so I can finish them up.

Anyway, today is different. I’m not feeling great — and ironically, not feeling great is a key factor in how well I am able to focus. When I’m feeling rested and fully functional, I get pulled off base very easily — all that energy gets spread too thinly — and I get nothing done.

But when I’m not feeling great — I’m at maybe 65% today — I know I have to be more deliberate in my activities and pick and choose. So, more gets done. And oddly, I have more clarity when I’m under the weather, than when I’m feeling at the top of my game.

I wouldn’t mind feeling just a little better today. Who knows? Maybe I will by the time the game is on this afternoon. I’ll pace myself. Take naps when I need to. And pick and choose the things I want to do.

That should be good.

Onward.

Oldie but goodie – Brain Injury Rehab Ideas from Harriet Katz Zeiner

I came across this several years ago, when I was traveling and needed to fill my mind with things other than overseas business. I enjoyed it (still do) and hope you do, too.

Bringing light

Light is where you find it – find more art like this at http://www.atagar.com/bobsGallery/

I’ve been thinking a lot about this holiday season – and all the ways that it’s associated with light. Most of the “big” traditions I know about feature light of some kind, and no wonder — this time of year is when the days become longer, and we literally can celebrate the return of the light. It’s a physiological thing, as well as a psychological and spiritual thing. And it’s well worth celebrating.

I celebrated yesterday by walking deeper in the woods than I have in a long time. Once upon a time, when I first moved to this place, I was out in the woods for most of my waking hours every weekend, rain or shine, good weather or bad. I guess I’ve always been drawn to the forest — it was the one place I felt at home when I was a kid, and there’s something really calming about being in the woods. When I was younger, I wanted to be a forest ranger, until my guidance counselor talked me out of it because it wasn’t “practical”.

Hm.

Anyway, now I get to be my own forest ranger, and I don’t have to worry about government funding cutting me off from my livelihood, so it’s not all bad, the way it turned out. And yesterday I got a good reminder of the things that matter most to me in my life — clean air, fresh water, room to roam, and friendly, like-minded people also sharing the paths.

And I couldn’t help but think about how — for years after my concussion/TBI in 2004 — I couldn’t go into the woods. I just couldn’t. There was too much stimuli there for me. It was either too bright or too dark, or it was too quiet or it was too loud. I got tired so quickly, and when I did, I got confused and anxious. And the idea of interacting with anyone I came across on the paths, was out of the question. I panicked anytime I had to interact with someone who was out for a nice quiet hike like myself. I also got turned around and lost very easily, and since I have never had the best sense of direction to begin with, I would spend hours just trying to find my way back to where I wanted to go. I told myself I was “exploring” but the fact was, I was getting lost and had to keep walking to find my way back.

And half the time, I couldn’t remember where I’d come from. Even reading maps was impossible for me. Especially reading maps.

So, I quit going into the woods. I gave up my forest. And things were very dark and dreary for a number of years. The crazy part was, I told myself it was by choice, not something I was stuck doing, because I was so trapped in anxiety and sensory overwhelm.

What changed it? I think just living my life. Working with my neuropsychologist to just talk through my daily experience. Also, doing my breathing exercises — and exercising, period. And practicing, practicing, practicing some more at the things I wanted to do, until I could do them pretty close to how I wanted to. And learning to not be so hard on myself for being different now than I was before.

I also really paid attention to the times when I saw signs of more functionality — like when I started going on hikes again, after years away from them. Like when I was able to read an entire book, after years of only being able to read short papers — and not understand much of them at all. Like when I gave things my best shot, and found them turning out pretty darned close to how I intended — sometimes even better.

Taking the edge off my anxiety, giving myself a break, focusing on things that were bigger and more significant than my own petty concerns… those helped. Those brought light to my life.

And it continues to get better.

When I think back on how I was, just five years ago, it amazes me. I was so trapped in a dark place, confused and not knowing what was wrong with me. I didn’t understand what was holding me back, I didn’t understand what was stopping me from just living my life. I didn’t understand how confused I was or what I was confused about. I couldn’t discern the different issues I had, because it was all just a dark blob of problems that pulsed like a nebula of hurt and pain and confusion. When I think about how things are now — with so much light and so much more possibility… it amazes me.

