Learning with all your senses

I just got a tip from headinjurytalk.com about a new study that’s out about how movement and images can help with learning a new language – read about it here: http://neurosciencenews.com/vocabulary-learning-sensory-perception-1742/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+neuroscience-rss-feeds-neuroscience-news+%28Neuroscience+News+Updates%29

What interests me is not so much the foreign language thing (thought I wouldn’t mind brushing up on some of my high school skills), but the overall learning implications.

As I’ve said before, TBI recovery is all about learning. You need to re-train your brain to do things differently. You need to re-train your mind and your body to handle things better. TBI recovery is very much a learning-oriented phenomenon, so anything that helps you learn, is a good thing.

I think that the foreign language orientation of this study is also interesting, because after TBI, you can literally feel like you’re living in a foreign country. And sometimes you can’t make sense of what people are saying to you. That happened to me after a couple of TBIs I had in the past. Suddenly, nothing that anyone was saying, was making any sense.

At all.

It was like I was watching a movie with missing frames, or listening to a radio station with poor reception, or watching a video that had to keep buffering. Nothing was flowing well, and I couldn’t understand what people were saying to me.

So, movement and sensory input helps people learn and translate a foreign language. And movement and sensory input have been really important for my own recovery, though perhaps for different reasons. I use the same principles in my TBI recovery that parents use with their small kids, trying to have as rich an environment as possible, with cognitive challenges punctuating my day… along with rest… I try to get plenty of rest.

I want to give my brain plenty to play with, including music and interesting videos to watch and interesting papers and books to read. I got myself a tablet, and I read books on it — I’ve heard that the lighted screen actually helps the brain to process information better, and that seems to be the case with me. And of course, I need my exercise. Whether or not it’s related to what I’m learning, exercise is still vital to my recovery. You need oxygen to feed your cells and your brain. Balanced breathing. Stretching. (Which, by the way, has resolved my recent crazy balance issues that were making my daily life unsafe.)

It’s all connected, and it’s always nice to see new research coming out that confirms that for the scientific community.

You do someone a favor…

I love to help others, but I never know what it’s going to turn into…

… and before you know it, it’s taken over your life. That seems to be where I end up a lot. Maybe it’s my impulse control issues cropping up again.Maybe it’s my tendency to get consumed by what I’m working on.Maybe it’s that the “simple” favors end up being quite complex because A) I have to work harder at them to get them done, and B) I find all sorts of things that need to be fixed along the way, and being the perfectionist I am — actually, no, I just want to get it done right — it’s got to get taken care of.

This doesn’t just happen with favors. It also happens with my own projects. I start out with a simple idea,and before you know it, I’ve complicated things beyond recognition, and I build out a whole life-altering drama around a simple project I started because “it seems like fun”. Again, I find additional things to focus on (all of which seem quite important) and everything balloons into something incredibly huge and complex.

In both cases, I tired myself out,and then I make sloppy mistakes and have to double back and try again, thus spending about twice the mount of time I originally intended to spend on it.

The irritating thing is,I don’t realize it until much farther down the line, when I have used up a lot of time and energy. As they say in Peanuts… Arrrrrrggggghhhhhh! It’s so frustrating. Especially when I get tired and I mess up other people’s stuff. Fatigue is such a Pain In The Ass. It turns me into an idiot — and I don’t realize it until much farther down the line.

In the end, though, I do these things, and they help other people. And it’s good practice for me. It’s no good, hiding away and not doing anything, because of fatigue. I just have to work through it, and learn from each time.

So, I’m trying to wrap up a project I’m working on for a friend. And I’m trying to wrap up TBI S.O.S., which actually does need to be “built out” a lot more than it is. I’ve got a lot of it written, which is great. But there’s a bunch of stuff that’s hidden inside that I need to sort out. and I have a feeling that when I start digging into it again (after a 2 month hiatus), it’s going to stir up a bunch of “stuff” with me.

