Where privilege, power, money, and influence fall off

1923 broken down car with wheel off
Sometimes, a wheel just comes off – I just wish I hadn’t “driven the car” longer than I had to

So, my life is morphing, and that’s okay. It’s good, actually. It’s a long time coming — a wake-up call, reminding me where I really fit in the grand scheme of things, and prompting me to “buck up” and take matters into my own hands.

Not be dependent on a system that’s inherently hostile to me, by design.

Take responsibility for my own situation, and do everything I can to advance my own cause, as well as support others who need similar help. That’s what this blog is all about — putting my own personal quest / journey out there, in hopes that others might just benefit from it as well.

Brain injury is woefully misunderstood. Brain injury rehab resources are irregular and over-hyped and work differently for many different kinds of people. Plus, they can be expensive and/or inaccessible to folks who aren’t rolling in money. So, this blog is intended to fill certain gaps that exist in the world — by design.

It’s been said several times by people on this blog (who have a history of involvement in the brain injury rehab field), that brain injury can be a “cash cow industry” that’s seen its share of fraud and exploitation. I can totally see how that can be — you’ve got patients who are impaired to various degrees (some of them severely), who can’t advocate for themselves. You’ve got friends and family and loved ones who know precious little about brain injury, what to expect, how to handle it, etc. And you’ve got an insurance infrastructure that will pay for some things, but not for others. Considering how vulnerable brain injury survivors are, it’s the perfect industry to get into, if you have no morals or ethics… or fear of burning in eternal hellfire and brimstone.

Even if you’re a good person with the best of intentions, keeping to the straight and narrow must be awfully difficult in that industry. My first neuropsych (NP) bucked the system for years, providing services to me at a discounted rate and submitting insurance claims with the billing codes that worked. The later NP apparently never mastered that skill. Either that, or they didn’t actually want to. They said they spent a lot of time fighting with the insurance companies, but it seems to me they didn’t explore every conceivable loophole available.

I just can’t get free of the belief that, if they’d wanted to find a way to help me at a sustainable level, they could have found it. Find a way or make a way. The fact that they didn’t, and then they charged me more to make up the difference… maybe that’s standard practice in the NP field, but that won’t fly with me.

So, the long and short of it is that here I am, on the business end of the rehab cattle prod — like so many others, removed from regular support because it’s overpriced, and I’m not paying market prices. Assigning market prices to services to vulnerable people seems… odd to me, anyway. Hell, having healthcare be market-driven strikes me as a complete departure from the way healthcare should be handled, anyway. Hospitals were often started by religious groups, and the concept of healthcare was expanded in the Roman Empire after Christianity became the official religion. So, there’s historically been a religious/spiritual element to healthcare.

Historically, that is. Over the past 50 years, perhaps because of the decline in religious fervor, it’s become more of a commodity. And healthcare, in my opinion, can be about the most predatory kind of market I can think of.

I mean, who makes their money off vulnerable people who have nowhere else to turn? Seriously… who does that?

Well, anyway, that’s pretty much how the world works, these days. Of course, there are healthcare providers who will step outside the standard-issue money-making paradigm and act as true healers. But those people can be few and far between. And I think it must be easy for young clinicians to fall into the dominant mindset of charging as much as possible for services rendered. Treating healthcare like a provider-consumer arrangement, where everybody is expected to be a “good consumer”.

That logic makes no sense to me at all. A few years ago, I wrote a post I am a shitty healthcare consumer, and it still holds true. I will never, ever be comfortable with the paradigm that reduces everyone in the healthcare equation to providers and consumers, as though sick and vulnerable people are actually in decent enough shape to “fulfill their role” and the power dynamics, privilege, and influence were equal.

That’s what that dynamic seems to expect — that doctors and patients are on equal footing. But we’re not. Not even close. They have the power, the knowledge, the influence, the ability to commit us against our will or prescribe treatments that no one else can. They hold the power over our lives and deaths, at times. They hold the proverbial keys to access to information and resources (diagnosis, meds and rehab, for example), which only they can wield in the public arena.

