Being okay with not being okay

flooded lake
This is what my life sometimes seems like. Flooded – just flooded – with too many problems, and no clear path forward

I talked yesterday about how trial and error is a great way for me to “feel” my way through life. I learn a lot in the process, and if I can just stay flexible and adapt, then I’m good.

The thing is, it’s incredibly hard.

I have no problem making errors. That comes with the territory of being me. It seems to be my “default mode” — and I used to get so much crap for it, when I was a kid, because I was always messing up things that should have been so easy for me. Everybody expected more of me, and I consistently let them down.

That was maybe the one and only way I was consistent — I let people down, when their hopes were highest.

My parents who believed that paper route would teach me responsibility and reliability, only to watch me fall behind, mess up the math on how many papers I needed, and not get out of bed early enough on Sunday mornings to deliver the paper at the pre-ordained time.

The teacher who ran the school newspaper who was so sure I’d make a great sports reporter, only to have me start one story after another, and never finish it, growing surly and defiant when they pressed me to meet the deadlines.

The editor of a local newspaper who was so happy to have me on board, at first, then grew frustrated at how I could never seem to come to a succinct point in newspaper format (my pieces went on for pages, and I still never got to the point).

All the bosses over the course of 20 years who saw so much potential in me, only to be disappointed by one “careless” error after another, dealing with my uncooperative style, and ultimately finding me insubordinate when they pushed me to perform, and I pushed back.

I’ve long believed there was something wrong with me, for not being able to perform at the level everyone else did so easily. The really hard stuff, I could do — staying calm in a tense situation, finding creative solutions for problems that stumped everyone else. But the easy stuff — just staying on schedule, being consistent, having a good collaborative working style, and being a solid team player… that was such a challenge for me.

Everyone else could do it. Why couldn’t I?

And I felt terrible about it for years and years. Decades, really. Just terrible.

Until one day I decided there wasn’t any point to that, anymore. I think that change happened three or four years ago, when I read a book about how the human system is designed to take in feedback and adjust. So, all the “failures” and “mistakes” were actually just feedback intended for me to use and apply in my own life. It wasn’t about black-and-white success/failure. It was about data. Information. New details that I needed, in order to really do a bang-up job on what I was undertaking.

And it made sense to me. I mean, think about it — when you’re born, you don’t know how to walk and talk. You have to learn it from scratch. You don’t come into the world like a laptop from a computer company. You don’t come “pre-loaded” with everything already up and running and properly configured. You have to learn. You have to acquire the skills. You have to gather information and work on your abilities. And if you push yourself to try things you have yet to learn completely, you’re going to make mistakes. You need to learn.

“Mistakes” are how we learn. It’s how we get new information that guides us in a different direction. It’s how we alter the course of our days, weeks, months… our lives.

When I got that through my thick skull (which is actually thicker than usual – my family has dense bones, which is fortunate for us all), everything changed. Everything opened up.  I was free to fail! I was free to live my life! Woot!

Then the details of the book slipped my mind, and I went back to “rigid mode” where I got upset about screwing up, all over again. Because that’s what I knew. That was my old default mode.

With TBI, I think it’s very common for us to be rigid and get certain ideas stuck in our minds. We have A WAY THINGS ARE DONE, and we get stuck in that rut, thinking it’s THE ONLY WAY THINGS ARE DONE. We don’t want to mess up. We want to be successful, so we cling to THE WAY we think we should be using.

Over. And over. And over again.

I don’t know about anyone else, but I do that all the time, and I get so frustrated when it’s clearly not working. First I get frustrated because it’s not working, no matter how often I do it. Then I get frustrated because I forgot — yet again — that I’m too rigid, at times. I get stuck in a rut, and I get upset with myself.

But really, it’s all just lessons. And it’s all just reminders.

And if I can not get all caught up in beating myself up over it, and being hard on myself, these are actually really useful lessons. More lessons. Tons of them. In abundance.

Really, the only thing that can go “wrong” is if I overlook that, get stuck in a rigid mindset, and refuse to learn.

Fortunately, life has a way of reminding me of what I need to know.

And if I can be okay with not being okay — for however long it takes me to figure things out — then I’m good to go.

Onward.

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Ready for Monday – Looking back, looking ahead

Who can say what lies ahead?
Who can say what lies ahead?

