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.

Only the connected survive

board-connectionOn my morning exercise bike ride, I came across a great blog post about rising suicide rates in America and the treatment gaps that may contribute to the sudden rise – http://1boringoldman.com/index.php/2016/04/25/whats-missing-2/. There were some great points made.

There’s a second post following that about how our official approach to mental health problems — develop drug therapies — correlates with less focus on actual treatment beyond a pill. Both of them are good food for thought.

The thing that strikes me is that I’m not surprised.  I have been suicidal a number of times in the course of my life — although I never acted on it. And I know very well the feeling that it’s pointless to go on, because there’s nothing I could ever do to change my circumstances, and nobody really cares, anyway. Personally, I think that if I’d grown up with a mobile device, I probably would have put an end to my suffering many years ago, because even if your device does make you feel connected, it’s doing the exact opposite.

“The one thing we know for sure is that interpersonal isolation is a part of suicidality,” says the author of the blog, and that sounds about right to me. Feeling cut off from your world, unconnected, alienated, adrift, with no direction, no anchor, nothing to give you a sense of where you are in the world… what’s the point of going on? What indeed?

And with traumatic brain injury, that can be a real problem. Because we can lose our sense of our Selves. We can lose all connection with ourselves and who we are. To me, loss of a Sense-Of-Self is a major contributor to suicide risk. Because you’re not just losing your sense of connection to others. You’re losing your sense of connection to yourself. If you can’t feel yourself, how can you feel connected to anyone else?

It’s a problem.

But I didn’t actually start thinking about this post, in terms of suicide. Rather, I was thinking about my work situation, and how isolated I felt myself become in the years after my TBI in 2004. I’ve been thinking a lot about why — after 25+ years in high tech — I feel like an outsider and an amateur at times. It makes no sense. I have a ton of deep experience, and I have the kind of expertise and insights that you can only get from doing what I do for two and a half decades — and longer.

So, why do I have such a skewed vision of myself and my place in my chosen industry?

I believe it’s because of my lack of connection with the larger community. Fatigue is a major challenge for me, as is extreme sensitivity in groups and crowds where a lot of people are talking, and conversations shift and change with the winds. There are a number of tech meetups in a nearby city, but I haven’t got the energy or the inclination to go out and meet people. There was a professional conference just a few weeks ago that I had signed up for, but I was too tired to go.

So, I missed a chance to connect with others and widen my professional circle.

And that’s a real problem. To stay current and “relevant” — as well as find out about decent jobs — I need to get out there, mix and mingle, and get seen.  Talk to people. Connect with my community, my tribe. I’ve been far too isolated for the past 10+ years, and I need to do something about that.

Of course, I’ve been getting myself back on the good foot, and I’ve needed to heal. But now seems like an excellent time to start branching out again, to see what more I can make of my life and my career. That includes branching out in my current job, even though it may not actually be around for much longer. I just need to do more connecting with others. Because like life in general, the more connected you are, the better your chances of survival.

So… onward.

Great weekend… and a big week ahead.

Calming it down, one breath at a time
It’s all coming at me pretty fast, but if I keep relaxed and keep breathing, it can all happen. It can all turn out pretty well.

I had a full and productive weekend. I caught up on a number of things I’ve been needing to get done for weeks, now. I also got some things done around my yard that HAD to get done before it rains later this week. I feel pretty good about getting those things done. It was not a small task, but I did it.  Woot.

Some important-but-delayed things I did not get done. But I got enough important things done, that it offsets the disappointment. And it gives me more motivation to get moving on those things I didn’t finish (or even start).

I’ve also been working on my breathing. Focusing on relaxing and feeling where my body is “at” — where I’m tense, where I need to loosen up, where my breath seems to have stopped. I need to keep it moving, not get stuck in fight-flight, which is what happens at times, when I hold my breath unconsciously.

Years ago, I was very intent on working with my breath and getting in touch with my body, so I could more effectively manage stress. It was a regular part of my daily practice, and it did wonders for me. Somehow, I got away from that. I got caught up in everything else, and I was in serious survival mode for several years, while I dealt with creditors and paid down my years-salary-worth-of-debt. I lost sight of the big picture with my approaches, and while some things improved in my life — like my job situation and my perception of myself in the professional world — other parts fell by the wayside.