So, expecting patients to be “good consumers” is a stretch. It’s a stretch invented by people who don’t seem anywhere near aware of the inequities of power, influence, control, and knowledge. With great power comes great responsibility. Somewhere, things are falling down.

In my case, it fell down big-time.

My most recent NP knows:

  • I am the sole provider for my household
  • I have a dependent spouse who is unable to work regularly and is becoming increasingly disabled
  • I am being paid 20% less than originally promised, because my employer got acquired, and the new overlords don’t feel like paying out the bonuses I earned (which were included as part of my overall compensation)
  • I have specific challenges which make my day-to-day more difficult than they “should” be for someone with my base level of intelligence
  • I have no other reliable source of day-to-day support
  • Other people who try to help me, don’t have the level of expertise to understand the nature of my difficulties, so they mistake my neurological problems for psychological ones and try to treat me for that
  • I have to leave work early and drive a couple of extra hours each Monday to get to my sessions (which is a real hardship for me at times)
  • I have almost no retirement savings, thanks to the organizational problems after my mTBI in 2004
  • I have many house repairs to make, which will drain what savings I’ve managed to put aside, over the past 3 years. By the time the essential repairs are made, I will have no “safety net” left.

None of these issues are a problem for the NP. They are married to a fully employed spouse, they are on staff at one of the top hospitals in the nation. They teach at a big-ass university that’s one of the top schools on the planet. They have two offices in the same medical building. They live within a few miles of their office. They have the time and the money to take two weeks off to take their family to Paris and other points around the world. They have a PhD, and they present at professional conferences, as well as offer public education sessions. They’re in “thick” with some of the leaders in their field, being trained by some of the top docs. They’ve got a full roster of patients — a waiting list, in fact. And they’ve gotten rid of all their former clients who were on the type of insurance I have, because the insurance company won’t pay them their rate.

So, basically, they’re set.

And I would think, comparing their situation to mine, that they’d at least be able to cut me some slack. If I were in their shoes, I’d make an exception, because it can be done. One client out of tens doesn’t pay full price… big whoop. The difference is easily made up. I know, because I myself have been in many situations where I ran events where some people could pay full price, while others had to get a break. That’s just how things work in the world where I live — some have more money to contribute, while others have less money but other talents to add. You work a deal with people. You make the most of what they have, and if money isn’t one of those things, you find another way for them to contribute.

In this world, inequity abounds. What we do with our privilege and power says a lot about us as human beings. And if you apply the same measures indiscriminately across the board, expecting everyone to operate on your level and chip in the exact same amount of money as the next person, that’s not just unrealistic and unfair, to my mind, it’s unethical. It’s kind of shitty, actually.

So, yeah, I’m not bothering with that NP anymore. I’ve already deleted their contact details from my phone.

Maybe they meant to be shitty, maybe they didn’t. Maybe they’re just overwhelmed by their responsibilities.  Whatever. I don’t know what goes on the hearts and minds of others. But I do know that in the patient-doc dynamic, they were the one with the power, and they chose to use their power to disenfranchise me.

Screw that.

Screw them.

I’m just sorry I didn’t see this sooner.

I could have saved myself a lot of money, if I’d just moved on without giving them the benefit of the doubt.

Whatever.

Onward.

 

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

stacks of 100 dollar bills

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

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

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

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

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

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

Nope. Not gonna happen.

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

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

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

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

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

Onward.

The things I need to know, to move forward

two rock climbers on climbing wall

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

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

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

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

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

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

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

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

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

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

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

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

Then I can get started.

Moving up.

Onward.

Upward.

Taking a closer look – again

picture of person with a light swich on the side of their head and a hand reaching down to turn on the switchSo, I’ve been on this TBI recovery quest for about 10 years, and I’ve had some amazing results. The last neuropsych I worked with marveled at my progress. In 40 years, they had not seen anything like my recovery.

Well, of course not. They’d never worked with me.

The thing is, in all those years, I rarely had a very clear view of exactly what I was doing with that individual each week. Or why. I had my own ideas, of course, but I wasn’t fully aware, I wasn’t fully “online”, and I didn’t have the full capacity to really wrap my head around what all was happening, and why it mattered.

