I’ve been feeling a bit down, lately. Dragging. Drab. In pain. I’ve been having some tightness around my ribcage that really hurts when I laugh. I can’t remember doing anything to myself – – no recent injury. Just maybe sleeping on it wrong.
I’ve been feeling down, too. Just a low-level depression. The Catch-22 situation with my neuropsych — if I really go into great detail about how much help I need, then I get bumped down in the proverbial pecking order and end up stigmatized (and potentially looking at higher insurance rates, on down the line, if the current health coverage changes go through). But if I don’t enumerate all the different ways I need support, I can’t ask for it. Literally, it’s Catch-22.
I think I’ll read that book again. I think I read it years ago, and I need to read it again.
I really have to take matters into my own hand, in this regard. I’m not disabled enough to require outside help to function at a basic level. That can be arranged. I have the means to do that, and I have books and information at my disposal to expand my understanding about what’s going on. I need to just do that. Take matters into my own hands, and reach out to others for help with clarification.
I’ve signed up for some free online courses about the brain. I need to stagger then, so I’m only taking one at a time. I think I’m going to use those online courses — and access to the instructors — as a professional reference point. I’m not actually getting the kind of assistance I want from the NP I’m working with now, so I’ll branch out and cover myself in other ways.
As for my day-to-day, I need to get myself back on track. I haven’t been exercising as much as I should. I’ve been locked on target with some projects I’m working on — as frustrating as it is, my work situation is keeping me busy — and I’ve been sitting too much, moving too little. I have all-day workshops today and tomorrow, which I can easily do, just sitting down all day.
That’s no good. I need to get up and move on a regular basis. I have a lot of energy, and if I don’t move, that energy tends to “back up” like a lot of traffic trying to cram its way through a narrow space.
That can be fixed, though. I exercised more today than I have been, lately, and now I actually feel better. It’s amazing, how much a bit of movement will do — especially lifting weights. Even if they’re not very heavy, still, the motion and the resistance is good for me.
I’m also working from home today, so I can walk around the house while I’m on the phone. That’s the magic of a mobile phone — it’s mobile. Tomorrow, I can walk around, too. I just need to listen in, so I can walk around the building while I’m listening. It’s not hard. I just need to do it.
And so I will.
I’m feeling better better today about my future prospects than I have been, lately. I got plenty of sleep, last night (almost 9 hours), I did a full set of exercises, I had a good breakfast, and I’ve got a path forward charted for moving forward.
I believe I can trust myself, and that I have the ability to see where I’m falling short. I trust that I can research and reach out for ideas to address issues that arise. The main thing is really to keep on top of things. Take responsibility for myself. Do what I know I need to do. And just keep moving on.
The world’s a big place with a lot of different options. I just need to make the most of the opportunities I have, keep focused on my end goals, look for opportunities, and keep moving forward.
Will the world step up and help me with my problems? Not if I don’t ask.
Do I need other people to help me at every turn? Sometimes yes. Sometimes no. The main thing is that I help myself, using what assistance I’ve gotten from others and the resources I have on hand.
I’m in a very fortunate situation, where I have the ability and the available resources (time, energy, attention, interest — even if money’s missing) to take care of myself. So, I’ll do that.
A new chapter is on the way, and I’m actually looking forward to what’s to come.
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.
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.
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.
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.
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.
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 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.
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.
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.
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 isa 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.
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.
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.
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…
I can be really miserable to live with, when I wake up after a nap. Especially if I’ve slept more than 30 minutes. Resetting my system to regular life after being “down” is difficult.
A tired brain is an agitated brain, and that’s certainly true for me. Ever since my mTBI in 2004, I’ve been much more prone to anger when I’m tired. It’s neurological. And it’s not much fun.
Yesterday, I was pretty tired. And I was pretty agitated last evening. Cranky. Fighting over every little thing. Grousing and grumbling and having trouble with basic communication. Yelling was my default mode, last evening.
And we were supposed to be on vacation… My spouse and I had a 5-day vacation planned at a waterfront resort about 3 hours from our place. We’d planned on leaving at noon on Thursday, getting there around 3:00… unpack the car, go grab an early supper, and watch sunset over the water. Then we’d turn in, and have the next four days to chill out.
Well, none of that actually happened. My spouse couldn’t get up till noon — too tired. Okay… I adjusted. It did give me time to catch up on my own chores, packing, preparations. The three-hour drive turned into a 5-hour meander through the countryside, which was actually really nice. The weather was gorgeous, and we stopped at a little scenic spot where we relaxed and napped. So, I got about 30 minutes of sleep, which was great. I didn’t even realize how tired I was, till I put the seat back in the car and closed my eyes.
