The slow return to normal – and beyond

Kind of what it feels like

So, the upheaval over the accident a week ago has begun to settle down. I truly cannot imagine a worse time for life to be disrupted. It’s been a roller coaster of tears and anger and frustration and confusion, with some pretty intense extremes.

I really don’t have time for this sh*t.

I’m not being selfish and insensitive. I really feel for my spouse and all they are going through. It was a really traumatic experience, and I totally understand the reasons for the tears and the anger and all the emotional upheaval. I truly do understand. And I’m there for them to support them as they heal. And I have to deal with my own emotional stuff, too.

The thing is, life goes on, and I have a lot going on with me, just to keep the ship sailing in the right direction. I have to keep functional at work. And I have to finish my own personal projects which are a way for me to A) earn some extra money now, and B) set me up for future income in the years to come, when I cannot do this 9-5 work thing anymore.

I’m feeling less and less capable of dealing with the workaday world, each day, and I know I need a change. I’m not happy with how my brain functions at work – I’m forgetful and distracted and I am not functioning at the level I want to be at. I feel so marginal. I think it’s a combination of brain injury stuff and motivation and the general environment. When you’re dealing with TBI, you have to put in a lot of extra effort and find the “special sauce” that keeps you actively engaged in your life. Then things can go relatively smoothly (on a good day).

But if you take away the motivation and the joy, the sense of purpose and connection, everything gets harder. A lot harder. People at work are very nice, and I’ve had worse jobs, but they’re cliquish and petty and we have very, very little in common.

It becomes more obvious to me, every day, that I cannot continue to make a living, doing what I do the way I do it now. I am wearing so thin, it’s a challenge just to keep my head in the game and show up 100% each day. I really friggin’ hate the 9-5 scene, with the cubicles, the pettiness, being stuck inside all the time, and being in an artificial environment. It also makes me nuts that the people running the show don’t seem to be interested in actually running the business for profit, so when they come up short, people get cut, and it leaves me feeling quite vulnerable and exposed.

That will never do. Someone else who can’t run their business is going to dictate how my life develops? Oh, I don’t think so. It’s really wearing thin with me, and I need to get out. I’ve started counting down to when I can leave — not sure when that is, but I’ve got this countdown going in my head.

So I’ve been putting a lot of my time and energy into developing concepts and projects that can get me out of that environment. I continue to get up each day and go through the process of living my life and building the pieces I need in place for myself in the future. I’m very clear about my ongoing direction — there’s a lot of writing and publishing and “information marketing” in the cards for me — and I’m very clear about how to get there. Plus, there are a lot of resources online to help me get where I am going. So, I’m fairly confident these ideas will take flight.

It just takes a lot of work and a lot of focus. Every extra hour I have, when I’m not eating or sleeping or trying to relax for just a few hours, gets funnelled into my Great Escape. And having this car accident intrude on my focus and having to process all the drama around this event has really been sucking the life out of my activities.

I’m not feeling like I have the wherewithal to go through this whole post-traumatic process with my spouse, and deal with it along with the rest of my life. It was traumatic for me, too, because whatever happens to my spouse, happens to me, and it was pretty intense, being at the hospital and not knowing what the hell was going on. And the car being wrecked… that’s not so great, either. Working through it all… it takes time, and time is something I just don’t have much of.

The thing is, in the back of my mind, I am absolutely certain that things are going to turn around for us. My personal projects are solid and valuable, and I know a number of businesses which have a real need for them. It’s only a matter of time, till I can break free of where I’m at.

It’s the getting there that takes so much time and energy. So, I’m just keeping steady… slowly returning to normal… sitting through the tears and anger and fear and anxiety… looking for every opportunity to change and improve, picking and choosing how I spend my time.

I’m also continuing to grow and expand and develop. Getting new ideas. Following through on them. Testing and seeing what works and what doesn’t, and just staying steady. There’s none of that old haphazard approach, where I would just throw something out there and hope for the best. I’ve got plans in place, and it makes all the difference in the world.

And so it goes. I have to keep current with my sleep, as well as my nutrition. I need to keep on with the everyday, as well as reach beyond to what’s yet to come. I’m feeling really positive about the direction I’m taking.

I just need to get through the fallout from this accident in one piece.

Onward.

“Just breathe” is sometimes easier said than done

Okay, now that I have opened up the Pandora’s box on this chronic pain and have started paying attention to my muscles when they move, I’m realizing that one of the reasons I don’t always breathe evenly, is because it hurts to breathe.

How unfortunate.

The simple act of filling my lungs causes my shoulders to lift, which hurts.

It ties into my neck, which also starts to hurt.

And my ribs expand, which also is painful.

Good grief.

