When more stuff falls apart

1923 broken down car with wheel off
Sometimes, a wheel just comes off

I’m back.

But you probably didn’t notice, because I’ve been only intermittently blogging here for the past months – maybe a year or so? Life got… interesting. Work has been a drain and a challenge. There are multiple illnesses in my family. And I need to help out.

So, I help out.

I’ve got a disabled sibling with a child who’s in and out of the hospital. I haven’t done a good job, at all, of keeping in touch and offering support. I’ve been trying to do more of that, lately, but it really takes a toll. And now that sibling’s partner is having health issues, as well. So, that’s yet more of a drama scene.

And now my parents are having problems. Serious, possible-surgery problems. I spent the past 4.5 days with them, helping them get sorted out with doctors, getting their paperwork together, talking them through their options, and talking to a friend who is helping a lot. It’s a whirlwind with them. My parents are high-energy, always-on-the-go types, who live a very active lifestyle with lots of friends and activities. It’s exhausting just talking to them, let along living with them for a few days.

But mission accomplished (for now). We got all their paperwork taken care of, got them set up with the medical portal so they can connect with doctors and see their test results, hooked them up with a new smartphone, so they can have a GPS, and also look things up when they need to. And just reassured them that I and my spouse will be there for them when they need us. They’re a 7-hour drive away, so it’s not exactly close by. And my spouse is having a lot of mobility issues, which slows everything down.

I slow things down, too. The fatigue is just crushing, at times, and when I  push myself, I can get cranky and perseverative. I’ll start to grouse and get stuck on a single angry thought and just hammer that proverbial nail, till the board around it splinters. We had a couple of instances where I lost it over what was really nothing much, got turned around and confused, took wrong turns, got combative… mainly because I was bone-tired and worried about my folks.

On the way down, we added 1/2 an hour to our trip, because I got turned around and missed my last exit. My spouse was talking to me about a number of different things that had nothing to do with the drive, and it distracted and annoyed me, at just the time when I was trying to figure out where I needed to turn. I was tired, which makes my brain work worse, and it was dark, which didn’t help. We were also in a part of the country that’s changed a lot in the past years — and we hadn’t been in that area for over two years, so I was even more disoriented. I missed my exit, couldn’t see where to go next, and my spouse was getting really upset at me for not offering anything constructive to the conversation — which had nothing to do with driving.

I appreciate the vote of confidence, that I can do more than one really critical thing at a time, but I wasn’t in any shape to do anything other than drive the car and get to my parents’ place, so as for conversation… yeah, it wasn’t happening.

We ended up having a blow-out fight over it, which often happens whenever we make that trip to see my parents. There’s a magic point around 7.5 hours of driving, when both of us hit our limit, and any discussion we have turns into a lot of yelling.

Fortunately, we did manage to get over it before too long, and we did get to my parents’ place 9 hours after we left the house. At least we were safe, which was the whole point. And we had a good 4.5 days ahead of us to just chill out and focus on my parents.

On the way back, I got turned around again. I was tired from the trip, and I was confused about pretty much everything. I hate when that happens. It’s a little difficult to maintain your dignity, when you’re bumbling around in a fog. I felt like I was swimming through a bowl of thick tapioca pudding with ankle weights on. My brain just was not sharp. I was foggy and fuzzy and my reaction time was really terrible. I’ve been in better shape, but we had to get home, and my spouse was in no shape to drive, either. Plus, they don’t know the area we were in. So, I had to suck it up and get on with driving. Focus – focus – focus. Pay attention. Watch my speed.

And sure enough, 7.5 hours into the drive, things started to devolve. We were trying to figure out where to buy some eggs and milk and bread before going home. We didn’t have anything fresh in the house, so we had to get some groceries. Driving along, I came to a major fork in the freeway and I had to choose between the left branch or the right, so I decided on the right side, then realized a few miles later, it was the wrong choice. My spouse was pretty pissed off, and yelling ensued. Again.

But I remembered what an ass I’d been on the way down, so I pulled over on the shoulder where it was safe, checked my smartphone, found a grocery store that was open till midnight, and used the GPS on my phone to get there. My spouse was pretty anxious and turned around, too, which made them even more combative. And that wasn’t any fun. But when I followed the instructions of the GPS (almost turning the wrong way onto a one-way street, in the process — it was dark, after all), I got to the store by 10:50, which gave me more than an hour to find and buy the 10 items on the list my spouse made for me. I was in and out in 15 minutes, which was good. Heading out again, I took another wrong turn (even with the GPS telling me what to do – ha!), but I turned around and found my way back.

And we were home before midnight… without too much bloodshed, fortunately. I remembered how hard it had been for me when I lost my temper, while we were driving down. It was bad enough that I felt terrible, felt like a fool and an idiot, and my self-confidence was totally shot. But allowing myself to get angry and vent, to let things escalate with me and “defend myself” from my spouse’s “attacks” actually just made things worse. Even though I was totally justified in my response, it made everything harder for me to think, to process, and do the things that would build up my self-confidence, as well.

It’s all a learning experience, of course. So, I can’t be too hard on myself. It’s one thing, to make mistakes and mess up. It’s another thing to give in to the circumstances and let myself blow up… and never learn a thing in the process. I have to just keep my head on straight, study my situation, watch my reactions and behavior, and learn how to manage myself better. What other people do is one thing. But I need to pay attention to myself, to keep myself as functional as possible — based on the lessons I’ve learned from my past experiences.

It was an exhausting trip, and I’ll write more about that later. I’m still digesting the whole experience, and it’s clear I need to make some changes to how I deal with my parents. They need help — and they need the kind of help that only my spouse and I can offer. Everyone around them is pretty depressive, and some of their friends are distancing themselves from them, because they’re afraid of all the implications of a life-threatening condition that needs to be dealt with.

This is very hard for my folks, because they’re so social, and it’s hard for them to be ostracized, just because of illness.

