Why have I been away?

Sometimes it’s hard to see the path ahead

I just jump-started my TBI blogging again. Looking at my archives, I have only posted six times, so far this month. That’s quite a difference from my past. It’s been for good reasons. I’m getting a lot of things done that have languished for some time.

But I also have been depressed. I get really busy… I exercise regularly… I tick items off my checklists… then I get really tired and feel depressed. No joy left, by the end of the day. No enthusiasm on the weekends. Just slogging through my daily life, pin-balling between hyper-productivity and not wanting to have anything to do with anyone, not wanting to go anywhere or talk to anyone… just waiting for the day to be over.

It’s an odd combination. Because I’m pretty well scheduled, and I’ve got a lot of discipline and focus for the things I need to do. My upbringing stressed getting things done, no matter how you feel about it. Your state of mind was really beside the point. You just got on with life and did your part, even if you had no joy in it. Even if you didn’t care about it. Even if it had nothing to do with you.

If you were depressed, so what? You just got up and got on with your day, anyway. If you were in pain, so what? You just picked up where you could and did your part. Personal feelings and emotions had nothing to do with anything. Getting the work done and playing your role was the critical thing.

I think it went hand-in-hand with being in a rural area, raised by parents and grandparents who’d grown up on farms. When the cut hay has been lying in the field for two days and is dry, and rain is threatening for the late afternoon, you don’t get to lie in bed and say, “Oh, I don’t feel like baling today.” You get your ass up out of bed, and you go bale the hay. You work through any and all weather conditions. You do what is needed by the community, and you pull your weight, so that even if it does rain at 4:00, the hay is all baled and in the hay mow of the barn.

It’s non-negotiable.

And I suspect that’s why depression and mental illness have become more prevalent in society. It’s not that there’s so much more of it, now. There’s just more recognition and acceptance of its very existence. I’m sure there have been many, many people over the eons who have been depressed or had some other mental illness. It was just never allowed to be seen. Or if it was so extreme that it couldn’t be eclipsed and covered up by strict roles and duties, you just got sent away.

Anyway, I haven’t felt much like interacting at all, this month. The shootings in Orlando really upset me. To me, it’s an assault on diversity and community. It’s an attack on human nature and our freedom to simply be who we are and gather with others like ourselves. It doesn’t matter to me if you’re gay or straight — everybody has something about them that is different, and we need to gather with like-minded people to remember who we are. It’s just that the people in Orlando who were killed and maimed aren’t in the mainstream, so many people don’t know how to talk about it or think about it, without looking for a way that “they brought it on themselves.”

I don’t see it as a religious or political thing. I see it as the product of our society that encourages people to take violent action against others, to relieve their own pain. And the politicizing of it by the very people who believe that same thing, really angers me.

And that’s all I’ll say about it. No more comments. There’s too much of that, already.

But back to my present. I really need to start blogging again. Regularly. It actually anchors me and helps me collect my thoughts. And I don’t need to get all rigid about the “right” and “wrong” ways to do it. I just need to do it.

Because the voices crying out that people with brain injuries are broken and can’t be repaired, are too strong.

Because all the fear about concussion often seems to completely overlook the chance of recovery. Concussion is turning into a sort of delayed-action death sentence, and I think that’s wrong. It’s a terrible message to send. But of course, that’s what gets the funding flowing.

Because despite having sustained 9+ concussions in my life, things are going really, really well for me, and I need to bear witness to that. To show that I’m good. That I’m recovering. That it’s not by accident, and it’s not a fluke.

Because, well, this is a huge part of my life. And in the midst of getting everything done, exercising, trying to get my sleeping schedule in order, and generally feeling down, it’s the one thing that can get me out of my head and lift my eyes above my current challenges to show me the precious long view.

I can’t make any guarantees, but I’ve just given myself some really good reasons to re-kick-start my TBI blogging.

So, I expect to see you soon.

Listen first… then talk

Here’s the drawing practice for the day

So, this new neuropsych is kind of a pain in my ass. And that’s fine. Because the last one could be a monumental pain in my ass, sometimes, and it did me a lot of good to meet with them regularly.

Why, pray tell, would that be so? you may ask?

Well, because dealing with people who are completely off-base is good for my reasoning faculties. And it also shows me how on-track I really am, when someone I’m talking with is clearly not recognizing what’s right in front of them.

