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.

 

Well *that* rehab price is not going to work for me

stacks of 100 dollar bills

And so, the insurance drama comes to a sputtering halt.

I’m opting out. The neuropsych who agreed to work with me despite insurance problems has jacked up the price to 4 times what it used to be. That’s way more than I can afford. Apparently, I’m absorbing the cost of their insurance shortfall.

That’s fine. I don’t need to deal with this crap. They can carry on without me. I don’t feel like getting caught in the middle of their conflicts. I mean, seriously, these specialists offer their services and expect insurance to cover it all — without really making a case for why they should — and then the patients get caught in the middle, when both sides can’t agree about what’s worth the investment. I’ve been paying good money into the whole tax system for years, thanks to neuropsychological rehab work. But apparently, the insurance companies don’t value that enough to help me keep solvent. And that neuropsych can’t see fit to cut me a break on their reimbursement. They’re gonna get their money, one way or another.

The wild thing is, they’re the one who’s decided they’re going to charge all that money. And they’re the one who’s decided they won’t go the extra mile with the insurance company to help me out. So, they have one less client, as of today.

I had been pretty stoked about continuing to work with a neuropsych, but it’s clear that’s not going to work for me. I’d thought about cutting back to once a month, but realistically, that isn’t going to work, either. With me, contact has to be at regular intervals, or not at all.

The whole thing pisses me off, quite frankly. The NP I’ve been working with knows I’m the sole provider for my household, that I’m making 20% less than the market rate (because my employer decided to stiff us on our year-end bonuses) and that my spouse is increasingly dependent. They know that I’m not made of money. But for some reason they think I can afford hundreds of dollars a month to see them.

Nope. Not gonna happen.

The other thing that gets me is how — all of a sudden — I’m paying 3-4 times what I’d been paying before. Suddenly, the price jumped, without my consent or assent. They should have discussed this price increase with me before they made the move, but they never came right out and told me how much more expensive it will be to work with them, without the full insurance coverage. They just jacked up the price, and that was that.

I’m not happy about it. It wasn’t responsible of them. And if they’d told me this was going to be the case, when they changed their billing practices, I could have saved myself a couple hundred bucks by just cutting them off.

I actually shoulda cut them off three weeks ago, when they started push-pulling me around. I don’t have time for the back-and-forth. It’s harder to deal with than a simple let-down.

On the other hand, not having the added expense of their sessions each week (and the gas I burn to get there), and not having those additional 2.5 hours of drive time, will certainly simplify my life. I’ll have time to do more things I want to do — like relax. And get some rest. Maybe even read something. Oh, and blog.

So, this is a new start for me. And it’s fine.

Onward.

The things I need to know, to move forward

two rock climbers on climbing wall

So, the session with my neuropsych (NP) went well yesterday. We actually sat down and went through the data from my prior two evaluations, and I got to refresh my memory about what’s going on with me behind the scenes.

The things that jumped out, which are measurable problems are:

  • processing speed
  • visual memory problems
  • resistance to short-term interference

We talked a bit about these issues, and I got a clearer view of what actual difficulties I have. I struggle with certain things all the time, but I don’t always have a clear view of why that is. Maybe it’s my processing speed. I don’t seem to put things together right away, so I often don’t even realize that I’m struggling till later.

The idea that I’m slow doesn’t make me very happy. I’ve got “superior” intelligence, but my speed can be glacial at times. That puts me at a disadvantage in the speed-addicted world, where everything happens at high speed. It also doesn’t help me in social situations, where people gauge your intelligence by how quick you are. Obviously, that’s not a fair comparison. But that seems to be the public bias.

The thing that bothers me more is the visual memory thing. I tend to think of myself as a visual thinker, but maybe that’s not the case. My memory was the worst, when I was trying to remember pictures. I forgot things pretty quickly. Like they’d never even existed. Compared to my verbal memory (which also kind of trailed off at times — I lost track of important details), it was a lot worse.