It happens, of course. I could write a book about how that happens. It happened to me after my last TBI, when I couldn’t keep up with the social and work activities I’d done for years prior. People sensed a vulnerability in me, and it made them uncomfortable. They also sensed a change in me that made them uncomfortable. And since I wasn’t always up to the levels I’d been at, before, they drifted away. I talk about that in TBI S.O.S.Self Matters To Others. Who people know us to be, is also a big part of who they understand themselves to be. And when we change, a part of their world goes away. That’s not easy. But it happens. Not only with TBI, but with other injuries and illnesses, as well.

Anyway, I’ve gone on long enough in this post. I’m back from the visit with my parents, settling back into my regular routine, with some changes. I called my folks, first thing this morning to check in, see how they’re doing — and also pick them up a bit. I need to make this a regular routine, because that’s what works for them. Plus, it’s just nice to talk to them.

I also need to take care of myself, because this is even more demand being placed on my system. And it’s not going to get simpler, anytime soon. So, keeping myself in good shape, stepping up and being responsible about my issues… that’s a big part of what I need to do.

As I said, that’s enough talking for now. I’ll have plenty more to discuss, on down the line.

Sometimes the wheels come off. And you just have to figure out how to deal.

Onward.

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TBI Recovery – more work than you can ever imagine

5-Minute Read

shoestrings tied on a shoe
I always tied my shoestrings in a way I didn’t like – till last month

After nearly 50 years of tying my shoes in a way that makes the laces stick out in weird ways, I’ve finally started tying them in a way that makes them neatly lie flat across my shoes.

I’ve been bothered by my “askew” shoestrings for as long as I can remember. When I was a kid and first learned to tie them, I was happy I’d just figured out how to tie them. But the way they lay — all scrunched up and crooked — really bothered me.

I told my dad once, and he said I could tie them differently, by looping the shoelaces around in the opposite direction. At the time, it was too much for me to wrap my head around. It didn’t make sense to me. Plus, I’d only mastered the motion (and muscle memory) of tying them properly in the one way I knew how.

And I was afraid I’d lose the tenuous skill I’d already learned.

Years later — nearly 50 years, to be more accurate — I’ve finally decided to tie them in the way that makes the loops lie flat across my shoes. They’re less likely to trip me up, that way. And I like how they feel better than the old way.

I’ve been doing this regularly, for the past couple of weeks — making the concerted effort to tie them in the way that makes them neat and tidy.

But you know what? I keep going back to the old ways. Back to the old habit of tying them in a way that’s really second-nature to me, after doing it that exact way for all these years.

And that’s taught me, yet again, about how and why TBI / concussion can be so difficult to recover from. The “wiring” that you’ve trained to use in a certain way — habits of thought and action, movements of your body, ways you think about things, routines of sleeping and waking — may have changed in ways you cannot see, but it’s all switched around, so you have to find new ways of doing things that you’re used to doing in one certain way… since forever.

And no matter how well you train yourself to do things the new way, no matter how much conditioning you have, no matter how well you like the new way, no matter how badly the old way has been disrupted, your brain and your body are still going to try to do things the old ways, the ways that they think they still know how to do.

They don’t, of course… or maybe they need to be intensely retrained. But they don’t realize it. And that’s one of the hallmarks of TBI: not knowing what’s messed up, until it’s too late (and then, sometimes not even realizing it yourself).

No matter how convinced I am of the new way of tying my shoelaces… no matter how much I may like the new way of doing things… no matter how much I used to hate the old way of doing things… that’s what my brain and body and muscle memory are used to. It’s what they feel comfortable doing. Even if it doesn’t work.

So, I have to keep after it. Like all of us who are dealing with somewhat broken brains / disrupted wiring. Our systems will go for the way that they think is easiest and what’s most familiar. They just don’t know it won’t work out.

And that’s what we have to keep learning and relearning and readjusting to, over and over again. No matter how long ago the injury happened.

It takes a ton more work and effort and attention and focus and determination to recover — even from a “mild” traumatic brain injury. That’s what most people don’t understand… but every long-term survivor knows, all too well.

Be that as it may… Onward…

Nearly there – on the eve of Christmas

Christmas wrapping
The final push is on…

I’m supposed to be shopping, right now. I intended to get up early and head out to a local department store to pick up the last of the gifts I’m giving. Then I was coming back to deal with one of the cars having a nearly-flat tire. Then I was going to run some last-minute errands, followed by a nap, followed by gift wrapping, followed by making the Christmas turkey, followed by preparing the trimmings, followed by more gift wrapping… and then finally supper.

It sounds like a lot, only because I have it all broken into different pieces. But breaking things up into different pieces and then scheduling each one in its own time slot actually makes it much easier to take care of everything.

Because it’s all got to get done. It’s not like it’s optional. The gifts need to get wrapped, and the food needs to get cooked. The car needs to have sufficient air in the tires, and I have to have my nap. It will all get done… so long as I keep my cool.

Yesterday, I talked about how I need to keep my cool around my spouse when tensions get high. And it’s true. As much because of their cognitive issues, as mine. Last night, I was feeling really rushed, and I was having a lot of trouble keeping my thoughts straight. I have not been good about keeping on my sleeping schedule. My spouse has been especially needy/demanding, this year, and they have also been having more trouble thinking things through, which makes them more emotional and more volatile.

So, to calm them down, I have been staying up later in the evening, watching television, and adapting more to their schedule, as well as their eating habits (I’ve been eating a lot more bread than I should, which is messing me up, because my body can’t handle the gluten/wheat as well as it used to). It’s great for them, but it’s terrible for me. And it wears on me, after a while.

I was feeling really pressured, and I said something that my spouse took the wrong way. They took a lot of things the wrong way, yesterday, for some reason. They’re feeling depressed and isolated and not that great, physically, so that’s an added stresser for them. And they take things the wrong way, getting all riled about things I say and do, which I’m trying really hard to not do wrong.

