This is the story of my last three days. Snowstorm. Trees down. Wires down. Not much going on, other than winter. Storms. Electricity out. No heat, no running water, no television, not much connection with the rest of the world.
Living on battery power, using the mobile phone to contact the rest of the world. Staying close to the fireplace, keeping the fire going all night long, finding different ways to get meals and keep occupied. Waiting for the power to be restored. Hearing one thing, then another, then another.
Waiting, just waiting. Watching the snow fall. Moving it off the driveway. Off the roof. Off the back deck and stairs. Lots of snow. Half a meter’s worth. 18″ worth. Heavy, thick, packed snow.
And now I feel it. In my back, my legs, my arms, my shoulders. Bruises all over my legs, where I slammed against the snowblower. Cold. It was cold. And the all-over ache that comes after hours and hours of being tensed against the cold. Countless trips up and down the stairs to get more wood for the fire.
All in all, it wasn’t terrible, being out of power for two days. Longer than that, and it would have been a problem. We would have gone to a hotel, because my spouse can’t afford to get sick, and they’re more susceptible to cold than I am. We came this close to going to a hotel, then decided against it — the place we called said there were a lot of families checking in, because they lost power, too. And having a lot of kids running and screaming (’cause that’s what kids do, when they’re cooped up, let’s face it)… well, that wasn’t the most restful option.
Better to stay in our own space and try our best to stay warm and dry. Wait it out. Gather around the fire. Rest. Wrap ourselves in blankets and relax. Wait it out. Just wait.
And we did. Power was restored 3 hours sooner than they said it would be, and that was fine. In the bargain, I scored some major points at work for continuing on through with my work, despite having no electricity or heat or running water. I managed to logon to my work by connecting through my phone and then sitting in my running car to keep the power going to it, so I could complete some must-do tasks.
And now I have a reputation for being that much more of a can-do person, with total commitment to getting the job done. So, something useful came of it. Which is fine.
So it goes. I handled this storm considerably better than I handled others in the past. I kept my cool. I kept focused. I wasn’t a total jerk to my spouse. And I came out of it ahead of the game. I’m wiped out and would love to sleep for 12 hours, but I’m also keenly aware of how much good it did me to really move. And not spend all my time in front of a computer, like I’ve been doing for the last however many years.
It was good to have the enforced break. Away from the constant hum of machines, away from the low-level buzz of non-stop electricity. Listening to the wind. Getting out in the snow. Just living a very basic life, and being profoundly grateful for everything I have.
Now it’s time to go get some supper. The refrigerator isn’t smelling all that great. It stayed cold, but not cold enough. So, off I go to replenish it. And get something really good for dinner tonight. Something filling, substantial… and hot.
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.
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.
Now, I need to refile some other taxes which I messed up in years past. I figure, I’m still in tax-filing mode, so why not?
I messed up, years ago, thanks to a number of factors — not least of which was my TBI in 2004. I just wasn’t doing that great at handling complexity. Even with my tax prep software, just collecting everything together and organizing myself was a monumental task.
I managed to do it, but I did it wrong.
And that really messed with my head.
It messed with me so completely, that I missed the re-filing deadline last year, and I missed out on recouping thousands of dollars that I really needed. That’s on me – I should have reached out for help, but I didn’t. I guess my pride got the better of me on that one.
Anyway, now I’m busting my hump, trying to get myself into the frame of mind that will let me finally do these remaining taxes. Git ‘er done, you know? And considering how challenging it is for me, I can only imagine how challenging it is for others who are in much worse shape than I am.
And it occurs to me that the powers that be probably profit handsomely from our confusion. We pay too much, because we don’t understand how to navigate the hidden complexities that could give us an advantage. We don’t get the refunds we deserve, because everything is far too complicated for us to grasp, and we don’t always know where to turn for help. When we do manage to reach out for help, we’re still screwed, because we may not know how to talk to the person(s) who are helping us. We might not be able to communicate our situation, and so we don’t get the assistance we need.
This can apply to taxes, healthcare, and just about every other complicated thing in life. Especially where older and/or cognitively impaired folks are involved. Seeing what my spouse went through after their car accident, where they totaled our van and had to talk to all sorts of insurance folks and navigate the healthcare system, made it all the more clear to me just how disadvantaged people can be… simply because everything is so hugely complicated.
If you don’t think the way the people in charge think, you’re so out of luck. You’re on your own, really — this is America, after all. And unless you learn how to fend for yourself, you’re pretty much out of luck. On the one hand, this is great incentive for people who have that kind of orientation and are able to adapt and learn — or at least take a beating and keep on going to fight another day. But for people who are genuinely impaired and who need assistance… well, shit. You’re just out of luck.
Now, this is not to excuse people who just can’t be bothered to get up off their asses and make something of themselves. We all know people like that — who use every excuse to get themselves off the hook and not live up to their potential.
