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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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.

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.

I probably would have been better off taking naps

I probably would have been better off taking naps

I’ve been thinking about all the time (and money) I’ve spent over the past year, working with the 2nd neuropsychologist… They responded back to my cancellation email saying “understood”. Actually, don’t think they do understand, but that’s neither here nor there. If they really understood, they’d offer me a refund for services-not-rendered, because to be honest, I’m not appreciably better off now, than I was a year ago April, when I started working with them.

If anything, I might actually be worse off, since they were pretty keen on telling me all the things I needed to look out for, and where my first NP was intent on getting me to not think of myself as disabled, the 2nd one was all about that.

Plus, they were all keen on telling me how badly off my spouse is, how I can expect them to go downhill sooner, rather than later, and getting them in for some testing, they could get help for their decreasing capacity.

Yeah, I’ve been through that before… again, with another “provider of services” for folks who can’t take care of themselves. I’ll be the first to admit that I can be gullible and overly trusting, especially when it comes to people in the “helping” business. I tend to take them at their word, which is how I want people to take me. But alas, it’s not always warranted.

Nor was my trust of this latest NP. Sure, they came highly recommended by the first NP, but I don’t think that old NP was a very astute judge of character. Plus, I think they have a tendency to be as trusting as I am. They spoke highly of a number of other clinicians over the years — but the ones they recommended were incredibly disrespectful of them behind their back. That does not fly with me. No way. No how. Not gonna work. And it never ceases to amaze me just what jerks people can be.

Well, anyway, I’ve gotten away from that bunch of jerks.

And again, I think back to all the hours and dollars I spent trying to stick with a program that wasn’t supported by others whose job it was to support me. I literally spent an extra 4-5 hours nearly every Monday night, along with untold hundreds of dollars, trying to make it work. Because I believed. Because I trusted. Because I was locked on a target that was incredibly important to me.

I would have been better off, just going home at a decent hour, getting some extra sleep, and spending the money on books and a new computer. I could have bought a lot of books — and a couple of really decent computers — with the money I spent on those sessions.

Well, live and learn, right? On the bright side, I did have some good times, here and there, and I did learn a few things along the way. So, it wasn’t a total waste of time and money. Just mostly.

And it has occurred to me that one of the big reasons I’ve flamed out at a number of jobs over the years is because of fatigue. Come to think of it, I believe that fatigue is the #1 Reason Things Have Gone South For Me At Work. Seriously. When I think back on all the jobs I’ve held that ended sooner than people expected me to leave, I always had a long commute, to and from the office. Over an hour each way – five days a week. The practice of working from home hadn’t shown up on the radar, yet, and I was still drawn to work in the city. I had to be on-site each and every day, surrounded by loud people, frantic situations, and all kinds of chaos. Even though I enjoyed a lot of it — fast-paced environments, and all that — it took a toll. It wore me out. And it took a huge chunk out of my resilience and ability to cope.

So, I had to leave.

Over and over again.

Sooner than I should have.

Some jobs, I left after only a few months. Others, I stayed nearly a year. Others, I hung in there for a few years, but got worse and worse off as time went on. Fatigued. Worn out. Confused. Turned around. Blown up and blown apart and wiped out, each and every weekend.

Fortunately, it’s not like that anymore. At least, with my current job, I can work from home 2-3 days a week. Sometimes I can even get a nap. And on the days when I do go into the office, I can go in at my own pace. Do a few conference calls from home, then drive in after 10:00, when the roads aren’t so clogged, and I can get where I’m going more easily. Evenings, I can go work out at the fitness center, then roll home after 6:00, when traffic is less. I should have done that last night, instead of trying to get home directly. I sat in horrible traffic for over an hour, total. Not a good use of time. I really should have worked out.

But again, lessons learned.

Next week I have another chance. Heck, I can even go work out this weekend, if I like. I really should. I need the strength work.

So, that’s my revelation for the day / week / month… I need my sleep and I have to take steps to make that happen for myself. Instead of forcing myself to make things work, taking up extra hours and energy (and fuel for the car) to wedge myself into a situation that’s not really working, I should do something truly constructive with my time and resources.

Sleep. Rest. Recoup. Regroup.

And just enjoy my life for what it is.