I need to dig into this more, because I think this may be why I struggle with some things I really, really love. I’m an “anatomy geek”.  I love to study pictures of human anatomy — feet, hands, shoulders, backs, legs, torsos, internal organs, the nervous system, even the musculature of the head. But for some reason, no matter how hard I study, no matter how hard I try, I can’t seem to keep the images in my head. I tried to become a personal trainer, years ago, and the reading materials were fine. But I couldn’t get the anatomy piece.

Maybe that’s why. If that’s the case, I need to either stop getting all these atlases of the human body, thinking I’m going to memorize them all… or I need to find another way to study. I’m not willing to let go of my love of the human system, so I’m not going to give up my atlases. I just need to find a new way to memorize. And not just memorize, but really understand how things are put together, using all the tricks in my toolbox.

My first NP was pretty intent on making sure I didn’t get down on myself and think less of my abilities. I have a tendency to focus on the things I do wrong (I was raised that way, actually), and that can really drag me down.

Now I really need to work with my issues in a more focused way. I know the numbers I’m looking at are old — the last eval I had was about 5 years ago. I should really get a new eval, but it costs a lot of money, and my insurance won’t cover it. So, unless I come across an extra $5K that I don’t need for something else (and wouldn’t that be wonderful), I’ve got to work with what I have. Too bad. I’m stuck.

Then again, I’m not that stuck. I can still observe what’s going in my life, see what’s causing me problems, and deal with that. I have a lot going on, so it can be a bit of a “dust storm” with lots of competing information, and I may not always be able to make distinctions. But at least with the handful of issues that my NP eval has identified, it gives me a handhold.

All of this can be like standing in front of a rock wall, trying to figure out where to grab onto first, to start climbing. All I need is a few tips and hints.

Then I can get started.

Moving up.

Onward.

Upward.

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.

“is it common for a stroke victim to lie about everything?”

house with black dots over it
This is what life after stroke may look like – you don’t realize what you don’t know… and you misrepresent it

Please Note: All brain injuries are different. They will affect people in different ways. The following are my observations from personal experience with a stroke survivor, as well as what I know about brain injury. Not everyone is going to have this. My point is, lying is a complex behavior that may be unintentional, as well as organically based — not deliberate or manipulative. Some people may be manipulators, and they may become moreso after stroke, but some people simply don’t realize what they’re doing, and they need help and compassion, not judgment and suspicion.

Somebody found their way to this blog by searching for this question: “is it common for a stroke victim to lie about everything?”

I believe it’s not uncommon.

Stroke can confuse you about what’s really going on. And they may not even realize they are lying.

Either that, or it can make a person very anxious, to the point where they’ll lie to get out of trouble, or they’ll just say whatever comes to mind, to cover their tracks.

It can be a real problem, because it can keep a stroke survivor from telling you exactly what’s going on with them.

And if you don’t know, you can’t help them the way they need to be helped.

It sucks.

But it happens.

Tired. Looking forward to getting back to my regular life.

trail through a forest

I’ve been sick, on and off, for the past couple of weeks, so I haven’t been able to swim.

I’ve also been crazy busy at work, so I haven’t had much time to focus on doing more than reacting to other people’s “stuff”.

I really need to get back in the pool. And get back to my exercising. I’ve had some neck and shoulder problems, so I haven’t been able to work out as much as I’d like. My neck is feeling better – and I booked a chair massage at work for this coming Thursday. I hope that helps.

I’m feeling okay, but I’m pretty beat, right now. I had a full weekend with more activity than usual, and my spouse is sick, so I’m taking care of them. I made some calls to all the possible neuropsychs who had been recommended to me by someone — but I still have some others I need to reach out to.

Turns out, there’s a chance I might not be able to get insurance to cover another assessment. Well, it was a long shot.

If I ever have an extra $2,000-4,000 lying around (ha!), I’ll give the docs a call.