Which is probably why I have taken a break from it for this long. Yes, I have some other projects I’m working on which have pulled me away for very good reason. But I’ve also been really struggling with some of the things I talk about, and it’s not always easy for me to function well, when I’m emotionally upset. And that’s even more emotionally upsetting for me, which turns the whole thing into a downward spiral that’s both mentally taxing and physically exhausting. When I get upset, I tend to get UPSET, complete with an internal storm (which may not be immediately visible from the outside) that throws me off for days.

When I’m “emotionally hungover” as some of my friends call it, I feel marginal for days. I have a hard time thinking and handling basic things, and I feel like I’m in a haze. It’s no good, when you have to really function at a very high level on a regular basis. Having a history of solid achievement in my professional life is a double-edged sword, which makes life … interesting, shall we say.

On the one hand, it puts me in an enviable position at work, where people look to me and rely on me for support and strength and reasonableness. In the midst of the madness, I project a demeanor of calm, cool, collected level-headedness, and people confide in me, at all levels. I’m discreet, so they know they can talk to me without it getting out to everyone.

On the other, it makes it all but impossible for me to be able to “slack off” (or even adjust my pace) in my life, to catch up with myself. Sometimes I just need to adjust — so I don’t wipe myself out and plunge into abject misery — but I really can’t back off my level of effort and my facade at work (and at home and in the world at large), because people are depending on me, and they need me to be something I can only be under ideal conditions.

The rest of the time, I’m faking it. Which is great for others, but really a pain in the ass for me… and ultimately for others, when I get tired and start to make stupid mistakes.

And then comes the scramble to adjust for those stupid mistakes and do damage control

Which, again, is tiring. And takes more of the energy from me that I need.

And all the world gets dim and grey and a lot more taxing than it should/could be.

And the inside of my head and world nudges a little closer to the edge of that abyss I spend so much time trying to avoid.

But nobody really knows or believes the extent of my efforts. So, it must all be easy for me, and I must be perfectly fine and have all this extra energy and surplus.

Right?

God, just thinking about how wrong that is, makes me tired. So I’m going to turn my attention — and the energy from all my frustrations — to writing some more. Doing something productive. Doing something meaningful for myself and for others. My hope is that I can get this book finished in the next couple of months, and then I can publish it and send it out to providers who think they know about how to address TBI, but aren’t factoring in the Sense-Of-Self issues. In all my reading and video watching and talking to my own neuropsychologist, I have not heard much reality-based talk about the effect that personal experiences with TBI has on prognosis of recovery and outcomes.

It’s not that people are idiots (well, some are, of course). It’s that they’re looking in the wrong place. And because folks with TBI are notoriously challenged at A) self-awareness, and B) articulation, what our experience is actually like, and how it affects the trajectory of our recovery, falls between the cracks and is lost — never to be found. Of course, you can’t look for something that you don’t know is there.

But I’m here to say that personal experience (or phenomenological influences, if you will) CAN and DOES have an enormous impact on recovery from TBI. And when you have providers who have not experienced it themselves, well then, my friends, we have a problem.

Time to do some writing. Onward.

Here’s some traveling music for you:

I’m up early today

Cutting through the cloud

I’ve been getting to bed around 10 p.m., which is good. And I’ve been waking up early, which is also good. I just wake up. Then I lie in bed for a while, stretching and just feeling comfortable. Then I have to get up. I can’t just lie there. I have things I want to do, before I go to work. So, I get up, make myself breakfast, and then sit down to work on things that are mine, not someone else’s idea.

I’ve been finding some really cool pictures, lately, which visually depict how I’m feeling. I found pictures of underwater sculptures by Jason DeCaires Taylor at http://www.underwatersculpture.com/sculptures/, and they seem to depict how I feel, pretty much every day.

I’ve been trying to summarize for my neuropsych the different aspects of my personal situation that they haven’t been acknowledging or addressing. They have been treating much of what I deal with like it’s an emotional reaction to stuff, rather than seeing that I’m really struggling to express what I’m experiencing.

I’ve ignored their cluelessness for years, because it’s worth it to me to have someone to talk to, and just being able to talk to someone and practice organizing my thoughts out loud is worth the world to me. But it’s so frustrating for me to try to articulate what is happening with me in words. In writing, I can do it. But when I’m sitting in front of someone, being watched, I tend to lose it. I get so far, then I have to stop. I can’t go into details. I’ve had too many bad experiences, trying to disclose my issues to others, only to have them either freak out on me, contradict me, or make fun of me, or tell me I’m lying.

