What we lose after TBI… and what we can get back

woman standing with a leaf in front of her faceI’m feeling really grateful, this morning. I’m tired, but I’m content. I’ll have my nap later, and everything will get even better.

I spent yesterday doing some of the things I love the most: cooking, eating, writing, reading, napping, and watching football while eating non-dairy ice cream… all with my partner, who has been really struggling with mobility issues, lately.

I bought us a collapsible massage table a couple of weeks ago, so we can both take turns stretching out and do horizontal exercises without having to get down on the floor. I set it up last night for my spouse to lie out flat (major plus) and do the exercises their physical therapist prescribed. The floor has gotten too cold to lie on, plus, it’s hard for them to get up and down without pulling something or hurting. So having the table is a huge benefit. Plus – bonus – I went to bed at a decent hour after a long day of lots of work

And by the end of the day, I realized just how good I have it. I realized that, after all the years of struggle, all the years of incredibly hard work, all the pain and frustrations and perseverance, all the dead-ends, all the plans to just give up, and battling all the despair… I have come through to another side, and I am in a place where I am good.

It’s taken years for me to get to this point. And it feels like this is the first time I’m really settled into this good-ness in a way that I actually believe. I’ve spent so much of my life confused and confounded, thwarted and hurting… without much of any clue about why that was, or what I could do about it… I had started to think that’s just how things were going to end up for me.

Permanent disablement. Permanent screwed-over-ness. And I just needed to get used to the experience and accept if for what it was.

But that feeling has completely changed, just in the last 24 hours. Things are not perfect, by any stretch of the imagination. There’s a lot of stuff that’s going really, really wrong in my life — and the world in general. And there are lot of unanswered questions in my mind. Still, I feel like I’m in a state of mind (and body — fitness is so important) that I can handle whatever comes my way.

No, my thought process is not perfect. I still get turned around and confused, and lately I’ve really been struggling with memory issues and misplacing things that I can’t afford to lose. I still have my intense lows, when I completely despair and lash out at the ones closest to me. I still have my moments of feeling useless and unlovable. I still struggle with crushing fatigue and not being able to do things that plenty of other people can.

And of course, I struggle with the fact that I can’t tell people about my issues, because it will work against me in the larger world. It’s not going to help me get a better job, if I tell the hiring manager that I function best if I have a 20-minute nap at the middle of each day. That’s not part of the deal in the 9-to-5 world I operate in.

But these are all things I’m convinced I can manage effectively on my own. I can handle it. Because I have a much better sense of who I am, and what I can expect from myself.

People have said that “you can’t recover from brain injury“, but that was decades ago, and we know a lot more about brain injury than we used to. Also, we know more about how concussion really is a brain injury… and so many people have them, yet continue to live their lives.

I myself notice that there are some things I just can’t do like I used to. It’s not as easy for me to push through marathon tasks. I need to stop and take a breath… do something completely different. And it’s harder for me to remember what I was doing before I took that break. I lose things. I get lost, too. I sometimes look around and have no idea where I am — but that’s more because I tend to be so focused on what’s in front of me, that I don’t notice my surroundings, so I don’t think it’s one of those “On Golden Pond” moments where I’m literally lost and have no idea where I am, period.

I’m more forgetful about things that really matter to me. My home office is pretty much of a wreck, but in a Thomas Edison “genius-y” kind of way, and my work area has spilled into the dining room that we rarely use. I have been misplacing important documents I just can’t afford to misplace… and then scrambling to replace them. I have a harder time initiating stuff I know I need to do (like go for a swim at the pool), because it feels way too complicated and involved. And try as I might, I really mess up things I’m positive I’m going to “nail”. I’ve been feeling really ambitious about making new meals while I’m on vacation this week, but my cooking skills have really degraded, thanks to the bone-crushing fatigue and difficulty sleeping. And coordination? Yah, forget it. Don’t leave anything near the edge of a surface. I’ll knock it onto the floor, for sure.

I know I’m not as sharp as I used to be. I know I’m not as sharp as I’d like — or intend — to be. I can be downright dull, and the bummer is, I’m aware. Oh, lord, how I’m aware. It’s not the most fun thing in the world.

