I am a shitty healthcare consumer

BE AFRAID! BE VERY AFRAID!
BE AFRAID! BE VERY AFRAID!

Thinking about finding new doctors — a PCP and a neuropsychologist — I am dreading one thing in particular:

The expectation that I’ll be a “good consumer of healthcare services”.

Augh! Nothing sends me over the edge like that “consumer” label, when it comes to healthcare — especially brain injury recovery. It makes me NUTS.

Here’s why:

The label “client” boils us down to a set of behaviors or “consumer choices”, rather than living, breathing, vulnerable human beings in need of assistance in both subtle and obvious ways.

The label “provider” makes the doctor/neuropsych seem like an impersonal automaton who’s just going through the motions of providing a thing — like a vending machine delivering the bag of chips from the cubby you chose, or a fast food employee asking if you want fries with your order.

The client/provider terminology reduces the whole relationship to a series of transactions, which is really what they are in insurance company terms. And that sucks all the life and humanity out of it. Instead of being living, breathing people who show up in need of assistance, we’re male/female objects of study who are assigned whatever coded solution the provider deems necessary.

Calling us “clients” also completely misses the fundamental hallmark(s) of brain injury in a number of ways. As a reader commented on a recent post, we don’t have the choice about whether or not we need treatment. It’s not like you wake up one day and realize your shoe has a hole in the bottom, so you go out to your favorite store and pick up a new pair… or you think a certain outfit makes you look fat, so drive to the mall to find more flattering clothes.

With a brain injury, you may not even realize that you suddenly have needs — or if you do realize that, you may not understand what it all means — or you may not have the capacity to reach out and find help — or you may not have the means to get the help you find.

Using the client paradigm for brain injury survivors is wrong — and stupid — in so many ways. It’s also cruel and perpetuates suffering in countless ways that directly violate the Hippocratic Oath that every doctor must swear to. They actually promise “I will utterly reject harm and mischief” — but the client concept just perpetuates harm and mischief without end. Okay, so mental healthcare people, including neuropsychologists, don’t have to swear to the oath, but even so — wouldn’t it make sense to at least have an interest in rejecting harm and mischief?

From the comment:

I can still hear the founder of the National Head Injury Foundation (NHIF) (whose daughter has a brain injury) when a group of advocates with brain injuries were discussing how demeaning and offensive the word “client” was at NHIF annual meeting in 1988. She was defending her position by giving us examples of her being a client of hair dresser and her insurance agent. She said she had the ability to go to another hair dresser or insurance agent if she didn’t like how she was being treated. “I’m a client of theirs, but I have the power because I can go to someone else with my business”.

Hahahahahahaha… Sigh.

“Client choice” implies the capacity to A) identify what you need, B) see that you are/are not getting your needs met, C) go somewhere else.

A) You have a brain injury (hello!) – how the hell are you supposed to be able to identify what you need? You are often blind to your own deficits AND you can come up with all sorts of imagined deficits which aren’t actually there.

B) Your brain injury can prevent you from determining whether or not your needs are being met, because of damage to assessment and decision-making functions in the brain. Even the most poorly educated brain injury professional would know that. It comes with the territory. If you can’t determine what your needs really are, how in heaven’s name are you supposed to tell if those needs are being met. As an aside, I was convinced for years that my neuropsych, while helpful in many ways, wasn’t really helping me with my main problems. But guess what? They were. I just didn’t realize it for, oh, about five years. That’s way longer than most people have access to, or continue with, brain injury rehab.

C) Thanks to the Swissy-cheesy medical system, with is chock full of hacks, under-educated docs, aggressive/defensive insurance companies, and hurdles that are well nigh impossible for completely functional people to navigate, the chances of us being able to shop around for better help are slim to none. In rural areas (as in, most of the USA), you take your life in your hands, when you choose a doctor. Even in urban areas, it’s hit and miss. I’m going through this right now, with replacing my two docs — I feel like I really got lucky finding the two I’m losing. How am I supposed to repeat that luck? I have maybe two good thinking/functioning hours a day, thanks to fatigue and overwhelm, and no offices are open at the time when I’m at my best. The rest of the day, when I’m working and living my life, my bandwidth is severely limited (though I do a great impression of a functional average person). I simply don’t have the leisure of scouting around and going through an extensive screening process. And even if I did, I have no confidence that I’d be able to find reliable help in a timely manner — or that I’d even choose well.