I don’t “present” like most brain-damaged folks do, so the depth and range of my issues do not really come through, loud and clear.

So, this is just one more person in my life who doesn’t know and doesn’t help in some ways.

But they have helped me, just being there… and also being very focused on human performance and improvement. Most of the people I know aren’t interested in really pushing themselves to be better, to get better, to live better. They’re happy with just relieving their pain — pain they cause to themselves.

It’s an endless cycle with most people I know:

  1. Get sucked into bad, destructive habits of thought and action:
    • Don’t eat right, don’t exercise
    • Get caught up in negativity and pointless drama
    • Get all worked up over misperceptions and mistaken impressions
    • Fall into the customary abyss of negativity, criticism, and frustration
  2. Suffer each and every day, each and every waking moment… usually without realizing it.
  3. Long for release and relief. Usually without realizing it.
  4. Do things that will relieve the pain and suffering they have caused themselves, thinking that it represents progress.
  5. Just be happy that the pain is temporarily gone.
  6. Get up the next day and go back to doing the things that cause them pain and suffering.
  7. Wash, rinse, repeat.

My neuropsych is actually not into that at all, and we are on the same page, in terms of breaking free of all the bad habits of thought and action that stoke human misery.

They’re just sorta kinda wrong about the source of much of my pain and suffering. I know there are things I do which make my life more difficult. Not exercising as much as I should, eating too much sugar on some days, and sinking into frustration and despair are some of the things that drag me down. But not all of these things are caused by poor habits of thought and action.

Some Most of them are because of my TBI issues, which I really struggle with, even though they don’t show. Most people don’t know how often I am in pain, am confused, am turned around and don’t really know where I am, or I literally feel like I’m dying. I know how to keep going without making a fuss about things. I keep going, because I know that a lot of this stuff is temporary — or if I can just get my mind off it, I don’t have to be held back. So, I focus on other things. And life goes on.

I don’t know why I am so concerned about my neuropsych not knowing what all is going on with me. Maybe I just reached a point of critical mass, where I realized just how different their perception of me is from my personal experience. Maybe it’s because of the whole neuro involvement, where the two of them will (probably) be talking to each other, comparing notes, and there’s a chance that their two perceptions of me will be very different, so they’ll both think I’m lying, and I’ll be back at square one. Maybe I’m just tired of hearing the mini-lectures about how our minds give rise to everything.

There’s a whole world view called “mind-only”, and I suspect my neuropsych adheres to it. I have my own take on that. But it’s too complicated to go into, right here.

Bottom line is, I’m up early, I have a few hours to do what I like, till I head out to work. I’ll get some more exercise, I’ll work on my projects, and I’ll prepare for the day. I may even get to work early, so I can make up for some of the billable hours I missed yesterday.

We’ll see.

Onward.

 

Without the protective shell

They usually help

Vitamins that have lost their protective shell are pretty nasty-tasting. I got a little reminder of that, just a minute ago, when I took a couple of vitamins that had been sitting in some melon juice. My breakfast is usually toast and a banana, a couple cups of coffee, and my vitamins.

But today I had no ripe bananas, so I put some cut-up fruit on my plate. Watermelon, cantaloupe, honeydew melon, pineapple. And some of my vitamins got in the melon juice, removing their protective coating and reminding me – yet again – why they have a protective coating in the first place.

Nasty.

Anyway, I’ve been thinking a lot about how I walk through the world, and all the adaptive behaviors I’ve developed in order to function the way people expect me to. It’s like I’ve been living undercover for most of my life. I started having real problems after TBI when I was 7-8 years old, and it didn’t stop there.  And I’ve been through the wringer with so many people over so many things — saying and doing the wrong thing, looking dorky, not being able to move very well at times, and struggling with basic stuff after getting injured, again and again… and then getting roughed up (figuratively speaking) by people who had no information or patience for me and my inconsistencies.

