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.

 

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.

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.

Morning fog… morning agitation

village in valley with fog and sunrise
Today I’m feeling foggy, like this village – but less pretty (Photo credit: Sebastian Unrau)

One of the most bothersome parts of TBI is the irritability that comes when I’m foggy and tired. Like today. And last night.

I have had a really long and full week. I wasn’t expecting it to be as challenging as it has been — a lot of people have been out of the office at a conference, so it’s been quiet. Kind of.

Lots of stuff has “blown up”, though. And that hasn’t been good. I’m taking it personally, when projects don’t go as planned, even though there are whole teams of people not bothering to pay attention, these days.

So, that’s been exciting. And tiring.

Meanwhile, at home, things have been wearing, as well. I don’t get a break, when I get home. It’s more work. Everything feels like work.

Of course, if I can get some extra rest, it’s fine. But that hasn’t been happening. If anything, I’ve had earlier days than usual, lately, and that’s been taking a toll, as well.

The toll is angry outbursts.

Getting more tweaked about things that don’t normally bother me.

Blowing things out of proportion.

And then feeling terrible about myself, because I couldn’t keep my cool.

So, I’ll try again today. Take a nap later.

And keep going.

Onward.

Retrieving my past, making peace with my present

footprint in sand with wave coming near
We all leave our own individual tracks

I’ve been on a bit of an emotional “tear”, lately. I hate when this happens, but now that spring is (finally) here and people are coming out of hibernation, I’m interacting with more people these days, than I have in a long time.

I’m also in contact with my parents more, which is a fairly complex undertaking, at times.

And it brings up all kinds of “old stuff”, which is a pain in the neck. Things like my parents’ disappointment in how I turned out, compared to my other siblings. I went my own way in the world — partly because I wanted to, partly because I repeatedly failed at doing things the way they were expected — and they’ve never quite made peace with it.

Case in point: I never graduated from college. I went for 4 years, and I did pretty well while I was there. But my exciting life (including trouble with the law and a series of mild TBIs from car accidents) got the better of me, and I couldn’t organize myself well enough to finish. My parents never quite forgave me for that, even though I’ve been extremely successful in my chosen profession, I’ve done a fantastic job of providing for my household, and I’m a valued member of my community.

Just the other week, after all these years, my father was giving me a hard time for not finishing school. As though that’s the only measure of my worth or ability to perform.

I know he’s not in the minority in that. The whole world seems to think that a college degree confers brilliance upon its owner — or at least basic competency. And if you don’t have that degree, you’re considered less-than. I get that all the time, when I’m job-hunting. And I’m wondering how long till the rope runs out on me, and I can’t actually GET a job, because I have no degree. It could happen. I just hope it doesn’t happen anytime soon. I have plenty more life to live, before I have to give it all up because I can’t get a job that pays more than minimum wage.

And that really cuts into my self-esteem. Being able to provide for my household is one of the biggest aspects of my self-image, and when I was struggling with holding down a job, it was brutal. It’s not optional for me, and I’ll go to any lengths, do just about any job, in order to keep our standard of living where I believe it should be. So, I’ve done what’s necessary. I’ve acquired skills, worked my ass off, really plowed through every conceivable obstacle to get where I am, today.

And I’ve done all this with a history of multiple mild TBIs that seemed to cut me down at every turn, when I was growing up, and then again when I was an adult and at critical turning points in my life.

Funny, how that works. Not ha-ha funny, but ironic. Weirdly ironic. Just when I’m about to turn a corner and really kick it into high gear… I get into a car accident, I fall down some stairs, I hit my head. Something.

Of course, looking back, it makes sense to me, now. Those times when I was about to turn a corner, I was so focused on turning that corner, that I failed to notice the hazards in my life. I can get extremely focused on My Main Goal, to the point where I block everything else out, and I go on auto-pilot. So, I can’t blame the world for my misfortunes. I’ve played a role in many of them.

But still, I do get a little tired of being lectured about not living up to my potential. I know I haven’t done that as well as I want, and it really burns. It aches. It tears me up inside. And there’s nothing I can do about the past.