This new neuropsych, as I’ve mentioned, is 30 years younger than my former neuropsych. They are 15 years younger than I. And it shows. One of the ways that they really show their age, is that they don’t stop to listen and really understand what’s going on with me, and they jump right into fixing things before they have a strong grasp on what the situation is.

For example, I’ve been talking about how I need some help getting to-do items off my list. I have a ton of things I’ve been wanting to get done, and many things that I intended to do in the first 5 years that I had my house. But less than 2 years in, I fell and got hurt, and I was “checked out” for some time after that. I’m just now — almost 12 years later — getting back to a level that’s near (in some ways) to where I was before. In other ways, I’m nowhere near, and I’m not sure I’ll ever be again. But the basic gist of it is that I need to gear up and take care of things that have been languishing and neglected, lo these many years.

And what does my neuropsych give me, but a sheet of paper where I should write down my goal, figure out my motivation, and then do a visualization about what the reward will be, if I get it done. And then write it down in my planner, and just do it… after doing a little visualization about how rewarding it will be to get it all done.

Oh. My. God.

Someone please help me.

I am so beyond that rudimentary approach, and I need something completely different. But when I tried to explain that to them, they just dismissed me — and insisted that visualizing rewards is a cornerstone of making progress.

Okay. So, that’s their opinion. That’s fine. There’s some truth to it. But I really need help just walking through my priorities and seeing where everything fits in my life. I don’t need motivational help. I need organizational help — and getting my head around the big picture of what I’m doing — and why.

It’s not just about getting things off my plate. That’s important, so I can free up my thinking to handle things that are bigger than a breadbox. But it’s also about prioritizing and getting my head around the complexities of my day-to-day.

Unfortunately, I don’t have a lot of confidence in them, with regards to that. I’m not sure I have a lot of confidence in anyone in the healthcare professions, right now. At least, not that I’ve encountered. I’m sure there are excellent doctors and providers out there, but the only one I found who could actually work with me effectively died last year. And even they didn’t exactly do a bang-up job of covering all my bases.

Ultimately — and this is the amazingly profound irony of it all — it’s the people who need help who are on the hook for making sure we get what we need. The very people who don’t have the comprehensive knowledge about all the physiology and possible conditions that might be at work… and who are having trouble thinking and functioning, to begin with… are the ones who have to manage our situations, be our own advocates, and so forth.

If nothing else, as frustrating as my situation is, it’s good practice for me. I’m not sure I’ve ever felt like people could really wrap their heads around my situation, anyway, so this is not new. I just had unrealistic expectations that I could pick up where I’d left off with my old neuropsych and start there with this new one.

Nothing of the kind. They’re even farther back than the last one, and I feel a bit like Kevin Costner’s character in Bull Durham where he has to train an up-and-coming athlete who has a better chance than he at going to “The Show”.

But I guess that’s how things go, as you get older. I’m just not used to interacting with people younger than myself – especially healthcare providers. But news flash – that’s going to continue to happen, so I might as well get used to it.

Okay – pause – let’s see how my memory for that starting image is doing:

Not too bad — I just forgot the hash marks on the left line, and the circles are a little far apart, with the lines longer and the circles smaller.

I’ll try again later.

Anyway, it all comes back to the idea that when it comes to our health and recovery, we are often on our own. It’s sad, but true. And some days, I feel as though I’d be better off just not even dealing with any trained professionals, because the benefit I get isn’t equal to what it costs me.

Sometimes, it is equal. But you know what? Those are the times when I pull out all the stops and put my focus into my own direction and my own program, just using the experts as a reference point.

I’ve got a few weeks before I see them again. And I’ve got plenty to keep me busy. I’ll figure something out, I guess.

Onward.

Training my new neuropsych – and myself

Here’s my memory exercise for today – look at it, memorize it, then try to draw it later, when I get to the end of this post.

Don’t get me wrong. I have the utmost respect for my new neuropsych. They have great intentions, they are smart — brilliant, really — and they are driven and determined to help people who are in need of assistance. I’m lucky to have been connected with them.

Here’s the thing, though — they’ve got 30 years less experience than my former neuropsych. And that really shows. It shows in their pacing, their approach, their focus. It’s my understanding they’ve been working in clinical settings that have been largely academic, for most of their career, so far, and they’re relatively new to individual clinical practice.