Including my breathing. I’m working on that again. And swimming is a big part of it — since it involves both movement and breathing. And it’s great exercise. Just great, great exercise.

This week is a pretty big one for me. I have my weekly neuropsych appointment, when I work on problems with making progress and getting things done. I have a whole lot of things I need to get done on a regular basis. I’ve been doing them for years, I just haven’t been doing them as efficiently as I should – and it shows. I may need to take some of them off my to-do list and put them on my ‘would be nice to do’ list… and then not worry about them till later.

One project, in particular, has been drawing a lot of energy off the other projects I really need to do. It’s training materials for people who are in a certain part of the job market and don’t understand how things work.

The thing is, if I start on that, it’s going to be pretty all-consuming. It’s not just some training materials — the whole plan also involves public speaking, public appearances, and a lot of writing and publishing and networking. And I just don’t have time for that, now.

It’s a great prospect for me, and it could bring in a fair amount of money for me, but I have so many other things I want to be working on, I can’t really afford to spend the time on it, to do it full justice.

So, I’m tabling that — putting it on the “back burner” to simmer for a while. I’m really treating that like my backup-plan “B”, in case I lose my job or the 9-to-5 thing doesn’t work out for me. That would be the ideal time to cut this project loose and set it free — when I actually have time to fully devote to it.

I’m in the process of cooking up a number of other projects, many of which I find really inspiring and motivational. So, I need to make room for them, and find where I can fit them, while not burning out. I’ll work through this with my neuropsych this week — and in later weeks, as well.

In addition to that, I’ve got a town meeting this week, when we’ll discuss the fate of a company that wants to expand. I’ve had my ups and downs with the board I belong to — they don’t always seem to respect me, and they sometimes ignore me or talk over me. People in town have laughed at me, when I asked one of my “stupid” questions, which was completely disrespectful (and ill-advised, since the board I’m on makes decisions about what people want to do on their properties, and I’m not the sort of enemy you want to have). I let that go, though, and I continue to serve on the board. It connects me with the larger community, and it also puts me on good terms with the local authorities. It’s a lot easier dealing with the local police, when they run my personal details and realize I’m also an “enforcer” who serves the public good.

I probably would have gotten in more trouble, had the friction not dissipated when the cops realized who I was and what role I play in local government.

Another thing is, I’m seeing my neurologist later this week to talk about the headaches and my other issues. Actually, I’ll be seeing their assistant, as the neuro proper has kind of washed their hands of me. They didn’t find anything on the MRI (even the DTI-MRI) that gave them any clues about what was going on with me, and since they can’t diagnose me with anything, how are they supposed to treat me (and bill the insurance companies)? I feel for them, but I don’t appreciate being pushed aside.

Fortunately, while I was sorting through my stack of insurance statements and various papers and notices, I found a promotional flyer for one of those services that gives you access to second opinions by highly qualified physicians and healthcare experts. I’m going to check in with them, to see if they can help me, because this current neuro approach is not working. I really don’t need to take hours out of my day to drive to an office where I’m just going to be brushed off, and my concerns aren’t going to be taken seriously.

Just as an example, the neuro-in-charge told me that my concerns about falling and having a worse TBI than the one I had before, were unfounded. They told me that concussions are NOT cumulative, which contradicts just about everything I’ve read… and after weeks of consideration, I have a lot of reservations about their abilities and willingness to be of help.

Then again, I do fit the profile of someone in the “miserable minority” — I’m very much like the first individual profiled in that seminal 1996 paper, which touched off a chain-reaction of further studies and diagnostic / treatment approaches to folks with lingering post-concussive symptoms. So, maybe the neuro was referencing that profile.

My own feelings of insult and dismissal aside, the “miserable minority” approach may have done more to perpetuate misery, by steering away from the functional and structural issues that come along with traumatic brain injury, and focusing so deeply on the psychological factors.

