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.

 

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Gratitude adjustment

Indeed.

Today has started out on the rough side. I got in bed before midnight, but I wasn’t able to sleep past 5:00. So, here I am, operating on about 5-1/2 hours of sleep, with a full day ahead of me. Oh, well, I guess I’ll do the Thomas Edison thing and take a long nap later today. By his own admission, the inventor of the light bulb considered sleep to be a waste of time and missed opportunity to work and invent. He once wrote that he considered people who slept 8-10 hours a day to be “never fully asleep and never fully awake — they have only different degrees of doze through the twenty-four hours“.

Of course, he did nap an awful lot (and there are lots of photos showing him taking “power naps“), so that’s where I’m putting my focus — on just getting a nap later today when I can. I’ve got the whole day — and I’ve got tomorrow, too — so waking up early isn’t such a terrible thing.

So long as I use the time productively, of course. The thing that actually got me fully awake after I woke up was not such a great thing. It’s something I don’t often have trouble with, but today, it’s a big ole burden — Jealousy. Frustration. Feeling like a relative failure.

See, yesterday afternoon I called a creditor who I’ve been paying off for the past couple of years. We arranged monthly payments which have been pretty intense to meet each month, and according to my notes, I was going to be all paid up as of this coming January. Well, in talking to them, I learned that I’m nowhere near being fully paid up — I have about another year to go at the current rate — before I’m all paid up. This puts a huge kink in my plans. Having $400 less each month that I have to pay out has been a huge part of my planning for 2014. It was going to free me up, let me pay off other things that have been hanging over my head, and open up the options for work I can take on.

Because if I need to spend $5000 less each year, that means I don’t have to earn Top Dollar for my work, and my options for what kind of work I can take in, will expand. I hate to settle for less, but in my discussions with recruiters, I haven’t been very encouraged by what they’re telling me I can make. Times are tough all around, that’s for sure. And that $5000 break was something I was banking on.

Then my mouse died — the left button doesn’t click. And I realized that I have a lot of things I need to take care of this weekend, which I did not do for the past few weekends (I forgot I had to do them). And money is very tight – the mortgage is going to be paid a month late for the next three months, by my calculations. And the bank loves to call me, even though I technically have a 60 day grace period before they send me to collections. Last night, it was all starting to come in on me, and I went to bed feeling overwhelmed and generally put-upon.

I woke up this morning in a funk, pissed off at myself for not having called the creditors sooner and basing my future plans on a mirage… pissed off at myself for forgetting the things I needed to do… pissed off at TBI for screwing up my life back in 2004 so much that it’s taken me almost 10 years to get back to some semblance of normalcy… pissed off at how hard I have to work at things, how much I need to constant re-think, how much energy it takes, and how overwhelmed I feel.

All. The. Time.

I feel like I can never catch up, and it makes me crazy. No sooner do I come close, than my goal moves out of reach again, and I have to work all the harder.

Geeze. What a rotten way to start the day.

But it gets better (not)… then I got to thinking about an old friend of mine who has really been pissing me off, lately. I first met them when they were an admin at a massive, faceless, soulless corporation, just putting in the hours and hating their life, and longing to do more. They had some health issues and left the 9-to-5 for a while, then they returned to the workforce… and then married someone with a great job, and moved out to the country where they were going to focus on their writing and try to become a published author.

We kept in touch now and then over the years, and one day I was messaging back and forth with them, and they were saying how they wished they could get feedback from other people for their writing. They were enjoying being able to write all the time, but they felt very isolated in the country, just doing their own thing by themselves. They weren’t working a regular job, because their spouse made enough for them to stay home, but the solitary life was not for them.

I suggested they start a blog — blogging was brand new, back in 2006 — and they said, “What’s a blog?” I told them about blogging, how awesome it was, how liberating. They could write each day, work on their style and their “voice”,  and they could get feedback from readers.