So, painful awkwardness ensued, and it took most of the evening for things to even out again.

Man, oh man, I cannot wait for Christmas to just be over.

Well, anyway… I’ve got a week and a half of time off ahead of me (oh, except for a few hours I need to work, next week, to balance out my vacation/work schedule). And I need to be especially protective of myself, my time, and my energy, while I’m home. We have a number of scheduled activities we have to go to — doctors and social gatherings and errands to be run — so I need to keep balanced, and keep my system in good shape.

That means exercising as usual, each morning. That means being smarter about what I eat and drink (making sure I drink enough water). That means being firm about the times when I got to sleep, and not being pressured to shift my schedule later, just because I’ve had a nap.

I felt sick all during the Thanksgiving holiday, because I wasn’t keeping on my sleeping schedule. And I don’t want to do that all over again. I’m feeling a little sick, right now, actually. I just have to get everything done. And then do it.

Could be, I have to call AAA to add air to that tire, since it might not be safe to drive on it. But I can easily do that while I’m taking care of everything else at home. I just call them, and they come. Or I may need to change the tire, period. Either way… as soon as I get back from my department store trip, I’ll have the rest of the day to sort everything out. So, onward and upward. I can do this.

I just need to be diligent about it, act like the adult I am, and keep my eyes on the prize — a wonderful week off, when I get to relax and actually do some of the things I never get to do, otherwise, while I have more than one hour of uninterrupted time to focus and concentrate.

Luxury. Pure luxury.

Okay, enough mooning about this. Time to get a move on and get this show on the road. I’m nearly there… I’m nearly there…

Find a New Neuropsych Step #1: Record the issues I’m currently having

The pieces are all there. We just have to put them in their places.
First, I need to collect the pieces.

Step #1 in finding a new neuropsychologist is : Record the issues I’m currently having and how they impact my life. Wherever possible, have real data behind my rationale for seeking help.

So, if I’m going to work with a new neuropsychologist, I need to be able to tell them why I need help. That means tracking the issues I’m facing on a regular basis, and figuring out if they are significant enough to warrant getting help.

In my case, there are certain things I would like to address, because they directly impact my personal and private life on a regular basis.

At the top of the list is the processing speed that seems to be getting slower.

Next, is my increasing difficulty with comprehending what’s being written (in emails and notes) and said to me. I am having a lot of trouble taking it all in the way I used to.

And then there’s the trouble I’ve been having with increased distractability and getting much more scattered than before. As is often the case with new jobs, about four months in, I start to lose focus, get scattered, and I lose ground. I had a very foggy/fuzzy couple of months behind me, which is patently clear as I attempt to piece together my end-of-year self-assessment for work. I am having trouble putting it all together — much moreso than three months ago.

I’m also having trouble getting started with things. This has been an ongoing issue with me, and I’ve tried to get help for it, but I’ve consistently been told (in so many words), “Your test scores don’t indicate difficulties with that part of your brain, so it really is a willpower thing.” I dunno. I really want to get started on things, but I sometimes have trouble figuring out how to get started — so I don’t. It’s becoming more and more of a problem, and I can’t seem to get help with it.

I’ve been organizing my study, and I came across an old performance review from two jobs back. My boss back then (about 4 years ago) warned that I was late finishing my projects, and that was tarnishing my otherwise stellar reputation. My performance review was also acceptable, rather than exceptional (which it should have been).

Part of that was the fact that my boss really didn’t like me and was threatened by me.  Part of it was that lateness and never finishing anything on time was a pretty big issue — which affected my performance, as well as my income. So, even if I did feel better about myself and my abilities to deal with life (as my neuropsych noted), the fact of the matter was, I simply wasn’t delivering on time.

Feeling good is great. Delivering on time is even better. In fact, I would have settled for being unhappy but more productive. That would have made a big difference for me professionally. Ultimately it would have reduced stress… and contributed to my happiness.

Anyway, these are some of the specific things I need to address on a neurological level. I need to know how the brain works with these things, and I need to understand how to tweak my performance – what, if anything, can I do to improve in these areas?

I need to map out exactly how these issues are getting in the way, list the things I have been doing on my own to address them, and talk about the results I’m getting (or not getting) that are affecting my performance at work and at home. I would feel a whole lot better, if I could take some positive steps toward fixing these issues.

  • Processing speed
  • Comprehension issues
  • Distractability
  • Getting Started / Initiation

If I can find someone to help me “hack” these problems, that would be great. It would be a step in the right direction.

See more steps here : https://brokenbrilliant.wordpress.com/2016/01/09/how-to-find-a-neuropsychologist-a-step-by-step-plan/

Ah, Groundhog Day…

I have a feeling I’ve been here before…

I’m not talking about the recent event when the behavior of a groundhog (or groundhogs, depending on your regional preference) determines our future. I’m talking about the movie,”Groundhog Day”  where Bill Murray’s character goes through the same day over and over and over again.

This is my life in a nutshell. I cycle through the same experiences / crap / joys / sorrows on a regular basis, each time without much active recollection of how it was before and what my experience was then. It applies to the good things, as well as the bad things, and my neuropsych is repeatedly surprised that I’m wrangling with the same issues that I was wrangling with, several weeks, months, or even years ago. Sometimes I have “new” experiences that are repeats of what I experienced only the day before, and I have to go through the whole learning process all over again.

One example I can think of was back in December, when I had that business trip overseas. Each day, I got up with this terrible, terrible dread — almost crippling anxiety over what was going to happen that day. It was awful, and I literally did not want to leave my room. I just wanted to stay behind closed doors, where I had no interaction with anyone, where I couldn’t possibly screw things up, and where I could move at my own pace and not adapt to anything new or different around me.

And each day, I literally forced myself to get dressed and go out into the world. Each day, I rediscovered that I was able to communicate, that I was capable of understanding what others were saying, even if I didn’t get every single word, and that the world outside was something to be explored and discovered, not dreaded and avoided.