I was supposed to be so smart — no, actually, I was smart. Yet, I couldn’t manage to get my act together. Always running into problems. Starting things and failing to complete. Completing things and doing them wrong. Running numbers and ending up with a mess of calculations that were all incorrect.

Part of it was because I was a little too smart for my own good, and the other part was, I had a lot of invisible deficits and challenges that nobody really believed existed.

So, I learned to live the way others expected me to, and I took on the roles that got me rewarded. Club member. Town board member. Team leader. Breadwinner. Business owner. Professional. All that. I learned how to present myself in ways that satisfied the social requirements. I practiced and practiced and practiced, making sure I had it “down” and I could pass for the sort of person who would succeed in the world.

And it was good enough. For everyone else.

Meanwhile, I’d end up completely wrung out and beside myself, by the end of each day, unable to think past the next five minutes and melting down over every little thing. I’d go so far, then come up short — running out of steam, running out of ideas, not understanding the nature of my problems, and certainly not knowing how to address them.

Living that way for over 40 years has its effects. It builds habits that are hard to break. And when you have to break them — such as when you’re trying to get help? Then what?

An excellent question.

I’m trying to find that answer right now. To be honest, I’m not sure I’m going to find it. There’s a chance, it’s too late for that. I suspect my protective shell is too functional and too intact, to let me really show what’s going on with me, so I can get help. I’ve tried reaching out, but it seems that my success at compensating is working against me, and I’m left with the overwhelming sense that I — like so many others dealing with mild TBI — am pretty much on my own, and no one without TBI (even trained professionals) can ever understand just what it’s like.

I don’t know why this is tweaking me, right now. It’s not like this is news to me. I’ve been well aware of the isolation of TBI for years, now.  But all of a sudden, it’s become important to me. Significant. Probably more “important” and “significant” than need be — no doubt thanks to my sleep-deprived head (I blame the recent nightmares about having to choose between letting myself be killed, or watching others I love be injured or killed).

I suspect it has to do with embarking on this quest to find a neurologist who can work with me on my headaches, tremors, twitching, and other symptoms that have become more noticeable and bothersome over the past year. The idea of trying to explain myself to them just puts me over the edge, sometimes. I’ve been down the healthcare road — to no avail — so often, and only recently have I found a doctor I can talk to and work with (who is actually becoming less and less engaged, as they absolutely hate the practice where they work).

Now it feels like I’m starting all over again, and I have to let down the shields to tell this new neuro what the heck is up with me.

Panic.

And like the vitamins that left a really bad taste in my mouth after I took them earlier, I’m left with a really bad taste in my mouth about trying to communicate with my healthcare providers. It feels like I have to drop my defenses and expose all the most difficult aspects of my experience, in hopes that they’ll be helped, somehow. I’m not sure if they will be. I’m not sure if they can be. I’m not sure if I can adequately communicate them. I’m not sure if anyone will believe me.

And in the meantime, I’m left defenseless and vulnerable, and that’s a terrible feeling.

Dealing with the mainstream medical establishment makes me nuts. I’ve never done it particularly well. I’m not sure anyone has. It’s like we have to just throw ourselves on the mercy of the system and hope against hope for the best. It can be so dehumanizing. There’s a reason so many people turn to alternative healthcare, including “folk” healers in place of medical doctors. Healers and alternative folks (in my experience) put a focus on listening and treating the whole person — body, mind, and spirit — not just diagnosing a medical condition and hammering on it with prescriptions. So much of what ails us involves ALL of us, not just a handful of symptoms, but modern medicine seems to not quite get that — yet.

Anyway, I’m tired today, and I have a couple of busy days ahead of me. I have some hopes for this weekend. We shall see. With any luck, I’ll be able to have a little of the peace and satisfaction I found last weekend. I’m sure a nap (or two) will help. That, and just getting my mind off the whole neuro thing.

For the time being, anyway.

The day is waiting.

Onward.

When nobody believes what you have to say

So, this is interesting. The neuropsych that I’ve been seeing for over six years has finally — finally — gotten it through their head that I have more issues than they realized, or wanted to acknowledge. For years, we’ve been working on my attitude, getting my outlook out of the muck and mire of my crappy moods, and focusing on getting me to realize that I’m not that bad of a person, after all.