Even after 10 years of recovery and being more functional that I’ve ever been, I feel like I’m basically screwed. After all this time, and with all my new tools, I still have no faith in 1) myself and my abilities to successfully navigate a complex and hostile system, or 2) the medical establishment which protects sub-par doctors under a veil of professional courtesy and allows terrible (and dangerous) doctors to “practice” medicine on patients who basically amount to science experiments.

I am the epitome of a terrible healthcare consumer. I’m an awful client. I question doctors’ authority. I challenge their ignorance. I bring pen and paper with me to write things down, and I type up my issues to give to them, when I arrive. I research my own conditions, I get to know my own “ecosystem”. I don’t sit back and let the doctors do all the driving. And I’m non-compliant, because some of the things they tell me are lazy… or uninformed… or overtly hostile… or deny my right to personal autonomy.

I don’t believe in roles-based medicine. I don’t believe in much roles-based anything. People who have to fall back on some template of behavior are instantly suspect to me, and people who spout jargon without even thinking about what it means, are on my shitlist. If you have to have your behavior defined by someone else, I’m not interested in working with you, because you are dangerous.

Of course, I will if I have to. I may have no choice, because contrary to the idea of us being “clients”, the selection of decent doctors who have a clue about my condition is sparse, scant, and the majority of them are booked up. Or they don’t take my insurance. I’ve had to make do with shitty doctors for years, and the prospect of having to go back to that again, doesn’t brighten my day. It’s almost like the whole system is designed to fail us.

Seriously, it’s like the insurance companies and the medical establishment want us all to just die off — after they’ve collected our premiums, of course. It’s much cheaper for us to die. And a lot less trouble for them.

Treating brain injury survivors as clients or consumers of a medical product system is a great way to ensure that the people who wish us ill, actually get their wish. It’s also is a very stupid way to look at things, and no right-minded individual who actually understands — or genuinely cares about — the impact of brain injury on person’s ability to assess, evaluate, and choose, is going to adopt or repeat that nonsense.

The problem is, it keeps happening.

Oh, screw it. I’m going for a long walk in the woods.

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The loneliness of the long-distance TBI survivor

lonelyTonight is a lonely, lonely night for me. I felt it, driving home. I think it’s the change of clocks, the loss of that hour of sunlight, the way my life does not shift along with the time, but I have to adjust myself and my life to fit into that change.

It’s hard.

It feels like everything is dying around me. In truth, the natural world is simply going through its cycles. If I went to Brazil, it would be turning to spring, right now. Maybe, when I am much older, I will migrate south of the Equator, when fall starts to arrive. No more autumns… no more of that. And then I will come back north, when it starts to turn to autumn there.

It’s an idea.

Work is very strange, these days. People are getting attitudes about the merger. It is to be expected. They are also having territorial wars. That is to be expected, as well. My position may be shifted to another group. I was expecting that, to be honest, but I really like my current group, so I’m in no hurry.

I stay later than everyone, because I get in the office later than everyone. Plus, I love the work I do, so it is like play for me. Everything works faster at the office, which is why I am there. I’m happy.

But today I felt lonely. Isolated. Irritated. Like I was falling behind.

I left the office an hour earlier than usual. But driving home, the traffic was terrible. That’s why I leave an hour later than most people. I miss the traffic. It’s better that way.

And while driving home, I was overcome by this intense sense of isolation. Like the whole of life was passing me by, and I didn’t have any meaningful connections with anyone I really felt like I could get along with. Even my neuropsych, whom I have been seeing for 5 or 6 years, doesn’t seem like someone I’d get along with outside of the sessions we have. I just talk to them for an hour, once a week. That’s it. One hour out of 24… one day out of 7. That’s not very much at all.