This is about recognizing that not everyone has the same skill level or capacity to think things through and navigate tricky situations, as the people who design the convoluted systems of our lives. It’s about recognizing that the way things are structured, these days, has become so specialized and so professionalized, that everyday people are being cut out of their own world. If you’re not professionally trained or you don’t have access to assistance from someone who knows (or can figure out) the whole system, you’re pretty much screwed.
Of course, there are plenty of people who will help — for a fee. There are also people who will help for free. But it’s not always easy to find them. And you may not know exactly what to ask or what you need help with, when find them.
All of which seems like a really cool way to “manage” society — split our culture into levels and classes, putting the people who organize things at the top, people who can figure things out in the middle, and people who can’t make sense of any of it, at the very bottom. I’ve been in all three classes, over the course of my life — as many of us are, in a variety of ways — and scraping the bottom of the barrel is no fun at all.
The thing I can’t help but keep coming back to, is the idea of how much money the federal government makes off us, how much power they hold, and how much they do, simply because they’ve created a system that’s far too complicated for any average, normal person to get their head around. If everyone understood how the tax code works and had the wherewithal to get every penny back that they are owed, how different would things be?
I don’t know the answer to that. Maybe it wouldn’t be that different from how things are now. Some people are naturally inclined to amass power and abuse their position. And those people tend to gravitate towards powerful positions. Even if we did get rid of the god-awful tax code and went to a flat tax for all (which I strongly support, by the way), there would still be people who would seek out positions of power and control in other ways. Maybe having a convoluted tax code serves as an outlet for people who absolutely crave the experience of screwing everyone over, and it keeps them from branching out into other areas, thus sparing us their sickness of mind and spirit in other more obnoxious ways.
In any case, the whole system is a screwed-up mess in more ways than any of us knows. For me, rather than tilting at the windmills of social injustice, I’m fending for myself. For many, many years when I was younger, I was bound and determined to change the overall system. That got me nowhere.
Now I’m focused on building up my own skills and becoming as self-sufficient and independent as humanly possible. The things that would give me an advantage in the world — namely, a college degree and social connections to people who can be of assistance to me — are pretty much out of reach. I doubt I’ll ever have the time or money to go back to school and put in two years of academic work required to get a degree. And fatigue and exhaustion are such major factors with me, that I am absolutely done by the end of each day. And I spend my weekends just getting back up to normal speed. So, I don’t have the energy for socializing and getting into the circles of people who can help me get ahead.
Even if I could do all that, I’m not sure I’d want to. I think those ships have sailed for me, and I’ve gotten so accustomed to making my own way, it suits me now. I don’t want to be in the midst of a corrupt and corrupting system. I need to be on the outside, making my own way IN my own way. It works for me. And from what I see of the people around me, it works better for me, than it does for them.
Anyway, I’ve got a full day ahead of me, so I’ll sign off now. With any luck, by the end of today, I’ll have a prior year’s taxes refiled and I’ll be able to check that off my list.
Now that Christmas and Hanukkah and Winter Solstice have all passed, it’s time to start looking ahead to the New Year. Kwanzaa is still underway till January 1, and the Seven Principles that mark this time give me good food for thought, even though I don’t actually celebrate it formally. Yuletide is also underway till January 1 (or the 13th, depending what part of the world you live in), allowing everything to just slow down for time to reflect and look ahead to the new year.
I’m celebrating the spirit of Yuletide more than any other holiday this season. It’s been a quiet time, without a lot of travel, and minimal racing around to take care of presents and what-not. If anything, I’ve been pretty neglectful of others, this holiday season. But you know what? They’ve been totally neglectful of me, too, so we’re even. If anything, the past years have been about me and my spouse doing a hell of a lot more for them than they did for us — doing more travel, making more of an effort, going out of our way to keep everyone aligned and on track with coordinating our holiday activities. This year, we haven’t done all that — and guess what… nobody picked up the slack. So there you go — they must not care that much, so… what-ever.
It’s time to us to take care of ourselves for once.
And we’ve done just that. I’ve been in a pretty low-key frame of mind since before Christmas — all the excitement of work notwithstanding — so, it’s been a very “Yule-like” time. Things have slowed down. I’ve allowed them to slow down. I’ve taken time OFF from all the sense of obligation and duty and required activities, to just rest and relax and notrace around like a chicken with my head cut off, as I did in prior years. I’ve done energizing things that are good for me, and I’ve been eating lots of new foods that support me and my brain, as well. I’ve cooked up some pretty excellent dishes lately, if I say so myself, and my spouse says I’m becoming quite the chef 🙂
Looking back on the past year, it’s odd — I can remember bits and pieces of it, but I don’t get an overall sense of how the year was. I know it’s been challenging, and I’ve been actively looking for a new job for much of that time — especially in the past three months. At home, things have stabilized somewhat — with less undercurrents of stress and strain, but some extreme meltdowns that have taken a toll on my marriage. I’ve been through a lot of intense challenges with my spouse, including issues with money and infidelity and physically unhealthy choices. All in all, though, I think we’re on the up-swing, and taking time out from all the travel to see family, as well as me getting my own “house” in order, has benefited us a great deal.