I just showed up each week (sometimes twice a week) and did what seemed appropriate.

Now things are much more stable with me, I’ve got a much better understanding of myself and “how I work”. I also have a good hindsight into what worked for me, and what didn’t.

So, it’s time to start digging in again… see what’s there.

My current neuropsych (NP) has decided to not drop me because of insurance. They actually seem to understand that there’s value in it for me, and I think there’s value in it for them. I suspect that my old NP had a talk with them (they keep in touch), and talked them out of dropping me. Either that, or they just didn’t give it a whole lot of thought before they made that decision.

Either way, we’re going to be working together for the foreseeable future – at least till the end of the year, anyway. And a big part of what we’re going to do, is study my past NP evaluations, to more fully understand what it is/was that I’ve been dealing with. It’s all been a little hazy to me, over the years, despite being so intent on learning more about my situation and working through it. I suppose there’s always opportunity to learn and grow – and I often don’t fully grasp what’s going on with me until years after the fact.

Well, it’s years after the fact. And I’ve got a much better understanding of what the deal is with me, how things are put together, how it affects me, and what I can do with that knowledge to make my life even better.

One of the big areas of focus with me is on my strengths. What do I have going for me, that I can use to offset the difficulties? What are the unique talents I bring to the table, that I can put to good use for myself and others?

This isn’t just about figuring out what’s wrong with me, so I can sit around and feel badly about myself. It’s about finding my relative weaknesses and then matching them up with my strengths, to do something useful with myself.

And take things to the next level.

This isn’t going to be easy, by any stretch, but it’s important work.

And it’s time to do it.

Onward.

Moving on

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

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

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

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

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

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

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

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

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

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

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

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

And having some good support in place.

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

It’s all a process, anyway.

Onward.

 

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

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

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

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

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

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

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

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

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

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

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

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

I have a couple of choices:

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

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

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

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

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

A nice long weekend – a chance to reset

duckling chasing a cat on a roomba
You just gotta keep going till you’ve covered all the bases

It’s Saturday. I get another chance to get myself straightened out, today. This week has been pretty demanding. I’ve got a lot going on at work, and unfortunately, a lot of the people I’m dealing with in other offices don’t actually respond to you unless you “get heavy” with them. I hate that. I hate having to throw a fit, threaten then, cc my (and their) boss, and push them to do what they should be doing from the start, anyway.

A lot of the people I’m dealing with are much younger than I. They’re young enough to be my children (which is a very strange thought, to be honest). And they’re often from the other side of the world. For some reason, they seem to think they know what they’re doing. They don’t. They still have a steep learning curve ahead of them, and they don’t seem to understand just how much I — and others at my level — really know. We’ve already been through their learning curve, and we’ve learned from experience… for 15-20 years more than they.

But do they listen? Do they respect me, and others like me? Apparently not. They love to lecture me about “how things are” and “what’s expected”. Oh my God. I just don’t have time for their strangely supercilious attitude. And — God help me — I have to resort to threats to get them to pay attention, when all I want is for them to work collegially with me and do their damn’ jobs. All I want is to work with people who act like peers, who respect others, who are focused on doing the right thing — not the politically expedient thing.

I know, I know… I’m being unreasonable again.

Well, anyway, it’s Saturday and I have the whole weekend to reset — even more than that, because it’s the Fourth of July next Tuesday, and a whole lot of people will be taking Monday off. So, I effectively have a 4-day weekend (where I only use 3 of those days). I look forward to Monday, actually, to get some things done. To think. To strategize. To get my head together and think about things in deliberate the ways that work best for me.