So, they did just that. They started a blog. And within a few years, they had a regular readership of thousands of people each day, they had advertisers, and they were starting to get requests from magazines to write for them. Big magazines. Well-known magazines. Jackpot. One thing led to another, and now they’re working on their third published book, they’re doing international book signing tours, and they’re leading online classes that are in high demand.

Holy crap. What an amazing success story. They literally did everything right, and I’m really proud that I helped make that happen, because a lot of people have benefited from their blog and their work.

On a good day, that’s how I feel — proud of them and gratified and in awe of how well they’ve followed through on everything.

On a bad day — like today — it bugs me to no end. Because despite the fact that I’m the one who encouraged them to follow their dream and I’m the one who told them about blogging in the first place, never ever have they actually thanked me for that tip. They did thank me once for supporting them with a little pep talk atta-boy email I sent to them, but other than that, it’s been crickets. I guess they’ve been so busy, they may have forgotten about my tip. But in other ways, they’ve just kind of brushed me off, whenever I’ve reached out to them as a peer.

Like I’m not good enough for them anymore. Even though I was there for them, when no one else could be bothered.

In fairness, I didn’t do myself any favors in our friendship. When we were still in regular contact by email and IM, I was a few years out from my last TBI, and I was pretty erratic and unpredictable. They actually sent some business my way that I couldn’t follow through on, and I think I kind of screwed things up for them and the people they referred to me. I also posted some stuff on their blog that was a little “out there,” and I’m sure it made them wonder if I was right in the head (for the record, I wasn’t, at that time).

Even so… it sticks in my craw that I have to really work at the most basic things, while they seem to be swimming right along. And when I read their Facebook posts and their blog posts about how fantastic everything is… how awesome their life is in their bright new apartment that’s getting new hardwood floors and has plenty of sunlight… and how exciting life is in their very popular, up-and-coming locale…. how connected they are with their professional connections and their readers… how stimulating it all is… how much they love their spouse… as well as the next member of their perfect family who’s on the way and due in just a few months… God, it really works my last nerve.

Okay, I get that we all make our choices. I didn’t get where I am totally by accident. But this is one of those mornings, when everything feels terribly unfair. The main reason they were able to do all they’ve done, is they’re married to someone who has made it all possible. They haven’t had to work for anyone else for close to 10 years, and they’ve been able to travel all over the world, because of their spouse’s connections. They’ve gotten insider tips on places to live and business connections, thanks to their spouse’s connections, and they’ve had the freedom to make plenty of mistakes along the way, without it hurting their work, their business prospects, or their vision.

It is really unlike me to be all pissy and envious like this, and it doesn’t feel good. I know that comparing myself to anyone else is a losing proposition, and it just drags me down for no reason. I don’t know what kind of pain and suffering they’ve experienced in life, I don’t know the reality underneath the facade of perfection they put forward, and who can say if they are anywhere near as happy and truly successful as they seem to be? Heck, for all their books that have been published, who knows if they’re even seeing much profit from it? And who knows how much creative license they’ve had to part with, in order to work within the system?

Who can say if they’re even that happy? I know they seem to have all the ingredients in place — attractive spouse, trendy house, new baby on the way, world travel, a successful blog, and a string of publishing credits that keeps getting longer — but who can say what their actual experience is?

Heck, they might be even worse off than I am, on the inside, whilst putting forth the right impression on the outside.

Who knows? All I know is, there’s this thought in my head that they have it so much better than I, that they’ve had it so much easier than I, and that they’ve succeeded as a result of others’ help, which they aren’t even acknowledging.

But that’s an ugly way to start the day.

I’ve known that since about 5:15 this morning. I’ve also known I needed to change my attitude, one way or another, since about 5:17 a.m.

Thinking through how I felt about that old friend of mine this morning, I gradually found my thoughts turning to another old friend who’s on the other end of the spectrum. This is someone I became good friends with, several years after the above-mentioned Friend No. 1 disappeared from my daily life. Friend No. 2 and I were great buddies for years, working closely together and producing some great projects on a regular basis. We’re very simpatico, with similar world views and values, and we’ve kept in touch intermittently over the years. Whenever we’ve caught up for coffee, we’ve had some great discussions, and we’ve talked about collaborating on a number of projects — none of which ever panned out… but oh well…

Anyway, Friend No.2 and I caught up about four months ago, when I told them about a project I was launching – starting a new business on the side – and I showed them my product. They were really impressed and we had what I thought was a great conversation and a jump-started connection.