Plus, that hour with them doesn’t seem to make much of a difference, when it comes to the difficult things in my life. In terms of discussing my work, it’s great. They are very helpful with professional subjects. They support me in ways that nobody else I know can, or does. But when it comes to my personal experience of everything just sucking so terribly, the depression, the upsets, the disconnects, the meltdowns, the confusion, the malaise, the sensory issues… they are really no help at all. They’re worse than no help. They actually hold me back from understanding what’s going on inside. They minimize my experience, dismiss my concerns, and tell me I’m just taking the wrong attitude. I’m fine. My faculties are fine. I’m exaggerating. Again.

If I gave it a lot of thought, I’d blow up. But usually when I meet with them, I am so wiped out from a long day’s work, I haven’t got the energy to fight. So, I leave it alone.

I talk about work. And everything gets better.

Tonight on my way home, I took a detour around the traffic jam through a town where a former friend and I used to meet for breakfast. We had an on-again-off-again friendship, and they did not treat me very well, a lot of the time.But we had some things in common, so I overlooked it.

Until I couldn’t anymore. They were just so obnoxious, sometimes, telling me how much smarter and better educated they were, than I was/am. I wrote them an email saying I couldn’t have anything to do with them unless they treated me better. They answered. But I did not have the courage to read their reply. Years passed before we had contact again. Then we were back in touch for a few months. They had a brain injury from surgery that they went through, and maybe that’s why they treated me badly. I could look past that.

Then they disappeared.

I don’t know what happened to them. I think I will email them now, to see if they are still around.

Done.

Anyway, I think I’m just very tired from this week. That always puts me in a funk. And I have been working very hard, so of course my brain is tired. And when my brain is tired, nothing seems very good.

At all.

So, I’m feeling lonely. Isolated. I have no energy to go out and get connected with live people. This is why TBI is so isolating. We barely have energy for ourselves, let alone socializing. Maybe a solution would be to have all the people with TBI live in a community where we could just hang out… and when we’re tired, we just get up and go back to bed.

Wouldn’t that be amazing. To just go back to bed whenever I’m tired. Impossibly amazing.

But I’m not holding my breath.

People at work tell me to go home. Don’t stay so late. I have done contract work for so long, I’m used to putting in my hours, no matter what. Pushing through. Getting my hours in. Topping off the clock. But nobody else seems to care about that.

So, I left early tonight.

And I got stuck in traffic.

And I felt terrible, all the while.

Maybe I’m a workaholic. That would not surprise me. My work, though, is the one thing that makes my life meaningful and pleasant. It’s a pleasure for me to work. Why would I not? I have no kids. No energy for that. Work fills a need that most people fill with socializing or drinking or drugs. Or their families.

Me? I have my work.

Tomorrow I paint some more.

And then it’s Sunday. And I am OFF. I think. I have some things I need to get done, in order for that to be true. No, I’m not off on Sunday. I have chores to do. Yardwork.

So, I guess I’ll do my virtual vacation thing — where I just decide to let the world go pound sand, and I don’t care about anything or anyone. On purpose. I’m not being mean. I’m just going on a mental vacation.

Because it is lonely. And I feel alone.

And I need a break. From people. From everyone. From it all.

Just happy to be here

Uh oh – I just got back from a session with my neuropsych, and it appears that some of the “adventures” I’ve been having — some of which were really fun at the time and left me feeling energized afterwards — were actually caused by very poor decisions and a lousy ability to assess risk.

So, I’m actually lucky to be alive. Many, many, many things could have gone wrong on three separate occasions over the past six months. I realize that now.

Good grief.

Well, I’m pretty bushed after that session. It took a lot out of me.

I need to have some supper and go right to bed.