My former neuropsych had 40+ years experience in clinical and rehab settings. I believe they once ran a rehab center, in fact. Or two or three. Anyway, they had decades of high-level experience in rehabbing brain injury survivors, and I benefited from that for the past 8 years or so.

Now I’m working with a “spring chicken” — it’s not the most professionally respectful term, I know, but that’s how they seem to me. They’re 15 years my junior, which just amazes me… And it shows.

Good God, do they have a lot of energy. It’s that kinetic, over-the-top-can-do kind of enthusiasm that people have before they hit a lot of walls, personally and professionally. They have an exuberance and optimism that I used to have, too.

Then I got hurt. And life happened. And a lot of crap came down the pike for me. And now I am where I am now — with a pretty big deficit where all my own exuberance and optimism used to be.

Although… maybe that’s not entirely true. Maybe I still do have that energy — just not to the same willy-nilly degree that I used to. Or maybe I do, and I just need to bring it back. Access it again. Play off the energy of this new neuropsych, who is in some ways like a breath of fresh air, compared to the dour pessimism and personal cynicism that sometimes “leaked through” with my old neuropsych.

Oh, another thing just occurred to me — I’m working around a lot of people who are my age or older. And that’s affecting my perspective, too. I work in an older environment, very established and staid, and compared to my peers, I feel like a spring chicken, myself.

So, I’m balancing out the energy of youth, as well as the balance of age. My new neuropsych is clearly still learning about things like how to pace their speaking, and how to give me space to sort things out. They move too fast for me, at times, and it’s frustrating.

But it’s good to get pushed. Again. After years of being accommodated. I need to be pushed. Quit feeling sorry for myself. Really work on my reaction time. And get back to my memory exercises. See above.

Here, let’s try to draw what I had at the start:

Not bad – I just had the proportions off a little bit, but all the elements are there.  The right circle with the “x” is higher than it should be, and the vertical line off it is longer than the original. Also, the hatches on the left line are longer than they should be.

I’ll have to try again later today, and see how it goes.

Gotta get back to doing my exercises. Get myself going. And continue to make progress. Keep moving forward. Keep at it – give myself time to rest – but keep at it.

Onward.

After so many years in confusion and pain…

It’s been a long time coming… but it’s here

I can honestly say that life is leveling out for me, and I now have what I would consider a “regular” life. And starting from there, things are becoming truly exceptional.

The “regular-ness” is amazing and phenomenal in its own right. I have been thinking about how many years I spent in confusion and frustration, always playing catch-up, always struggling to keep up appearances of normalcy, always feeling — and being — so behind. And never knowing why that was.

Little did I know, concussion / mild TBI had knocked the crap out of me. I’m not like folks who go through their lives at a normal pace, then have a concussion / mTBI screw them up. I was always screwed up by brain injuries. I started getting hurt when I was very, very young (maybe even having an anoxic brain injury – from having my air cut off – when I was an infant, according to my mother), and I continued to get hurt regularly over the years. I never got hurt badly enough to stop me from diving back into things. And nobody around me knew that I was hurt badly enough for it to throw me off.

I kept all that pain and confusion inside, for as long as I could remember. It was just one day after another of working overtime, trying to keep up with everything… and failing. Always coming up short.

Now, suddenly, I feel like I’ve come out of a long, dark tunnel into the light. No, not suddenly… It’s been a gradual process, so my eyes have adjusted to the light. But the realization of where I am and how I am now, is sudden. It’s like I’ve at last joined the land of the living.

And I am amazed.

How did this happen? How did I get here? It’s been a slow building process, with pieces of the puzzle floating around in the air… taking their sweet time getting plugged back together again. But once they click into place, they click.

Phenomenal.

So, now I have to ask myself — how did I get here? How did I manage to do this? I had all but given up on myself and figured I’d just be struggling and battling, all my born days. But I don’t feel like that anymore.

How did this happen?

I think there were a number of factors:

• Having someone to talk to on a regular basis – first, my neuropsych, then another counselor who has been able to talk me through stickier emotional things that I don’t like to discuss with my neuropsych. Having someone to just listen and then get to interact with, has had a hugely positive impact.
• Deciding that I needed to get better. Even when everyone was telling me I was fine, and I didn’t seem at all strange or brain-damaged, I could feel that something was off. I just wasn’t myself. Nobody else seemed to get it. But I did, and I was determined to do something about it.
• Getting my Sense-Of-Self back. This was the biggest piece of things, by far. It’s been the key, because restoring my Sense-Of-Self makes everything else possible. It absolutely, positively, is the biggest piece of the puzzle.