And yet… I’m happier now, than I’ve probably ever been. And even with all my limitations and drawbacks, I’m definitely more functional, all across the board, than I’ve ever been. I’ve got “the whole package” together, at last. Even with the TBI after-effects, the slowness and slipping, the exhaustion and intermittent sense of defeat.

See, this regaining of competence and practical functionality is the real TBI recovery I wish people would talk about. Not getting your coordination and cognitive quickness back, watching your memory and endurance dwindle, having all kinds of intense emotional ups and downs… some experts might consider those blockers to TBI recovery. They might say it means that a person has lost too much and can never fully recover from a brain injury.

But everybody on the planet has something they struggle with, TBI or no.

And in any case, the real loss for me from TBI had far more to do with my Sense-Of-Self and my sense of “agency” in the world, than any objective physical or cognitive limitation.

TBI/concussion isn’t debilitating just because it knocks out your practical abilities. It’s most impactful because it takes a chunk out of your understanding of Who You Are and How You Handle Life.

It strips our self-confidence, and in doing so, it hits us hard with a self-doubt that’s a huge source of stress and ongoing trauma. What does stress and trauma do to the human system? It makes it harder to learn. And since TBI/concussion recovery is literally an exercise in re-learning to live, so your brain can rewire with reliable connections, that loss of self-confidence is in itself a source of ongoing injury.

TBI / concussion is an injury to the Self. And until people start accepting that and dealing with that piece of things — as well as finding practical, common-sense, science-based ways to address those issues — TBI and concussion survivors will continue to suffer from their injuries as well as the limitations of the people who intend to help them.

My road back from multiple mild TBIs has been a long one. It’s taken me 13 years to get to this point (and today is the 13th anniversary of my last concussion). It’s been a grueling and winding path. Fraught with perils. It nearly cost me everything I worked so hard to earn. But I can honestly say, I’m finally on the other side.

I understand my situation. I also understand the nature of my injuries, and how they affected me. But most important of all, I understand what I can do about it. And while I do tend to whine a bit here at times, the most important thing is for me to focus on the positives and share the lessons I’ve learned, so others don’t have to suffer as terribly as I did.

TBI and concussion are “recoverable”. We might not get back every single ability, and we may be left with lasting challenges, but we can restore our Sense-Of-Self, so we can get on with living our lives to the best of our developing abilities.

We’re made to heal. We’re made to grow. Regardless.

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And it just gets better…

Kim-Sutton-Positive-Productivity-Coffee-and-ComputerI’m having another great day, today.

I’m surprisingly productive on my days “off”, and I’m getting more done than I realize. Before I lay down for my nap, a couple of hours ago, I made a list of all the stuff I got done, and it was … a lot.

I’m not taxed, though, which is good. It just feels regular. Like I’m just living my life like I want to.

And I am.

One thing that happened earlier, was a phone interview for a job I’d applied for a couple of weeks back. I know I’d posted about how I really need to be realistic and not push myself intensely — especially with a long commute.  And it’s true. The thing is, the people I talked to and the job we discussed all sounded great. Of course they did. It was an interview, and everybody’s on their best behavior. But what came out of the conversation was actually a wider and more interesting kind of opportunity than they originally offered.

The scope of the job now encompasses things I’ve been doing for years, but they don’t apparently have anyone to do. Things like make their website go really, really fast. Things like put a new web metrics package in place. Things like train developers on best practices.

So, that was actually exciting. When I think about where I am now — boxed into a small corner of the world, without the opportunity to strengthen certain skills (which, by the way, are the ones that really pay well) — and I think about the future — more of the same that’s going to make me more and more specialized, more and more boxed-in — I have to seriously consider any and all alternatives.

Anyway, if my current employer really wanted to keep me, they’d pay me like they mean it. They haven’t done that. If anything, they’ve reneged on their promises and shorted me thousands of dollars.

That’s not cool. It’s not-cool enough to make me leave. They should know better. They do know better. But they won’t do better.