Later, all…

The most magic 30 minutes of my day

Yeah, that’s the ticket…

Yesterday I had a nap. I stepped away from my desk for about half an hour to recharge my batteries. I walked 5 minutes to my car, which was in underground parking quite a ways from my office, put the seat back, put the headphones on, made myself comfortable, and I did my progressive relaxation.

I even got about 15 minutes of sleep in the process.

And when I woke up (which was 2 minutes before the alarm I’d set), I felt amazing. Refreshed. Alive. Human.

Then I collected myself, walked the 5 minutes back to my office, and I got on with the rest of my day.

I have heard it said that naps can disrupt your sleeping pattern, and it’s better to keep yourself awake and go to bed early. They obviously do not push themselves to perform at the level I do, from the moment I wake up in the morning. From the moment my feet hit the floor, I’m in GO mode. I have to be, because getting myself up in the morning is a monumental task that takes everything I have, some days.

Anybody who thinks I can make it through my day on a night’s worth of sleep has obviously never experienced the kind of exhaustion point I get to, around 2:00 p.m. each and every day. It is pretty brutal. By the time the afternoon rolls around, I’ve been going full-tilt-boogie for 6-8 hours. I can continue push through, sure, but I am good for nothing, the rest of the afternoon. Seriously, good for nothing. Even the things that I love doing — and that I push myself to do — turn out to be a waste of time.

Wheels spin. But they get no traction.

But if I can sleep… that is another story.

Knowing that I can sleep later on, and that I’ll be able to recharge my batteries, also makes it possible for me to push harder at the beginning of the day. When I think I’m going to have to pace myself… that my energy stores from a night’s sleep are going to have to last me all day, I hold myself back in the mornings. I’ve just now realized this, actually. When I wake up tired

Today is a completely new day — or so I keep telling myself. I’m a little tired this morning, to be honest. It’s been a long week, and I’m tired already at 7:00 a.m. I will pick up speed later today, when I am working. I’m not going into the office, so I have more time to focus on working, and less to spend driving. I also have more time to spend thinking about my own projects and making some good progress on them — without the pressure of daily performance of way too much work in way too little time.

So, there is hope for me today. I don’t have to be subjected to the upset and uncertainties of all the people around me (I came back from my nap yesterday to find my teammates huddled in a corner bitching and complaining about working conditions.) I can set my own pace and do my own work, without others interfering with their emotional incontinence.

It’s a relief not to be at the office, because the environment there is pretty depressing. It’s just a constant pressure cooker of uncertainty and chaos. When I say “chaos”, I mean there is a total lack of recognizable patterns to anything that happens. That is to say, there is no regular cadence, no regular pace, not much that’s predictable at all, from a day-to-day standpoint. It’s constant interruption and constant uncertainty. It’s not like I need any guarantees in life. But it would be nice to be able to not have everyone around me intent on interrupting my train of thought to ask me questions they can answer themselves.

It’s almost as though they are just stopping by to feel a little relief from their uncertainty.

As a matter of fact, I think that’s exactly what they’re doing — just stopping by to get a little boost to their self-confidence and sense of belonging. Because that’s what I bring to the table — respect for others, the ability to calm people down when they are all worked up, and a certain sense of calm in the center of the storm.

On the bright side, it’s great that I’m able to do this for people. On the downside, it doesn’t help me get my work done… and it’s actually keeping me from making progress in my own workload. Other people not being able to manage their own internal state, is probably the biggest hurdle to my own productivity. It’s not that their frame of mind is upsetting me. They are literally keeping me from doing my work, because they keep running to me and interrupting me and hijacking my workflow, to answer questions they never should have had to ask.

Sigh.

Anyway, in another 13 weeks, this is going to cease to be my problem. Oh, hell — if I can get things wrapped up before then, I’ll be free to go even earlier. I don’t have to be locked into a specific timeframe. I have had this July deadline in my mind, because that’s when I’m scheduled to be done with my big-ass project. But I might get things done even before that.