One thing that really struck me, though, was their attitude. After years of what most would consider a very successful career, a solid marriage, and the ability to take time off work for a few years, thanks to smart investments and prudent savings, they seemed… well… bitter. Like life had been unfairly unkind to them, they’d been used and abused, and they were running out of options. They didn’t seem to have a whole lot of enthusiasm for their future, and they seemed a bit depressed when they talked about their general situation — which to me looked pretty good.

I mean, seriously — they have a really nice car that’s paid for, their marriage is strong, their house is paid off, they’ve got an amazing new riding mower with all the tools to keep their lawn in tip-top shape, they know who they are, and they know what they love to do. They have a lot of the things I lack — and am suffering for pretty intensely at times.

And yet, they’re bitter. They can’t do some of the things they used to do all the time — like go out to clubs every weekend and listen to live bands because it’s way too loud. They have ideas for inventions, but they can’t figure out how to turn them into money. They’re brushing up on their technical skills, but they can’t seem to find an exact match for what they want to do. They’re feeling used and abused and washed up, like their life is over and there’s nowhere else for them to go.

It really surprised me to hear them talk about the things that get to them. It’s like they were just settling for turning into a curmudgeony old coot without even putting up a fight. They’re about 15 years my senior, so they are getting older, but still… I’ve got relatives who are in their 80’s, 90’s, even past 100 years old, and they’re still going, still engaged, still enjoying their lives.

After what was mostly a good meet-up, Friend No. 2 disappeared. I gave them a call a few months later to see if they were interested in helping out with this project. When we met four months ago, they said they’d love to help with it, but when I called them again, they couldn’t talk at the time and said they’d call me back. I never heard back from them, and frankly I’d be surprised if I hear from them ever again.

Friend No. 2 is gone. By their own hand. It’s a loss for me, because when they were “on”, they were great to talk to and hang out with. But if they’re not going to be “on” and they’re just going to be bitter and resentful about every little thing that doesn’t work out for them, I really don’t need that in my life. And I doubt they’re going to come around.

So, there’s my tale of two old friends. I’m probably going to un-friend Friend No. 1 on Facebook, because their self-congratulatory tone just rankles me and serves no purpose in my life. Friend No. 2 is out of the picture, probably for good. And here I am in the middle, looking for a way to find gratitude to buoy me up out of my morning funk.

Comparing myself and my life and my success to others makes no sense. I can only compare myself to myself — and when I do that, I can see how incredibly fortunate I’ve been to receive the gifts I’ve gotten over the years. The TBI in 2004 could have ruined me, no doubt. But through divine grace, a bunch of risks I took that worked out, and a ton of hard work, I’m back on track and moving towards something truly fine. I’ve got love in my life and a spouse who is still with me, even after 23 years of some very challenging times. I have a house, a commuter car and a late-model minivan, I’ve got a regular job with a regular paycheck (which I’m probably not going to be leaving soon, because of the change in my financial timeline), and I’ve got my health. I have personal projects that keep me engaged and involved in my own life, and our local libraries have amazing collections which I can request from anytime I like.

I really do have so many blessings in my life, and considering where I come from, I have every reason to start the day feeling grateful and proud.

So, that’s where I’m at — having a gratitude adjustment, so my day doesn’t need to fall prey to bad thinking habits and mental laziness about things that may or may not be true. Yes, I’m tired. Yes, I’m disappointed that my financial plans for 2014 have been altered. Yes, I have to work a little bit harder than I’d like, today, go buy another mouse, and try to catch up with things I forgot to do for the past month.

But life doesn’t happen by itself, and things happen for a reason. It’s dawn. The sun is finally coming up. Time to find my reasons, and help things to happen.

Onward.