I’m looking forward to having some time to read and think, for 3 of those 4 days. I’ve been so busy at work and with other projects, I haven’t had time to zero in on my TBI work, lately. That’s been the case for over a year now. When my old neuropsych moved away, I lost a valuable connection that kept me focused on my TBI recovery in some really productive ways. Losing that weekly presence in my life was a significant loss. We do keep in touch as friends (not in a rehab context), but it’s not the same. I need to see if I can incorporate more TBI stuff into our conversations. It’s tricky, though. Not sure how best to do that…

Anyway, for some reason, life feels like it’s opened up for me. I feel less pressure, for some reason. Maybe because I’ve decided for certain that I’m not staying in this current job past the end of the year. That helps. Seeing an end to all this foolishness… it gives me hope. I’ve made peace with it. I’ve done my 2 years of duty here. It’s time to move on. It’s been time to move on… but skipping out on a job before 2 years are up, is generally not seen as a good thing. At the end of this month, I’ll be at the 2-year mark, so that’s my virtual starting line. Then I can start really pursuing other opportunities. And in the meantime, I can still do my work — and enjoy it as best I can.

This past week, I actually applied for a job that someone approached me about. It looked perfect for me in terms of responsibilities and money, and I applied for it. But I never heard back from anyone, so I guess it’s not going to happen. I may “ping” them next week, just to see what’s going on. Maybe they already found someone.

Well, whatever. There are no perfect jobs, and maybe that one would have been a pain in the a$$. I may never know. Just keep moving along. Just keep moving along.

It’s Saturday. The first day of a long weekend (even with that single day in there). It’s a chance to reset my sense of things, to settle in to do some actual thinking about stuff. I’ve been in reaction mode all week, and that’s a real drain.

Time to think. And get some stuff done on my own, rather than wrangling with other people and their issues.

It’s pretty awesome when that happens. And it’s happening now.

Onward.

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Whoah – I was NOT expecting this

Namibia Desert
It feels like I’m slogging through a desert, sometimes. But there’s an oasis in the distance… I think.

Back when I fell in 2004, I was positive it wasn’t going to bother me.

So I hit the back of my head on those stairs. So what?

So I was having trouble sleeping, and I had “anger issues”. What did that have to do with anything?

Well, I found out.

Over the course of months (and years), I progressively lost my capacity to perform at the level I’d been at before. I couldn’t interact effectively with people at work. I couldn’t understand what they were saying, and I couldn’t make myself understood. I couldn’t hold my attention on anything for more than a few minutes. I couldn’t learn the things I needed to learn — and my job as a programmer was really all about learning.

I was crazy-impulsive, and I couldn’t seem to keep anything straight in my head. I bounced from job to job, progressively becoming less and less able to function, increasingly unable to even conceptualize how to program.

All the things I’d done almost for 15 years were suddenly a big-ass mystery to me, and I was lost… lost I tell you.

So, I changed direction. I moved into different types of work. Less programming. More project oversight. Project management. More people, less machines.

And it was fine for a while. It was actually really good for me. For four years, I worked with an international group of team members all across the globe, coordinating their work on most of the continents. I did all kinds of conference calls, trainings, projects, you name it. If people were involved, I did it. And there was less and less actual programming involved.

I did some things on my own, and some of what I did was pretty cool. But my thought process was convoluted, and looking at the code now, I’m surprised any of it actually ran. It ran, but I also ran out of steam before I could refine and finish my concepts. It was demoralizing, too. Because I’d get so tired — mentally tired — with all the work. I couldn’t keep going on the things I used to love the most. And I couldn’t seem to keep up on my skills.

That persisted for a number of years. I tried to get back into the programming world about 5 years back, but when I interviewed and people saw how I coded, they actually laughed at me. I was a has-been. Washed up. I couldn’t hold my head up. I could only scurry back to my corner and stay in my non-programming domain.

Lately, however, something has changed. It’s shifted. It’s actually taken a dramatic turn for the better. And all of a sudden, programming makes sense to me. Stuff that used to confuse and frustrate me… it doesn’t anymore. I find I can actually concentrate for extended periods of time, which is key and critical for this kind of work. I don’t lose my temper as quickly, I don’t give up as quickly. I can keep going, keep analyzing, keep working at problems I need to solve. And that’s a huge change for me.

It’s a change I was not expecting.

At all.