So, there’s some leeway there. And I’ve just thought of a way I can speed things up — some of the stuff I’m depending on others to do for me, I can do myself. They’re not experienced (or actually smart) enough to figure it out. Plus, they friggin’ hate my guts for reasons that are all about their crappy self-regulation, their incompetence, their jealousy, their brown-nosed politicking (which cannot stand the glare of objective scrutiny), and their sad work ethic (or lack thereof — I actually expect them to do their jobs, ogre that I am)… as well as shoddy management which just lets them get away with anything they damn’ well please.

So, the inmates are running the asylum. In a very big way.

And I have less than no confidence in them.

But the happy and sane part is, it doesn’t matter. They can be all pissy and pitch their hissy fits from their corner of the corporate cosmos. I can just work around everyone, and actually get sh*t done. I don’t have to be dependent on them to get their acts together, in order to move forward. And on top of that, I can be sharpening some excellent skills of my own in the meantime.

This task is a huge opportunity, but those idiots are not seeing it. I can see it plain as day, and I can hear the trumpets from heaven loud and clear. Their ineptitude is opening a door for me to step through, and that makes me incredibly happy, now that I think about it. For that matter, I can spend my weekend working on this, and actually get it all done in time for Monday — AND have it be an excellent investment in my future.

So, that’s good. And it’s giving me a big boost. It’s not all a waste of my time. It’s not all an exercise in futility. Far from it. It’s actually a positive thing, and turning it around in my mind to see the opportunity and the door opening a little more to my fantastic future is the first step in the right direction.

As long as my head is clear about this, and I’m rested and energized and keeping my batteries charged, it’s all good.

Later today I will have my nap. My magical 30 minutes to recharge my batteries. But for now, it’s…

Onward.

 

Now is not the time to make any major decisions

When I woke up this morning, I wanted to:

  • divorce my spouse
  • quit my job
  • take off down the road
  • change my name
  • work my way across the country, moving from town to town, earning enough to survive on by fixing people’s websites, washing dishes in restaurants, and doing odd jobs

Every now and then I have this same impulse, and it usually involves getting a stray dog and a beaten-up old pickup. Somehow, it all seems so much… better... than what I have going on in my life now.

Then I think about winter. And I think about getting robbed. I also think about not being able to shower for days on end, and what that might mean for my job prospects.

And I realize how very tired I am.

The past several weeks of going non-stop has torn the heck out of my system. I’m definitely not myself, these days. Oh, I’m myself — but the parts of myself that I can usually manage to moderate when I’m reasonably rested, are jumping out all over the place, like they do when I am on Prednisone. Steroids make me a crazy-person, and so does stress and lack of sleep.

So, I need to factor this all into my world view. And not make any major decisions until I can sit up straight for extended periods of time and walk a straight line when I get up, without needing to rely on this adrenaline rush to keep me functional.

In 24 hours, I will be on vacation. This is good. I will have a full week to unwind, do absolutely nothing at all, if I so choose, and only do the things I really want to do. There will be none of this jumping to assist someone who has brought misfortune to themself and everyone around them… none of this fixing things that others break… none of this covering for people who are not interested in doing a complete job… none of this working overtime to decipher and accommodate unreasonable requests.

At least, I hope not.

But if there is, I will have had plenty of sleep to keep up with it all.

My plan… Sleep, get up and eat breakfast, go for a walk outside, stretch and exercise, come back to the beach house and relax… then sleep again.

Sounds good to me.

I will also have time to read up on some of the things I have been unable to get to, because of my schedule. I have some really interesting reading I’ve been wanting to do, but haven’t been able to, because of the mind-numbing stupidity at work. Seriously, the work is so mindless and rudimentary, it has not helped me at all. Plus, I’m surrounded by people who are far more consumed with food and shelter and feathering their nests, than with the intricacies of the human condition.

Looking back, I can see how the last three years have really dumbed me down — a lot. No, not dumbed *me* down, but the quality of conversations each day haven’t really held a lot for me, intelligence-wise. Come to think of it, my neuropsych is the one person I’ve been able to talk to about really transforming my life, at a level that I’m comfortable at. We’ve had some seriously good discussions — some of which have irritated the crap out of me, but that irritation has helped me define further in my own mind the things that I truly believe.