If I move, it will be an adjustment. A longer commute. A new bunch of people. Unpredictable politics. Having to start from scratch.

Then again, that’s what I’m dealing with right now. And that’s happening at an established job with a company that’s an “unknown quantity” at this point. Who knows what will happen with them? Nobody knows. All anybody has, anymore, is rumors.

Note how well I’m talking myself into changing jobs, when just a few days ago, I was in a much different frame of mind. I’m clever that way… But seriously, I have to weigh all the pros and cons of both situations. And I can’t say I’d mind being closer to home, especially during the winter months. I also won’t mind not being “threatened” with obligatory trips to India, which has never been something I wanted to do, but my boss has been hinting at. I can work effectively with people from India. I just can’t travel there comfortably. Just crossing the USA is disruptive enough for me, and exhausts me sufficiently to wreck my life for weeks at a time. But India?

No thank you.

Well, it’s all a trade-off. I’m fortunate that I’m in this situation, to begin with — in-demand in the midst of a very challenging job market. These are good problems to have. So, for that I’m grateful.

I think I’ll drink my afternoon coffee now.

And get back to enjoying my day. The obligations I thought I’d have this afternoon have magically dissipated into the ethers, so I have time to read and write and think — imagine that. And I’m OFF for the next four days, with just a few to-do items here and there.

Good heavens, it’s great to not have to do anything.

For once.

Regaining my Dignity at the end of “Most Excellent Day One”

zen stones in waterI just woke up from my nap. I lay down for 2 hours, and I could have slept for three or more.

It felt amazing. I need to make supper, now. Get back on track. But I feel so amazing, after just a little bit of sleep.

And I know there will be more where that came from.

Because I have the next week off. Actually, a week and a day. It’s amazing. Fantastic. Just what I needed.

And now I can regain my dignity.

See, it suffered for many months, while I was working on this Mammoth Project. I’ve been over-worked, (of course) under-paid, I have been doing the job of 5-6 people, and I haven’t gotten a lot of support from my boss throughout. Just criticism from afar. Or meddling from afar. Or what seemed like outright sabotage. I’m not sure what’s in it for them, to make me look like I don’t know what I’m doing, or to override me, but bottom line, they did more harm than good.

Anyway, the first phase of the project is over, and now I can look towards the next phase — about two months off — and leverage the foundation I’ve built with people, thus far.

And start living and acting like myself again.

Catch up on my sleep — and stop making mistakes because my brain is mis-firing.

Chill out my stress levels — and stop getting overwrought and yelling at people.

Find the good in what I’ve accomplished — and stop feeling so self-conscious and insufficient, because some things didn’t go 100% according to plan.

I can actually hold my head up again, after nearly a year of feeling trampled by other people’s successes. I can actually get my bearings again and stand firmly on both feet. And I can get past the dismay at my brain failing me, time and time again, under conditions that seem custom-made to trip it up.

I can get my dignity back to where I’d like it to be.

And that started today, on this Most Excellent Day One (of 9), as I got to not worry about The Project for a whole 24 hours.

I’m looking forward to the next 8 days.

That’s the understatement of the year.

Now, I can sleep

Christmas wrapping
The final push is on…

I’m giving myself an early Christmas present. I’m not going to make the Big Trip to see my extended family for Thanksgiving. I’ve been working long hours for weeks and weeks (months, really), and I feel like I’m on the verge of getting really sick.

My spouse isn’t all that keen on spending all that time in the car, either. And during the most heavily traveled time of the year.

It just doesn’t make sense for us.

Yes, it will be unfortunate that we can’t see our families.

But it’s a massive relief that we’re not making the trip. It’s exhausting in every sense of the word — to the point where it’s not really safe to be doing it. Traffic. Potential for accidents. Family frustrations. All of it is just too much to handle, right now.

What I really need is sleep. Like, an extra 100 hours, to make up for all the lost hours of the past weeks and months. I need to retrain my system to level out, to calm down… to get out of the sympathetic bias that’s just torn the living crap out of me. I’m shaky… nauseous… dizzy… unsteady on my feet… Yeah, I’m in no shape to do much of anything for a week.