I feel stronger and more stable than I have in a long time. Perhaps ever. And yet, there’s a constant sense of confusion and disorientation that is always in the background. I am more functional than I can remember being in a good long while, and the circumstances of my life are leveling out and becoming more “structurally sound”, but at the same time, I’m in a fair amount of general pain much of the time, I have tremors and shakes, and my brain is definitely not firing on all pistons. I feel like I’m maybe at 65% on a regular basis. 85% if I’m lucky.
And that makes me sad.
But I think perhaps I am acclimating to the instability. I’ve decided I’m going to just get on with my life, even though I can’t seem to get rid of the memory problems, the sleep difficulties, the constant sense of fatigue, confusion, distractability, getting things turned around, and getting lost and not knowing where I am for a few minutes at a time… and more.
My solution is to just keep going and not get sidetracked and depressed by what’s going on inside my head. If I can just keep going, keep working at things, and do my best to learn from my lessons and try again, this all doesn’t need to hold me back permanently. It might slow me down, but it’s not going to stop me.
I’m also coming to terms with the idea of not being Alpha in every situation at work — and beyond. At work, I have been long accustomed to being Alpha and being in a leadership position of some kind. But now that things are shifting and changing at work, I’m not sure if this is going to last. There are so many people at work who are a hell of a lot more possessed by the demons of blind ambition and greed, and I just can’t see competing with them around the clock. There’s all sorts of politicking — and if it takes politicking to get ahead, then I’m going to step back and not engage with that, and allow myself to simply be happy in the position where I am.
Now, I don’t for a minute expect that I’ll stay in that subordinate position for long, if I get the attention of the right people who recognize what I’ve got to offer. I do want to get ahead. I need a raise. I need a promotion. I need to really put what I know and have learned into action. But I need to be smart about it and not just charge forward into the gap, without understanding what’s ahead of me. If a promotion means I’m going to have to travel all over the world and not be home more than two weeks out of every month, then I’ll pass. There is that possibility. But who can say? Who can say…
Anyway, I can’t invest too much time and effort in thinking about what may be… inventing all sorts of dramatic stories about what that will mean for me. Who knows whatwill happen? I need to conserve my energy, because I continue to have some limiting difficulties — the headaches and the joint pain which suck a lot of energy from me… the confusion and disorientation that keep me guessing and demand even more energy from me to keep up and do my part… the vertigo and tinnitus that are just so damned distracting… and the attentional and distraction issues that interrupt what I’m doing with a regular dose of screw-ups.
I need to keep going, and in order to do that, I need to take good care of myself and also practice things that will keep me sharp and make me sharper, while not using up a lot of time.
Ride the exercise bike or move and stretch, first thing in the morning to get my blood pumping and clear out some of the sludge that’s built up. (10 minutes a day)
Practicing juggling one thing at a time, tossing it into the air, and then catching it. I do this with my toothbrush each morning, to improve my eye-hand coordination and also my focus and attention. (1-2 minutes a day)
Working on my balance and leg mobility with exercises on a daily basis. (5 minutes a day)
Doing my measured breathing that regulates my heart rate and keeps me calm. (5-10 minutes a day)
Allowing myself to really, truly relax on a regular basis — just letting myself collapse into bed or on the couch, and letting the fatigue just wash over me. (The first few minutes when I go to bed)
Increase my dopamine levels by eating more foods with L-Tyrosine and also taking the supplement… and also taking Oil of Oregano, to keep my body from breaking down the dopamine and seratonin in my system. (In the regular course of my day.)
Drinking plenty of water to flush out the sludge.
Studying anatomy and physiology, to help me better understand the inner workings of my physical life — and how to improve my health.
All these things are really good for me — and I can work them into my daily routine. The biggest challenge is figuring out how to do them as a regular part of my life, without up-ending my routine. That is totally do-able, because I can find time when my breakfast is cooking, and I’d just be sitting around anyway. I just need to do it. And I need to not just take things for granted, because I’ve been doing them a while and it feels like I don’t need to do them anymore.
That’s probably the biggest threat to my well-being in the new year — getting complacent and just assuming that “I’m good” and I don’t need to keep up my routines and activities. That state of “good” can rapidly decline, as I’ve learned time and time again.
So, as I look forward to the new year, I’m thinking about the basics. Focusing on that, and not making myself crazy with a whole lot of dramatic schemes and Big Plans, like I have in the past. I’m settling in, in a way, and it feels pretty good. I just can’t get complacent. Gotta keep working at it. Each day.
Well, speaking of working at things, I need to get a move on and get my ass in gear. I have some errands I need to run before everything closes for the day.