Then the next day when I got up again, it was back to battling the crippling dread, the fear, the anxiety… the monumental effort of getting myself OUT the door… and the happy discovery that I could indeed handle myself well in the world beyond the hotel room. And at the end of each day, I was able to kick back and really enjoy myself in that space, just reveling — all over again — in the “discovery” that I was really going to be okay.

Now I have another business trip coming up that will take me overseas. This time I am going to a country where I do not speak the language. I have been studying a bit, which has been kind of funny — I found some audio files to learn from, but when I started to listen to them, it turned out to be all “Stop or I’ll shoot!” and “Put down your weapon!” and “How many armed men are there?” — apparently a law enforcement or military training course. At least I know how to say “Don’t shoot!” if I get into any trouble while I’m on my trip. You never know… there are some pretty rough neighborhoods where I’m going.

Anyway, the point I’m making is that for some reason, I seem to have just a terrible, terrible memory for things that have happened to me before. This is true of good things… and bad things. I seem to get myself into situations, over and over again, doing the same thing and expecting different results, and then I suffer and chafe when things don’t turn out like I think they’re going to.

Like trying to get out of the house to get to work… Time and time again, I get up thinking that I can just take a little time to check my email and/or do some little things around the house, and then I’ll be able to get to work on time. And time and time again, I get sidetracked on one thing or another… and I end up rushing and being later than I wanted to be. I make up the difference at the back end, of course, staying late — even later than I would have to, actually, because I start to warm up around 6 p.m., and it’s hard for me to take a break when I’m finally making good progress. Even so, even if I do make up the difference in the hours, the simple fact is that I do this over and over again, thinking that this time it will be different.

Insane? Well, according to some, it is. Whatever you call it, it gets frustrating, and I feel like a complete idiot.

I guess part of the equation of this apparent failure to learn, is the fact that I have to stay very present in the current moment, or I can really lose my bearings. I think this 100% here-and-now mindset has developed over years of having to navigate so many issues — light sensitivity, noise sensitivity, exhaustion, vertigo, nausea, pain of all kinds, headache, distractability, and more — but still needing to be functional. I think I just developed the habit of focusing so completely on the present so that I could function in that moment, that everything else — before and after — just disappears. Or it never has a chance to get set in my mind.

I think also the stress of daily living over the years has impaired my ability to learn. Just having to deal with all the sh*t of my issues and symptoms and the screw-ups and the adjustments and the confusions and distractions… it can get pretty stressful, and I’m sure it’s had some impact on my ability to learn.

Then again, in other areas I learn extremely well — like this language thing. I’m actually picking up a lot of good stuff, and I think I’ll be able to at least ask people for help and understand basic numbers and directions, and be able to thank people for their help, without too much struggle. Languages seem to come pretty naturally to me, and it surprises me how much sense they make to me after a relatively short period of time.

So, it’s not like I’m completely disabled with my learning. But experiential learning? There, again and again, I end up going through the same things, as though it were the first time ever.

Well, I can’t worry about it. If I approach it like it’s a grand adventure of constant discovery, and I treat each situation like a fun opportunity to have a “new” experience, it’s fine. It keeps me fresh, actually. It keeps me interested in my life. It’s never boring — that’s for sure. The worst thing I can do, is treat myself this means there’s something wrong with me, that it means I’m somehow damaged. If I don’t judge myself and I just accept that about myself — and come up with ways to work with/around my very limited memory… and I don’t get it in my head that this means I have early-onset dementia and I’m losing my mind…. I can work with this.

Hell, I’ve been working with it for as long as I can remember. I just “get lost” sometimes and I have to find my way out of the shadows and dead-ends… which I can do pretty well. I’ve had plenty of practice, you see.

Anyway, life goes on. I have a number of very interesting projects I am working on, and that’s keeping me interested and engaged in my life. I’m learning new things pretty well, and I feel good. I also got a lot of sleep yesterday afternoon, after I was done with my work. I worked from home, so I was able to just crawl into bed when I was done for the day. That was nice. I got about 7 hours of sleep last night, so that’s good, too. And I have all day today and all day tomorrow to kick back and take care of myself. Because I’m flying out in another week, and I need to be healthy and whole to make this trip.

So it goes. Part of me would like to have a better recollection of the things that I have experienced in the past, so that I don’t keep making the same mistakes, and I don’t keep pushing myself and wearing myself out. And I’m thinking about ways I could do that — maybe keep a log of what works for me in different situations, so I can draw on what has worked for me in the past… I had that kind of a log going, about 3 years ago, and it was working well for me. I think maybe I need to resurrect it, so I can continue to draw on my experiences and get my sh*t together better than I currently am. It’s an idea….

Anyway, the day is waiting, and I’ve got to get a move on. It’s always interesting and never boring… and I need to remind myself of how things have been in the past, as I work through my present and into my future.

I’ve been here before, I’m sure… now I need to figure out how to make the best of it.

 

Keeping up with keeping up

As time goes on, it never ceases to amaze me, how easy it is for me to be pulled off track in all sorts of directions. Distraction is a huge trap with me, and the cumulative effects can be pretty brutal.

I start out knowing I want to get from Point A to Point B. But all around me, there are tons of distractions… Little things I think are important, but really aren’t… Big things that may be important, but are keeping me from focusing on reaching my ultimate goal, one step at a time.

I start out wanting to go from Point A to Point B… but those other things look so interesting… and I end up getting pulled in all sorts of different directions.

And sometimes I never get to Point B. It’s just not good.

So, what I have to do, is just block out everything outside my main goal, and focus exclusively on that. I can’t afford to be distracted, I can’t afford to be pulled off in different directions.

I have to keep myself involved and invested in what I’m doing with myself, so I don’t get pulled all over creation, chasing after this and that and the other thing.

But how? How do I build a proverbial wall around the things I’m working on, to keep focused and involved?