And that’s what’s going to happen — not much of anything.

I have off work all next week and the following Monday. I don’t have to go back till Tuesday the 28th.

I won’t have to set an alarm. I won’t need to keep my phone by my bed. I can just lie down and sleep, without worrying about being late for things, or forgetting things, or saying stupid things, or messing things up. I can just be. And recover.

And that is a beautiful thing.

Onward… back to bed.

After #TBI – Give myself some extra time. Be generous to myself.

capacitors
I tend to run out of energy

It’s pretty easy for me to push myself past common-sense limits. I get my heart set on being able to do something or being able to do something a certain way, and then when it doesn’t work out, I spend way too much time being hard on myself about it.

That helps no one. It really doesn’t help at all.

So, I need to be generous with myself and give myself the extra time I need to do things.

I’ve figured out what to do about my work situation. It occurred to me, last week, that I’m 2.5 years away from being old enough to qualify for early retirement. It sounds bizarre to say it, but I am. I’ll be 55 in a few more years, and that means — in the high-tech industry — I’ll be “old”. And old enough to take a retirement package.

Does this make me happy? You better believe it. “Happy” is an understatement.

I mean, there are things I like about the job, but it’s just too demanding, and I’m not being properly compensated for what I give up, each and every day. I provide a sh*t-ton of value to my employer, and yet…

But in another couple of years, I can not only leave, but also potentially leave w/ a retirement package that’s a nice little golden parachute (emphasis on “little”) that can buy me some time and give me a buffer against any drop in income I might experience.

In the meantime, I’m working on a particular skillset that will allow me to either transition to a different kind of role, or allow me to consult. I’m downloading all my LinkedIn contacts, and I’m building a prospects list for people to reach out to in the future. There’s some danger that some of my contacts will “age out” of the industry (as some are older than I), and that I won’t have as many people familiar with my past work, who I can reach out to. But I have close to 1,000 contacts, most of whom are well familiar with my work. So, I’m pretty hopeful.

I just need to get everything set up ahead of time.

That means I need to:

  • Brush up on specific technical skills
  • Stay current with the part of the industry I’ll be working in
  • Figure out how much to charge for my services
  • Build up my portfolio of solutions I’ll be offering
  • Keep my image squeaky-clean and not do anything in public that will put me in a bad light
  • Update my wardrobe to be more professional and consultant-like
  • Build out my website in ways that put me in a really great light
  • And more…

I’m sure I’ll discover a lot more I need to do, as time goes on. But for now, this is a good starting list. I need to stay steady and systematic, and really pace myself.

I’ve tried to get my own thing going, many times in the past, but it never really worked. I think I just pushed too hard, too fast, and I wore myself out. I never factored in the effects of all those concussions. I had no idea they would even bother me. After all, in movies and cartoons, people were shown getting hit on the head all the time, and it never bothered them. So why should it bother me?

I just always pushed through — also, because I was using stress to numb my pain and confusion. The more confused I was, the more in pain I was, the harder I pushed. And it backfired on me, time and time again.

Well, this is my do-over. I get to do things differently this time, and I will. I have a healthy timeline ahead of me… enough time to get all my ducks in a row, set myself up to succeed, and get all the pieces in place for the future I want to have.

I’ve been helping to make a lot of other people rich for a long time, so why not at least give myself a fighting chance at independence?

It’s the least I can do for myself, after all these years.

Onward… at a common-sense, considerate pace.

Brain injury comes in a number of different “flavors”, but it affects us in very similar ways

Brain injury is a brain injury, and as much as we may say “each brain is different, each injury is different,” we still need to look at the ways that each kind of injury is similar to others. And the experiences we have can be quite similar.

Loneliness, isolation, confusion, not feeling like yourself, getting angry quickly, mood swings, and let’s not forget the bone-crushing fatigue and the embarrassment that comes from not being the person you used to be… They are all things brain injury survivors have in common, and it’s helpful to actually treat people accordingly.