How did I do that? I’ll be writing about that in the coming days and weeks, as time permits with my schedule. But basically it’s this:

1. Find a small but significant way I am struggling — a day-to-day required activity that “shouldn’t” be difficult for me, but which is a huge challenge. Getting ready for work each day is a perfect example for me.
2. Develop a system and a routine for doing that small but significant thing the very same way, each and every day. Making this system into a routine not only makes it predictable and comfortable, but it also keeps my brain from being overtaxed by having to reinvent the wheel each and every day.
3. Really pay attention to that routine, and really dive into it with all I have, sticking to it like glue.
4. That routine then “rewires” my system — brain and central nervous system and autonomic nervous system — with familiar and recognizable patterns.
5. These patterns become something I can then rely on, to know who I am and what I am about… and what I can reasonably expect myself to do under regular circumstances.
6. In times of uncertainty and insecurity, I can go back to those patterns and find comfort in their familiarity. So that not only gives me confidence in myself, but it also gives me a refuge where I can find some self-assurance again — even in the smallest of ways.

It’s all about building confidence over time.  Predictable patterns. Predictable behaviors. Predictable reactions. And that can lead to predictable outcomes.

Our brains are pattern-seeking by nature, and when we don’t have predictable patterns, we have the sense that we are in chaos — we are threatened. Building in predictable patterns is the key, for me, to a healthy recovery from PCS / mild TBI / other brain injury issues. And anybody can use this. Anybody can do it.

That includes you.

After TBI – how do we get our sense of self back?

I’ve spent a fair amount of time thinking (and writing) about what it’s like to lose your Sense-Of-Self to TBI – click here to see posts I’ve written about this subject.

And it would be remiss of me, if I did not write (and think) about what can be done about it.

Because after over 10 years of being so very, very lost, having no idea where the person I was had gotten to, and being so far removed from any sense of who I was, and what I was about… I actually started to feel like myself again, this past spring.

It only took me 10 years and 5 months… but it’s here.

It’s tenuous, and some days I still wonder WTF, but I have to be honest and say, I’m feeling more like “myself” than I have in a very long time.

Maybe ever. After all, I’ve been recovering from repeat TBIs, since I was a kid.

So how do we do it? How do we get there?

For myself, consistency is the key. It sounds simple, I know, but there it is.

Consistency.

Doing the same things the same way, over and over and over again, until the wiring in my brain is re-routed to the newly familiar tasks, and it can do things by rote.

Of course, there are many thing I still have to really work at — my memory and resistance to distraction, among others — but for basic everyday tasks, and routine functioning… I’ve got an amazingly stable sense of where I’m at, and how I can get there repeatedly, each day.

I’ll be sharing more about this in the coming days and weeks. It wouldn’t be fair for me to withhold that information.

Onward.

Memory test image for the day – pretty close, actually

And here’s how I did with the drawing today. More on this later.

 

Image memory training seems to be changing things

It’s been about 5 days, since I started training myself with image memory exercises.

I am noticing that I hear music better. I catch more of the details in songs I have been listening to for years. It’s like I’m hearing them for the first time.

I am getting better at picking up details and noticing textures and variations in visual experiences.

I am also very, very tired. Brain is tired.

More on this tomorrow, when I do my next image memory practice.

I created a new page with all the images on it, so you can use the ones I have:

Images for Memory Practice – click to go to the page (warning – it’s a big page, there are lots of images, but I hope it’s worth the wait for you)

Onward

How things get jumbled up

Here is what I meant to draw: Memory Test Image – study it, then draw it from memory later

And here is what I drew:

I kind of had the right idea, but being tired and rushed… heck, this doesn’t even seem like a Real Test.

I will have to try again tomorrow, when I am more rested.

And less rushed.

Losing your Sense-Of-Self Is the Worst

Take a long look at this image… then read what is below it. At the end, without looking at this image again, draw it on piece of paper.

Memory Test Image – study it, then draw it from memory later

I’ve written before about restoring a lost Sense-Of-Self, and I really feel drawn to do so again. As a matter of fact, I never fully completed the work I started, some time back.