Oh, well. I’ve been pretty active, physically, which has something to do with it. I’ve really been pushing myself, lately, lifting heavy weights and doing movements I haven’t done in a long time. I feel much better when I lift heavy weights. I find it very soothing.

At the same time, thought, I tend to be physically active a lot – especially in the winter, when I try to get out and get active as much as possible. I actually do better in the winter, since I can warm up — while in summer I can’t always cool down.

So, I’ve been pushing my body, exercising muscles a lot, and all the extra lactic acid along with the micro-tears in my muscle tissue… well, it’s adding up to a whole lot of pain. Especially when I breathe.

So, I need to really work on that. It’s hard to relax, when I’m not breathing regularly, but my body instinctively tenses up and avoids the pain that comes with deep breathing.

You see my quandary.

Oh, screw it. I’m going to eat some dinner, have some more Advil, take a long hot shower, and crash. I’m pretty wiped out, so I should be able to sleep reasonably well. And when I sleep, I’ll be breathing regularly, so my body will be able to settle back into a rhythm.

Here’s hoping.

What do I do with all this pain…?

There’s lesson in there somewhere

I started a new exercise discipline yesterday. Basically, it’s about re-training myself to move. I have a lot of pain and mobility issues, which I usually push right through. But lately, it’s been worse. Life goes on and doesn’t wait for me to get out of pain before it sends things my way. I have had a lot of work to do around the house and yard, lately, as well as helping my elderly neighbors with some upkeep their homes. Lifting and pulling and hauling… it’s been a lot, and it’s not going away soon.

So, yesterday while I was surfing around the web in the morning (before going out to do hard physical work for 3 hours) I came across an approach that addresses the underlying problems with physical pain — basically, the body not moving properly. We can get used to compensating for injuries and change the way we move, and in the process, our muscles get used to doing things they’re not really built to do. And we can get torqued and turned around and stressed in ways that really shouldn’t be.

I’ve had a lot of injuries over the course of my life — head injuries just part of them. I never broke any major bones when I was a kid, but I fell a lot and turned and twisted ankles and joints, jammed fingers and toes, and generally got all twisted up and wrung out. I was very active — and I had crappy balance — so if you put 2 and 2 together, you get a lot of slips and falls and injuries.

I was also on high alert a lot as a kid. I couldn’t hear properly, couldn’t make out what people were saying to me, and I had to really listen hard, to keep up. Nobody realized this, so I had to just deal with it myself. I also had a lot of attention problems, light and noise sensitivity and sensitivity to touch, so I felt like I was always being beaten. Someone would just touch my arm, and it would feel like they were hitting me. It was nobody’s fault, that’s just how it was. My parents were kind of rough with me at times, but even if they’d been the most caring and patient and sensitive people in the world, it still would have felt like they were beating me.

So, there’s that. I still have issues with being sensitive to touch.  I try not to think about it, because it really gets to me — and it’s worse when I’m tired, which is when I tend to get more emotional… so I really try to not think about it.

The net result of all of this, is that I’ve developed ways of moving that really compensate for those things. I’ve been on the defensive for a long, long time — avoiding making contact with people, avoiding people who are demonstrative (especially women), and just keeping to myself, because it’s so much less painful to be away from people. It’s heaven, actually. But outside my solitary heaven, there’s a world I need to move through, and I’d like to do something about all this physical pain I’m in.

So, I started doing these exercises, which are slow and controlled and involve a lot of resting and releasing tension. It feels great, when it kicks in. The thing is, it reminds me of how much pain I’m in, and it shows me how far I have to go, to really get moving properly again. My movements can be very jerky and clumsy, when I’m moving slowly — this new program says that will change as my brain is retrained to move. For starters, though, it’s a little disheartening.

But at least I have a place to start.

It’s also oddly emotional. I’ve been getting really upset over little nothings, this morning. Fortunately, I am by myself, so no one needs to be hassled by my mood swings. I’m just letting the emotions come up and then move on.

It all passes. That’s the one thing I’ve learned through all this — emotional volatility can be so extreme — and so quick. It doesn’t make sense to stay stuck in the emotional stuff and make more of it than need be. I just have to breathe and stay calm and let things just be… then reset my attention to something positive, and move on.

Physical pain is an interesting phenomenon. It can be so emotional (I’m not a fan of that), and it can be so pervasive and inescapable. I’ve been living with inescapable pain for nearly 50 years, and it’s no friggin’ fun. It’s taught me an awful lot, and it’s also altered my life in significant ways. I know what things will improve it, and I know what makes it worse.

So, I’m doing what makes it better. And I’ve got this new exercise routine that looks promising. I just need to do it — regularly and consistently. That is the best way to make progress.

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!