I’m not saying psychological factors don’t come into play. I’m saying there’s more to it than that, and it’s my belief — after many, many years of unfruitful and counter-productive therapy approaches, followed by amazingly fantastic progress after far fewer years of basic functional retraining — that a focus on psychology, without addressing the underlying neurology, has done more to perpetuate PCS than anyone would guess.

Of course, people mean well. They’re just misguided. And they’re so caught up in proving that they’re right, and they deserve a place at the rehabilitative table, with all the respect due highly trained professionals, that they “circle the wagons” and get Balkanized — cut off from others, hostile and uncooperative and territorial, and always ready to battle over some piece of territory.

Unfortunately for those of us who need their help, we get sucked into that dynamic, and that’s no good for anyone.

But there it is.

There it is.

Friday is free and clear for me — no meetings, no appointments. I do need to do some shopping this week to pick up some black pants for my business trip next week. I’m going to be presenting at a client conference, and I need some black pants. Or maybe I don’t need to go shopping. I have a couple pairs of black pants I can probably wear. They’re just not as casual as the conference wants us to be. It’s definitely “dress down” — although we still need to present in a professional manner.

I also need to practice my presentation. I’m doing one technical talk that’s only about 10 minutes long, and I’m going to be “on call” to answer questions about the company’s full product line, which is a pretty extensive collection. I just need to  have a quick 2-minute “spiel” I can launch into, for a variety of topics. That’s probably the biggest undertaking of this week, and I’ll be practicing while I’m driving to and from work, as well as to and from my appointments.

Memorizing things used to be easy for me as a kid. I can still memorize things, if I go over them 30+ times. 35 times seems to be the magic number, but I don’t have that kind of time — 35 times for each of the 10 different spiels is 350 separate practice sessions. At 2 minutes apiece, that’s 700 minutes (11.66 hours), minimum. I can break it up, sure, but it’s still a lot of time to spend.

So, again, I’ve got to pick and choose.

And so, I shall.

Onward.

Getting my body back, too

balance-figuresI’ve been concerned about falling, for some time, now. I get lightheaded and dizzy, and I sometimes lose my balance when I’m tired or I’m distracted (which is often how I feel). I’ve seen a neurologist about possible neurological bases for this, but the MRI didn’t come back with anything meaningful that they could do anything with. Also, I don’t have a condition they can diagnose, so they can’t bill the insurance company, which means I can’t get much in-depth help from them. They need to pay their bills, and if the insurance won’t cover what they’re doing for me – and I certainly can’t cover it all – then nothing’s going to get done.

Which kind of sucks.

But frankly, it doesn’t surprise me. I have been steering clear of neurologists for some time. Only after my neuropsych encouraged me to dig deeper, did I agree to try again. And the one they referred me to moved out of state, so that’s that. This one was another good prospect, they thought, but my experience is turning out different from their expectation. No surprises there.

I’m going back in another week to follow up and put this whole thing to rest. All they can tell me is that I’m probably not sleeping enough, which my old neuropsych thought was “preposterous” – but I can kind of see their point. When I’m tired, my brain doesn’t work as well. And balance is very much handled in the brain. So, fatigue could conceivably be a source of imbalance.

Still, there’s no guarantee that I’m going to ever actually catch up on my sleep and feel fully rested. I wear out easily, and I don’t have a life that allows me to get naps when I need them. Not yet, anyway. I’m working on that.

Anyway, I’m not going to get all bent out of shape about it. I’m meeting with a wellness coach/personal trainer at work today. That’s one of our employee benefits – an on-site wellness consultant – so I’m going to take advantage of it. I’m going to see if they can tell me some things I can do to strengthen my overall system, to give me better balance, physically speaking.

Think about it — the body moves as a result of muscles coordinating their movement. And keeping your balance really involves a lot of muscles. I sit and stand — stationary — for most of the day, every single day, so I don’t use those muscles as much. And that’s no good. So, I’m hoping they can show me ways to strengthen, as well as get more flexible — that’s another piece of keeping your balance.

