What we lose after TBI… and what we can get back

woman standing with a leaf in front of her faceI’m feeling really grateful, this morning. I’m tired, but I’m content. I’ll have my nap later, and everything will get even better.

I spent yesterday doing some of the things I love the most: cooking, eating, writing, reading, napping, and watching football while eating non-dairy ice cream… all with my partner, who has been really struggling with mobility issues, lately.

I bought us a collapsible massage table a couple of weeks ago, so we can both take turns stretching out and do horizontal exercises without having to get down on the floor. I set it up last night for my spouse to lie out flat (major plus) and do the exercises their physical therapist prescribed. The floor has gotten too cold to lie on, plus, it’s hard for them to get up and down without pulling something or hurting. So having the table is a huge benefit. Plus – bonus – I went to bed at a decent hour after a long day of lots of work

And by the end of the day, I realized just how good I have it. I realized that, after all the years of struggle, all the years of incredibly hard work, all the pain and frustrations and perseverance, all the dead-ends, all the plans to just give up, and battling all the despair… I have come through to another side, and I am in a place where I am good.

It’s taken years for me to get to this point. And it feels like this is the first time I’m really settled into this good-ness in a way that I actually believe. I’ve spent so much of my life confused and confounded, thwarted and hurting… without much of any clue about why that was, or what I could do about it… I had started to think that’s just how things were going to end up for me.

Permanent disablement. Permanent screwed-over-ness. And I just needed to get used to the experience and accept if for what it was.

But that feeling has completely changed, just in the last 24 hours. Things are not perfect, by any stretch of the imagination. There’s a lot of stuff that’s going really, really wrong in my life — and the world in general. And there are lot of unanswered questions in my mind. Still, I feel like I’m in a state of mind (and body — fitness is so important) that I can handle whatever comes my way.

No, my thought process is not perfect. I still get turned around and confused, and lately I’ve really been struggling with memory issues and misplacing things that I can’t afford to lose. I still have my intense lows, when I completely despair and lash out at the ones closest to me. I still have my moments of feeling useless and unlovable. I still struggle with crushing fatigue and not being able to do things that plenty of other people can.

And of course, I struggle with the fact that I can’t tell people about my issues, because it will work against me in the larger world. It’s not going to help me get a better job, if I tell the hiring manager that I function best if I have a 20-minute nap at the middle of each day. That’s not part of the deal in the 9-to-5 world I operate in.

But these are all things I’m convinced I can manage effectively on my own. I can handle it. Because I have a much better sense of who I am, and what I can expect from myself.

People have said that “you can’t recover from brain injury“, but that was decades ago, and we know a lot more about brain injury than we used to. Also, we know more about how concussion really is a brain injury… and so many people have them, yet continue to live their lives.

I myself notice that there are some things I just can’t do like I used to. It’s not as easy for me to push through marathon tasks. I need to stop and take a breath… do something completely different. And it’s harder for me to remember what I was doing before I took that break. I lose things. I get lost, too. I sometimes look around and have no idea where I am — but that’s more because I tend to be so focused on what’s in front of me, that I don’t notice my surroundings, so I don’t think it’s one of those “On Golden Pond” moments where I’m literally lost and have no idea where I am, period.

I’m more forgetful about things that really matter to me. My home office is pretty much of a wreck, but in a Thomas Edison “genius-y” kind of way, and my work area has spilled into the dining room that we rarely use. I have been misplacing important documents I just can’t afford to misplace… and then scrambling to replace them. I have a harder time initiating stuff I know I need to do (like go for a swim at the pool), because it feels way too complicated and involved. And try as I might, I really mess up things I’m positive I’m going to “nail”. I’ve been feeling really ambitious about making new meals while I’m on vacation this week, but my cooking skills have really degraded, thanks to the bone-crushing fatigue and difficulty sleeping. And coordination? Yah, forget it. Don’t leave anything near the edge of a surface. I’ll knock it onto the floor, for sure.

I know I’m not as sharp as I used to be. I know I’m not as sharp as I’d like — or intend — to be. I can be downright dull, and the bummer is, I’m aware. Oh, lord, how I’m aware. It’s not the most fun thing in the world.

And yet… I’m happier now, than I’ve probably ever been. And even with all my limitations and drawbacks, I’m definitely more functional, all across the board, than I’ve ever been. I’ve got “the whole package” together, at last. Even with the TBI after-effects, the slowness and slipping, the exhaustion and intermittent sense of defeat.

See, this regaining of competence and practical functionality is the real TBI recovery I wish people would talk about. Not getting your coordination and cognitive quickness back, watching your memory and endurance dwindle, having all kinds of intense emotional ups and downs… some experts might consider those blockers to TBI recovery. They might say it means that a person has lost too much and can never fully recover from a brain injury.

But everybody on the planet has something they struggle with, TBI or no.

And in any case, the real loss for me from TBI had far more to do with my Sense-Of-Self and my sense of “agency” in the world, than any objective physical or cognitive limitation.