I’m still working on that, but one of the things that works for me, is resisting the urge to go off and do something else, when I feel as though I have just completed a task, and I want to change up the pace.

I say “feel as though I have just completed a task” because a lot of times, I’ll get the sense that I’m done with something, when I’m really not. There are extra details that are left hanging. Loose ends that need to be tied up. But in my constantly restless brain, I get antsy, and I get pulled off into other things. I tell myself I’ll come back to what I was working on later, when I’m more rested and relaxed.

The thing is, when I’m antsy, I tend to get pushed into high gear, which has me frantically doing the distraction-thing (like picking up some other piece of work that’s pretty involved), and in the process of distracting myself from my prior agitation, I fatigue myself even more, and I become even more prone to distraction and poor attention.

Which sets me waaaaay back. It’s not good.

This impulse control business is just nuts… And the attentional issues… oh, please. It’s just too much, sometimes. If I’m not careful, I’ll end up ranging far and wide, thinking I’m being productive… and I’ll get nothing done in the process. It’s a downward spiral of worsening distractions and increasing workload. Crazy. Crazy-making.

So, what I’ve been doing lately, which has been working out really well for me, is when I’m done with a very demanding task which has either upset me or tired me out, I’ll just step away and take a break for a few minutes. Gather myself back in, catch my breath… and then I’ll go back to following up on what I was just working on before. I’ll write up my notes from the experience, highlight the lessons I can find, and I’ll mark any follow-up items that need to be done.

I have to do this right away — or I will forget the things that are important, which need following up. If I wait, I am lost. And it’s no good trying to reconstruct the experience, days — even weeks — later. My brain thinks I can do it, but it’s wrong. I can’t.

I also have to keep a calendar pretty carefully, showing what I’ve worked on in the past. I have to not only keep a calendar of what I need to do in the future, but also keep one for what I’ve done, so I can keep track of the balls I have in the air. I tend to literally forget what I’m working on, and then I get distracted and wander off in all directions.

A retrospective calendar is key for me. Without it, I get into real trouble. And it needs to be in monthly format — with 4-5 rows of 7 squares, one for each day of the week — so it’s more visually meaningful for me.

Keeping up with keeping up is not always easy. And it requires specific tools and techniques:

  • Sticking with tasks until they have been completely followed up on.
  • Taking breaks when I am tired, and always coming back to what I was doing before.
  • Planning my time carefully, with an eye to what I need to accomplish.
  • Keeping a calendar for my past and my future, so I don’t forget what I’m supposed to be working on.

The most important technique of all? Keeping in mind the possibility that I might be forgetting something, and I might be letting something slide… and doing a reality-check to make sure I’m correct. I can check my notes, I can talk to people, I can consult my project list. Whatever I do, I dare not forget that I’ve got things going on.

The main thing is, not to give up. Not to quit. Not to abandon the job before it’s done. And to remember, my brain might be telling me I’m good to go, long before that’s the case.

No one has a clue how hard this is for me

Even I don’t, sometimes.

Seriously. I walk through my days, going about my regular business, living my life, interacting with people, doing what I do, making mistakes, making it right… working (hard) to keep up. And I do manage to keep up. Most of the time.

At least, that’s how it looks on the outside. I’ve learned, over years, to present in a certain way… to project a certain image… to do a passable job of fitting in, by mirroring the mannerisms and “social pacing” of people around me. And it works. I had to figure it out by trial-and-error, but I did eventually figure it out.

In my early childhood, when I was first learning about how to live outside my parents’ house — in school, especially — I had a very hard time fitting into my surroundings. My early grade-school years were rocky and rough, and I went through a lot of bullying and teasing and marginalization. I also had a very, very hard time dealing with academic requirements. I could pretty much get by, but it was — again — trial and error. I remember working so very, very hard to make my teachers happy… without fully understanding why they were asking me to learn certain things and complete certain lessons.

I think part of the problem was that, despite having a hard time keeping up with what was going on around me, I was ahead of the kids around me, subject-wise. I grew up in a family that valued education and spent a lot of time exploring the world of ideas. My parents were — and still are — very well read, and my grandparents were experts in their fields. I was well accustomed to sitting around talking about complex subjects… more comfortable doing that, in fact, than spending time playing with the kids around me.

And it was awkward. Very awkward for everyone. At least, I think it was. I didn’t understand my peers very well, and they didn’t seem to understand me at all. Or maybe my perceptions were skewed because of my TBIs — poor judgment, slowed information processing, and misperception of the actions and/or intentions of others are all hallmarks of TBI. Maybe everyone was fine with me; I just wasn’t fine with them (or myself).

Anyway, I don’t want to harp on all my difficulties. Let’s just say my childhood was somewhat challenging.

All that started to change, however, when I started getting connected with kids who were several years older than me. My family had moved to a new area, and we had started attending a new church. That church did not have a very large concentration of kids exactly my age — they were either several years older than me or several years younger. My parents talked to the youth director and managed to get me “in” with the older kids in the young adult youth group.

I really wasn’t sure about it, when I started. I was painfully shy — no, shy isn’t the word for it. I was completely out of my depth. All the boys and girls — young men and young women, actually — who were part of the youth group seemed so with it, so together, so … grown up. They seemed like they knew what everyone was saying when they talked, and they seemed to know how to act around other people.

I was amazed. I couldn’t for the life of me figure out how to initiate conversations that weren’t about some academic matter, and I sure as hell didn’t know how to keep a conversation going. I was petrified, the first months I hung out with the other kids. But fortunately, some of the most popular kids in the “gang” at church were second cousins of mine, and they knew me from family reunions. So, I was “in” with the crowd, even when I couldn’t manage to put two words together.