I had pretty much given up, to be honest. I had abandoned the idea of ever being able to seriously program again. Making up my own personal projects, where I able to move at my own pace, was one thing. Being an industrial-strength developer again, where I could crank out professional-grade code… that was something very different.

Now, though, I find myself more and more able to handle the extended process of deep thought and learning that was once so much a part of my daily life. I find myself more and more able to keep calm in the face of adversity and think rationally through sticky quandaries that used to stump and frustrate me. It’s a very different feel — a very different situation — a qualitatively different sense, compared to where I was, just a few years ago.

So, yeah — life after TBI does change. It improves. It shifts. It has plenty of surprises. Not everyone has the same experience, of course. Some people recover much more quickly than I have. Others not as quickly. Some never get back to where they want to be, while others may hardly notice a difference in their lives after head trauma. It’s always different from person to person. But every now and then, commonalities appear.

And that’s what we have to focus on – our commonalities, so we can learn from each other.

Problems after TBI are rife and rampant. We have tons of them, in fact.

We just have to keep going, to get to the other side — whatever “side” that may be for us.

And the weekend is right around the corner. Now I can get some things done.

blue sky over the prairie
Just keep going…

I hate being really busy. Some people love it. I hate it. I find it confusing and irritating and counter-productive. “Don’t think, just react,” seems to be the battle cry of the modern world, but if you think about … how far has that gotten us?

I think we could do with more thinking and less reacting. Living life like it’s not a game being played for fun and profit, but simply — yes, simply — doing the best you can with what you have.

Things have been cooking… I’ve talked to two recruiters in the past week about potential jobs. Neither of the two prospects was a good fit, and that helped me clarify more how I want to move forward. I’ve been wanting to “hole up” and dig into a future in cutting-edge data. You know, just block out the rest of the world and live my life with data.

But as much as I would like to dive into a sexy new field, I’m not sure I really want to be chasing after that. I’m not up on all the latest technology, and people are looking for pretty intense qualifications. I could get those qualifications, but it’s more trouble than feels worth it. Plus, it’s not good for me to huddle off in a corner by myself and never have contact with other people. I really need interaction. If I work from home more than 1 day in a row, I start to get irritable and irrational. Interacting with people — not just numbers — keeps me sane.

Rather than trying to rekindle the glory of my past (when I could spend hours and days and weeks on end all by myself, wrangling with code), I now want to focus on more social types of work — more interactive, more socially stimulating. I work well with techie people. Geeks. Nerds. Subject matter experts. I love trading knowledge and trivia tidbits. And they get along with me pretty well, I have to say. Because we’re “of a kind”.

And at this point in my life, I need to stick with what I’m best at and develop from there, not cast about, looking for the next greatest thing. The tech scene is totally different, today, than it was 20 years ago. I should know. I helped build it, 20 years ago.

Anyway, these are just some things on my mind. Work has been extremely busy, lately, and nobody knows what’s happening… if we’re going to have jobs in another few months. There are rumblings in the rumor mill (of course there are, when aren’t there?) In the midst of it all, I’m extremely busy with my work — so much so, that I haven’t had as much time as usual for my own interests. Like this blog.

I have a handful of other irons in the fire, and I’ve been working on them. But everything feels rushed and cramped, and I hate that feeling.

Busy. Too busy.

What I actually realize about myself is that I push myself to busy-ness when I get tired. And I’ve been getting more and more tired over the past weeks. So, I have added more stuff to my plate, which is not helpful.

It’s unsustainable.

So, I’ve been getting more sleep, lately. And I’ve been thinking more strategically. Not just diving in with “tactics”, but stepping back and figuring out how I can do what I want to do in a more clever, more manageable (and sustainable) way.

Lo and behold, I got some ideas.

Some of it has to do with having a longer timeline for some projects — not having to have them done right away, but giving them time to percolate, so I don’t sink a ton of time and energy into things that aren’t actually good ideas, to begin with.

Some of it is about keeping things simple. Just narrowing my focus and concentrating on a select set of a handful of projects, instead of casting far and wide and spreading myself too thin. I forget just how scattered I can get, how my brain gets going around developing side-interests, off-shoots of concepts and ideas and interests. When I get tired, I’m even more susceptible to that tendency. And I’ve been tired.