I’m also working on really improving my sense of my own body and where I am in space. I get pretty banged-up from doing yardwork and chores around the house, because I run into things (but don’t realize it), and then I end up with bruises from impacts I can’t recall. I’m so focused on what I’m doing, that I don’t even notice the impacts. So, yeah, there are two things going on there, but I’m thinking that if I can at least improve my sense of where I am, relative to sharp objects and hard surfaces, I can possibly look a little less like I got in a bar brawl, after I’m done cleaning up the yard😉

The way I’m working on that, is by really paying attention to my body during the day – noticing where I’m tense, and focusing on relaxing it. I’ve been watching videos of Systema — a Russian martial arts practice that centers around breathing, relaxation, and body awareness. Some of the things that they do in the videos are amazing — and the folks doing it aren’t these monster-ripped superheroes who overpower their opponents with sheer force. They’re average-looking folks who you’d never expect to be able to do the things they do. Because they know their bodies, and they relax and let themselves just respond to the situation.

I don’t think I’d ever do Systema training, because of all the hits and the falls. I’ve had enough of them in my life, already, and I don’t want to push my brain’s luck. But I did get a book from them a while back about breathing and improving your body sense, and I’ve been reading that on and off, over the past year. I’m getting back to it, now, and it feels pretty good. Just getting a better sense of my body, how it moves, how it feels when it moves… when it’s tense… when I need to breathe… it’s good.

It’s also helping me sleep. I get so caught up in my head, that my body can’t catch a break. So, focusing in my breath and also trying to feel each and every bone and muscle in my body, and relax as much as possible… that gets me into a relaxed state that gets me “down” before I can get halfway through. I’ll start at my toes, and by the time I’m at my knees, I’m out.

And that’s great. I used to do this all the time, then I stopped… and I forgot about doing it. That’s one thing I’m working on, these days — trying to follow through and not drop things before I finish them. Or, if I do get interrupted, make a note of what I’ve been doing, and keep that note where I can see it and remember it. I just remembered another project that I was making amazing progress on… then I got interrupted, and I forgot about it… and I ended up heading in a completely different direction.

Months later, I suddenly remembered it last night, and sure enough — there it is, waiting for me to continue working on it.

The breathing and relaxation stuff is just the same. I’m making great progress, then I get distracted, and I head off in a different direction. And I forget about what I’d been doing — and it ceases to exist for me.

So, I lose the benefits I’ve been getting from it. And I lose that part of my life. I slowly drift back to my old ways. I start having the same problems that I had before, and I wonder why I keep ending up back where I started… all over again… when I was making so much great progress.

It’s discouraging. So, I need to do something about that.

And so I shall.

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.

After #TBI – How DO you get your Sense-Of-Self back?

Let's find out what's inside
Let’s find out what’s inside

This is really a much bigger — and more important — question for TBI / concussion survivors. Yes, it’s traumatic to lose yourself, to lose your sense of who you are and where you fit in the world. But let’s be honest – our selves are always under construction. And we’re always working at re-creating our lost equilibrium, as we experience the losses of those we love, the changes that come with life, the ups and downs and roller-coaster rides which mark the passing of the years.

Life is always about loss. And gain. And change. One of the problems after TBI, is that you can become very rigid and get locked into thinking that You Have To Be A Certain Way. Or that Life Used To Be So Much Better Before. Of course, that’s not always true – our memories for how great things used to be, tend to get embellished, and we can become very inflexible in our thinking about how we are or aren’t or should/shouldn’t be.

That rigidity, in fact, is one of the biggest problems that dogged me the most. And only by talking with someone on a regular basis about what was really going on in my world, was I able to shake that habit and think outside the comfortable box my brain tried to build around itself. I had a very fixed idea about who I was and how I was in the world — and how I used to be — and it took years of discussion to get me to let go of my artificial mental inventions that made me feel more lost than I needed to.

So, yeah – we can feel lost and alone and confused.

But it’s not always that case that we ARE lost and alone and confused.

Are you confused yet? Stay with me…

The antidote I found to this was something quite simple — and common-sense for me. The fix I needed was ROUTINE. By setting a structure for myself, day after day, and following it to a “T”, I was able to become re-accustomed to the experience of being me, living my life.

The thing I had lost was a sense of continuity, of predictability. I didn’t recognize myself, in part because the customary ways I responded to the world around me had changed. I was too unpredictable for my own self. I was too volatile, too flaky, too flighty. And I never knew what my head was going to do next, or how my body was going to feel, one day to the next.