It would be really easy for me to focus on how challenging those years were for me. But I’d rather focus on how much I gained from meeting those challenges head-on, and learning from them. Those several years with the older kids — I spent about 3 years among kids who were several years my senior — taught me volumes about how to make my way in the world. By watching them and seeing how they interacted with others, I was able to model my behavior on something positive — and types of behavior that obviously worked. I watched the kids who were clearly popular and having a great time being alive, and I mirrored their words and actions. I’m sure I looked a bit spastic, at times, tagging along and clumsily imitating everyone at the start, but eventually I learned how to smooth it all out and “deliver a seamless presentation” of the kinds of behavior I saw other people using — that worked well for them in social situations.

I could tell things worked, if people laughed at jokes. I could tell things worked for them, if other people smiled when they approached. I could tell things were “clicking” socially, if everyone was relaxed and enjoying each others’ company. It probably sounds pretty remedial and basic, but that’s how I learned. And I learned pretty quickly, too — so long as I could be a part of the group, but still be able to withdraw, now and then, when I got overwhelmed. Because I was with kids who were some years older than me, I was able to get “special dispensation” because I was younger. I was “just a kid” so I was allowed to mess up, now and then. Not all the time, but they tended to cut me some slack, which was helpful.

The fact that all this took place in a church environment, where there were very strict rules about how you did and did not behave was very helpful also. All the boys were well-behaved, and all the girls kept to very high standards of behavior. Even though a lot of us eventually left the church and went our own ways, far from organized religion, the fact that there were clear guidelines in place for us to follow made it pretty straightforward for me to figure out how I should — and should not — behave around others. The kids who were ahead of me modeled acceptable behavior, and I followed their example. I was part of a “gang” — but the gang was all good Christian kids, so I had the benefit of being in a group of pressuring peers who pressured me in directions that did not lead towards drugs, alcohol, petty crime, and teen sex.  (That pressure took place in the other “gangs” I ran with, several years later, in school and at jobs I held.)

During those early teen years in the church youth group, I learned how to integrate socially through the various activities we had — Sunday School, prayer meetings, weeknight services, organized youth group activities, like trips and outings, Bible quiz team, and countless other get-togethers that were organized by the youth leaders. They really did have a good program, I realize in retrospect, and I benefitted from it a lot. Being able to be around kids who were older than me gave me license to just be who and what I was — a little dorky, a little geeky, gangly and awkward and prone to say dumb things that were out of context — and be accepted, anyway, because I was young. I don’t remember being stigmatized, probably because it was generally expected that I was supposed to be different — but that was because of my age, not because I was a queer little brain-damaged freak who couldn’t fit in with my peer group.

What a relief it was, to be allowed to be different! I had been battling against my social surroundings for years, but that had gotten me nowhere. And I mean, nowhere. Standing out as being different (which was my “default setting”), had resulted in a lot of bullying, ridicule, and general hardship for me. It had also not helped my academic performance or my general ability to get by in the world. But being able to hang out with kids who were not only older than me and showed me how to behave, but being given some leeway with how I behaved, totally took the pressure off.

I was finally able to relax, socially. And I was able to learn. I was able to pattern my demeanor after the most socially successful members of the youth group — the guys and gals who were the most capable, the most popular, the smartest, the most respected-by-adults. I’m sure I looked kind of dense, stumbling and bumbling my way after them. But you know what? No matter how dorky I looked around the older kids, when I was around my own peer group, those behaviors and mannerisms made me look a lot more mature than I felt. I didn’t need to understand exactly why someone would say certain things (like social pleasantries) or do certain things (like strike up a conversation with people you’ve never met before in your life). I only needed to understand how they did it, and that it worked for them… and perfect my impressions of the most socially successful people I knew.

Granted, my “performance” wasn’t always perfect, and there were a lot of false moves over the years that got me in trouble with older kids and teachers and other authority figures, but you know what? By practicing and practicing and practicing some more… observing carefully when others did things that made them look good… by rehearsing the “role” I wanted to play in the world in the privacy of my own bedroom, out in the woods where I could have some alone-time… by constantly checking and re-checking the results of what I’d done, learning my lessons and “taking my lumps” as I went, I was able to build a really compelling and convincing repertoire of social graces that have stood me in good staid.

Okay, so my parents were probably pretty concerned throughout the course of my life, when I’d spend hours just talking to myself. And I’m sure they’ve often wondered about me walking around having animated, in-depth conversations about topics I’m passionate about… with no one in particular. To this day, I still have extended animated converstions with myself when I’m alone or in the car driving. I do it — and have always done it — to work on my vocal pacing, my delivery, my presentation. I have a role to play in the world, and I know well enough (inside my own woolly head) how hard it can be for me to keep my act together. I get lost all too quickly, so I need to keep my composure skills up, and “running the lines” my life does it for me. This “regular life” stuff doesn’t come easily to me, so I have to work at it, work at it, work at it some more. All the time, whenever I get a chance.

Fortunately, I enjoy it, and when I’m having intense, protracted discussions with myself, pretending to talk to another person — breaking now and then to let “them” get a word in — I’m usually going on about something that captures and holds my interest. So it’s not work as much as it is effortful play. And it pays off.

In countless ways. Can I just tell you, the best validation of my efforts has been all these people telling me, over the course of the past year or so, that they never would have guessed I had a head injury, let alone half a dozen. It never would have occurred to them that I was anything less than perfectly normal. On the outside, then, my presentation is intact. And all my hard work has paid off. The countless hours I’ve spent analyzing my interactions with the world, checking and double-checking the results of my relating to others… the untold time I’ve spent carefully tweaking my demeanor during the course of converstaions… the tricks I’ve picked up about how to interact effectively with others… it’s all paid off. Big time.