TBI/concussion isn’t debilitating just because it knocks out your practical abilities. It’s most impactful because it takes a chunk out of your understanding of Who You Are and How You Handle Life.

It strips our self-confidence, and in doing so, it hits us hard with a self-doubt that’s a huge source of stress and ongoing trauma. What does stress and trauma do to the human system? It makes it harder to learn. And since TBI/concussion recovery is literally an exercise in re-learning to live, so your brain can rewire with reliable connections, that loss of self-confidence is in itself a source of ongoing injury.

TBI / concussion is an injury to the Self. And until people start accepting that and dealing with that piece of things — as well as finding practical, common-sense, science-based ways to address those issues — TBI and concussion survivors will continue to suffer from their injuries as well as the limitations of the people who intend to help them.

My road back from multiple mild TBIs has been a long one. It’s taken me 13 years to get to this point (and today is the 13th anniversary of my last concussion). It’s been a grueling and winding path. Fraught with perils. It nearly cost me everything I worked so hard to earn. But I can honestly say, I’m finally on the other side.

I understand my situation. I also understand the nature of my injuries, and how they affected me. But most important of all, I understand what I can do about it. And while I do tend to whine a bit here at times, the most important thing is for me to focus on the positives and share the lessons I’ve learned, so others don’t have to suffer as terribly as I did.

TBI and concussion are “recoverable”. We might not get back every single ability, and we may be left with lasting challenges, but we can restore our Sense-Of-Self, so we can get on with living our lives to the best of our developing abilities.

We’re made to heal. We’re made to grow. Regardless.

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And it just gets better…

Kim-Sutton-Positive-Productivity-Coffee-and-ComputerI’m having another great day, today.

I’m surprisingly productive on my days “off”, and I’m getting more done than I realize. Before I lay down for my nap, a couple of hours ago, I made a list of all the stuff I got done, and it was … a lot.

I’m not taxed, though, which is good. It just feels regular. Like I’m just living my life like I want to.

And I am.

One thing that happened earlier, was a phone interview for a job I’d applied for a couple of weeks back. I know I’d posted about how I really need to be realistic and not push myself intensely — especially with a long commute.  And it’s true. The thing is, the people I talked to and the job we discussed all sounded great. Of course they did. It was an interview, and everybody’s on their best behavior. But what came out of the conversation was actually a wider and more interesting kind of opportunity than they originally offered.

The scope of the job now encompasses things I’ve been doing for years, but they don’t apparently have anyone to do. Things like make their website go really, really fast. Things like put a new web metrics package in place. Things like train developers on best practices.

So, that was actually exciting. When I think about where I am now — boxed into a small corner of the world, without the opportunity to strengthen certain skills (which, by the way, are the ones that really pay well) — and I think about the future — more of the same that’s going to make me more and more specialized, more and more boxed-in — I have to seriously consider any and all alternatives.

Anyway, if my current employer really wanted to keep me, they’d pay me like they mean it. They haven’t done that. If anything, they’ve reneged on their promises and shorted me thousands of dollars.

That’s not cool. It’s not-cool enough to make me leave. They should know better. They do know better. But they won’t do better.

If I move, it will be an adjustment. A longer commute. A new bunch of people. Unpredictable politics. Having to start from scratch.

Then again, that’s what I’m dealing with right now. And that’s happening at an established job with a company that’s an “unknown quantity” at this point. Who knows what will happen with them? Nobody knows. All anybody has, anymore, is rumors.

Note how well I’m talking myself into changing jobs, when just a few days ago, I was in a much different frame of mind. I’m clever that way… But seriously, I have to weigh all the pros and cons of both situations. And I can’t say I’d mind being closer to home, especially during the winter months. I also won’t mind not being “threatened” with obligatory trips to India, which has never been something I wanted to do, but my boss has been hinting at. I can work effectively with people from India. I just can’t travel there comfortably. Just crossing the USA is disruptive enough for me, and exhausts me sufficiently to wreck my life for weeks at a time. But India?

No thank you.

Well, it’s all a trade-off. I’m fortunate that I’m in this situation, to begin with — in-demand in the midst of a very challenging job market. These are good problems to have. So, for that I’m grateful.

I think I’ll drink my afternoon coffee now.

And get back to enjoying my day. The obligations I thought I’d have this afternoon have magically dissipated into the ethers, so I have time to read and write and think — imagine that. And I’m OFF for the next four days, with just a few to-do items here and there.

Good heavens, it’s great to not have to do anything.

For once.

Regaining my Dignity at the end of “Most Excellent Day One”

zen stones in waterI just woke up from my nap. I lay down for 2 hours, and I could have slept for three or more.

It felt amazing. I need to make supper, now. Get back on track. But I feel so amazing, after just a little bit of sleep.

And I know there will be more where that came from.

Because I have the next week off. Actually, a week and a day. It’s amazing. Fantastic. Just what I needed.

And now I can regain my dignity.