Getting into a routine, where I could reliably predict (pretty much) how my day was going to flow, let me get used to the feeling of that new routine. It let me get used to the feeling of the new me. By stepping through the same motions, each morning, noon, and night, I was able to build up a “knowing” of how my whole system worked, responded, and reacted to my daily life. And when things turned out different than expected, the routine I followed took the pressure off my brain. I didn’t have to figure everything out, all over again. I had my steps, and I followed them. And that freed me up to sort through the surprises of each day.

Because I was confident that I could properly structure my life in expected ways, and I could carry through, each day, with my normal activities.

Personally, I don’t much care for the term “new normal” — that’s probably because I don’t think I’ve ever had a “normal”. I’m different from most folks in that way, perhaps because of all the issues I’ve had over the years. But for me, the concept is useful, and it often gives hope to folks who feel very abnormal, by promising that there can be a “normal” again. It will be new, but it will be there.

In the end, it’s all a process, and it’s one you have to keep at. It’s important to take breaks, now and then, to let your system rest. But it’s also important to keep going, keep practicing, keep rehabbing your reality, until you get to a space where you have some peace. You need relief from the stress, you need hope in the story. And taking time out to let your brain catch up with your mind is an important part of every TBI recovery.

The point is — it can be done. For years and years, it was believed that brain injury meant you’d never fully recover. I take issue with that — in large part because the official definition of “recovery” itself can be literal and rigid. Of course, you’ll never go back to being the same person you were before the accident. We never go back to being the exact same person we were, after any major life change — and TBI can be a major life change, even if it’s just a “mild” one.  But that’s not a tragedy. At least, it doesn’t need to be one. You can recover tons of new and interesting things about yourself, that you never knew or experienced before. You can recover many of your interests and activities — and discover new ones you never knew were there.  Life isn’t this simple cookie-cutter experience, where your highest achievement is to become a cliche. Far from  it. Life is messy. And the sooner you learn to surf the waves of that messiness, the better off you’ll be.

How DO we surf those waves? Everybody does it differently, and I do it with routine. I have my morning routine mapped out each day, and I rarely deviate from it (I will now and then, to keep myself sharp, but I stick with the program, most of the time). I have my steps set. At the start, I wrote them all out in painstaking detail, with a checklist I filled out each morning. Then I graduated from the list, when it felt too restrictive, but still keeping my routine in place.

My routine became my refuge, my reassurance. It gave me a sense of structure and predictability at the start of each day. And it helped me get to know myself in a whole new way. That daily practice was a life-saver. And it helped me get my Sense-Of-Self back.

Many days, I look around me, and I don’t feel like things are familiar. Sometimes I’ll be driving down the road, and I’ll have no idea where I am, or where I’m supposed to be going. But I keep driving. I don’t lose my cool, I don’t get flustered. I keep driving. Because I trust that eventually I will recognize where I am, and things will become clear again.

And they do.

Many days, I “check in” with myself, and I feel like a stranger in a strange land. I don’t understand what people are saying to me, or I can’t hear them properly because of the ringing in my ears. But you know what? That feeling has become so familiar to me, after all these years, that now it’s an expected and predictable part of my life. And I know what to do about it. Again, I just calm myself down with some conscious breathing, I ask people to repeat themselves, and I repeat back to them what I think they said, for clarification. And that works for me. It not only calms down my system, but it also engages me more deeply with the world around me.

And since I have long believed (and now have scientific evidence) that the world around me is part-and-parcel of my neurocognitive process, that actually furthers my own cognition in ways that never happened before. They couldn’t happen before, because I was so locked away behind my wall of confusion — which I had built up to protect the sense of myself that I once had.

Sometimes it’s good to give your self an overhaul.

Sometimes the healthiest thing you can do for your sense of self, is to break it all down, and start from scratch.

That’s what I’ve been doing, these last years. Some people do it more quickly. For others, their process is longer. My process still continues… Like I said, some days I have no idea who I am or where I am or where I’m going (literally). But time and experience tells me… so long as I don’t give up, so long as I keep trying.