I had a pretty good weekend. Restful. Downtime. I did some things on Saturday, then took Sunday off, pretty much. Just hung around the house, organized some things, did some reading, caught up with my email, and gave some family members a call.

One of my siblings is in the hospital, and I may need to travel to help them out. But it may turn out to be nothing. They’ve had physical disability issues for many years, and this is one more in a long series of troubles they’ve had. I’m not making light of it. They’re having all sorts of tests done. But it may turn out to be just a speed bump, rather than a sinkhole, in the road of their life. They’ve been through this kind of thing many times before, and we all know it’s a wait-and-see type of situation.

If I have to go, I’ll go. They may need me. But for today, I’m taking it easy.

I’ve got a late night tonight, so I need to get an early start on the day. I’m seeing my new neuropsych again. I’m bringing them up to speed on my childhood. They’ve worked with a lot of kids, in the past, and this will help them better understand where I’m coming from.

This is important for both of us. With my history of mild TBI as a kid, it can shed important insights on what shaped me into the person I am today. And it also highlights the differences between the world I grew up in, all those decades ago, and the world we live in now. I was telling my neuropsych about the time when I ended up on the bottom of a pile of kids during recess in 5th grade got my neck/head hurt. I knew I’d gotten hurt and after I crawled out from under the pile, I walked away in a daze, just walking across the field where we were playing, trying to put as much distance as possible between myself and everyone else, because I didn’t want to get hurt again.

After that, I didn’t want to play rough. I was confused. I was out of it. My grades dropped like a stone tossed into a pond. And the former A-student nearly flunked 5th grade. My teacher had to come to my house and talk to my parents about me not completing my work. They made me stick with it and complete my homework assignments, but it was a real battle for them, for many months. And I’m not sure I ever recovered from that experience. All of a sudden, I was stupid. I couldn’t think. Something was wrong with me. I wasn’t smart, after all. I was stupid. I couldn’t do it. I just couldn’t do it.

My  neuropsych asked me if I’d told anyone about getting hurt. I said, no, that’s not how we did things back then. You just picked yourself up and went back into the fray. Another thing that I didn’t add, was that I was so confused, I didn’t realize there was a reason for me to say anything. I’d gotten hurt similar to that many times, while playing. It wasn’t new — that time was much more extreme, however. All those other times I got clunked on the head and was a little woozy, I recovered. But for some reason, that time was different.

And that just highlights the differences between how and when I grew up, and how things are now. Even if I’d told my parents or teachers, what could they have done? What indeed? Nobody knew sh*t about concussion or mild TBI or neck/spine injuries back then. If anything, I would have just been a hardship to everyone, because my parents didn’t have the money or the time (they were both working) to really tend to me.

Nobody had the time for me. And when they did try to help me, they did such a bad job of it, I thought I would have been  better off just going it alone.

And it makes me a little ill, to think about how blind and bound by ignorance everyone was, back then. Living in the country, in a place where you were never allowed to admit any hurt or any weakness, but you sucked it up and got back in there. Because that’s what was done. No cry-babies allowed. No weaklings. No quitters.

So, I’m meeting with my neuropsych again today, and we’ll talk more about my childhood. I’ve got my box of favorite things I kept over the years. My parents cleaned out their attic years ago, and I got my childhood box from them. That and a bunch of photos of when I was a kid.  School pictures, from first grade on. Other photos used to be in the collection, but I took them out, and I don’t know what happened to them. I think I put them in another photo album somewhere, but I don’t know where it is. I would like to find that. It’s classic, and it’s full of pictures that are worth more than 1,000 words.

Thinking about being a kid dealing with mild TBIs all on my own… it was pretty rough. And I got tired of being punished for things I didn’t do on purpose. That’s probably part of why I have trouble with authority figures. I’ve been punished and disciplined and pulled back into line by force, by people in power so often, for no reason that I could tell — till after the event was over. They probably thought I was being difficult on purpose, but I just didn’t know. I didn’t remember things they told me. I misinterpreted what they told me. And then they came down on me like a ton of bricks. Because all I knew how to do was put on a brave face and act like I was in total control of everything.

I wasn’t. But if I let on that I wasn’t, then I’d be vulnerable. And other kids or adults would beat up on me.  Because they could.

