Brain injury recovery – a learning experience

We need better ideas about TBI / concussion recovery
We need better ideas about TBI / concussion recovery

Every single day, I become more and more convinced that, more than anything else, brain injury recovery is really an exercise in learning.

  • It’s learning to do things differently.
  • It’s learning to know yourself differently.
  • It’s learning new things about yourself.
  • It’s learning to NOT do things that have stopped working — or that never worked, to begin with.

I’ve been watching YouTube videos on neuroscience. Learning about synapses and neurons and the stuff that makes our brains (and central nervous systems) work.

Here’s a video that’s admittedly a bit “dense” in terms of science and terminology, but which I found quite interesting. Did I understand all the terms? No. But I think I got the underlying concepts.

 

Getting back that Sense-of-Self

stones-bambooIt’s an amazingly beautiful day today. I didn’t get enough sleep, last night, and I’m feeling foggy and a little ill, but nonetheless, the outdoors awaits.

I’ve been thinking a lot about how I got my Sense-of-Self back. It has been back for at least a year, now. After feeling like a stranger in my own skin for years and years, I finally feel like me again.

How did this happen?

I think  it’s really been about habit. Developing good routines I can do, every single day, and also developing the discipline to follow through with things. It’s been difficult, but it’s been worth it.

As an example, this morning I took care of a Sunday task that I often leave until the end of the day. It drags me down all day, filling my mind with dread, and sapping my energy. But it needs to get done, every single week. No exceptions. So, this morning after my breakfast, I just sat down and did it. I spent maybe 20 minutes on it, following a series of somewhat complicated steps that have to be done in a specific order. I mess them up, now and then, but this morning I was totally focused on them. And I got them all done in good order.

And by 8:00 a.m. I was done with that, and ready for the rest of my day. I felt so fantastic, I was trotting around the house, and my spouse wondered why I was so chipper.

It’s because I did that unavoidable task exactly the way it was supposed to be done. I followed my own detailed instructions. I did my weekly duty. And the successful and smooth completion of it all left me feeling with a real sense of accomplishment, as well as a renewed sense of myself as a capable and … well, good human being.

I firmly believe that TBI robs us of a Sense-Of-Self by changing our internal reactions and our long-familiar capabilities, and thus making us into someone we don’t recognize. Even the slightest of changes in our accustomed inner experience of life can make us feel like a stranger to ourselves.

But when we re-learn how to do things, and we grow accustomed to the experiences we’re having with them — when those experiences become familiar to us again, just as our old experiences were — we can once again recognize ourselves… and get on with our lives as the capable people we once knew ourselves to be.

TBI recovery is very much about re-acquainting yourself with yourself. It might be a whole new you, in some ways, but it’s still you.

You just need to learn to recognize yourself.

Sharing: Survivors SPEAK OUT! . . . . . . Rogan Grant – from Surviving Traumatic Brain Injury

Rogan Grant – Brain Injury Survivor

 

1. What is your name? (last name optional)

Rogan Grant

2. Where do you live? (cityand/or state and/or country)

Edinburgh, Scotland

3. On what date did you have your brain injury? At what age?

I acquired my brain injury in 2006. I was 35.

4. How did your brain injury occur?

I was attacked outside a nightclub by some customers I had thrown out of my pub the previous week.

5. When did you (or someone) first realize you had a problem?

I knew something was wrong when I woke up the next day. I was admitted to the hospital and then released the next morning. A friend found me unconscious and in a pool of blood and vomit. I was rushed back to the hospital. A few weeks later when I was released, I thought I was OK, but I kept forgetting things. I set the kitchen on fire three times in one week because I forgot I was cooking. Once I even went to bed and left a full meal cooking. I knew then I needed to be around family “for a week or two, until I cleared my head.”

Read the rest of Rogan’s story at: Survivors SPEAK OUT! . . . . . . Rogan Grant | Surviving Traumatic Brain Injury

No exercise, no waking up

rain-on-leavesI didn’t feel like exercising this morning. I just lay in bed and pulled back the curtains… watched the gentle rain fall and listened to it pinging on the chimney cap outside my window. It’s a beautiful day to stay indoors and just chill out… reading, thinking, blogging… just chillin’.

If only.

But if I don’t get up and get my circulation pumping — get on that bike and ride — I’m no good for the rest of the day. I bypassed my morning ride, and I was dragging all day. And that was no good.