 

Shared – The Effect of Brain Injury on Caregivers

caregiver-stressThis is such an important topic — for caregivers, for survivors who rely on them, and for everyone else who interacts with caregivers under stress. It’s also important for employers to know. Or maybe I’m asking too much…?

On the third Thursday of every month, Laura Nordfelt inspires and uplifts caregivers in the Salt Lake Valley at the Intermountain Medical Center in Building 1. I met Laura and her husband, Greg at the 2013 Annual Brain Injury Conference. The circumstances which caused Greg’s traumatic brain injury (TBI) were different from Mark’s, but the feelings and experiences with therapy and the desire to return to a familiar way of life are very similar.Our hearts knitted together as they shared their story with me and their goals for helping those affected by brain injury.

At the last caregivers’ meeting on March 17, 2016, Laura shared some of her feelings on how brain injury effect’s the caregivers. I was unable to attend, but Laura emailed me the handout she’d put together. I was impressed with how accurately she’d expressed my own feelings. When I called to tell her how well she pinpointed my thoughts, she said many others at the meeting told her the same. With her permission, I share them with you.

Read what Laura says here: The Effect of Brain Injury on Caregivers … and pass it along – share with others

#TBI – more questions, more responses

hand-magnify-brainA few more gleanings from my stats… here’s what people are searching for. Maybe I can provide some insights… I’ll try.

after concussion frontal felt like something split

Concussion is a tricky thing. It affects everyone differently, and this is one of the ways it can be sensed. For years after my last mild TBI, I felt like my brain was not communicating properly with itself. And that caused a huge amount of stress for me. I also have a friend who was dropped on their head as a baby. They have had a neuropsychological assessment, when they were told that the left side of their brain was not communicating properly with the right side, and they have a lot of trouble reading and comprehending. They also become angry and rigid very quickly, and it’s like you can actually seeing one side of them not sharing information freely with the other side. Interestingly, they refuse to acknowledge that their issues might be neurological. They are paranoid about the government spying on them, and they are convinced they’re being followed. They grew up in a traumatic environment, and they work in trauma counseling, and everything for them is about trauma. But not about neurology. I often think they could benefit from working with a rehabitative neuropsychologist, but they never want to talk about “brain stuff”.

But back to the stats — that feeling that something is not functioning properly is quite common after concussion / mild TBI. As a matter of fact, things are NOT functioning properly. Here’s a great graphic that shows what the deal is:

neurometabolic-cascade-vulnerability
From Giza and Hovda’s work on the Neurometabolic Cascade of Concussion – click the pic to download the paper

Basically, you’ve got a sudden increase in your brain’s demand for glucose, combined with a sudden decrease in the flow of blood – that’s a pretty significant mismatch, considering that blood is how the brain gets its energy. On top of that, you’ve got a lowered metabolic rate for oxygen — so just when the brain needs more energy to heal, it gets even less energy than it needs. It’s literally not able to function properly to produce the fuel it requires. And that can leave you feeling pretty fogged-up and messed up.

Another thing that can happen, is that your axons can be sheared and twisted. Depending on the injury, axons can be twisted like this:

From Knocking Heads. Brain Damage vs NFL http://neurosciencefundamentals.unsw.wikispaces.net/Knocking+Heads.+Brain+Damage+vs+NFL
From Knocking Heads. Brain Damage vs NFL – click to read the article

That keeps the axons from communicating, and it can even kill them. So, you end up with a “Swiss-cheese” effect, where there are little tiny gaps in the connections in all the networks in your brain.

Or axons can get sheared like this:

axonal shearing
From After Brain Injury: A Guide for Patients and their Families – click to read the guide

And that literally disconnects them from themselves and from everything else.

So, on a microscopic level, stuff is separated and disconnected. And that can leave you feeling separated and disconnected from yourself, as well as everyone else. Your same old processes are not functioning the way they used to, and your personality may change. And the people around you may not recognize “the old you” anymore… and slowly drift away. It can be tough. But it doesn’t always happen that way.