There are answers out there, if we look… if we know to ask. There are solutions out there, if we take the time to be clear about what the issues truly are. There is hope out there, when we are willing to take a chance, have some courage, and move on — move on.

As the days lengthen and we roll towards the spring (I know, winter is just now beginning, officially)… as we take this holiday season to step away from the everyday grind and do something different with ourselves… as we try to imagine what else is out there for us… let’s all remember that as dark as it gets sometimes, the night does pass. There is always dawn and a new day, just around the corner.

Yes, let there be light.

Crossing the river(s) when the bridge is washed out

I’ve been thinking a lot about how my brain developed over the course of my life, wondering if/how my early mtbi’s affected me.

I have to say, it’s a bit confounding. It’s hard to see where the differences between me and everybody else are just regular personality differences, and which ones could be related to my falls and accidents and the assault when I was eight. I’ve actually remembered more incidents, over the past few months, most notably an incident when I was in daycare as (I believe) a 4-year-old.

I don’t remember much — just climbing up some stairs when some of the older kids encouraged me to come play… then running and jumping a lot… and then lying on the ground, looking up at an older kid looking down at me… and one of the other kids running downstairs to tell the lady who watched us all that something was wrong… the lady coming at me, looming over me, checking me over… yelling at the big kids… lots and lots of yelling. I’m not sure if my parents ever found out that something happened, but I remember trying to get upstairs a few more times, but the lady who ran the place wouldn’t let me, which really made me mad! It was fun playing with the big kids. I didn’t want to be stuck downstairs with the “little peepies”. I wanted to run around and play with the big kids.

I think that I may have been kept downstairs because I was small for my age. A couple of my younger siblings were actually bigger than me, till I was about 12 years old and I started to grow. I was a little kid, so I think the lady who kept me probably told me to stay downstairs so I would be safe.

Clearly, that didn’t work. If memory serves — and there’s the distinct possibility that it doesn’t. At least, in this case. I was reading a book, lately, about how the brain doesn’t always store the information it’s exposed to. It’s not like a tape recorder or digicam. It doesn’t just take in everything it’s shown. And sometimes it “records” things that never happened. So, I could be wrong about this — yet more fiction about my life…

But I’ve felt for a long, long time that something bad happened to me when I was little — in day care — and I always had this faint memory lurking in the back of my mind. It’s always just been there, I just never paid any attention to it. But then, the other week, all of a sudden, I got this big Wham! of a hit of the sequence of events. Like all of a sudden, they “clicked” with me, and I could see it all happening in front of me, like it was yesterday.

Hmmmm…

I also remember falling down the stairs more than once when I was a kid — one time in particular, I went down and slid the whole way down the carpeted stairs, banging my head on them, one at a time. Similar to my fall in 2004, which anniversary is coming up soon, but when I was little, I hit just about all the stairs on my way down. I can still remember the feeling of my head bouncing off the stairs — bang-bang-bang-bang-bang-bang-bang-bang-bang-bang — and the dull fog that enveloped me when I got to the bottom.

Man, oh, man…

Well, anyway, I know that I have a long history of head traumas — plenty of them subconcussive, as I was a very rambunctious kid with a lot of energy but not quite as much balance… I was always biting off more than I could chew, energy and coordination-wise. So, I fell down a lot, hit my head a lot, ran into things a lot. I got banged up, bounced back up, and got back in the game. I was game. Totally. Always up for more. Just try and hold me back…

Sometimes, people were able to, like the lady who watched me when I was little. But most of the time, they weren’t.

I showed them. I could do it. I’d be up and at ’em in no time. Sure! I could do it!