So, after I lay there a little while, I got myself out of bed and went for my ride. I’m not sure how long I rode. It was at least 20 minutes, I think. Nothing huge, just enough to wake me up and work up a bit of a sweat. Then I had my big glass of water and made my breakfast. I didn’t lift this morning, because I’ve been lifting and carrying heavy objects for days, now, and my body needs a rest. As much as I’d like to have that morning “pump”, common sense prevails.

I know how unproductive it is, when I overtrain and overdo it, so I’ll use my good sense and not do that today.

Yesterday, I swam again. It’s good. I only swam once last week, in the pool at work. I managed to get in a friend’s pool over the weekend and have a little bit of a swim on Sunday, but it was no workout. Just a cooling-off, really.

When I swim at work, it’s a whole different thing. I go around noontime, when everyone is either eating lunch, or they’re in the gym. I usually have the place to myself, but yesterday there was someone else there. I like to swim hard from one end of the Olympic sized pool to the other, then float on my back and relax, letting my heart rate and breathing go back to normal. It’s probably the most relaxing thing in my day, to just lie there and float… weightless, feeling myself floating free… The other person in the pool looked at me strangely, and I wonder if maybe they thought there was something wrong. But after my heart rate and breathing were back to normal, I went back to swimming… and they jumped out of the pool and went back to their work day.

I’m going to see the neurologist again today, to look at test results. I think this whole thing has been a boondoggle, quite frankly. But I had to follow up on it, because it would be remiss for me to overlook a serious problem that could impact myself and my spouse, on down the line. I’m the sole $upport for us, so I have to take care of myself and do my due diligence wherever possible. I don’t like it, but it’s gotta get done.

So, I’m doing it. I’m not sure what’s going to come out of this. I’m tempted to just bag it and say, “Okay, I have these issues, and you’ve been unable to medically find anything significant to address. I know they’re issues for me, and I need to manage them, so since you’ve got nothing to offer me, I’ll take it from here.”

The medical establishment doesn’t have the nuance and sophistication for people like me, so I’m not going to waste any more of their (and my time) with requests for help that they’re unprepared and unable to give.

Time to just take things into my own hands, and be done with it. I’ve given it my best shot, but it’s time to call an end to this search.

It’s taking up way too much time and energy, and I just don’t have the time and resources to keep chasing this the way I have. Anyway, I’m really just following this up because of advice from my neuropsych(s). I would have just left it alone and dealt with it, myself, but they’ve been so keen on me figuring out the medical piece of this, so I don’t fall.

The crazy thing is, months ago (and before I spent lots of time and a bit of money on this), I could have predicted this outcome. But then, I’m the brain-injured one, so what do I know?

Well, maybe today will see the end to this. If I ever get concussed or brain-injured again, I know where to find these people. But until then (and hopefully that never happens), I’m just going to get back to my life. It’s been interesting, but it hasn’t been that productive.

And frankly, exercise and a good diet, getting rest, keeping active in my life, and really diving into my life experience to learn as much as I can, is turning out to be the ticket to my ongoing recovery.

That’s just fine with me.

Onward!

Are you a TBI Fake? | David’s Traumatic Brain Injury Blog

injured_brain_2AI found another good post at another blog: Are you a TBI Fake? | David’s Traumatic Brain Injury Blog

 

I was accused of faking my brain injury for attention
There is no way to soften the blow of a statement like this. I took what is arguably the toughest hit of my life, had to be rushed to the nearest trauma center with cuts, bruises, broken bones and a damaged brain – and was subsequently called a fake.

As I began my second life as a brain injury survivor, I found myself having to play defense against stunningly hurtful and relationship-ending accusations.

Brain injury is blatantly misunderstood by so many. The healing process for most injuries follows a predictable path.

When I was plowed down by a car back in 2010, my orthopedist let me know that I would be in a cast for three months and that most of my pain would be gone within six months.

Broken bones heal at a predictable rate. In fact, you could have set the Atomic Clock by his prediction. Six months after my accident, almost as if scripted, my physical pain ended.

But not so for my brain injury.

 

Read the rest here: Are you a TBI Fake? | David’s Traumatic Brain Injury Blog

Listen first… then talk

Here's the drawing practice for the day
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:

memory-test-4-29-16

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

circles-3-lines-2-1-r-up-circx-5-hash-UNeven
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:

memory-test-4-28-16

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.

If it works… why mess with it?

forest-walkYesterday, I decided to do things a little differently, and go for my walk in the woods before I started writing. I intended to spend most of the day working on a piece I started about “chronic blogging”.

I had a lot of good ideas in the course of my walk, but by the time I got back, there were SO many, that I just couldn’t keep up with them all.

So, I went back to bed.