I honestly don’t understand why more emphasis isn’t placed on the experience of brain injury. That’s what trips us up, quite frankly. That’s the thing that makes our recoveries so much harder — the experiences we have and the effects those experiences have on our selves, our Sense-of-Self.

Well, that’s why I’m here. To speak up for those of us who tend to get stuck in our post-BI experiences, and need to see there’s actually a way out… Because there is. There is always hope — even in the most dire cases. Nobody can tell me different. That’s just how we’re built — to amaze… to heal… to grow… to learn. And learn some more.

Here’s a quick summary of the different types of brain injury:

Acquired Brain Injury (ABI)

includes things like stroke and anoxic (being without oxygen) brain injury. Some consider traumatic brain injury to be an acquired brain injury, because it “is damage to the brain that was not present at birth and is non-progressive” (See The ABI Manual for more). Personally, I wouldn’t call it “non-progressive”, but everyone’s experience is different.

ABI Resources:

Stroke

happens either when a clot blocks blood flow in the brain (called “Ischemic” stroke) or a blood vessel pops and there’s a brain bleed (called “Hemorrhagic” stroke)

Stroke Resources

Traumatic Brain Injury (TBI)

is related to trauma to the brain that comes from a fall, an attack, a sports injury, or an accident.

TBI Resources:

Concussion

is what people often call a “mild” TBI. Concussions are sometimes considered less serious than traumatic brain injuries, and a lot of people consider a TBI that clears up after a while, to be a Concussion.

Concussion Resources:

 

Seeing my skills for what they are – and aren’t

moon shining on tree in fieldI’ve been “back and forth” about my job, for the past few months. One week, I love it. The next, I hate it and can’t wait to get away. I supposedly got a sort of “promotion” a few weeks ago — more responsibility and more influence, but no more money. Doesn’t seem to be much of a promotion, right? My boss is making bad decisions and is pushing me to put their ideas into action. It’s pretty much of a train wreck, with all the people at the top fighting over their territory, making their minions represent them.

Ridiculous. I don’t agree with any of it. But somehow I’m supposed to make it happen?

The only benefit: it makes the situation crystal clear — I really need to get the heck out of that situation, brush up my technical skills, put my resume out there, and get ready to move after the new year. I actually have some old projects I’ve been wanting to revive, and now seems like a great time to do it.

I tend to have a pretty low opinion of myself, mainly because I know what else is possible, and I’m very clear about how far I fall short. Plus, always being tired, my self-esteem really suffers. Like today. I’m just not feeling that capable or worthwhile…

Except for something that happened last night.

I was on my way home from a meetup in a nearby city, and as I was rolling through the dark countryside, I saw a bunch of cars stopped ahead of me. I was coming up to a tricky intersection, where a hidden road crosses at the bottom of a long, gradual hill. The tail lights of the cars ahead of me weren’t moving, there seemed to be smoke in the air, and I could see people standing in the road farther up the hill, so I slowed down and pulled over, just to figure out what was going on.

When I took a closer look (I was pretty tired), I saw there was a car sitting in the middle of the road with its wheels splayed and its front-end crushed in. The interior was full of smoke, and the whole thing was shrouded in a gray cloud. I was worried at first about there being a fire and the vehicle blowing up — I’ve seen too many movies, I guess. But I couldn’t just sit there. It didn’t look like anyone was helping, yet.

I walked closer to the wreck – carefully. There was glass everywhere. Pieces of car. Rear view mirrors. Chrome and plastic. Halfway up the hill, I could see another car lying on its roof in the darkness. It wasn’t smoking. It was just sitting there, eerily motionless, as people gathered quietly around it.

The vehicle nearest me at the bottom of the hill was a tangled wreck. Once upon a time, it looked like it had been a pretty sweet Mustang. No more. The airbags were shredded. Drawing closer, I could hear voices. I could hear a woman’s voice and a man’s, so I knew someone was alive. I lifted up the “curtain” of limp airbag that was hanging over the driver side window, and behind it there was a driver with is face smashed in and blood all over him, talking to a woman on the remote assistance intercom — like those Northstar systems that come with cars to help you unlock your doors or call for help. The woman was talking to him like he was coherent, but he was really messed up. He clearly had a head injury, his movements were jerky and automatic — like I’ve been a number of times after getting clocked on the head. She kept asking him questions, and he was responding like he knew what he was talking about. He didn’t. He was in bad shape.