It was terrible, when it was happening. But that’s just how everything was. That’s just what happened. And I dealt with it.

Now things are so much different. I still have residual resentment and distrust towards authority figures, but I’m dealing with it. I’m not nearly as bitter and angry as I ws in the past. And I have this amazing life that really keeps getting better. Standing at my desk, looking down at the bird feeder in my back yard, a young deer just appeared from the trees nearby and is looking for something tasty to eat. Beautiful. Just beautiful. This is all possible for me now, regardless of what has happened to me in the past. Maybe it’s possible because a lot of that happened.

I know for damn’ sure, I’m a heck of a lot more resilient than other people I know who never had awful things happen to them on a regular basis. I figure, my childhood was like the price of admission to this life I have now. And it’s paid off.

Being roughed up when I was a kid and being left to sort things out on my own… it wasn’t the most fun, but I learned a lot of lessons. And all of those lessons are helping me today.

Monday’s here! I’m ready. Let’s do this.

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

Shared from ABI Blogger — Mental Health: What We’re Dealing With (Part 2) – Life After A Brain Injury

brain-frame-swirlsAffecting All Aspects Of Life

Last week I spoke at great lengths regarding the manner of the changes that happen when a brain has been damaged after something like an ABI or TBI. My aim last week was to try and put those changes that are so hard to put into words into a (potentially) real life, everyday situation that people could relate to. I wanted people to see and understand the confusion that occurs after ABI, the lack of familiarity, the feeling of being out of your comfort zone, and most importantly that these changes are not a gradual decline; these changes are foisted upon you in a life changing instant.

Read the whole post here: Mental Health: What We’re Dealing With (Part 2) – Life After A Brain Injury

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.

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.

#TBI recovery can take a while – but it is so worth it

steel-construction-Ken Collins, a regular reader / commenter who’s got an amazing TBI recovery story posted this comment the other day:

Ten years may seem a like a long time for most people, but for those of us who live with a brain injury everyday- life really only starts being less of a struggle after the first ten years. For most of us, life will never be the same and for some the struggle will never end.

It took me 13 years before I could start to smell again, and because after the first year of not smelling I forgot what things smelled like – now I have to relearn all over again. It took me 18 years before the numbness on the left side of my body went away, however the limp is still there when I get tired or have a long day.

It took 20 years for me not to have to look on the calendar or my day planner to know what I was going to do that day. Now, at night when I sleep I can dream again. It took me 25 years before this was possible.

Recovering from a brain injury is a slow process – it took me decades before I could regain my self-confidence and feel comfortable in my own skin again. Recovering from a brain injury begins by finding hope to get better and finding meaning and purpose to motivate you to get on with your life. There are many peaks and valleys along the way to deal with during this process. In the early stages of my recovery process it was like taking one step forward and two steps backward for many years, but these issues lessen as time goes by and you start to regain your self-confidence and improve your self-esteem.
Along the way there were many obstacles to overcome – some of these obstacles were placed there by me, as I tried to get my life back on track. If you are like me – we try and fail many times along this journey – some of the first casualties are our friends and family.

Without the support of family and friends the journey back will take longer than it needs to. Taking care of yourself doesn’t mean doing what you used to do – but rather finding new ways to adapt to situations that confront us after our brain injury.

Taking care of ourselves, setting up a routine and being responsible for our actions is the key to finding meaning and purpose in your life after a brain injury. Being accountable for the decisions we make is very important to the recovery process and our well being – giving up isn’t an option.

Along this journey back to what people call “reality” – it is very important to be responsible for our actions and hold others accountable for theirs as well. This is especially true when it comes to service providers, the state and federal government during these times of budget cut backs and program uncertainty. Getting involved with community organizing, public service and political action helped me to get better and I think it can help you too.

It took me many years to regain old skills and learn new ones after my brain injury in 1976. Being motivated to learn new skills made the road to recovery smoother and less rocky – this wasn’t easy! Having the ability and discipline to get up and go to work every day helped me feel productive and worthwhile. Even though there wasn’t a paycheck at the end of the day, I still felt good because I was doing something productive instead of setting around hoping things would get better.