So, that’s been helpful. But I’m in serious need of more frequent mental stimulation than that — and along different lines than what to eat and how to fix up your house.

And for the next week, I can get exactly that — more stimulation of the type I need. I’ll have time to unwind and let my mind expand… get uncrimped from the contortions it’s been going through, and go in directions that are of my choosing, rather than necessity. I know, deep down inside, that I can make any situation into anything I want, yet I’ve been so tired lately, I haven’t had the ability to think outside the little box that I seem to be in.

So yeah, now is not the time to decide to change my life wholesale. It’s not the time to make any major decisions about relationships, work, living situations, or really any major aspect of my existence. It’s time to kick back, take stock, think about what I truly want my life to be like — what sort of qualities I want it to have — and give myself the freedom to just feel good in general.

Rest and relax. Unwind. Uncrimp. I’m sure there are better times ahead for me, I just need to make certain I don’t jump the gun and burn a bunch of bridges… and make things worse for me, just because I’m stressed and tired.

Onward.

So, just keep at it

Yesterday was a very up-and-down day.  I had to get some medical tests done last week, and I didn’t get the results back till yesterday, so it was a tense weekend. The tests came back with some non-standard results — but nothing to be concerned about on the extreme end of the spectrum. It’s just one of those wait-and-see types of things.

So, I’ll be waiting and watching and making notes about things that happen that seem unusual or unexpected.

Yesterday went pretty well all day — my spouse and I have been having a lot of trouble with arguments escalating into shouting matches, and we’ve been working pretty hard, trying to restore some civility to our relationship. We’ve been having a lot of troubles, as tends to happen with families that are in financial straits, and who have additional health issues. The pressure is pretty intense, and we both often feel as though we’re just there for the other to hound and hassle.

So, we made the extra effort yesterday, and things were going pretty well. Until later in the evening, when we started to argue about health choices my spouse has been making, which are really impacting their life. They have several conditions they have to be careful of, and they just haven’t been careful. At all. Things escalated, and the evening went south pretty quickly.

Not nice.

And today I’m feeling pretty hungover from the emotional drama. It was so friggin’ pointless — unbelievable, what some people will do, to avoid looking at their habits and admitting they are making bad choices. Not just poor choices, but BAD choices that can have lasting consequences.

I’m pretty sick about the whole thing, and given how many times they’ve agreed to change and seemed really intent on changing… then went right back to what they were doing before… I don’t have much hope. On the “bright” side, I was able to take out life insurance for them through my work. No reasonable insurance company would insure them, but my work offers free, no-exam-required life coverage up to a certain amount. I hate to sound cold, but given the path they’ve been on, it’s about the only thing left that I have to cover me, in case all their chickens come home to roost.

I’m not one to look on the dark side, but at the very least, I can be prepared for the worst. The person I’m married to has absolutely NO interest in getting life insurance — they think it’s “depressing” and don’t want to dwell on potential misfortune. So, I’ve got to protect myself. ‘Cause they’re sure as hell not going to do it. Hell, they won’t even protect themself.

It’s maddening. When you love and care for someone who is neglectful of their health and then attacks you when you ask them to change their ways, what the hell can you do? Makes no sense, to be stuck in some kind of emotional vortex, avoiding dealing with reality just ’cause it’s unpleasant.

Then again, they’ve pretty much always been this way. It’s only in the past several years, as I’ve gotten my own act together and really focused on dealing with my own issues, that I’ve become less tolerant of this kind of foolishness. In fairness to them, I never had a problem with it before, so why should I now?

Because I really, really want to live a healthy life. And I would like it very much if they would join me in that commitment. But they may not. So there we have it.

Oh, screw it. I’ve got to get back to work. I’ve just gotta keep steady with my own life. If they choose to screw themself over and wreck themself, there’s only so much I can do. I just have to take care of myself. ‘Cause they’re not going to do it for me.