See, it suffered for many months, while I was working on this Mammoth Project. I’ve been over-worked, (of course) under-paid, I have been doing the job of 5-6 people, and I haven’t gotten a lot of support from my boss throughout. Just criticism from afar. Or meddling from afar. Or what seemed like outright sabotage. I’m not sure what’s in it for them, to make me look like I don’t know what I’m doing, or to override me, but bottom line, they did more harm than good.

Anyway, the first phase of the project is over, and now I can look towards the next phase — about two months off — and leverage the foundation I’ve built with people, thus far.

And start living and acting like myself again.

Catch up on my sleep — and stop making mistakes because my brain is mis-firing.

Chill out my stress levels — and stop getting overwrought and yelling at people.

Find the good in what I’ve accomplished — and stop feeling so self-conscious and insufficient, because some things didn’t go 100% according to plan.

I can actually hold my head up again, after nearly a year of feeling trampled by other people’s successes. I can actually get my bearings again and stand firmly on both feet. And I can get past the dismay at my brain failing me, time and time again, under conditions that seem custom-made to trip it up.

I can get my dignity back to where I’d like it to be.

And that started today, on this Most Excellent Day One (of 9), as I got to not worry about The Project for a whole 24 hours.

I’m looking forward to the next 8 days.

That’s the understatement of the year.

Now, I can sleep

Christmas wrapping
The final push is on…

I’m giving myself an early Christmas present. I’m not going to make the Big Trip to see my extended family for Thanksgiving. I’ve been working long hours for weeks and weeks (months, really), and I feel like I’m on the verge of getting really sick.

My spouse isn’t all that keen on spending all that time in the car, either. And during the most heavily traveled time of the year.

It just doesn’t make sense for us.

Yes, it will be unfortunate that we can’t see our families.

But it’s a massive relief that we’re not making the trip. It’s exhausting in every sense of the word — to the point where it’s not really safe to be doing it. Traffic. Potential for accidents. Family frustrations. All of it is just too much to handle, right now.

What I really need is sleep. Like, an extra 100 hours, to make up for all the lost hours of the past weeks and months. I need to retrain my system to level out, to calm down… to get out of the sympathetic bias that’s just torn the living crap out of me. I’m shaky… nauseous… dizzy… unsteady on my feet… Yeah, I’m in no shape to do much of anything for a week.

And that’s what’s going to happen — not much of anything.

I have off work all next week and the following Monday. I don’t have to go back till Tuesday the 28th.

I won’t have to set an alarm. I won’t need to keep my phone by my bed. I can just lie down and sleep, without worrying about being late for things, or forgetting things, or saying stupid things, or messing things up. I can just be. And recover.

And that is a beautiful thing.

Onward… back to bed.

Maintain… maintain

files and papers stacked in two columns
This is pretty much how the last week felt for me.

I’ve had a really busy week.

After a week off.

A real contrast. Very extreme.

Ouch.

Literally.

Ouch.

But for all the busy-ness, I didn’t move as much as I should have — and normally do. I spent most of the past week sitting. Just sitting. In workshops. Not moving around, not stretching my legs, but sitting and listening and talking.

Ouch.

Just getting up and walking to the cafeteria was painful. It’s the worst of all worlds — being sedentary and having to concentrate really hard. Just doesn’t work with me. I can do it for a day, but three days in a row?

No thank you.

Now, my extremes continue, as I launch into a day full of errand-running and travel and helping my spouse with a fundraiser event. I’m just driving. Not “working” the event. I’ll have time to myself while the event is going on to do some fun things and also catch up with a friend I haven’t talked to in a while.

So, even though it’s busy, it’s all good.

The past week has really brought home, just how important it is for me to move regularly. On vacation, the week before that, I was in motion on a regular basis. Even though I was “off work”, I still had plenty to keep me busy — though in a good way. Buying groceries so I could make us nice brunches and sandwiches for the beach… arranging for special permits, so we could access different parts of the area and have a really great experience… getting out and about to see what was going on in the town… and exploring the beaches and hiking paths.

It was a very active “time off”, and it felt great. I didn’t get much done that was sedentary, like reading or blogging, but that was perfectly fine with me. It was a fair trade.

But now this past week… ugh. I was too busy to get in my regular exercise, I didn’t get enough restful sleep, I had appointments in the evenings that cut into my regular schedule, and I had to start early each day, so I didn’t get as many morning workouts as I needed. And my daily eating was off — I ate too much food, and it was the wrong kind.

Fatigue. Brain fog. Pain. Confusion. Irritability. Far less functionality than I normally have. And the constant nagging feeling that I’m missing something, I’m forgetting something, I should be doing something I haven’t yet thought of.

I’m glad that’s over.

Now I can get back to my regular routine. Get a decent night’s rest, each night, exercise each morning, eat the foods that work for me, move around during the day, stretch regularly, drink plenty of water, and get back to life as I’ve developed it.

There’s a reason I do what I do. And there’s a reason I keep doing it.

I’ve tried the other ways. They seriously just don’t work for me.

But I’m good, now.

I’m good.

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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.

 

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.