That’s all very well and good, and it’s important work for me to do. But I’m not sure they ever realized the extent to which TBIs have screwed up my general functioning. Things like my piss-poor memory, my impulse control issues, and behavior that just is NOT like me or how I want to be… Yeah, it’s been extremely disorienting, and discouraging.

But I haven’t been able to articulate that out loud to another person, especially my neuropsych.

I’ve been trying for years to articulate it, but every time I try, I get stuck and I can’t get the words together properly. Part of the problem is that the conversations we have move too damn’ fast for me to keep up with. When I’m writing things down and able to process them, or I’m coming up with ideas myself, it’s one thing. But when someone is sitting across a desk from me, engaging me in a conversation, and they say something I’m not really sure about — or that I didn’t even hear properly — responding appropriately is a huge challenge.

And a lot of times it doesn’t happen.

So, I just respond. I settle for whatever comes to mind, and I put that out there. And it passes for a response.

Or I just nod and smile, “Yeah, okay,” and it sounds like I’m agreeing. But I haven’t had the chance to really think it through and come up with a genuine response based on what I think and feel.

And in the process, I guess people get the idea that I:

A) agree with them and/or

B) “get” what they’re saying

When nothing of the kind is happening.

But stopping the conversation in mid-stream is so demoralizing, and I feel so stupid and slow, like everything is sludge moving through my brain, I just can’t bring myself to admit that I’m lost. Or that I have to give what they’re talking about some more thought before I respond.

And then there’s the whole background business, where my head is working in Dolby 5.1 and Technicolor and 3D, but my mouth can only come up with some lame little idea blurted out, because I can’t think of anything else to say, and it’s just too demoralizing to ask for more time.

Hell, even if I get more time, there’s no guarantee I’m going to be able to say what I’m thinking. Because I think in pictures and in surround sound, but spoken words only go so far.

So, anyway, it’s actually less of a problem for me, than it is for my neuropsych. I hate to break it to them, but a ton of my recovery has happened here on this blog and in my life, and a lot of it has happened not because of their help, but in spite of it. They’ve said some seriously screwed-up things to me, which I paid no attention to. Things like, “Don’t keep lists of everything. You’re much higher functioning than that.” Ha! Right. Or, “Make sure you get at least 8 hours of sleep a night, minimum.” As though that will ever happen predictably.

Please.

In many ways, they have helped me a great deal — especially because they have been a regular presence in my life on a weekly basis for quite some time. But they’re not nearly as effective as they seem to think they are, and watching them get so uncomfortable over not being The One (And Only One) who got my head screwed on straight, is interesting.

Anyway, I feel kind of badly for them. They really try. But there’s a sh*t-ton of stuff they don’t know about me, because A) they haven’t looked for it, and B) even when I told them about it, they didn’t hear or believe me.

Oh, well. So it goes with TBI. When you’re brain-injured, people are either all Woo-Hoo-We-Believe-In-You, bending over backwards to show how accepting and supportive they are, or they freak out and flatly deny that you’ve got issues and treat you like you’re making it all up to get attention.

Hidden away from plain sight, our issues continue on. Some days are better than others. The best days are when the opinions of others matter less than not-at-all.

Endless headaches … continual symptoms… life goes on

What lies beneath – I live down there

For the past several weeks — on and off — I’ve been pulling together descriptions of what my symptoms are, Headaches, dizziness, nausea, feeling drugged and “doped up”, tremors and twitching in my face and hands… I usually don’t think about these things. I just get on with my life and don’t let them stop me.  Now that I’m putting them all down on paper to discuss with the new neuro, as well as review with my neuropsych.

You know, it’s funny… all this time, I’ve been really actively involved in my own recovery from TBI, and my neuropsych has had a very big positive influence on me, but not in ways that they probably intended. I think they’ve been thinking they’re helping me develop better skills and approaches — and they have.

But the real way they’ve helped, has been just being there reliably for me each week, to turn to and discuss matters of importance to me. Just being able to talk about my life to another person who can get it, is hugely helpful.