Work has been way too dramatic for my tastes, lately. All sorts of politicking and what-not. That’s tiring, too. Like everybody’s rearranging their deck chairs on the Titanic…

But next week, I’ve resolved to just ignore all that. Let people go on their way, and not give them any thought. I have my own life to live, after all. And they’re not paying me rent to hang out in my head.

Life goes ever onward.

Onward.

Moving on

Earnings and taxes paid from 2005-2016
Earnings and taxes paid from 2005-2016

I’m done worrying about the whole neuropsych thing. Looking at my past earnings and taxes paid, I’ve been keeping steady since 2009, and I’m actually in a better situation now, than I was just a few years ago. That first couple of dips, right after my TBI, when my earnings fell through the floor, and my taxes actually exceeded my income (I had to hit my savings), got turned around pretty quickly. I’m not saying that I couldn’t have done it without help. But there seems to be an awfully strong connection between the time I’ve spent working with a neuropsych and prior to that. The money I’ve made has gone directly to helping others. So, it’s not like I’m sitting around getting rich. It would be nice if I could, but that’s not my goal. An awful lot of money has gone to everybody except me. I should probably change that pattern, I’m thinking…

The money’s just an outward indication of how well I’ve been doing, overall. I can’t even begin to tell you just how much better my thinking process is, just from talking with the right kind of professional with the right kind of mindset. Clearer thinking that doesn’t get dragged into my TBI-induced fog… that’s priceless.

It’s been great, having someone in my court, over the past 8 years, but at the same time, it hasn’t always been that great. There’s been a fair amount of aggravation and problematic stuff in my life that they haven’t helped with. I’ve taken care of those things myself — and never said a word to them.

I’ve looked to them more for professional insight on my situation, as well as my spouse’s. That’s been hugely helpful. But it hasn’t been without its pitfalls.

I know I’m not like the standard-issue patient. I’m independent, yes. I think for myself, yes. I keep my own counsel in may respects, and I don’t expect someone else to give me all the answers. I just look for others who have a specific set of domain expertise, so I can bounce ideas off them.

There aren’t many people like that in my world, on a regular basis.

So, having someone there with PhD level expertise and years of experience to round out their perspective, has really been very helpful.

I guess I’ll have to look somewhere else to find that kind of input. Connect with other people who can — and want to — discuss the role of the brain in cognition and behavior. It sounds obvious. Of course the brain is involved in cognition and behavior, but it’s the specific mechanics that really interest me. And I have yet to find others who share my fascination.

Maybe I just haven’t looked around enough. I’m sure that’s it. If I spent the same amount of time finding new connections that I usually spent with my NP (4+ hours, once a week), I’m sure I could expand my world. The problem is, those interactions would be unstructured, which is difficult for me to deal with. I need structure and a clear beginning and ending, to make the most of the time. I also don’t want to chat about this and that. I want to dig right into the “meat” of the subjects I’m addressing. I’m on a mission, and I need to interact with others who are as focused as I am.

So, what is my focus? Well, for years, it was both recovering from mild TBI and getting my life back on a track that I could be genuinely happy with. Maybe I’m an overachiever of sorts, but I can’t see why I should do any less than I’m capable of. I have a lot I want to accomplish, and that takes industrial-strength focus and determination. I’m hard-headed, that’s for sure, so that will carry me through a lot of situations. But I also need to be mindful of the ways that my brain tends to work against me.

Things like getting enough sleep. Eating right. Getting enough exercise.

And having some good support in place.

I still need to figure this one out. It’s all a work in progress. Maybe I find someone I can work with, maybe I don’t. I’ll give it a try today, and see what I can come up with. Make some calls. Do some research.

It’s all a process, anyway.

Onward.

 

Choosing to stay chilled out

Image shows a cat lying on its back on an easy chair, with a t.v. remote lying on its belly
Image shows a cat lying on its back on an easy chair, with a t.v. remote lying on its belly

I’ve been uptight for way too long. I’ve been cranked up, worked up, stressed out, for as long as I can remember. In fact, I didn’t know how to relax until about 10 years ago, when I started deliberately practicing that.