Now there are some days, of course, when I feel a lot more like a fraud than I feel functional. I feel like I’m just walking through my days playing a role that has nothing to do with me. I’m sure a lot of people feel that way — especially as they age and start to examine their lives. But with me, it’s especially pronounced, because there are many, many times I say and do things without even thinking about them which don’t sound anything like me, or what interests me, or what I care about. There are times when I’ll get to the end of a conversation or a complex interaction with someone and realize that I have no idea what just happened — I wasn’t even personally involved in the interaction. I didn’t even say what I meant or thought or felt. I just mirrored that other person, without even knowing what I was mirroring. They thought for sure that I agreed with them wholeheartedly and was validating their point of view by repeating it back to them, but I was really just saying and doing the bare minimum to get in and out of the conversation without getting too turned around.

Indeed, this is the great pitfall of this approach, socially successful as it may be: that I can get swept up in a chain of events that I don’t agree with, don’t care about, don’t even want to participate in… because the action is moving a lot faster than my little brain is, and I’ve unconsciously mirrored everyone so well, that they enlisted my help and swept me into their grand designs without my ever consciously assenting to it. And they think that because I’m able to mirror them so well, I’ve consciously chosen the path they’re taking because I’m as totally into it as they are… But I haven’t deliberately chosen.  And I’m not totally into it. I’m totally into nothing more than just participating and navigating the situation successfully enough to not be found out as a head-injured dimwit.

It can be a problem. Especially when I try to slow down the action long enough to say, “Hey – I need a while to think this through before I get involved.” Slowing things down is terribly difficult for me, in the first place, because I tend to be highly impulsive and get swept up into the energy of things. I also hate feeling as slow as I am, and I hate feeling so friggin’ retarded — as in the literal meaning “to be delayed”, which is exactly what I am at times. I have developed an elaborate and effective cover/compensatory strategy for my limitations, and I like how I feel when I’m “under cover”. I like feeling whole and hale and hearty and fast and smooth and with it. I like feeling complete and well-integrated. But when I “buy my cover” and forget that it’s just that — well, things can break down pretty quickly.

I suppose it’s all a balancing act.  There’s no way I’m going to just dispense with my compensatory behaviors — why should I? Everyone needs a little cover, now and then, and plenty of people say “yes-yes-yes” while they’re trying to buy time to think things through on their own, in the privacy of their own heads. But I don’t want to fool myself into thinking that everything is perfectly alright, since I can present well, articulate, keep my act together in very controlled circumstances. I don’t want to fall into the habit of thinking that because I can function very well in a highly structured environment where I’m literally just mimicking people around me and able to perform well as a result, than I can duplicate that same level of effectiveness out on my own.

I’ve tried it, and it doesn’t work. I once thought that my on-the-job skills at my highly routinized, heavily project-managed 9-to-5 position at an established corporation would translate into the same level of effectiveness and success when I started my own company. But I was wrong, and that experiment ended very, very badly. I’m still picking up the pieces.

I once thought that because I saw other people conducting workshops and I understood the form and structure of them, that I could duplicate their efforts and do just as well. What happened was, I got 10 minutes into the workshop and lost control of the “flow” and ended up riding a wild bucking bronco of a workshop where everyone talked out of turn and wouldn’t stay on-topic — very similar to what happens inside my head when I’m tired and overwhelmed.

I once thought that because I had worked in financial services for many years, and I had a burning interest in financial planning, that I could and should become a financial planner. But I ended up enrolling in a program for a bunch of money and then was unable to even finish two of the six courses. I was also unable to get more than a C grade in the two tests I took. And I had no idea why! As so many times in my past, I actually forgot about the program for a while and wandered off to do other things… and it didn’t fully sink in that I was supposed to be working on it until I got a notice that I had all of six… then three months left to complete the 18-month course. It slipped my mind, for the most part… and I couldn’t finish the program. What could — and should — have been a simple matter for me turned out to be a whole lot more complicated than I thought it would be. And I was a whole lot less up to the task, than I had assumed.

I once thought that because I had worked with many different kinds of lawyers for many years, that I could read and analyze and understand important legal documents for my family, but I ended up really turned around and confused, and if it weren’t for the fact that I had a good lawyer waiting in the wings, I could have really screwed things up.

The wild thing was — I had gotten myself into all these messes at the urging of others around me. Others who were so very, very sure that I could handle myself perfectly well, that I was perfectly capable, that I was perfectly equipped to deal with all of this… who had no idea at the time (as I) that there were some serious neurological impairments holding me back. There weren’t a lot, but there were enough.

And as a result, I have danced on the edge of disaster repeatedly throughout the course of my adulthood — and I’m still running into instances where I overestimate my capabilities. They’re less and less pronounced, and I’m getting more acclimated to “quality controlling” my assumptions, but the risk still exists that I might overreach and not realize I need to take special care to compensate for my limits.

I suspect that these may be good examples of anosognosic hazard — having lacking self-awareness get in the way of living your life. I know that they’re good examples of how buying my own cover can get me into trouble.

The thing is, I don’t feel like being disabled, I don’t feel like being head-injured, I don’t feel like making special exceptions for myself. But when I don’t at least consider that my broken brain may be complicating my life needlessly… getting me into trouble, yet again… well, the feeling of being in hot water is far worse than the feeling of tending to my relatively few special needs.

I really, really hate having to consider how difficult some things are for me. I detest having to bumble and fumble and stumble my way through situations until I figure out how to handle them. I cannot stand having trouble with sequential steps and not being able to remember stuff that “should” come easily to me. Most of all, I hate the idea of revealing to others how hard I have to work to do the most basic of things, like getting up and going through my routine each morning, and actually getting to work on time. It’s embarrassing, it’s disconcerting, it’s a total downer. But that’s how it is.

And even if I don’t show it to everyone else, it’s important that I not lose sight of it inside my own head.

‘Cause you can’t fix something, if you don’t know it’s broken.

How severe was my injury when I was 8?

My parents are coming to visit me next weekend,and I’ve been thinking a lot about my earlier injuries and how they affected my childhood. How they affected my development, how they affected my interactions with people, how they affected my future. When I was seven, I fell down a flight of stairs and was very dazed and confused and wasn’t able to talk. And when I was eight, I was hit in the head with a rock and knocked out for a while. (I tell that story here.)