The only thing is, now I’m going down this path of digging into all these symptoms and complaints, and it feels very foreign to me. I spend so much of my time looking past the problems, disregarding the issues, coming up with ways to not have to deal with them explicitly – just work around them or do a variety of things to relieve them – that now I’m feeling the burn pretty intensely.

All the things I don’t talk about with others — because A) they can’t believe that it’s true, and B) they get all freaked out that I feel the way I do — is getting put down on paper. And it’s a trip.

God, I have a headache. And I’m sick to my stomach. Migraine? Who knows? And who cares?

There’s no sense in getting all depressed and upset about it. I can’t always do anything about the headaches — they don’t always respond to Advil, and the rest of the supposed “headache medicines” are like sugar pills to me. I’m much better off, just finding something I can focus my full attention on, and sticking with that.

Like my writing projects. Like the books I’m writing. Like the variety of things I have to occupy my attention. Fun things. A heck of a lot more fun than thinking about my headaches.

Anyway, life goes on, regardless. Or it doesn’t. Who knows how long any of us has, and why not make the most of it, while we can? I have my ways of dealing with headache that may even be more effective than medication. If you can’t feel the pain, you don’t have pain. So, if I can keep my focus on something that really captures my imagination and lifts my spirits, why not do that… instead of fretting about the headaches that never go away?

So long as it’s not something that’s life-threatening, why let it wreck my days? There is so much to do, so much to see, so much to experience… why let headaches stop me, when I know how to stop them?

Onward.

Back in the saddle again

Okay, I’m ready to roll. I’ve had my time off, and I’m ready to head back into it. I’ve rested, reflected, taken care of some stuff that was gumming up the works of my head — got clear on things I am NOT going to be doing in the short term… and also found some really excellent reading material to study, to help me get where I want to go this year.

I’m making some pretty cool connections with new folks, as well as getting back in touch with folks I used to know. People want to connect, and it’s a welcome change. Last year was so insane with all the changes and drama all over the place, it seems like now people are settling in and getting their bearings.

I have a feeling this is going to be an interesting year at work. There are lots more changes on the horizon, and I’m sure there will be drama. But that doesn’t have to be a bad thing. People just need to keep their heads on straight — and that includes me.

Getting enough rest, keeping perspective, keeping really focused on things that truly matter, making a little progress each day… that’s what it’s all about for me, and it’s good.

Anyway, the day is waiting. I spent the weekend collecting a lot of data from my last year of headaches and other symptoms, so I can discuss with medical folks in the coming weeks. I’ll be refining the list of “whazzup” with my neuropsych tomorrow, so they can help me communicate better with the neuro I’m going to be seeing sometime — hopefully before too long.

Headaches have either damped me down or sidelined me, on and off, for the past year — including this past week, when I had a sick headache all day Friday. I’m still kind of out of it … of course, waking up really early today and not being able to get back to sleep doesn’t help. But I guess I was excited about going back to work. That hasn’t happened to me in a while. Imagine that… With any luck, I’ll be able to get some relief for the headaches — at the very least, better understand the sources and causes and what I can do about them.

Ultimately, what I seek more than fixes, is understanding. There’s a chance that nothing can be done — or the cures they propose are worse than the condition itself. In any case, I just need some help understanding the nature of what I’m dealing with — not doing scatter-shot attempts at relieving symptoms, when the underlying causes are still an issue.

Anyway, tomorrow I call. Today, I focus on getting back to work, answering all those emails, and getting on with the new year.

Onward!

Happy Anniversary, everyone!

Seven Years Ago Today, I started this blog

Hey, today is the anniversary of this blog. Seven years ago today, I sat down to chronicle my “adventure” with TBI recovery. I wasn’t sure where it would take me, but all this time later, I have to say it was probably one of the smartest things I’ve ever done.

And thank you for joining me – all 296,885 page views and 4,550 comments. :) Thank you for your ongoing support! I am truly grateful! Indeed, no words can say.

Blogging here has helped me to get out of my head — and my apologies to those who grew weary of hearing me bitch and moan about every little thing. There’s been a lot of wailing and gnashing of teeth in these pages, over the years. But eventually I did figure it out. Took a while and wasn’t easy, but I got there.