But I have my present — which is really just a pale shadow of what I wished it would become, once upon a time. If I hadn’t gotten hurt regularly, when I was younger — a fresh concussion every other year or so, sometimes two of them within a few months of each other — I might have had more of a fighting chance. But what’s done is done.

And now I need to focus on the positives and keep myself moving forward, using everything I’ve lost, every hardship I’ve experienced, for the good.

Because, to be honest, this motivates me. All the missed opportunities, the screw-ups, the failures… they motivate me. Because I don’t want to do them again. I need to get back on the horse and try again. I need to keep going, keep moving forward in my life, keep looking for ways to contribute. I may not be in the top-flight leadership position I always expected to be in, oneday, but I can do my part in the place where I am right here, right now.

And there are advantages that I have, thanks to my concussion history. I have the advantage of knowing how capable I am at recovering. I have the advantage of knowing how concussion works, how it affects you, and what you can do to overcome it. I have the advantage of on-the-ground, hands-on life experience with TBI recovery, which is a far sight more than a lot of rehab professionals have. I have an insider’s view, and I’m able to articulate that to others who may need to hear about these things.

So, my experience is good for something.

And I have to wonder if maybe my distance from the standard-issue path to social acceptability and respect may actually work in my favor. Because I haven’t been in the mainstream as a fully-vested participant (I do a great impression of somebody with skin in that game, but I honestly don’t have the energy to play a leading role), my thought patterns haven’t been overtaken by the status quo. I’m always the outsider, in so many things, and that gives me a creative edge, as well as a motivational edge.

Because popularity and success and public acclaim haven’t been lavished on me, I haven’t been corrupted by those influences. And that’s a plus. Especially when it comes to talking about things as eclectic and as misunderstood as mild TBI. I have no investment in sticking with a party line, and I have no use for the usual platitudes and prejudices that seem to run the world.

All in all, I think I have plenty to be proud of. And when I look at my past and present through the lens of appreciating what all I’ve had to overcome (which my parents and most people will never begin to understand), it really eases the burn of all the disapproval, all the lectures, all the marginalization.

I have my life. And I’ve got a lot to be thankful for. I can never lose sight of that.

Looking back – what I’ve lost, what I’ve gained, what I’m giving back

surfers coming out of the end of a tube
We can do this

A little over a year ago, the neuropsych I’d been working with since 2008 changed jobs and relocated. It was a pretty big change for me. This was the person who’d agreed to work with me, when everyone else around me said there was nothing wrong with me, and I was just looking for attention. This individual saw something in me that they knew was in desperate need of help, and they were in a position to help me. That was rare.

Nobody, but nobody else, believed me, when I tried to tell them how much I was struggling. They didn’t seem to care that I’d lost a really good job and that I was bouncing around from one situation to another (they seemed to think I should just be grateful that I could work at all).

Nobody seemed to care that I’d parted ways with hundreds of thousands of dollars in hard-earned performance stock options and retirement savings (they seemed to think I was being greedy to want that much money).

Heck, I’m not sure anybody even believed me when I told them how much money I’d gotten, thanks to busting my ass for years and years at one of the top financial services companies on the planet. They looked at me, in my post-TBI state, and they drew very different conclusions.

Nobody seemed to realize just how rocky my marriage had become. Even I didn’t realize that. I couldn’t detect any great love for my spouse, for years at a time. I was married because, well, that’s what I was. But I harbored no great affection for this person I’d lived with for nearly 20 years, and when my neuropsych asked me if I loved them, I just shrugged and said, “I guess so.”

Nobody seemed to believe me at all, when I talked about how my skill level was a fraction of what it once was. I used to be an incredibly gifted programmer, and if you have money in a retirement account, you’re probably using websites I personally helped design and build. (You’re welcome.) The people I worked with all knew that. I was a legend in their midst. A folk hero. A thought leader — a leader, period. But nobody outside my very narrow professional sphere actually got that. They didn’t realize. Because they weren’t smart or experienced or in-the-know enough to actually get it. Nothing against them. They just didn’t get it. At all.