Now, I’m dealing with the after-effects of my (sub)concussive childhood. And I’m wondering if the impacts over the years had a lot to do with how my brain developed. I have to say, although I have some complaints (who doesn’t, tho?) I’m pretty pleased with how flexible my thinking is, and how well I can perform, by and large. I tested very high in my neuropsych evaluation – high 90’s, percentile-wise. In my moments of self-satisfaction, I imagine I’m a genius or a savant of some kind. (Ha – yeah, right – when I figure out how to keep my study clean and get stuff done when I’m supposed to and make it to the train on time, then I’ll qualify). I have to say, though, I don’t have that many of those kinds of self-satisfied, self-congratulatory moments (I should be so lucky), so I try to savor the ones I have.

But anyway, back to the washed out bridge thing. I’ve heard head injury described as a shearing of fragile connections in the brain — the fine connectors get disconnected, sheared, frayed, and generally disrupted. Kind of like the frayed strings in my sweatpants when I was a kid and I wore my sweats to shreds. And the routes that normally connect the different parts of the brain end up having to re-route to find other ways to connect. And that’s where the fatigue comes from. And the constant restlessness. And the agitation. The brain has to work all the harder to do basic, regular stuff. It can do it, it just takes more effort. The ways that are usually used, the pathways that everybody else seems to have intact, don’t quite work the same for us.

So, we mtbi survivors have to find other ways to get down the neural pathways of our lives. We have to find other routes, when the highways and byways of our brains are washed out by the storms that take us by surprise. The traffic of our brains doesn’t stop — not as long as there is life in us. It just keeps coming and coming and going and going, and when it comes to a place in the road where a bridge used to be, or a paved portion is mising from a huge-ass virtual sinkhole that opened up under it, or there’s a huge fallen tree getting in the way, we — the traffic in our brains — have to find a different way of getting where we need to go.

And I think about all the times when I was a kid, feeling like I was so far behind, just struggling to keep up with what was going on around me, hassling and hassling and hassling over every little detail… all the while seeming to be fine, because I learned pretty early on to be stoic and not let on when I was having trouble — and anyway, I was a tough little kid who didn’t take shit from anyone — and I think about my brain and how hard it was working to put two and two together…

Man, I have to hand it to myself for not going crazy. Granted, I was a strange kid who went off on horrible tantrums, beat up on my siblings, and had all sorts of weird habits, like rubbing through the satin edge of my blanket because the feel of the satin between my fingers was the only thing that would calm me down enough at night to get to sleep… I won’t go into the hiding in dark corners and talking to myself for hours on end and tearing out clumps of my hair — that’s a tale for another time. But all that disturbance aside, I actually came out okay. And nobody I know seems to have noticed there was something really amiss with me.

Of course they didn’t. I learned a long time ago, to hide what goes in with me. In fact, it wasn’t until I realized I was several hundred thousand dollars poorer than I’d been three years before, and I couldn’t explain to myself exactly why or how or when that had happened, that I noticed there was something amiss with me.

Crazy.

Anyway, something must have worked, because here I am, relatively normal, as far as anyone else can tell, testing well, for the most part, in my evaluations, and able to hold down a job and advance my career. Maybe I’m just fooling myself and I’m in for a rude awakening, when I find out that I’m not nearly as competent as everyone else seems to think I am. Maybe I’ll crash and burn. Maybe I’ll self-destruct. I don’t plan to, and I don’t think I will, but you never know.

All I know is, all these years, whether because I’ve kept busy or just kept moving, I’ve been able to re-route my brain around lots of obstacles, and find other ways of getting where I need to go. I may have had all those falls and all those injuries, but if anyone is a testament to neuroplasticity, I am. I’m serious. All the crap that’s gone down in my life, and miraculously my brain has managed to adapt, grow, change, and not show up horribly deformed on my MRI or register more than slight abnormalities on my EEG. For all I’ve been through, for all the crap that’s been done to me, and the wrecks I’ve survived, I’m doing okay.

Even if the bridge is washed out in places, there’s plenty of territory to discover while I’m bushwhacking my way through the underbrush. And if I’ve learned anything from this life, it’s that if you just keep going and use your good sense and you don’t go out of your way to do genuinely stupid stuff, you can find your way back to a beaten path of some kind. It might not be the road you left, and it might not be the road you were looking for. But sometimes a detour is the best thing for us.

Just keep going.