Anyway, things are moving on the neurologist front. Sitting down with my neuropsych yesterday, we walked through the different symptoms I’ve been dealing with, lo these many years. Many of them date back some 35 years — the tinnitus, in particular — while some of them are newer. The headaches have been a noticeable vexation to me since 2008, though I can’t say I never had them before that. Some of them started to be a problem after my 2004 TBI. Some of them, like the facial twitch and one-sided hand tremors, are fairly recent, becoming more noticeable and concerning in the past year or so.

I’m not one to complain, and I don’t want to draw undue attention to myself, but one of my relatives died of MS, another died of a brain tumor, and I had a friend who had Parkinson’s and did not get diagnosed for a couple of years — and they lost valuable time in understanding and treating their condition.

If I’m dealing with something bigger than your standard-issue First World problems of carpal tunnel and sleep deprivation, I need to know sooner, rather than later. The thing that really took its toll on the friend with Parkinson’s, is that they didn’t deal emotionally with it, and they were in resistant denial for quite some time… and they are NOT in good condition, right now. It’s alarming, seeing them as they are. Truly alarming, compared with how lively and engaged and into everything they once were.

I’m not saying I have Parkinson’s or MS, or anything like that. But TBI increases the risk of Parkinson’s, so it’s in the back of my mind. And if there is even the remotest chance of any of the above (or something else), I need to rule them out, before I go on my merry way.

For the record, I’m fine with a benign tremor. It gets worse when I’m tired, so it’s an ally in a way. Those sorts of things act as a sort of barometer to keep me honest. And if a good night’s rest will do the trick, then I can deal with the inconvenience.

Anyway, I’ve got to go get my car serviced. Off I go…

Onward.

 

 

Looking a little closer again… maybe

Back in 2009, I was pretty focused on taking a close look at my issues and trying to understand them. For years, I really examined my situation and worked at trying to get my head around what was going on with me.

It really helped me to do that. Some people thought I was being neurotic and overly detail-oriented (and maybe there was some truth to that). But I had suffered for so long without understanding why things were so hard for me, it was a like a breath of fresh air to actually “dig in” to the issues I had, and come to understand them.

It helped me learn to manage them.

Then I learned to manage them. I became uber-familiar. And I took a break from all the focus on the details. I got in the habit of noticing what was going on with me, and just moving on…  not letting it consume too much of my attention and focus… just background noise.

In the past year or so, I’ve been so caught up in living my life and keeping on top of things, I haven’t spent a whole lot of time paying attention to the fine details of my issues. They’re just there. They cause me problems at times, and they factor into things, but I haven’t spent a ton of time really dissecting them, over the past year or so.

At the same time, even though I don’t let them stop me, I still feel like crap, a lot of the time, and when I tell that to my neuropsych or others, they seem to think that’s a problem. I don’t want to complain — plus, it’s difficult for me to articulate to people at times, just what I’m feeling or experiencing. It all gets jumbled up in my head, and I get confused. And I come off to people like a drug-seeking malingerer. Not many people understand or appreciate just how uncomfortable life is for me on a regular basis.

And yet, it doesn’t stop me from doing what I need to do. It drains my energy and makes me feel horrible, but ironically it doesn’t prevent me from living a full and happy life. Not many people get that… and they seem to think I’m making things up or blowing things out of proportion. They just can’t imagine how bad I feel, compared to how well I function.

So, there doesn’t seem to be much point to digging around and dredging things up. I just go about my daily life. What-ever.

But now my neuropsych is telling me they might be able to connect me with a neurologist or a rehab person who may be able to help me with my issues. Hm. They’ve said they were going to connect me with them, several times before, and it never panned out. They promised they would have a chance to speak with someone earlier this week, and they would have info for me the next time we meet next week.

We’ll see. If they can’t get it together to get me the info by next time, I’m going to tell them to just forget it. I’ll look into things myself, if I need to. But I can’t rely on them. And I can’t keep getting my hopes up. In a way, I kind of dread dealing with any medical folks, because of all the rigamarole and the extra effort required. They’d really have to help me a great deal, to make it worth it to travel to the closest city and do the extra work.