Beside him, there was a passenger whose left leg was bent weirdly. No wonder. The car’s engine had been pushed back practically into his lap. I didn’t get a close look at the other guy — who was talking a bit, too — because I was focused on just talking to the lady. And others had come over to help and were checking him out. I talked to the lady on the intercom, told her what I was seeing, and reported what others were seeing about the other guy.

I also “talked down” the guys in the car, who were trying to get out. The driver kept reaching down beside his seat for something, but I told him to stay putDon’t move. Help was on the way. The interior of the car reeked of alcohol, and one of the other bystanders who was helping said she’d seen drugs beside the seat.

The local first responders were there within minutes. The accident was just a few miles from the local fire station, and when the fire truck pulled up, I told the firemen what I knew. They were on it, and I got out of their way. Then I got back in my car and moved on.

When everyone else stood at a distance, I stepped up.

When everyone else couldn’t communicate and keep things in order, I could.

When a couple of seriously injured people were on the verge of potentially hurting themselves more, I kept them safe and kept things steady.

I’ve been in these kinds of situations a number of times. A co-worked who collapsed and was unresponsive… someone who’d fallen and hit their head… an elderly person who had a bad reaction to a medical trial they were participating in… a person pinned between their car and a fence, when they didn’t put it properly in park… I’ve come across those people who were badly injured or hurt enough that they couldn’t help themselves, and I’ve been there for them, till help came. Several times I’ve run for help, myself.

It’s what I do. It’s one of the things I do best.

And for all the foolishness that’s taking place at work, at least I know this is something I do. Handling reality. Dealing with a true emergencies.

And I need to remember that, as I navigate this scene at work… finding a path out… figuring out what’s next. There are some things I do better than just about anybody else. They’re just not part of my job description, right now.

After #TBI – Don’t depend on your brain’s weak systems

hand holding pen, checking off lists on a checklist
Getting stuff done… one thing at a time.

From the Give Back summary of how to fix your brain… This is something I have to constantly remind myself. It’s a hard one, because I hate to think of my system as being weak — or weakened. But that’s exactly what’s happened. And the thinking systems that have been weakened have been permanently altered. So, I need to always keep this in mind. When I forget it, I suffer. And so does my work and my relationships. My whole life starts to go downhill.

3. Don’t depend on your brain’s weak systems for organizing and memory to manage your time and your activities.

  • Get your brain to use your full intelligence to plan your day thoughtfully, a day ahead of time, when you can think everything through well.

It’s practically impossible for me to do this a day ahead of time, because things can change so rapidly with me. From day to day, I don’t always know what’s “coming down the pike”. Stuff changes rapidly — plans change, weather changes, people change their minds about what they’re going to do.

But that doesn’t mean I can’t plan in other ways. The best way for me to do this is break it up — look at my next day plan on the afternoon / evening before… and then check in with myself first thing in the morning. And keep track of things throughout the course of each day. Track it.

  • Write that plan down on a schedule form so that you take no chances of forgetting what you need to do.

Scheduling things has become a lost cause, in general, because things are so unpredictable at work and at home. So, I have a standard list format that I use.

[ ] Thing I need to do

[ ] Really important thing I need to do (I use a yellow highligher)

[/] Thing I am in the process of doing or have started

[x] Thing I have done (I have a green marker to track the things I’ve completed)

–> [ ] Thing I needed to do today, but didn’t get to, so I need to do it tomorrow. (I use an orange marker to make it stand out)

I try to keep a running list of things that I “carry over” from one day to the next. I’ll copy my –>[ ] items onto lists for later days. That way, I can keep track of everything I need to complete.

  • Develop the habit of writing plans and following them, and soon you will be in total control of your time and your productivity.