Every brain injury is different. And everyone’s social situation is different. So, you have to just take it as it comes… and understand that A) it takes the brain a while to get back — sometimes several weeks, for it to clear out the gunk… and B) you can rebuild the connections in your brain — that’s what the brain does… constantly… and C) worry is going to make things worse, so just settle in, take good care of yourself, and keep an eye out for things that might get you injured again.

Anatomy of male joint pain in bluelink between fibromyalgia and tbi

I’ve heard there may be a link between these. I’ve heard that there’s a link between PTSD and fibromaylgia. And there’s a link between TBI and PTSD. The three could very well go hand-in-hand.

I know a number of people with “fibro”, including one of my siblings, and they all have a history of trauma. Some of them have histories of car accidents. We’re still learning about fibromyalgia, but if I understand it correctly, it has to do with the brain sending off pain signals in specific parts of the body. Sometimes the signals are debilitating. And the whole deal can be exhausting. It’s a brain thing, so why wouldn’t it be potentially triggered by TBI?

One of my friends with “fibro” suggested (after I told them about my TBI experiences) that they might have had a TBI. Or two. Or three. They’d been rear-ended in traffic a number of times, and they were nearly disabled because of it. After all those years of telling me about their pain in a certain context, suddenly having the TBI information seemed to clarify a lot for them. I lost touch with them, when I moved away, years ago, so I have no idea if anything changed for them. I hope it did.

I’ve had chronic pain issues for many years, and even though I’ve been hypersensitive to touch since I was a little kid, the debilitating pain  started in earnest after a car accident in 1987. Some folks have suggested I might have “fibro”.  I’m not so sure. My pain is pretty much all over, and it can subside and abate for extended periods of time. It also responds well to exercise, which apparently “fibro” does not(?) Also, the crippling fatigue has gotten much, much better over time, and it fluctuates, so I think it’s more related to my mild TBIs than “fibro”. It’s a big old puzzle, that one. I hope they can figure things out before too terribly long.

advantages of bad memory

The pieces are all there. We just have to put them in their places.
The pieces are all there. We just have to put them in their places.

This is one of my favorite subjects, because it’s so close to home. I joke that “the secret to happiness is good health and a bad memory”, but my friends don’t think that’s funny. Too bad for them. I think it’s hilarious. My memory tends to be awful. I forget things I did earlier in the day, I forget what day it is, I forget where I put things, and I forget things I was supposed to do. I have a whole system built up to keep me on track and mitigate the problems of my spotty memory.  It can really be a problem.

On the other hand, forgetting things that are weighing me down provides a much-needed break from the intensity of life.  And it’s been very helpful for me to let old grudges and hurts slip away, as though they never happened. It frees me up to interact with people who may have said or done stupid things in a moment of carelessness or thoughtlessness. Often, they feel bad about it, afterwards, and they’re afraid I’ll hold a grudge.

But I’ve forgotten all about it. And that’s a good thing. It lets us get on with our lives like normal people, instead of a bundle of grudges rolling around, bumping into everyone else’s grudges.

brain mri

I’ve had three of these. No, four. (That memory thing again😉

I’ve had 2 of them with contrast and 2 without. I’ve gotten sick after 2 of the 4 — but not every time I had contrast. I don’t care for contrast — gadolinium is a heavy metal that has been connected with serious health issues, and I don’t like the feeling of it going into my veins. It makes me feel weird. Uncomfortable.

 

dti-roi-dual
Some of my MRI imaging

I have had a DTI MRI, which was interesting, but it didn’t show nearly as much as I was hoping. Part of that is due to the radiologist. They were doing the bare minimum on the job, and they were probably reading a ton of images, so there was no time to dwell on my own case. I’ve gotten some software that will supposedly let me see my own DTI tractography, but I have yet to learn how to use it. Eventually, I will. Just not today.

My DTI MRI
My DTI MRI

Anyway, that’s it for today.

I’m working from home today — I had a busy weekend, and I’m still wiped out. I have no meetings in the office today, and I think a lot of other folks will be working remotely, as the weather is terrible, and schools may be either delayed or closed. So, I’m taking the space and just kicking back to do my work in peace.

Away from the cubicle.

Away from the crowds.

In the peace and quiet of my own home.

Ahhhhh….

 

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.