It would really need to make a substantive difference in my life. And to be honest, I’m not sure I’m even up for the inspection, the questions, the inquiries, the details collecting.

Who would believe me, anyway?

Who would believe a word I say?

Anyway, I’m getting tired. It’s been a really weird week, with organizational changes and the holidays in full swing. There’s work to be done, but it’s hell just getting it moving.

Oh, well. Supper’s in the oven. I’ll eat soon, and then do some more Christmas shopping online. It’s all good. And for now, I don’t have to think about all that stuff. Just live my life as best I can.

Onward.

Missions accomplished… kind of

Tree’s up… getting there…

This year all the Christmas preparations and activities are going a lot more slowly than in past years. Part of it is me, part of it is my spouse. We are both slowing down — especially my spouse, who is having increasing difficulty sequencing information and understanding things when I say them the first time. They are also having difficulty communicating their ideas to me. They tend to start their sentences mid-way, and then they get angry furious when I ask them what they are talking about.

It’s not much fun, watching the love of your life decline cognitively, physically, emotionally, and behaviorally, that’s for sure. It’s heart-wrenching, and it’s very difficult to observe… not having any way to stop it. They’re also intensely anxious about… well, just about everything. If they don’t have a sense of control, they flip out. Or run away.

So, I do my best under the circumstances. I try to remain calm. I take my vitamins. I do my exercises when I wake up. I keep on keepin’ on. I work on my projects, in hope that they will allow me to earn some extra money on the side, so I can take better care of us. I just keep on, taking care of what I can control, and “turning over” the rest, as they say.

And we both do what we can. We really work at keeping the arguments from getting completely out of hand, and get through the rough patches the same way as always. I have a lot less tolerance for the fiery arguments, than I used to have.  We have always had a very fiery, passionate relationship, and we’ve kept each other on our toes. But it gets a little old, to be honest, and sometimes I just don’t feel like going through the whole big loop to get to a final resting place where we both understand what’s going on.

Anyway, over this weekend, we did some Christmas shopping and got just about everything we need for family members. We’re not shopping for each other, just yet, because we have time and we don’t want to put a lot of pressure on ourselves. We also trimmed the tree a bit. This year, we are taking it in bits and pieces. In past years, we put everything — and I mean everything — on at once. We loaded the tree up with all our ornaments and lights, and it was a sight to behold.

This year, we just put up strings of small lights, and last night we did the larger lights. We didn’t have enough of the lights we needed, so the tree is looking a little lop-sided this year. We’ll figure it out, I’m sure.

Or we won’t. And this will be kind of a sad and low-key time.

I’m thinking it’s going to be the latter. For all the progress I’ve been making, and for all the strides I’ve made, I’m married to someone who is on the exact opposite end of the spectrum — too afraid of their own shadow, and too averse to hard work, to maintain and improve. They are literally letting themself go, and when they are challenged, they’ll react for a few days… maybe a week… and improve. Then they will go back to how they were before. It’s very dispiriting, to be honest.

It also makes me all the more aware of what a difference attitude makes in brain injury recovery. By hiding from it in fear and ignoring it, basically refusing to engage with it, that just makes things worse. You can’t shrug off a brain injury. You can deal with it. You can address it. You can fix a lot of things. But NOT if you’re hiding from it, cowering in fear in the dark corners of your mind.

Of course, brain injury lends itself extremely well to panic-anxiety disorders. You can get stuck in fight-flight mode, simply by right of the nature of the condition. You’re always ON, always on high alert, trying to figure out how to do things that used to make sense, and you’re constantly being surprised / jolted / alarmed by things that did not work out the way you needed them to — or expected them to.

It is so hard, at times. A real pain in the ass. And the worst thing you can do is avoid dealing with it. That just does not work.

Well, anyway, we got done most of what we meant to do. And we’ve got more planned for this week. We’re moving carefully through the steps of getting it all done in good time, and it will all get taken care of, for sure. It’s just hard, right now, watching my spouse decline… watching their thinking degrade… their physical mobility… their overall health and well-being. It’s hard watching the one person you care for most in the world, let themself just go downhill like that.

If I didn’t care, it would be one thing. But I do care. Deeply. I guess I’ll just go with that.