I had no choice. My spouse was seriously ill. I was losing it. I had to figure out a way to get myself back from the edge… I was dangerously close to it, and my life was literally disintegrating around me, along with my sanity.

I got help. I found a neuropsych who could work with me.

I also learned how to do “progressive relaxation” — and I did it on a regular basis. It wasn’t just some fun thing I wanted to try out. It was life-and-death, and the balance of my life depended on it. I sat za-zen. I meditated each day before I did anything, and then again when I went to bed.

Over the years, I’ve lost touch with that old practice. I just didn’t feel like doing it anymore. And I’ve gotten increasingly cranked up and tied up in knots, as the months and years have progressed.

I’m back at that “choice point” again. Relaxation isn’t optional for me. It’s got to become a way of life. It’s not that I’m close to the edge. I’m just sick and tired of being stressed out about everything, and having nothing good come of it. Consider it a reality check on the ROI of being stressed. The return on the “investment” isn’t good.

That means, the time and energy spent is it’s not an investment. It’s a waste. I can’t get those hours and days and weeks back, that I lost to being stressed. They’re gone for good. And what do I have to show for them? A little, but not a lot.

So, I’m going to try something very different. I’m not sure how long I’ll be able to keep this up, but my plan is to keep my system in a prolonged state of relaxation. Just let my body relax. Just let my mind not worry about all that sh*t that everybody else is so worried about. I get too bent about crap I can’t control. It’s just kind of dumb. What the heck do I expect to happen as a result of my outrage, anyway? That it’s going to change anything? It doesn’t — except my internal state of mind. It just wrecks my peace. It doesn’t actually turn the speeding car in the right direction. If anything, it just pushes my internal accelerator to the floor.

And what do I have to show for it, after all those years of slamming the pedal to the metal? Not a whole lot, to be honest. I’ve spent a lot of time being angry, frustrated, outraged, confused, and not nearly as successful as I’d like to be. I’ve gotten in my own way, with all the frenzy. I’ve literally made myself sick, by letting my fight-flight response get the better (and worse) of me.

I know, I know, TBI has complicated matters for me. It’s at the root of much of my suffering, and not understanding it has made things so much worse. There’s no doubt of that. But I’ve also made things more difficult for myself by my choices to get bent out of shape, and stay that way — and also by not actively managing my issues. I have no excuse, now. I haven’t had an excuse for years. I know I’ve got sh*t going on with me, and it’s my responsibility to handle it, already.

But I’m getting tense again.

Let’s try to change that… No, don’t just try — DO.

To quote Yoda…

Do, or do not. There is no try.

It is possible to actively change your internal state from fight-flight to relaxation. I’ve known how to do it for years. But I haven’t consistently made a habit of it.

Till now. Till I got sick and tired of having nothing to show for my outrage, other than… outrage.

For the past couple of days, I’ve been deliberately relaxing when I felt myself tighten up. I tighten up — get tense — a lot. After being in a constantly tense state for most of my life, I know how to do that. It’s an immediate reflex. A knee-jerk response.

And when I consciously relax — just let it all go — things tend to clear up. Even if they don’t completely clear up, I feel better. And that’s something. I’m tired of feeling bad all the time, for no good reason. I’m old enough to know better, and I do. I’m also old enough to want to just enjoy myself, instead of chasing all sorts of distant goals that — if I’m honest — were never going to work out, in the first place.

Enough wasting the energy. Enough wasting time I’ll never get back.

Time to relax.

Choose to chill.

And enjoy my life.

Regardless.

Onward.

Turning a new page in the chapters of my life… again

open book with a landscape scene in the pages
This picture looks a lot more pleasant than my situation feels…

I’ve shifted direction in my TBI recovery, yet again. I’ve had to do some soul-searching, over the past year, as I’ve adjusted to the change in neuropsychologists — and my insurance company said they wouldn’t cover the support I need on a weekly basis. My official diagnosis, for insurance billing purposes is “Generalized Anxiety Disorder”. Ha – if only they knew. Actually, my anxiety is very specific. It’s comprehensive and exhaustive in detail. Calling it “generalized” isn’t exactly accurate.