Where privilege, power, money, and influence fall off

1923 broken down car with wheel off
Sometimes, a wheel just comes off – I just wish I hadn’t “driven the car” longer than I had to

So, my life is morphing, and that’s okay. It’s good, actually. It’s a long time coming — a wake-up call, reminding me where I really fit in the grand scheme of things, and prompting me to “buck up” and take matters into my own hands.

Not be dependent on a system that’s inherently hostile to me, by design.

Take responsibility for my own situation, and do everything I can to advance my own cause, as well as support others who need similar help. That’s what this blog is all about — putting my own personal quest / journey out there, in hopes that others might just benefit from it as well.

Brain injury is woefully misunderstood. Brain injury rehab resources are irregular and over-hyped and work differently for many different kinds of people. Plus, they can be expensive and/or inaccessible to folks who aren’t rolling in money. So, this blog is intended to fill certain gaps that exist in the world — by design.

It’s been said several times by people on this blog (who have a history of involvement in the brain injury rehab field), that brain injury can be a “cash cow industry” that’s seen its share of fraud and exploitation. I can totally see how that can be — you’ve got patients who are impaired to various degrees (some of them severely), who can’t advocate for themselves. You’ve got friends and family and loved ones who know precious little about brain injury, what to expect, how to handle it, etc. And you’ve got an insurance infrastructure that will pay for some things, but not for others. Considering how vulnerable brain injury survivors are, it’s the perfect industry to get into, if you have no morals or ethics… or fear of burning in eternal hellfire and brimstone.

Even if you’re a good person with the best of intentions, keeping to the straight and narrow must be awfully difficult in that industry. My first neuropsych (NP) bucked the system for years, providing services to me at a discounted rate and submitting insurance claims with the billing codes that worked. The later NP apparently never mastered that skill. Either that, or they didn’t actually want to. They said they spent a lot of time fighting with the insurance companies, but it seems to me they didn’t explore every conceivable loophole available.

I just can’t get free of the belief that, if they’d wanted to find a way to help me at a sustainable level, they could have found it. Find a way or make a way. The fact that they didn’t, and then they charged me more to make up the difference… maybe that’s standard practice in the NP field, but that won’t fly with me.

So, the long and short of it is that here I am, on the business end of the rehab cattle prod — like so many others, removed from regular support because it’s overpriced, and I’m not paying market prices. Assigning market prices to services to vulnerable people seems… odd to me, anyway. Hell, having healthcare be market-driven strikes me as a complete departure from the way healthcare should be handled, anyway. Hospitals were often started by religious groups, and the concept of healthcare was expanded in the Roman Empire after Christianity became the official religion. So, there’s historically been a religious/spiritual element to healthcare.

Historically, that is. Over the past 50 years, perhaps because of the decline in religious fervor, it’s become more of a commodity. And healthcare, in my opinion, can be about the most predatory kind of market I can think of.

I mean, who makes their money off vulnerable people who have nowhere else to turn? Seriously… who does that?

Well, anyway, that’s pretty much how the world works, these days. Of course, there are healthcare providers who will step outside the standard-issue money-making paradigm and act as true healers. But those people can be few and far between. And I think it must be easy for young clinicians to fall into the dominant mindset of charging as much as possible for services rendered. Treating healthcare like a provider-consumer arrangement, where everybody is expected to be a “good consumer”.

That logic makes no sense to me at all. A few years ago, I wrote a post I am a shitty healthcare consumer, and it still holds true. I will never, ever be comfortable with the paradigm that reduces everyone in the healthcare equation to providers and consumers, as though sick and vulnerable people are actually in decent enough shape to “fulfill their role” and the power dynamics, privilege, and influence were equal.

That’s what that dynamic seems to expect — that doctors and patients are on equal footing. But we’re not. Not even close. They have the power, the knowledge, the influence, the ability to commit us against our will or prescribe treatments that no one else can. They hold the power over our lives and deaths, at times. They hold the proverbial keys to access to information and resources (diagnosis, meds and rehab, for example), which only they can wield in the public arena.

So, expecting patients to be “good consumers” is a stretch. It’s a stretch invented by people who don’t seem anywhere near aware of the inequities of power, influence, control, and knowledge. With great power comes great responsibility. Somewhere, things are falling down.

In my case, it fell down big-time.