My neuropsych did, however. I mean, for the most part. I think they were pretty skeptical when I’d was eloquent about all the amazing things I used to be able to do. And they never seemed that sympathetic, when I bemoaned the loss of those former “chops”.  But we had a pretty good working rapport, overall, and I’d made some fantastic progress, thanks to being able to check in with them, each week. I developed my own ways of rehabbing my brain — and my life. I kicked ass, to be honest. And in 40 years of working in TBI rehab, they said they’d never seen a recovery as dramatic as mine.

They had fairly low expectations of me, when I started working with them. But they didn’t know me, yet. And they had no idea what all I was capable of doing. They found out. And when they moved on, it was a loss for them to not witness my recovery, week after week. I’m not being conceited. It’s an objective fact.

It was a personal loss for me when they moved on, as well, because I’d become fond of this individual. Even though they were a “healthcare provider” in a specific role and they billed me for their services, the relationship felt more like a mentoring arrangement, than a rehab situation. I was working on aspects of my life that were well beyond the scope of basic TBI recovery, anyway, and the areas of my life that I addressed — all of which were severely impacted by my concussion(s) — were hardly the kinds of things you’d list for insurance purposes.

I was fixing my marriage. I was fixing my career. I was fixing my sleeping and eating and exercise patterns. I was fixing my self-image. I was fixing my Sense-Of-Self, and all that it affected — which is/was everything. I was fixing my life. I’m not sure what they indicated on the insurance billing forms, but I’m sure most of what we worked on wouldn’t have “flown”.

Anyway, life goes on. Things change. People switch jobs and move away.  This is not news. And that’s what happened with me. It was a bit of a jolt, to start working with a new neuropsych each week — someone with a very different perspective on life, not to mention about 30 years less professional experience than my old neuropsych. This new one is very good to work with. But they’re different. And we’ve had our own bumps and hurdles along the way.

One thing I notice, however, is that this new neuropsych is a lot less discouraging around Type A activities. My old neuropsych spent an awful lot of time trying to convince me to get off my Alpha “high horse” and chill out. That did help me, because I was stressing myself out terribly over things, when I should have been allowing myself to rest and recuperate from my Daily Push. At the same time, it also held me back. Because to be perfectly honest, I do best when I’m at the top of my game. Losing access to that peak aspect of myself was a pretty devastating loss to me. And having someone tell me, “Oh, that shouldn’t matter to you as much as it does,” was frustrating, irritating, confounding. Just not helpful at all.

But this new neuropsych is a bit Type A, themself — a “gleeful Alpha”, as I call them — someone who’s happiest when they are at the top of their game, very motivated, very driven, very oriented towards Excellence In All Things. Their approach is much more high-energy. From the moment I step in their office, I have to be on my toes. I have to be sharp. I have to respond quickly. I have to push myself. I can’t sit back and chill out, like with the last one. This one is much more demanding, and while it was a pretty tough transition for me, at the start, after a year, I realize that their working style is really what I wanted from my old neuropsych — but never got, much to my former chagrin and dismay.

Now it’s a totally different game with me. And I realize, looking back on the past year, that I’ve actually jumped ahead in my functionality in some significant ways. I’ve improved at work. I’ve improved at life. I’m better at holding conversations. I’m better at socializing. I’m better at keeping myself focused and on-point. And I’m actually functioning at a level far better than any I functioned at before my accident in 2004.

That’s pretty amazing, if you think about it. Because I’ve had no less than nine different mild TBIs / concussions in the course of my life, and the cumulative effects (both in my brain function and attitude) really took a significant toll on me. That last accident in 2004, when I fell down those stairs and hit my head a bunch of times on the way down… the difference I eventually felt in myself was like night and day, compared to how I’d been before.

Now, though, I’m actually back to where I want to be. Sure, there are areas in my life where I’m not nearly as sharp as I used to be. I have a heckuva time handling programming logic, these days. But in other ways, I’ve built up skills that I never had before. I’ve learned new things about myself and developed additional competencies that I might never have bothered to develop, had I never gotten hurt and lost so many of the things I used to take for granted.