Turns out, my daily routine is a routine for a reason – it works.

I really need to stick to my standard approach of exercise, followed by breakfast, followed by writing… followed by either going to work, or having a good hike. If I hike before I write, my brain gets too muddled, and I lose the benefit I got from the vigorous exercise I did earlier.

Walking is exercise, yes. But it’s leisurely. And it’s not always conducive to my writing. I need to trust my gut and just do the thing I intended to do, to begin with.

Another thing that works for me, is talking through my daily life and logistics with my neuropsych. Not delving into my emotional landscape. Not digging up all sorts of old hurts and pains to “heal” them. I totally understand how that’s helpful. But for my purposes, I really need to focus on my day-to-day and manage the things that are functional problems for me.

I’ve been under the weather and feeling wiped out, in part due to my new NP’s fondness for “exploring emotions”.

Good God. Please save me.

Anyway, I’m not doing that anymore. I’ll set the tone and set the agenda by myself. This NP is quite a bit younger than me, and they’ve got a youthful vigor and excitement for “the hard stuff”. Please. I’m an old warhorse. I’ve done the hard stuff. Now I just need to function.

And so I shall.

Onward.

Loss of Self after TBI needs to be taken seriously

all-of-a-suddenEvery now and then, I come across a mention of the loss of Self after brain injury. But not all the time. I come across mentions of poor judgment, poor risk assessment, diminished coordination, sensory issues, mood changes, depression, and a host of other cognitive-behavioral issues.

But not much discussion of the Self – of your Sense-Of-Self.

I distinguish between Self and Sense-Of-Self, in that the Self is a constantly shifting entity — our identities are in constant flux over the course of our lives. But our Sense is what we actually rely on. Our Sense of our Selves is what makes it possible for us live fluidly in the world.

Our Sense of who we are is what I consider a “precursor” to how we live our lives. When it’s stable, it allows us to plan and take action, without constantly second-guessing ourselves. A stable sense of who we are and what we are all about makes it possible for us to simply live our lives. The feeling that we can rely on ourselves to respond in predictable ways that are consistent with our deepest values and beliefs is at the very core of it. Most people take it for granted. But when TBI / concussion sets in, it can have a profoundly disruptive effect.

All of a sudden, you don’t know who you are. You don’t recognize your words, your thoughts, your actions. No matter what you do, things don’t seem right. Even if you are doing things that have been familiar for a long time, in situations that you know well from years of practice, a disruption to your Sense-Of-Self can turn even the most familiar activity into an emotional and logistical gauntlet.

I’m not talking about having trouble navigating new experiences. I’m talking about having long-familiar experiences suddenly seem brand new. We save a huge amount of energy, just by repeating what we know. Our systems are designed to acclimate and then follow the “ruts” we’ve grooved for ourselves. It cuts down on friction, it makes our lives considerably more fluid. But a TBI can disrupt so many parts of a once-fluid process, that even something as simple as making lunch or going for a walk, can become a trial-and-error process.

It’s a real Trial… that’s full of Errors… the kinds of errors we never used to make — and we don’t feel we should even make.

The smooth processes we developed along the way of maturing to adulthood… and then on through the rest of our lives… are so invisible and automatic, we never realize just how important they are. We have no idea how central they are to our identity, our ability to live fully in the world.

Only when they go away after TBI, do we realize just how important they were. But we’ve long since lost the orientation that lets us understand them, one piece at a time.

If you’ve ever tried to give people exact instructions on something as simple as making a peanut butter sandwich, you may know the frustration of losing the fluidity that should be central to your regular life. After concussion / TBI — especially for those who have excelled at their chosen pursuits — the steps for doing things are different. Maybe some of the steps have stopped working entirely, and you have to figure out something different.  So many the skills you once knew by rote… now you don’t. And the fact that they should be easy — but aren’t — is the unkindest cut of all.

And you have no idea who you are. You don’t trust yourself anymore. You may not feel like you even know yourself anymore. You’re cut loose… lost… and you have no idea how to get yourself back. All you know is, things are weird and slow, and you don’t know how to make them stop being weird and slow. Some days are better than others, but they’re definitely not like they used to be.

This is not a small thing. It’s a terrible loss. It’s not just a “narcisstic injury”, it’s a blow to your very existence. It threatens everything you do on a logistical basis — not just a psychological/emotional one. It literally makes it harder to function.  And professionals who file it neatly under a psychological disorder are missing the point.

We literally cannot function — because we don’t have the clear sense of ourselves that’s necessary to do so.

And I believe it sits at the very heart of the struggle of many mild TBI survivors’ struggles.

