Well, that was interesting… good times, bad times, good lessons

This is the story of my last three days. Snowstorm. Trees down. Wires down. Not much going on, other than winter. Storms. Electricity out. No heat, no running water, no television, not much connection with the rest of the world.

Living on battery power, using the mobile phone to contact the rest of the world. Staying close to the fireplace, keeping the fire going all night long, finding different ways to get meals and keep occupied. Waiting for the power to be restored. Hearing one thing, then another, then another.

Waiting, just waiting. Watching the snow fall. Moving it off the driveway. Off the roof. Off the back deck and stairs. Lots of snow. Half a meter’s worth. 18″ worth. Heavy, thick, packed snow.

And now I feel it. In my back, my legs, my arms, my shoulders. Bruises all over my legs, where I slammed against the snowblower. Cold. It was cold. And the all-over ache that comes after hours and hours of being tensed against the cold. Countless trips up and down the stairs to get more wood for the fire.

All in all, it wasn’t terrible, being out of power for two days. Longer than that, and it would have been a problem. We would have gone to a hotel, because my spouse can’t afford to get sick, and they’re more susceptible to cold than I am. We came this close to going to a hotel, then decided against it — the place we called said there were a lot of families checking in, because they lost power, too. And having a lot of kids running and screaming (’cause that’s what kids do, when they’re cooped up, let’s face it)… well, that wasn’t the most restful option.

Better to stay in our own space and try our best to stay warm and dry. Wait it out. Gather around the fire. Rest. Wrap ourselves in blankets and relax. Wait it out. Just wait.

And we did. Power was restored 3 hours sooner than they said it would be, and that was fine. In the bargain, I scored some major points at work for continuing on through with my work, despite having no electricity or heat or running water. I managed to logon to my work by connecting through my phone and then sitting in my running car to keep the power going to it, so I could complete some must-do tasks.

And now I have a reputation for being that much more of a can-do person, with total commitment to getting the job done. So, something useful came of it. Which is fine.

So it goes. I handled this storm considerably better than I handled others in the past. I kept my cool. I kept focused. I wasn’t a total jerk to my spouse. And I came out of it ahead of the game. I’m wiped out and would love to sleep for 12 hours, but I’m also keenly aware of how much good it did me to really move. And not spend all my time in front of a computer, like I’ve been doing for the last however many years.

It was good to have the enforced break. Away from the constant hum of machines, away from the low-level buzz of non-stop electricity. Listening to the wind. Getting out in the snow. Just living a very basic life, and being profoundly grateful for everything I have.

Now it’s time to go get some supper. The refrigerator isn’t smelling all that great. It stayed cold, but not cold enough. So, off I go to replenish it. And get something really good for dinner tonight. Something filling, substantial… and hot.

Just as it should be.

Onward.

Movement is not optional – it’s gotta happen

My left shoulder is still killing me. But I know how to fix it — for the near future and in the coming weeks and months:

Movement. Keeping mobile. Not letting myself sit still for hours and hours, like I have been for the past several weeks.

Or maybe it’s been months. I’ve had a lot going on, lately, and 90% of it has been in front of a computer. Yes, I’ve gotten a lot done, but it’s come at a price.

So, it’s time to change that up. Move my entire body (not just my hands). Get up and walk around the room, while I’m on the phone. Get my morning exercise AND build in additional movement (especially weight-bearing movement) throughout the day. Don’t just sit still for hours on end. That’s kicking my butt.

I’ve got a plan. Now, I’m going to get up and walk around a bit.

Because that’s gonna keep me knit together in one piece.

Onward.

 

Doing what has to be done — and loving it

Well, I’m off to an interesting start, this morning. I got a good night’s sleep, then I got myself out of bed at a decent time and got my exercise. Did some stretching. Did some lifting. Rode the exercise bike for a little longer than usual. I gained a few pounds over the past couple of weeks of intense work-eat-sleep-work cycles, and I’m not feeling that great, as a result.

Sluggish, stiff, the opposite of limber. And weak. That’s how I’m feeling, these days.

So, I’m doing something about it. And it’s not very pleasant, I have to say. It’s downright painful, in fact. Getting myself back on a regular routine, after going down the rabbit hole of overwork isn’t something my body is very happy about. It wants to languish. It wants to just keep eating and sleeping and working. But I can’t give in to that. Because that leads to more of what I’ve got now — weakness, chronic pain, and trouble doing basic things like brushing my teeth with coordination and putting my socks and shoes on easily. When my body isn’t working well, those things — and more — fall apart.

And I can’t let that happen.

Some days, it feels like a constant struggle to just maintain a normal pace. Some days, it is a struggle to do that. But struggle just comes with the territory in my life. Nothing important happens on its own, in my experience, and I tend to have different ideas about what should happen, compared to the rest of the world. So, to do things like have some peace, I have to structure my  life very differently from most people.

I’m not particularly interested in living in a steady stream of busy-work and mindless distractions to take my mind off the poor choices I’ve made. I’d rather just not make those poor choices, to begin with. So, that means I opt out of so many of the activities that others take for granted. I keep my social media interactions to a fraction of what most people have — including Facebook. I try not to get sucked into the current news cycles, including all the in-depth “analysis” (which just boils down to propaganda, from what I can see). I don’t go out to movies or concerts. I don’t drink alcohol or smoke, and I avoid bars and clubs when I can. I take time to cook decent meals and I keep my television viewing to a minimum, watching just a few shows — many of them on-demand, rather than clicking around the channels looking for something interesting.

And weekends I keep as low-key as possible. Every now and then, I’ll go out and do something, or I’ll launch into a flurry of errands and projects, but I try to avoid the rest of the world as much as possible on my weekends. I have to deal with everyone the rest of the week, so I give myself a break on Saturdays and Sundays.

Most people I know would hate living like I live. They’d find it boring. Or they’d get nervous in their own company. They wouldn’t like to hang around the house with only their own thoughts (and some interesting reading) to keep them occupied. They’d probably go out looking for something to take their mind off all that.

But for me, this is what I have to do to keep myself stabilized — and sane. Having these two days to decompress is not optional. Sure, sometimes I’ll venture out to spend time with friends, but the more active I am on a Saturday or Sunday, the more low-key my other day is. And the downtime is bliss. Sheer bliss. And I’m not sure I could live without it.

I was talking about this with a friend last night — somebody I haven’t seen in quite some time. They were asking why I don’t do as much as I used to, and I explained that keeping up the 9-to-5 work schedule, and then doing all the extra activities I used to do with my spouse, just got to be too much. It wore me out, and I needed some downtime. And they got it. Because over the past couple of years, they’ve been divesting themself of a lot of the “trappings” of a settled life. Rather than keeping up a house and paying a mortgage, they’re traveling around the country, house-sitting for friends for a month at a time, and then moving on to the next thing. Some people cringe at the idea, but it was working well for them.

It’s what they have to do, at this point in time. And it’s working. And they love it. Just like I’m keeping my life low-key on the weekends, cutting back on online social media stuff, and following the news a LOT less than I used to, while the rest of the world goes crazy around me.

To some, these would seem like sacrifices. And in fact, 15 years ago, before my 2004 mTBI, I would have really fought against a lot of these choices. But over time, I’ve realized that this is really the best way I can possibly live my life, and enjoy myself while I’m at it.

I’ve had a really busy couple of weeks, so I’m going to rest as much as possible, today. Do some reading. Think about stuff. Or just stay in bed. We’ll see what happens. In any case, it’s all good.

The rest of the world will be there when I resurface in another 24 hours.

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

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

I’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 put.  Don’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

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.

One 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)

I’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’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

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.