Basically, some doctor who’s contracted to review their cases said he can’t see any reason why I continue to  need professional support from a neuropsych, and I should seek out “community support” instead.

So, I guess I’m supposed to attend support groups held by the local BIA or something like that. Or make more friends. Maybe call a support hotline. Dunno.

That’s all very well and good, and in a perfect world scripted by Hollywood, that would work. The thing is, I’m the sole caregiver for an increasingly challenged spouse, who has trouble walking, and is getting more emotionally volatile, impulsive, and forgetful by the month. I’m the sole breadwinner for our household, and my responsibilities include $upporting a weekly national broadcast that’s run on over 100 markets nationwide. I have a mortgage. I have a full-time job. I have a lot of people depending on me, but my ability to reach out for help is constrained by A) my reluctance to disclose my TBI history to anyone, and B) my spouse’s professional reputation, which is very much at stake.

If I disclose my TBI and the full range of my challenges (which extend past the brain injury stuff) and get 100% accurate about what I need and why, I will automatically enter the ranks of the “disabled”, according to the official definition.

And I can’t have that. No way. No how.

This is not a slam against disabled people. It is a slam against our society which stigmatizes and relegates the disabled to second-class citizens and makes it next to impossible to live a full life with a designation of “disabled”.

I cannot live my life in a “disabled” social/economic bracket. I just can’t. And as long as I can keep up the appearance of performing at “normal” levels, I’m going to do exactly that. Regardless.

If I turn to the community for help — leaning on friends and acquaintances and my social circle — my spouse will pay the price. Because they are keeping up appearances, too, and much of what they do with others hinges on others’ perception of them as a 100% capable individual. The mobility issues are obvious to everyone, but their cognitive-behavioral challenges only appear behind closed doors. I can’t go around telling the world about what really happens, because that would seriously hose their reputation and ability to participate and be accepted in the circles they work in.

So, there’s my conundrum. And there’s the reason I could really use a neuropsych who understands not only TBI, but other neurologically based cognitive-behavioral issues.

I have a couple of choices:

  1. I can find another neuropsych (“NP”) who can work with me, who is smarter about billing with the right codes, not to mention helping me rise above my current situation. I need to do this, anyway, because the current NP is very focused on just averting disaster — calling attention to the problems I have, rather than my strengths. I’ve developed a bit of a complex, working with them. My old NP was very focused on growth and development and living large, even in the face of TBI. This one… not so much.
  2. I can go it alone. I’ve done that before, and an awful lot of TBI survivors do just that. I’ve got access to a lot of great NP books — some on my bookshelf, some in the library — so I can study up on it, myself. I’ve pretty much rehabilitated myself, anyway, in many respects. My old NP told me so. I’ve sometimes wondered why the heck I have to work with an NP, anyway. I’m not nearly as bad-off as many. I’m more functional than even those who haven’t gotten hit on the head a bunch of times. Why not just handle this myself?

Here’s the thing — I really am focused on growth and development, and I’m also very focused on a neuropsychological approach. And it’s important to me to have access to a highly trained professional who can offer their expertise and insights to my situation. I’m not like a lot of TBI survivors who don’t have an academic interest in this stuff. I’m very different. And my results have been atypical for TBI recovery.

My old NP told me so. In 40 years of rehab work, they’d never seen anything like it.

So, anyway, I got a bunch of names to contact about getting another NP evaluation, as well as working with my situation to improve and take things to the next level. I got the info a week ago, but I took a bunch of days off, just to relax and let myself catch up with things. Now I’ve had my break, so it’s time to start calling around. I’ll do that this morning.

If I find someone, great. If I don’t, I’ll take matters into my own hands. Even if I do find someone, I’ll still do that. It’s all a work in progress. The next chapter… as the page turns.