That’s pretty amazing to me. And it’s counter-intuitive, according to the standard-issue brain injury rehab “party line”. When you injure your brain, you’re not supposed to fully recover. Not really. And you’re certainly not supposed to recover to a point that’s actually more advanced than you were, prior to your accident. Oh, sure, sometimes people become geniuses after they get clunked on the head. They develop skills in math or art or some other area. But in terms of everyday functioning, those basic, often boring aspects of life that get all scrambled up after TBI? Nah, that’s not expected to be restored.

We’re supposed to settle for a “new normal” of a diminished life. Broken relationships. Broken marriages. Lower standards of living. Less career development. Less money. Less influence. Less power over our lives and self-determination.

Huh. How ’bout that…

I, for one, have no interest in living that way. And I’ve had to really work my ass off, over the past 10+ years, to get to a place where I am actually happy with the direction my life is headed. It’s not enough for me to be content with how things are. I need to be happy with where things are headed. And this new neuropsych has given me a nice break from the “chill out – just be glad you’re alive” kind of approach my old neuropsych tried to instill in me, week after week, for all those years.

They never completely succeeded in that mission, I have to say. And good thing. I’ve never been able to let go of my desire to get back to the functioning level I was at, before. And now that I’m feeling even more “back”, than I ever have, I look ahead of me and wonder about what’s next.

What is next? Well, another blog. One devoted to Peak Performance Concussion Recovery. To the high-performing, Type A, peak experience folks who get clunked on the head and watch their lives fall apart… as the medical establishment fails to help them, and people around them fail to understand the nature and extent of the impact of a “simple” blow to the head.

Concussion is not simple, no matter what people say. And brain injury (because concussion is a brain injury) is not a simple, straight-forward path you can follow, with 7-10 days of rest, followed by 8-12 weeks of rehab, whereupon you’re expected to get back to normal life, at the level you used to be at.

Concussion isn’t always straightforward, especially for people who are accustomed to operating at levels far above the median. And the expectations people have for recovery tend to be dismally low.

So, I’m doing something about that. I’ve kept this blog to chart my own recovery, my struggles and challenges and wins, along the way. It’s been a personal journey. And it hasn’t always been pretty. Now it’s time to “bump it up” a little bit, and focus on the high performance aspects of my life. Because I always had them, and I continue to have them. Even after multiple concussions over the course of my life. I’m unabashedly Type A, and I know from personal experience, how devastating it can be to lose the capability to be Type A — to be who you are, what you are, and why you are.

I also know from personal experience how to Get Back. I’ve worked my ass off, for the past 10+ years, and I’ve actually achieved what I set out to do. There were days when I gave up on the idea of ever having the kind of life I wanted. There were days when I just had to accept that things weren’t feeling or working better for me, and it felt like it was always going to be that way.

But after years and years of heartache, blood, sweat, tears, grinding it out, day after day, balancing all the lessons learned, I feel like I’ve really come out on the other end, like a surfer thrust through the windy end of the tubular curl they’ve just passed through.

I’m back to performing. I’m back to being better every day. If I can do it, so can others. And my new blog is about speaking exactly to people who, like me, are totally committed to living the best life possible after TBI / concussion.

High performers come in all different shapes and sizes. Don’t get me wrong. You can be a peak performer as a stay-at-home spouse or parent. You can be can be a peak performer as an entrepreneur, an athlete, an artist, or a corporate ladder-climber… or whatever other direction you take in your life. The point we all have in common is that we’re determined to work on ourselves and be the best we can be, no matter what… to use the lessons that life throws at us to learn and grow and make our lives into something greater than they were, just last week.

I’ll still be blogging here as a personal practice. But there’s a real need to focus on high-performance concussion recovery. And so I’ll be doing that, now and in the future.

Onward.

To be truly grateful… for everything

fresh food, grains, fruits, vegetables, meat
Life has provided me a full range of experiences — food for the soul

I’ve been thinking a lot about how my life has shaped up, over the years. I spent some time with my family, this past week, seeing some of my siblings I haven’t seen in quite some time – more than a year, in fact. We exchange emails, yes. We talk on the phone. We hear about each other from other family members.