My most recent NP knows:

  • I am the sole provider for my household
  • I have a dependent spouse who is unable to work regularly and is becoming increasingly disabled
  • I am being paid 20% less than originally promised, because my employer got acquired, and the new overlords don’t feel like paying out the bonuses I earned (which were included as part of my overall compensation)
  • I have specific challenges which make my day-to-day more difficult than they “should” be for someone with my base level of intelligence
  • I have no other reliable source of day-to-day support
  • Other people who try to help me, don’t have the level of expertise to understand the nature of my difficulties, so they mistake my neurological problems for psychological ones and try to treat me for that
  • I have to leave work early and drive a couple of extra hours each Monday to get to my sessions (which is a real hardship for me at times)
  • I have almost no retirement savings, thanks to the organizational problems after my mTBI in 2004
  • I have many house repairs to make, which will drain what savings I’ve managed to put aside, over the past 3 years. By the time the essential repairs are made, I will have no “safety net” left.

None of these issues are a problem for the NP. They are married to a fully employed spouse, they are on staff at one of the top hospitals in the nation. They teach at a big-ass university that’s one of the top schools on the planet. They have two offices in the same medical building. They live within a few miles of their office. They have the time and the money to take two weeks off to take their family to Paris and other points around the world. They have a PhD, and they present at professional conferences, as well as offer public education sessions. They’re in “thick” with some of the leaders in their field, being trained by some of the top docs. They’ve got a full roster of patients — a waiting list, in fact. And they’ve gotten rid of all their former clients who were on the type of insurance I have, because the insurance company won’t pay them their rate.

So, basically, they’re set.

And I would think, comparing their situation to mine, that they’d at least be able to cut me some slack. If I were in their shoes, I’d make an exception, because it can be done. One client out of tens doesn’t pay full price… big whoop. The difference is easily made up. I know, because I myself have been in many situations where I ran events where some people could pay full price, while others had to get a break. That’s just how things work in the world where I live — some have more money to contribute, while others have less money but other talents to add. You work a deal with people. You make the most of what they have, and if money isn’t one of those things, you find another way for them to contribute.

In this world, inequity abounds. What we do with our privilege and power says a lot about us as human beings. And if you apply the same measures indiscriminately across the board, expecting everyone to operate on your level and chip in the exact same amount of money as the next person, that’s not just unrealistic and unfair, to my mind, it’s unethical. It’s kind of shitty, actually.

So, yeah, I’m not bothering with that NP anymore. I’ve already deleted their contact details from my phone.

Maybe they meant to be shitty, maybe they didn’t. Maybe they’re just overwhelmed by their responsibilities.  Whatever. I don’t know what goes on the hearts and minds of others. But I do know that in the patient-doc dynamic, they were the one with the power, and they chose to use their power to disenfranchise me.

Screw that.

Screw them.

I’m just sorry I didn’t see this sooner.

I could have saved myself a lot of money, if I’d just moved on without giving them the benefit of the doubt.

Whatever.

Onward.

 

Taking a closer look – again

picture of person with a light swich on the side of their head and a hand reaching down to turn on the switchSo, I’ve been on this TBI recovery quest for about 10 years, and I’ve had some amazing results. The last neuropsych I worked with marveled at my progress. In 40 years, they had not seen anything like my recovery.

Well, of course not. They’d never worked with me.

The thing is, in all those years, I rarely had a very clear view of exactly what I was doing with that individual each week. Or why. I had my own ideas, of course, but I wasn’t fully aware, I wasn’t fully “online”, and I didn’t have the full capacity to really wrap my head around what all was happening, and why it mattered.

I just showed up each week (sometimes twice a week) and did what seemed appropriate.

Now things are much more stable with me, I’ve got a much better understanding of myself and “how I work”. I also have a good hindsight into what worked for me, and what didn’t.

So, it’s time to start digging in again… see what’s there.

My current neuropsych (NP) has decided to not drop me because of insurance. They actually seem to understand that there’s value in it for me, and I think there’s value in it for them. I suspect that my old NP had a talk with them (they keep in touch), and talked them out of dropping me. Either that, or they just didn’t give it a whole lot of thought before they made that decision.