When was it? A year ago? It could be.

Well, at least I am coming back to it.

Here are some of my thoughts from the section I’m working on:

And What About Sense-Of-Self?

The Self alone is not the only thing that can get lost after TBI. Along with the Loss of Self, there’s the Loss of your Sense-Of-Self¹.

Your Sense-Of-Self is that level of comfort you have with yourself. It’s how comfortable you feel in your own skin. It’s the sense you have of being “in your proper place” that gives you confidence and security. It’s a very physical sense, a visceral sensation, that sets the stage for what our mind thinks about our surroundings. Our sense tells us if we’re safe, if we’re competent, if we are up to handling the world around us.

If your Sense-Of-Self is disrupted, nothing feels safe. Nothing feels familiar. You may recognize your surroundings, but they don’t feel the same. You don’t feel the same. And because you don’t have a consistent sense of yourself in your surroundings, it sets off all sorts of alarm bells that you are not safe. IT IS NOT SAFE. Cue the fight-flight-freeze response. Cue the adrenaline rush. You’re on edge… often for reasons you cannot detect or determine. Something just doesn’t feel right. And that “something” is you.

As I discussed earlier, the “Self” is the part of us that keeps reliably showing up. It’s the part of us that we recognize as uniquely us, which sets us apart from everyone else, and feels familiar and comfortable on a deep, fundamental level. It’s who we are — and who we can expect ourselves to be in the course of everyday life. And our Sense-Of-Self is the level of physical, mental, emotional, and spiritual comfort we feel with this familiar Self. Our Sense-Of-Self is the underlying foundation of confidence we have in living in our own skin, and our level of surety we have in what we believe we will do under different circumstances. In many ways, the Sense-Of-Self is our safety net that allows us to walk into unfamiliar situations with the confidence that we will “just know” how to handle conditions we may have not encountered before. We’re solid in who we know ourselves to be. We have faith in our Sense-Of-Self. We can depend on the person we have become over the course of our lives, to do the kinds of things we expect in even the most challenging situations.

And when that Sense-Of-Self is damaged, all hell breaks loose. Literally. Not only do we not know who we are anymore, but we also have no one to reliably depend on to make the right decisions and take the right actions in the future. We watch ourselves doing things and handling situations in ways that we never would have handled them before. We hear ourselves saying things that don’t “sound like us” and that seem to be coming out of a stranger’s mouth. We witness the internal reactions to things that never used to faze us before – we explode inside, when we drop a spoon… we get tied up in knots when we can’t understand what someone is saying to us… we get bent out of shape over little things that we rationally know should not be bothering us… we weep bitter tears for hours over things that other people take in stride. All of these experiences tell us that we’re living in a stranger’s life, and the person we once were – who we worked so hard to become – has abandoned us to the world and left an idiot it their place.

And that idiot keeps screwing everything up.

Our Sense-Of-Self becomes damaged… fragmented… shattered. Over time, one experience after another of watching yourself behave like a stranger undercuts the most basic foundations of our confidence, and erodes all the assumptions and knowledge we’ve built up about ourselves in the course of a lifetime. Your best friend and longest companion – the person you once knew yourself to be – has deserted you without a trace.

1The hyphens are mine, because I am treating the sense as a distinct thing in itself

…

That’s part of it, anyway. There’s more to come.

I just need to collect myself and get ready for my next Big Adventure.

. . .

Okay, now remember the image at the top of the page? Maybe, maybe not… Get your paper and pen / pencil and draw what you recall it looking like.

My first drawing attempt after writing a post with lots of images in it

Here it is – what I just drew, about 30 minutes after posting the original at the top of my post… writing a pretty long piece with a bunch of similar pictures in it, and really trying to remember what I’d seen:

First memory drawing attempt – 30 minutes after study

Now, here’s the original I was trying to remember:

That diagonal line on the right is… wrong. And I didn’t realize it was wrong, till I thought about the black dot I needed to draw. So, I think I need to spend more time thinking about the whole picture, rather than focusing on the individual pieces. That can probably help me.

I’m going to keep studying this — and also work on the width of that bar at the top and the placement/size of the big white dots.  I’ll keep working throughout the day… and also see if I can replicate the images from the past few days. These are quick little things I can do to see how I’m faring, overall.

Onward.