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.

 

Election Day today – Please Go Vote!

Go Vote!Election Day in the (sort of) United States of America.

At last. I can’t wait till this drawn-out process and media circus is over.

Good luck everyone – stay safe out there. Be true to yourself. Just be true.

And vote.

If you’re a USA citizen, you benefit tremendously from the amazing country we live in. Going to vote is a sign that you recognize the benefits and the risks of living in this amazing country of ours, and you’re willing to do your part.

Even if you don’t agree with everything the candidates stand for. Even if you would rather vote for someone else.

Go vote.

Write in the candidate of your choice, if you don’t like who’s on the ticket. But vote. It’s the responsible, adult thing to do. And countless Americans (and their families) have given their lives for your right to do so.

Don’t be a slacker. Don’t be a freeloader. Do your part.

Go vote.

Drink water, eat regularly, get exercise, rest

Soon...
Yes.

My sleeping has normalized, at last. After 3 days of vacation, I finally got to bed by 10:30, and I slept till 7:00. That’s progress.

I’ve been getting good exercise, getting out in the mornings to walk the beach or roam around town, and I’ve been able to nap… and relax.

Nice.

It’s really important for me to keep on a schedule. If I’m not, I can get tired. When I get tired, I get cranky. I’ve had to catch myself a number of times, yesterday, to keep from getting “snappy” with my spouse. I hate when I get short-tempered… especially when my spouse needs my help. I seem to get more short-tempered more quickly when they really need my help. That’s the worst time of all. I want to be patient and helpful, but my patience runs out when they are most in need.

That’s something I’m working on. It’s come up drastically in the past, and it weighs on me with the guilt. It was worse when I was first dealing with my TBI stuff and wasn’t getting any help, yet. My spouse had fallen and hurt their back, and I was so angry and confused and turned around, that I just walked up to them, yelled at them, and walked away in a rage. I couldn’t figure out how to handle the situation, and I left them lying by the road in pain.

I’m not proud of that. But I know now it was the TBI that made me do that. I would never do that myself by choice. And I think of that situation often, when they are truly in need of help with something, and I am feeling short with them. I don’t want to be like that ever again. The injury they sustained that day has worsened over time, and now they are nearly disabled by it at times.

I sometimes blame myself for that — especially because I didn’t help them in the following days and weeks and months… as their injury worsened and their back ache spread down their legs to their knees and the whole way to their ankles, but I couldn’t figure out what to do about it — and neither could they.

At least I got some help, when I did. If I had never gotten help, things would be even worse now, I’m sure. But it’s hard to face my own role in making this situation what it is. Fortunately, my spouse is getting physical therapy, but it’s been years since they could walk and move without pain.

Of course, they’re responsible, too, for much that happens in their life. They make unhealthy choices and resist common sense, so it’s not all on me. Still and all, I do feel a responsibility for this situation. And it’s incumbent upon me to manage myself properly, so I don’t pose a risk to them anymore.

I’ve had enough of that for one lifetime.

This vacation is about us being here together. Being a couple again. Being partners again. This is the first vacation we’ve had all to ourselves in a long time — for the past several years, they’ve always wanted friends to join us. But this year, no one can come, so it’s just us. And that’s fine with me. It’s easier for me to take – and it’s more of a vacation for me.

Drink water, eat regularly, get exercise, rest… and reset.

It’s important.

Yes, but I’m free

Not the life I always wanted

I woke up this morning with an image in my head — a horse tied to a cart, pulling it along. Kind of like this image:

It reminded me of the day I have ahead of me… pulling along the burdens of the company work for, together with all the other folks on my team who are hitched to their respective wagons of family and job and mortgage, and so forth.

It made me feel sad.

And I had a realization:

Even though I have had my share of troubles, even though I do not have a college degree or a “safety net” or a lot of security around me. I am free. I have never placed a huge premium on hitching up to anyone’s wagon, and in fact the expectations of others that I will hitch up to their plans and ideas and schemes (in return for money, respectability, and some measure of safety)… well, I’ve always seen through that. In exchange for money, I lose my freedom.

Kind of like today, when I have to go off to work instead of having time to sit quietly and go about my business.

And I realized — yet again — that I have made just about all my choices in life in order to preserve and protect my freedom — even if that meant I was going to expose myself to danger and not be part of the “gang” of compadres who were on the inside track to success.