Either way, we’re going to be working together for the foreseeable future – at least till the end of the year, anyway. And a big part of what we’re going to do, is study my past NP evaluations, to more fully understand what it is/was that I’ve been dealing with. It’s all been a little hazy to me, over the years, despite being so intent on learning more about my situation and working through it. I suppose there’s always opportunity to learn and grow – and I often don’t fully grasp what’s going on with me until years after the fact.

Well, it’s years after the fact. And I’ve got a much better understanding of what the deal is with me, how things are put together, how it affects me, and what I can do with that knowledge to make my life even better.

One of the big areas of focus with me is on my strengths. What do I have going for me, that I can use to offset the difficulties? What are the unique talents I bring to the table, that I can put to good use for myself and others?

This isn’t just about figuring out what’s wrong with me, so I can sit around and feel badly about myself. It’s about finding my relative weaknesses and then matching them up with my strengths, to do something useful with myself.

And take things to the next level.

This isn’t going to be easy, by any stretch, but it’s important work.

And it’s time to do it.

Onward.

Well, then, get some exercise. Move.

Bangkok traffic jam with cars and trucks and motorcycles all backed up below tram lines
Feeling a bit backed up, lately

I’ve been feeling a bit down, lately. Dragging. Drab. In pain. I’ve been having some tightness around my ribcage that really hurts when I laugh. I can’t remember doing anything to myself – – no recent injury. Just maybe sleeping on it wrong.

I’ve been feeling down, too. Just a low-level depression. The Catch-22 situation with my neuropsych — if I really go into great detail about how much help I need, then I get bumped down in the proverbial pecking order and end up stigmatized (and potentially looking at higher insurance rates, on down the line, if the current health coverage changes go through). But if I don’t enumerate all the different ways I need support, I can’t ask for it. Literally, it’s Catch-22.

I think I’ll read that book again. I think I read it years ago, and I need to read it again.

I really have to take matters into my own hand, in this regard. I’m not disabled enough to require outside help to function at a basic level. That can be arranged. I have the means to do that, and I have books and information at my disposal to expand my understanding about what’s going on. I need to just do that. Take matters into my own hands, and reach out to others for help with clarification.

I’ve signed up for some free online courses about the brain. I need to stagger then, so I’m only taking one at a time. I think I’m going to use those online courses — and access to the instructors — as a professional reference point. I’m not actually getting the kind of assistance I want from the NP I’m working with now, so I’ll branch out and cover myself in other ways.

As for my day-to-day, I need to get myself back on track. I haven’t been exercising as much as I should. I’ve been locked on target with some projects I’m working on — as frustrating as it is, my work situation is keeping me busy — and I’ve been sitting too much, moving too little. I have all-day workshops today and tomorrow, which I can easily do, just sitting down all day.

That’s no good. I need to get up and move on a regular basis. I have a lot of energy, and if I don’t move, that energy tends to “back up” like a lot of traffic trying to cram its way through a narrow space.

That can be fixed, though. I exercised more today than I have been, lately, and now I actually feel better. It’s amazing, how much a bit of movement will do — especially lifting weights. Even if they’re not very heavy, still, the motion and the resistance is good for me.

I’m also working from home today, so I can walk around the house while I’m on the phone. That’s the magic of a mobile phone — it’s mobile. Tomorrow, I can walk around, too. I just need to listen in, so I can walk around the building while I’m listening. It’s not hard. I just need to do it.

And so I will.

I’m feeling better better today about my future prospects than I have been, lately. I got plenty of sleep, last night (almost 9 hours), I did a full set of exercises, I had a good breakfast, and I’ve got a path forward charted for moving forward.

I believe I can trust myself, and that I have the ability to see where I’m falling short. I trust that I can research and reach out for ideas to address issues that arise. The main thing is really to keep on top of things. Take responsibility for myself. Do what I  know I need to do. And just keep moving on.

The world’s a big place with a lot of different options. I just need to make the most of the opportunities I have, keep focused on my end goals, look for opportunities, and keep moving forward.

Will the world step up and help me with my problems? Not if I don’t ask.

Do I need other people to help me at every turn? Sometimes yes. Sometimes no. The main thing is that I help myself, using what assistance I’ve gotten from others and the resources I have on hand.

I’m in a very fortunate situation, where I have the ability and the available resources (time, energy, attention, interest — even if money’s missing) to take care of myself. So, I’ll do that.

A new chapter is on the way, and I’m actually looking forward to what’s to come.