I also believe it sits at the heart of “self-destructive” behavior exhibited by folks recovering from concussion / mild TBI. I believe it’s what drives us to make the risky choices we make, to take the dangerous actions we take. We’re not feeling bad about ourselves and trying to punish ourselves. We’re trying to help ourselves, by using stress hormones to regular our systems and feel like ourselves again.

As a onetime top performer in my field, nothing has been more debilitating for me in the past years, than losing my well-honed edge… losing that sense of myself as being capable and competent. I was once an important contributor in my field — on the front lines. And I had a sense of flow and fluidity that was second to none. I could just do what I did, without concern for the outcome, because my skills ensured that even if it didn’t turn out 100% right the first time, I could continue to have at it — and eventually things would be set right.

After my fall in 2004, that all changed. No more confidence, no more innate skill. Things got rearranged, and what used to come so naturally to me, now had to be thought through. A lot. Painstakingly. Painfully.

It was crushing. And the only thing that made it better, was a constant “diet” of stress and risk and danger, which kept my system primed for action with all those stress hormones. Adrenaline. Epinephrine. Norepinephrine. And more. Heaven only knows what else.

Of course, it took a toll. It delayed my recovery. But it was the only way I could figure out how to get myself feeling regulated again. It was the only way I could have some sense of control in my life. I know I’m not alone in this. Countless concussed folks “bounce back” from their injuries too soon and dive right into risky behavior that’s misunderstood — and mis-treated — as a sign of self-destructiveness, bipolar disorder, or some other mental health issue.

It completely misses the point. Because people don’t understand the nature of TBI and how it affects us at a core, functional level. They’re quite invested in the standard-issue approaches, and the fact that those approaches don’t produce the kinds of results they seek, seems to indicate a problem with the patient/client — not the approach.

In many ways, we’re still in the dark ages with this stuff. Still blaming the issues on the wrong danged thing, still looking for answers far from their actual source. This may change… if I have anything to say about it. Of course, I’m only one person, but with any luck, others will pick up a baton from the pile that’s lying in the middle of our proverbial living room, and carry it along with me.

One can hope.

Hit me baby, one more time – NOT

Double-whammy
Double-whammy

To date, I’ve counted 10 consciousness-altering impacts to my head, as well as rotational and acceleration/deceleration scenarios, and those are only the ones I specifically remember. There were probably many, many more — because I used to play sports in order to hit my head. The “brain silence” that came immediately after the impact, followed by the mad rush of energy, made me feel like myself again. It quieted the noise around me, and it also gave me energy and focus that I didn’t have under regular conditions. Getting concussed wasn’t a bad thing for me. It was a welcome break from the distractions and confusions of the world around me, and I sought it out regularly.

Now, I never played football on an organized team, so I didn’t have that constant slamming in one practice after another. That gives me some comfort, because it’s not like I had hundreds and thousands of subconcussive hits over the years. But I had plenty — even more than most people can guess.

The other thing worth mentioning is that I used to be a head-banger. This started when I was a little kid. I remember my mother coming into my room, when I was young and stopping me from hitting my head against the wall. She probably heard the impact on the other side of the house, I hit it so hard. I’m not sure why I did it, but I can tell you that it always made me feel better. There was something about the banging that made all the noise get quiet. And I would keep banging until I could feel myself get hurt… and that post-impact silence would set in… followed by the rush of energy (which may have come from the neurometabolic cascade that happens after concussion – if you haven’t read the paper, I highly recommend it (click here for free access) — it’s a lot of science, but you can certainly pick some things up).

Anyway, the last time I banged my head was around 2010. I was incredibly stressed out by my living situation. My spouse was having a lot of health issues, and I was alone in dealing with them. I didn’t dare tell anyone about them, because they’re a public figure and if others knew the details, it could wreck their reputation, as well as their ability to do their own work in the world. So, I was alone. And stressed. And at the end of my rope.

So, I banged my head. The crazy stopped, the silence set in… followed by the biochemical magic that follows a consciousness-altering impact. And I immediately started to feel better.

Then I remembered what concussion does to you, and I remembers what it had done to me and my life.

I haven’t banged my head since. And that’s a good thing.

Of course, I can’t help but wonder if this is going to screw me up in the future… dementia and all that. But I can’t worry about it. I just need to keep moving forward, keep my focus on being of help and service to others. Nothing else works for me.

And certainly, banging my head doesn’t work for me. I can’t necessarily control it happening to me ever again by accident.

But I’m certainly not going to do it on purpose.

Not anymore.

Lessons learned.