So, as I prepare for my day, I’m thinking a lot about how I can really, truly be free. I have to work to make a living, and I have to trade my time and energy for the things that will keep me alive. But I have other things I can do, to keep my spirit alive, and I must remember to do those things.

Because, after all, I am free.

 

Two more days… two more days…

It's moving behind me
It’s all quickly moving behind me

Whew. I am exhausted. I have been exhausted all week. Last week, too. The weekend was good – but then, I didn’t have to be at work. That’s what’s been so tiring — wrapping up, trying to tie up loose ends, and realizing that the amount of work they gave me and the conditions they had me working under, are still going to keep me from completing everything to my satisfaction and standards.

Still.

Which is one of the big reasons why I’m leaving. Maybe the biggest reason of all. That career-killer job is fading into the past — and I feel like I’m out in the West, flying along in a late-model convertible under wide blue skies, racing alongside a miles-long train, the cars all stretching out behind me in my rear-view mirror.

It feels like I’ve been the engine at the front of that train, and to lay that burden down now, is such a sweet relief.

Two more days… two more days… till I am free and clear and don’t have to do that commute, don’t have to work in that space, don’t have to constantly struggle with being the only person who does what I do — which is a critical piece of things, in fact.

Only two more days till I can be free of these particular inexperienced managers, the surly coworkers, the constantly shifting priorities that have dominated my working life for nearly four years. It seems like an eternity. Not four years.

But I only have to deal with these folks and the conditions they create for two more days.

Of course, the next situation I go into will have its share of challenges and problems. For sure. But I don’t have to drive an hour each way to get to and from the madness. And it’s amazing what you can do with some extra sleep — and exercise.

I’ll have more time in the morning, so I’ll be able to add the exercise back in, a couple of days a week. I have been so slammed with doing e-v-e-r-y-t-h-i-n-g, that I haven’t had much room to breathe. Or exercise.

One of the other excellent things about my new workplace is that they are located in a huge, expansive corporate campus, which will give me room to move and breathe. I’ll be able to go out for a walk — and get somewhere. I’ll be able to get away from the office just by walking. No more claustrophobic feeling stuck and trapped.

Again, there are sure to be challenges and issues with the next situation. I’ll just have to roll with it. There are so many aspects of this new situation that suit me better, I can absorb the challenges along the way. No worries.

And I think about where my life can go, now. With extra time. With extra sleep. With extra movement. With a future. The company I’m leaving has absolutely nothing to offer me, that interests me. I’d have to do too much travel. I’d have to put up with too much crap. No way, no how, am I going to do that. It’s just not worth it to me. And too much competition. In my new spot, I’m there on a 2-3 year contract, so politically I’m out of the loop, and I don’t have to worry about who feels a certain way about me, and who doesn’t. I just show up, do my work, show results, and go home.

And get paid for the hours I work, without having the whole bonus thing hanging over my head.

It’s all good. It’s all very, very good.

So, now the challenge for me is keeping focused on the final things I need to sort out before I go. I have a lot that needs to get done, still, and the next 30 hours are going to be quite full. We don’t have a full day of work tomorrow, because of the long weekend, and I’ll be spending so much time saying good-bye to people, cleaning out my desk, etc., that I probably won’t get much done tomorrow, anyway.

So, I really just have one more day to get things together. A day and a few hours…

Unfortunate. But in anther 30 hours, that’s going to fall into the category of “Not My Problem”.

And that makes me very, very happy.

So, what do I need to do in the next 30 hours?

  • Write down the ways I do things and the urls for tools and sites I use, so others can have them to learn.
  • Make some videos of things I do, so people can watch how I do them.
  • Collect all the old emails that could be useful to me in the future, and forward them to myself.
  • Notify everyone I’ve been in touch with over the past five months that I’m leaving, and who they should contact in my stead.
  • Finalize some project plans that I’ve been working on.
  • List any outstanding items that need to be seen to.
  • Prepare my good-bye letter to everyone and collect all the names of people I need to communicate with.
  • Make a list of the all the people I want to stay in touch with (including folks who have already left), collect their personal information, and get in touch with them directly.
  • Do my regular breathing exercises to calm myself down and stay chilled out.
  • Stretch and maybe take a nap later today. No, scratch that – I just checked my calendar, and there will be no time for that.

I’ve got my hands full. But it’s all good. Today is one last push, where I’m totally focused on what is in front of me, and I’m doing my best to just hang in there while I can. After today… well, that’s it, really.

Then tomorrow at 1 p.m., it’s time to turn in my laptop, phone, badge, and say Adios, Amigas y Amigos!