I agree. The habit of writing out plans and following them (as best I can) has done wonders for my ability to get things done, as well as my self-confidence. I have a support system that works for me. And when I use it (which I admit is not consistent enough), it really helps offload a lot of the mental grunt work, to save my brain for more interesting and important (and challenging) things.

If there had to be one thing I’ve done that’s helped me get back to the level of functioning I’m at now, it’s developing lists and systems around lists, that let me do what needs to be done without having to think too much about how to do it all. Coming up with a ‘standard operating procedure’ for just about everything — from getting up in the morning and going to work, to taking down the Christmas decorations — has made me a whole lot more functional than I ever was, when I was just going with the flow or winging it.

Lists are my friend. They can be yours, too.

Onward.

1. Know that you have a new brain, one that can work well once it is reprogrammed.

hand holding magnifying glass over brain, which is made up of gearsOne of the things I really appreciate about the  Give Back Orlando materials is that they don’t sugar-coat TBI recovery, but they also don’t make it into a “accept your new normal” approach, where you have to resign yourself to everything being so much worse than before. The core message is that you can improve… provided you make some specific changes in how you live your life.

The first change is:

  1. Know that you have a new brain, one that can work well once it is reprogrammed.
    • It needs to be reprogrammed because your old programs don’t run quite right on your new brain.
    • Help yourself to keep this fact in mind as you go through your day.

When we’re very young, we come into the world with the capacity to create a whole lot of synapses — connections in the brain that carry information. Over time, our synapses are “pruned”, as our brain refines its ways of doing and understanding things. By the time we get past adolescence, a lot more connections have been pruned than we had, just 10 years earlier.

It’s been said that one of the things that “gets you” after TBI, is that you may have lost a bunch of the connections you really depended on… and that’s a loss.

But here’s the thing, see? If we have “neuroplasticity”, we can create new connections to take the place of the ones we’ve lost. That, to me, is the essence of TBI recovery.

Granted, there may be parts of the brain that are so damaged that there’s no repairing them by present means. Maybe sometime on down the line, but not right now. But the brain is an amazing thing, and we can create a lot more connections than people used to think we could. In fact, the old ways of understanding the brain — that you can’t repair it, if it’s injured… that only certain parts are used for specific activities… that damage is permanent — those old ways have been disproved.

It’s not true.

What IS true, is that with regular practice and the right approach, the brain can be “reconditioned” to perform at, near, or even better than levels you had before.

But you have to realize that change has to happen. You have to deliberately create those new synapses, those new connections, those new ways of your brain functioning. You can’t keep doing things the same way as before, over and over.

You have to realize you have a new brain.

And you have to keep reminding yourself of that, through the course of each day.

It’s like trying to run a Windows 10 program on Windows 3.1 (remember that? I do). It’s just not going to work. Not because Windows 3.1 was so much worse. It was good for what it did. It’s just that the “gears” work differently now.

And you have to accept that fact.

I’m not talking about accepting it because it’s a sad fact that life is going to be so much worse.

I AM talking about accepting it, so that your life can get so much better.

Big difference.

So, that first step is the best kind of acceptance of all.

Again:

  1. Know that you have a new brain, one that can work well once it is reprogrammed.
    • It needs to be reprogrammed because your old programs don’t run quite right on your new brain.
    • Help yourself to keep this fact in mind as you go through your day.

From Give Back (Orlando): Summary of How You Fix Your Brain (after #TBI)

merry go round with city in backgroundI’m dusting off my old Give Back Orlando materials and taking another closer look at them. Since I’m back to being on my own — but this time with a whole lot more context, as well as a whole lot more experience and a history of actual support. I’ve made amazing progress over the past 10 years, and now the page turns in the chapter of my book.

I’m not sure a book is the right comparison, though. It’s more like a merry-go-round that slowly turns in cycles, while I ride the highs and lows. Yep, it’s exactly like that — a merry-go-round. Except, it’s not always a lot of fun. Then again, with my vertigo and nausea, merry-go-rounds stopped being fun for me, a while back. So, maybe that’s about right, after all.