When we woke up, we drove to the resort town, stopping along the way to get some hot soup, which was delicious. It was getting late, so we skipped going to the condo and went right to the beach, where we watched an amazingly beautiful sunset that lasted for an hour, with the amazing afterglow.
Then we drove around some more, exploring the surrounding countryside in the dark. That might sound strange, but we love to do that. There are woody areas where wildlife comes out — we’ve seen foxes, coyotes, bats, raccoons, opossums in those woods, and we always like seeing what happens. We actually did see two big coyotes — one of them ran out in front of the car, but I braked in time. Whatever they’ve been eating, they’ve been well-nourished, that’s for sure.
We picked up some groceries at the local supermarket, then went on to our condo. The management folks just left the door open and a key on the dining room table. I parked in temporary parking and commenced hauling our 12 bags up the flight of stairs to the upstairs unit. We’d packed 5 clothing bags, 2 bags of books and laptop, 4 bags of food we brought, and one bag of beach shoes. That wasn’t counting the clothes on hangers or the beach supplies — we like to travel comfortably, and we also like to have our own food, so there’s always a lot to carry in.
My spouse was moving slowly, since they’ve got limited mobility, so I had everything in the unit before they got into the condo.
When they got inside, however, something was amiss. There was a strong chemical smell — and in fact, there was a sign out front announcing work being done by painters — interior and exterior. My spouse started to have a really bad allergic reaction, sneezing and coughing and throat closing up. It was really bad. We opened all the windows and got some fans running, but after an hour of that, it was clear that we weren’t going to be able to stay the night — or the whole long weekend.
So much for vacation.
There was no way we could stay. I was also starting to get a sick, throbbing headache, which wasn’t good. If a migraine gets hold of me, that’s pretty much the end of me, for days to come. Neither of us could chance it. So, I hauled our 12 bags back down to the car, we closed up the place, and came home.
We got home around 2:00 a.m., which wasn’t bad, actually. And I got in bed by 2:30. I slept till around 8, so that was better than some nights, lately. I’ve been having trouble sleeping, so actually, Thursday night was kind of par for the course.
Except Friday I woke up even more exhausted than usual. Doing all that driving — about 8 hours, give or take — and packing and caretaking and attending and adjusting… it just took it out of me, and 5.5 hours of sleep didn’t patch things up. I had a little 1.5 hour nap in the afternoon, but again, that didn’t do much for me.
So, by Friday night, I was pretty agitated. I was off my regular schedule, which is always a challenge — even if it’s for doing fun things. And I was tired. And my spouse was upset about having to leave. I personally didn’t care about leaving. Vacations with them are never, ever relaxing. It’s one request after another, constantly helping them with… everything. Their mobility has gotten worse and worse, and their thinking is not great. They have not taken good care of themself, mentally, emotionally, or physically, and after years of neglect, it’s all coming to a head.
The whole experience is pretty crushing, actually. Watching someone you love with all your heart decline… and being helpless to stop the downward slide… that’s not my favorite thing. At all. There’s so much they could be doing, so much that we’ve discussed them doing, so much they intended to do, but can’t seem to do by themself… it just doesn’t get done. And they get worse and worse off, as time goes on. I have no idea how much longer this is going to go on, but when it’s all over, I doubt I’ll have any interest in re-marrying. It’s just one long slog for me, and I need a break.
But so it goes, sometimes. I’m not the first person to watch their beloved decline before their very eyes. But it still takes a lot out of me.
And that was probably one of the things that got to me so much yesterday. I was tired, yes. I was agitated, yes. And I was also heartbroken that my spouse can’t keep up. Through the results of their own choices, their own actions. It’s crushing to see that — and realize that you probably care about your beloved more than they care about themself.
But like I said, that’s how it goes, sometimes. I’ve had friends whose spouses completely bailed on taking care of themselves, too, and I’ve watched them either get divorced or just fade away. I’m in the latter category. I’m not getting divorced — I don’t have the heart to do that, just bail on my ailing spouse. I’m just going to watch all this slowly fade away.
And take care of myself in the process. Because I still have a lotof life in me, and I’m not about to let someone else’s choices bring me down. We all have choices to make, we all have ways we can help ourselves. I can’t always help others — even the person closest to me — but I can certainly help myself.