At 1:15 p.m. tomorrow, it’s on to the next adventure, with three days of chilling out to do the things I love to do, and also prep for my new life. Do some laundry. Iron some shirts.

Which is much more like the old life I used to know, and loved so much.

Yes. It’s all good.

Two more days… two more days…

Onward.

Up early and moving on…

It’s a new day…

I’ve got two more days of work before my vacation. A real vacation. I’ve been sick and so has my spouse, so we are staying home and foregoing the Christmas-New Years journey this year. Doing all that driving does not do it for us. Not this year. At some point, you just have to say “enough” and do the most healthy thing, which is Just. Stay. Home.

In the midst of all the national debate on gun control, in the midst of the grief over those 20 kids and 6 teachers who were killed, in the midst of all the talk about how autistic/mentally ill kids need to be locked up, in the midst of it all, I come back to the fact that I really need to take care of myself in all this — and do the things that I know will keep me on solid ground:

  • Good food
  • Good rest
  • Good company and not a lot of “social filler”
  • Plenty of down/alone time
  • Good exercise

Good. Just good.

This is the holiday season. A time traditionally devoted to helping those less fortunate and celebrating the Light in our lives. Whether you’re celebrating the lengthening days, or a miracle of Light, or the birth of a carrier of Light, or traditions that enLighten your life, this is a time of reflection and renewal all over the world. Just biologically speaking, it is very much a time of renewal, as the days begin to lengthen again, and spring is literally just a handful of months away. It’s hard-wired into our systems. Our very bodies know, something is changing for the better.

In the midst of all… this, I do remember what matters most to me — staying centered and calm, even when things are going south. I had a bit of a meltdown the other night. I wasn’t feeling well, I’d been “off” all day, struggling with my balance and nausea, and I blew up over some little thing that needed to be done in the kitchen that wasn’t getting done.

I tried to avert it, but it escalated, and it felt like crap. I felt like crap. Everything felt like crap.

I went to bed early, and I woke up feeling a little better. Did the same thing last night, too — went to bed early… and woke up early this morning. I still feel a little “off”, but I am getting used to it, so it’s not so terrible right now. I have a doctor’s appointment tomorrow morning, so I’m hoping that will help. My ears seem to be better, but I want to get them checked. Now there’s more pain than lack of balance. And pain in my ears is never good.

I sometimes have a hard time detecting when I am in pain, so I sometimes let myself go longer than I should in reporting and addressing these issues. My doctor says I’m a “risk-taker”. I think I just have trouble figuring out how much my system is compromised. I am so accustomed to things being not-right with me — sensitive to sound and light and touch… headache, neck-ache, dizzy, foggy — I have learned to adjust and accommodate and not let it stop me from doing what I need to do. But when I’m genuinely sick, that old habit can get in my way. So,  I’ll have to have a talk with my doctor, when I see them tomorrow. I don’t want them to have the wrong idea that it’s a sign of mental issues or deliberate risk-taking behaviors. Seriously, we need to have that talk.

It’s not that I am consciously taking risks. I just don’t perceive risks the same way that others do. It’s just another bit of information my doctor should use to better understand me. And I need to find a way to communicate this to them, that doesn’t make me sound mentally deficient. They already wonder about me, thanks to the TBI info.

Anyway, it’s all a process… an unfolding and evolving process, which isn’t some cut-and-dried step-by-step thing. It’s a winding path through the woods that I have to continually walk, to keep it passable and keep the proverbial undergrowth from taking over. It’s about practice, about tending to the basics, keeping myself on track, day in and day out. It’s about never quitting and always looking for some sign of progress, to keep myself going.

And it’s about taking good care of myself, so I can keep on keepin’ on, so I have the strength and the resources to look for the good and act on it. It’s about not letting the world pull me down and pull me even more off-base than I am already… so that I can think clearly and interact with the rest of the world at my best.

I have a week and a half of vacation ahead of me — just around the corner. Time to relax and rest and unwind… to recharge the batteries and do the things I don’t have time for on in my normal life. Walk in the woods for hours. Read a book I’ve been wanting to read. Work around the house. Clear and clean out some things. Write about what matters to me most, as long as I like each day. Tend to my state of body and mind and spirit. And sleep. Long and deep and often.

There may never be an end to terrible things happening in the world, but that’s all the more reason to take good care… so that I can respond appropriately — if a response is indeed required.

Onward.