But we don’t spend a lot of time in the same space.

This past week, I got that opportunity. And it was both frustrating and really good.

The frustrating part was feeling constantly judged and pushed to the side, because I don’t have a college degree, and I haven’t read all the books my parents have read. They’re very academically oriented, and they have read a ton of books. Their house is full of books – everywhere you look, in every single room, there are books. Bookshelves. Stacks of books that have no place to store them, or that are in the midst of being read.

A lot of those books I wouldn’t read, even if I had the time and the interest. I couldn’t sustain the attention with most of them, because they come from a very narrow point of view that my family holds. It’s a combination of politics and community activism and a whole lot of religion. Their world view is very much constrained by the world they live in — a close-knit community of like-minded individuals. They don’t have a lot of voluntary interaction with people not like them. At least, not beyond a superficial level. They do spend time with people different from them, and they interact with them a fair amount. But they don’t seem to be shaped much by those interactions, other than to reinforce their own philosophies and belief system. They’re very tightly connected with others like them, and they keep the rest of the diverse world at arm’s length.

Always.

That’s something I cannot relate to. At all.

See, I’ve always been drawn to “the outside world” — seeking out people different from myself, who have interests and perspectives totally different from my own. I’ve actively sought out strangers my entire life, immersing myself in foreign cultures of social groups which have been (and still are) at sharp odds with what my family believes and their overall value system(s). I’ve immersed myself in diversity in ways that they haven’t. And it’s certainly shaped me.

Most certainly.

Anyway, as challenging as it was, being around my family, it makes me truly grateful for the life I have now. I’ve had to overcome a mountain of issues, which nobody (including my family) can see clearly, because it’s inside my head. They don’t see how my “wires” have been “re-routed” from multiple blows to the head over the course of my life. And they don’t see how hard I’ve had to work to get where I am. They have criticisms of me, galore, because of my failings. But they don’t see the invisible challenges I face, each and every day, so they can’t appreciate how hard I have to work, as well as how far I’ve come.

I can see it, though. I know all the difficulties I’ve had, and I understand what it’s taken me to get where I am today. I know how much it’s demanded of me, how much it’s required of me, how much I’ve had to sacrifice along the way, not only to keep myself moving forward, but also keeping myself safe.

It seems like every time I was getting on my feet and getting back to a baseline I could work from, I got hurt again. Or I had to deal with fallout from past mTBIs. Or things would get so crazy that I couldn’t keep it together. And so, I never moved forward.

I never finished college, because I ran out of money, and I also got into trouble with the law, thanks to my impulse issues and difficulty understanding what people were saying to me.

I also always had a household to support, so I didn’t have a lot of time left for myself, never mind the energy it would have taken to work and go to school. Yah, that wasn’t happening.

I’m in the life I lead now, doing work that I’d rather not be doing, because it’s the one sure way I can support my household. Well, it’s mostly sure — the job market is tricky, right now, and there are rolling layoffs happening at work. But I make better money at this, than at what I’d rather be doing — some sort of manual labor that gives me something to show for my work at the end of the day.

My family doesn’t see how much it bothers me, to be in my situation, because I don’t let on. I’m too proud to let it show. Plus, what’s the point in telling everyone how unhappy I am? There’s no point. I’m where I am in life as a result of unfortunate accidents, poor choices, and a fair amount of luck.

If they don’t get that, well, that’s on them. Not me.

Overall, I’ve got a good life. I really cannot complain. My choices and actions have put me here. Even if some of the dumb luck has set me back, it’s shaped me into the person I am, given me the opportunities I got, and it’s built me into someone I would respect, if I met them on the street.

So, even if it all has been really hard, it’s been well worth the effort.

And so, I’m grateful. For everything. Even the bad things that set me back. I can’t imagine where I’d be, if I hadn’t been forced to develop the skills I have now.

That wouldn’t be a good use of time. So, as ever… ON-ward…