So, how to avoid this in the future? I’ve gone ’round the barn on a handful of boondoggles, over the past weeks, and I need to not have that happen again. I’m doing what’s necessary to keep myself on track now, and I need to keep that up.

The weekend is coming. I can get a whole lot done, when I’m focused and concentrating on what’s in front of me, instead of letting my brain get scattered and run in every conceivable direction.

Less is more, sometimes. And I’ve got a lot to do. So, it’s time to do less. And get more done.

Yes! The weekend. I have a feeling this is going to be good.

The day after that inevitable sleepless night

sleeping chameleon
I’m feeling a little out-of-it today.

So, my sleep has been going really well, lately. I’ve been getting anywhere between 7.25 and 8.5 hours a night, regularly, which is great.

Last night was not one of those nights. I tossed and turned, couldn’t get comfortable, had a lot of aches and pains, couldn’t turn my head off… you know the drill. And all the while, my head is thinking, “Dude, you need to turn yourself off. Now.

Easier said than done. I think I got maybe 5 hours…? If I was lucky. And now I’m feeling out of it, foggy, irritable. Not the way I want to feel, first thing on Monday morning.

Every now and then I have a night like that. Sometimes, it can’t be helped. Of course, my schedule was way off — I changed things up in a big way, yesterday, and went for an afternoon swim with my spouse. We’ve been meaning to get to the really excellent saltwater pool of a hotel about 20 minutes from home. They have a great fitness center, too, and they’re less expensive than a lot of fitness centers I’ve been to. Plus, they have “adult time” blocked off for adults who just need to do laps. Or sit in the hot tub.

My spouse has some pretty significant mobility issues, and they need to get in a pool and move — take the gravity pressure off — as well as sit in the hot tub for a few minutes to ease the back pain.

So, we actually got our sh*t together and headed up the road shortly after noon. Got there in good time. Signed in, changed, and headed for the pool. We took our time, obviously, because of the mobility business. But before long, we were in the water.

Unfortunately, the guests weren’t honoring the “adult time” block — there were a bunch of screaming kids in the water, splashing around and generally being kids. That made it a little challenging to just chill out and do exercises/laps. Eventually, the kids left, so I could do some laps and my spouse could do their water exercises in peace. Then the hot tub… just sitting in the water and soaking felt fantastic.

I also got to spend some time in the sauna. They have one of those, too, which is a huge bonus for me — I’ve been wanting to get in the sauna for years, but haven’t had access — more on that later.  I didn’t stay in too long (that’s not healthy — 10 minutes tops is recommended). But I did get a bit of heat, which is so important. Especially on cold rainy days like yesterday.

So, I got in a swim on the weekend, which is huge for me. And I can do it again, anytime I like. I got a sauna. I didn’t get on the weight machines, but I can do that some other time. They have good machines. A whole range. I look forward to using them.

And my spouse got their workout in, which is borderline epic. They’ve been saying they’d do it for months and months. And now it’s happened. And that’s a very, very good thing.

When we got home, I was wiped out. Just spent. I needed to sleep, in any case, and then the workout pushed me even further. So, I got a nap, when we got home. I slept for 2 and a half hours… then lay in bed for another 15 minutes. By the time I was up and around, it was late. I had to make supper. Then we watched the latest Jason Bourne movie. And that cranked me up. Then I got in trouble for putting my spouse’s delicates in the dryer (I put them on low, which is basically just tossing them around in a cool breeze, which I thought was fine). And it looked like I’d ruined one of their favorite tops… until we read the label, and it turned out I’d actually done exactly what they told me to do…

So, there was lateness.

And excitement.

And arguing.

And a bit of door-slamming on my part.

And then a little bit of humor, when my spouse came to find me and show me that the top was completely ruined.

It was a full day.

And I didn’t get enough sleep, last night.

But that’ll happen, now and then.

The important thing is, yesterday was a really, really good day, and we/I accomplished a helluva lot that needed to get done.

It’s Monday. Time to bring it.

Onward.