Back to basics… I repeatedly come back to basics in this work. And it is work. It’s continuous, regular process that really has to be a way of life for it to actually take hold. I’m incredibly fortunate that I’ve found the supports I’ve had along the way. And Give Back Orlando was one of the first resources I found that helped me so much. My old neuropsych used to tell me how impressed they were at my progress, and I have to credit Give Back for much of that.

Heck, just knowing that it’s possible to recover, that there are others who have been through it and are just getting on with their lives — or doing better than ever… that’s huge. It was a major turnaround for me, when I first read their Models of Exceptional Adaptation in Recovery After Traumatic Brain Injury: A Case Series. To say that was life-changing is an understatement. It gave me incredible hope and a positive outlook that has stood me in good stead for the past 10 years.

Here are the basic tenets of the Give Back approach. If you’re struggling with TBI, I strongly encourage you to consider these – as well as the resources here.

  1. Know that you have a new brain, one that can work well once it is reprogrammed.
    • It needs to be reprogrammed because your old programs don’t run quite right on your new brain.
    • Help yourself to keep this fact in mind as you go through your day.

     

  2. Since your old habits don’t quite work well enough, you need to TAKE CONTROL of your brain and get it to think through the things you are going to do.
    • Your BRAIN no longer does its job well enough on automatic pilot.
    • Now, your MIND has to make sure it does its job properly, whenever you do anything in which the results are important.
    • Any time you need your actions or your words to have quality, your mind has to make sure that your brain produces quality at every step.
    • It’s as if your mind now has to be the boss.
    • You need to be MINDFUL so that you can be an effective boss.

     

  3. Don’t depend on your brain’s weak systems for organizing and memory to manage your time and your activities.
    • Get your brain to use your full intelligence to plan your day thoughtfully, a day ahead of time, when you can think everything through well.
    • Write that plan down on a schedule form so that you take no chances of forgetting what you need to do.
    • Develop the habit of writing plans and following them, and soon you will be in total control of your time and your productivity.

     

  4. Learn how your new brain works by studying your head-injured moments.
    • If you study them carefully, they will teach you a great deal about your new brain.
    • The more you become an expert on your new brain, the better you will be able to make it do what you want it to do.

     

  5. By analyzing your head injured moments, you will realize that you make most of your mistakes when you are not mentally prepared.
    • By writing a good daily plan, and by warning yourself whenever you are about to get into a situation in which you tend to make mistakes, you will help yourself to become well prepared for almost everything.
    • As you do this, you will have fewer head-injured moments.

     

  6. Your analysis will teach you how often you get overloaded, what overloads you, and how overload affects your thinking and your ability to do things.
    • Once you know what overloads you, you will be in a position to plan to prevent it from happening.
    • This will make a big difference in reducing head-injured moments.

     

  7. Every time you discover another head-injured moment, that is another step toward recovery.
    • Celebrate the discovery, just like finding a twenty-dollar bill in the street.
    • Develop a great attitude about recognizing when your brain malfunctions, because that is what makes a great self-therapist.

     

  8. On the other hand, if you analyze a head-injured moment, it shouldn’t happen again.
    • If it does happen again, you should be ticked off at yourself.
    • What did I miss?
    • How could I let this happen to me?
    • I’m supposed to be in charge of these head-injured moments, and this one snuck right past me!
    • Figure out exactly what went wrong with your plan, and be determined to never let it happen again.

     

  9. Be sure to understand that fixing your brain is not like fixing your car.
    • This is an ongoing fix-it process.
    • Whenever something important in your life changes, the change creates a flurry of head-injured moments that need to be fixed.
    • Whenever something stresses you out or makes you ill, you have more head-injured moments.
    • As you do self-therapy, you will also discover new, unexpected and quirky head-injured moments, even after years of self-therapy.
    • So self-therapy is not a task. It’s a way of living.

     

If you live this way, you control your head injury and keep head-injured moments from interfering with your life, but if you slack off, the head-injured moments will be back.

So help yourself to welcome self-therapy as something good you do for yourself, and avoid thinking of it as a chore.

That will help you to make it a part of your life.