In the early years of my recovery, I made decisions that weren’t in my best interest. I didn’t know any better and hope the knowledge this experience over the last 35 years will provide you insights and ideas to make your life easier and more fulfilling.

Living with a brain injury can be a burden on us and the ones we love. Our family and friends want to help us get back to our “old selves” – but they don’t know how. I hope this information will offer you examples of what I did – so that your journey will be less difficult than mine was.

This is an excellent reminder about the realities of TBI / concussion recovery. (I’m reluctant to use the term “concussion”, because not all concussions result in lasting brain injuries, but enough people have problems in the long haul, that it’s important to include them.)

When your brain is injured, so many things are involved. It’s not just the wiring in your brain… it’s your entire system’s function. Your nervous system. Your senses. Your coordination and sense of balance. Your sense of self. You can have issues with light and noise sensitivity, as well as risk assessment and judgment problems — which can make your balance and coordination issues downright deadly. You can become extremely tired… all of the time.

Your social world can get messed up, as you find out who your real friends are, and/or your impatient, under-educated family gets fed up with your “faking it to get attention”. You can also see your social life dissolve because you can’t keep up with the pace of the rest of the world.

You’re so tired… why are you so tired all the time?

The mainstream, regular world is not a friendly place for those of us with TBI issues. If your difficulties aren’t obvious to everyone around you, it can be a long, lonely slog to some semblance of normalcy. And there are many, many difficulties and challenges along the way. Many baby-steps forward… followed by long slides back… and then it starts all over again.

But it’s worth it. I have said that I’m feeling more like “myself” than I have in a long, long time. Some days I wonder if that’s just because I’ve forgotten what the old me was like. That’s entirely possible. The thing that I look for is a Sense-Of-Self that tells me without words that “I am me” and I am comfortable in my own skin. It’s a level of comfort that reassures me that I can say, do, or experience something and be reasonably certain that I recognize the person who’s having the reaction to the situation that results from those words, deeds, or experiences.

It’s the times when I don’t recognize the patterns of reaction… the sense of who I am… the specific combination of internal responses… that I feel so separate — remotely separated — from my life and my identity.

I’ve been hoping that I could just get back to a place where it’s constant, but that may be an unrealistic expectation. This feeling of being comfortable in my own skin comes and goes. It sometimes crops up at the most unexpected times — and then it brings tears to my eyes. I don’t have to WORK at it. I can just be. Other times, when I fully expect to feel secure and confident and comfortable, that sense of ME is nowhere to be found.

And I am a stranger in a strange place all over again.

This whole TBI recovery business takes a long time. And if you’re like me and you’ve had a lifetime of TBIs to contend with over the years, things can get pretty convoluted. 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. But I can’t remember.

And the recovery I’m experiencing is a lot like the injuries that necessitated it — it’s varied, has ups and downs, peaks and valleys, and it’s pretty consuming. If I weren’t so hyper-focused on my recovery, I’m not sure I’d be making much headway, it’s that much work.

But I am focused. And I am determined. TBI stole my peace and my future from me, when I was a little kid, a teen, and an adult. It’s been a regular problem with me — a person who everyone (including myself) expected to go far. And it has screwed me up enough. It’s caused enough pain and suffering for my family, it’s robbed me of enough friends, and it’s made my life difficult enough.

So, yes, TBI recovery does take time. It’s not a straight line trajectory, and it’s not predictable. Even when I think I’m doing so much better… all of a sudden, I’m not. Or, maybe I am, but I just can’t detect it. What-ever. Bottom line is, despite what people on TED Talks tell us, getting over concussion in the space of a couple years isn’t always the way things turn out. For some of us, it takes a long, long time.

And those “some” who struggle most — I’d bet good money — were once top achievers who got thrown by brain injury, and struggle the most, precisely because we were once at the top of our games and accustomed to peak performing on a regular basis.  But we can’t anymore. We’re not OurSelves anymore.

Crushing.

The good news is, if we keep on and we keep at it, we can rebuild our lives in ways we never dreamed possible. We can recover beyond where anyone thought we could. And we can achieve amazing things. Especially if we put the focus on others, and we dedicate our lives to the service of something greater than ourselves, we can truly rise. And others can benefit at the same time.

It’s a process. It takes time. It’s worth it.

Nine words that mean everything to me. I hope it does for you, as well.

Onward…!