In the ensuing years of my childhood and youth, I had more injuries — concussions and falls. It was not uncommon for me, while playing, to fall hard and/or hit my head and get up a little dazed and confused… but keep playing. Just keep playing.

Now, concussions alone could account for a lot of the problems I had when I was a kid — problems understanding what people were saying to me, problems with distractability, problems with temper outbursts, problems with getting really turned around and confused… lots and lots of mood and behavioral problems that my parents handled with faith and prayer and lots of structure, rather than pharmaceuticals.

In retrospect, I think it really helped, when I was young.  The structure gave me a framework to live within, the faith gave me something bigger to hang onto, and prayer offered me a way to ask for help from a Higher Power when I couldn’t find the words or the means to ask for it from human beings. It was a pretty exacting way to live, though. My family was very religious, and my parents were very strict (at that time) about what was permitted and what was not… what was sinful and “worldly” and what they considered pleasing to the Lord.

But while that faith and prayer gave me a much-needed support system when I was young, when I entered my teen years, it backfired. As I grew older, I still had a hard time, cognitively and behaviorally speaking. The problem was, I wasn’t just having troubles at home, I was having troubles out in the world. Teen years are marked by increasing social activities outside the home, and I just didn’t do a very good job of handling myself. I was alternately shy… and openly rebellious. I was alternately a high achiever and a slacking ne’er do well. I did a lot of good and helpful things in my youth, including saving an elderly lady who was trapped when the open door of her car (it was not in park) rolled and pinned her leg to a very large object (I can’t remember what it was, but she was pinned, and the metal of the door cut into her leg — I can still recall the sight of the inside of her fleshy thigh cut open — I guess my brain selectively records images). But I also sold drugs and bought liquor underage and distributed it to friends. I wasn’t a big-time criminal, but my later youth was marked by a lot of the warning-sign activities of criminals in the making.

Jekyll and Hyde… or head injury? Given the number of injuries I’ve had over the years, and the fact that a lot of my rebellious and “alternative” behavior was directly connected with an internal storm of confusion and agitation and rage that never disappeared, only subsided a little, I think the latter applies.

Okay, so all that being said, I have been wondering a lot, lately, just how severely I was injured when I was 8. I was knocked out with a rock thrown by some kids who didn’t like my looks and had been taunting and teasing me and my sibling from a distance. We didn’t respond, and they started to throw rocks. My sibling wanted to leave, but I said “NO, we’re staying right here.” I still feel awful about it; they could have been injured, instead of me. But I was hard-headed and stubborn, and I didn’t want anyone to chase me away from doing what I was doing.

Anyway, after a number of rocks landed closer and closer to us, one clocked me on the head. I recall feeling a dull-sharp impact and thinking, “What was that…?” and then I went down.

The next thing I remember, I was looking up and my sibling was hovering over me, crying, with tears streaming down their face. I was woozy and wobbly and at first I wanted to stay and keep playing, but they were so upset, I realized I couldn’t keep us there. I was also not feeling so great, and they led me home to my parents, who had me lie down on the couch while they called a friend who was a nurse, to find out what to do. I didn’t want to do what they told me to — I didn’t want to lie down, I didn’t want to hold still, I wanted to either get up and move around or go to sleep. I remember trying to sleep, but they kept me awake. I seem to recall being really tired, but also kind of punchy and agitated and restless. Eventually, as I recall, after checking my eyes with a flashlight a number of times, they let me get up and move around. And my life went on.

When I think back on that time, it seems to me that it was a pretty serious deal – but I’m not sure how aware of it my parents were.  Or anyone was, for that matter. And when I think back, I honestly can’t say how long I was knocked out for. I might have been out for a few seconds, a few minutes, even an hour or more. It’s impossible to say. My sibling can’t recall the event clearly, so I can only guess at how long it was.

And up till recently, I’ve been thinking I was out cold for a relatively short time. But it could have been longer. I can’t recall the kids who attacked us being in the field when I came to — I can’t recall how the light of the day was, and I’m not sure if my parents were concerned about my sibling and me being out longer than we should have been.

But to be accurate, there is a chance that I was knocked out for longer than a few minutes. It could have been much longer. And from what I understand, the length of unconciousness is an indicator of the severity of an injury, which can also be an indicator of long-term problems. Given the level of difficulty I had when I was a kid — particularly during and after 3rd grade… from that point on, life was one big obstacle course for me — I have to wonder if maybe I wasn’t injured worse than I thought I have been thinking I was.

I need to do some more research on this… It could be a good thing to learn. And I think it might help me talk to my parents about my childhood. Because despite learning a lot and putting a lot of things together over the past year and a half, I haven’t yet discussed my TBIs with them. I haven’t discussed them with anyone in my family. But next weekend, I think that’s going to change.

Figuring out how to talk to my parents about my childhood TBIs is actually one of the big action items on my plate, these days (in addition to working like a mad person to keep my job and keep up with my work… organizing my study in a way that helps me, not hinders me… clearing out old files and projects that were artifacts of TBI-induced agitation, rather than being something that would ever bear fruit… and tending to my marriage and home life). My folks have been saying for years that they can’t figure out what they did wrong to make me so unhappy when I was little. They can’t  figure out why I took so many wrong turns.  They can’t understand why I was so angry and rammy and difficult — what did they do wrong?

I have to tell them, it wasn’t them that caused the bulk of my many issues. It was TBIs. Getting hit on the head. Hard. And at an early enough age that it sheared and skewed the connections in my developing brain so it couldn’t develop “normally,” no matter what they tried. I have to tell them it wasn’t all their fault, and that all things considered, they actually helped more than they hurt.

For all their flaws, for all the things they might have done differently, my parents did create a home where I was able to develop habits of self-inspection and introspective reflection. They created a very structured and well-organized environment in which I could safely do things like paint and draw and write stories and express myself and learn things and be my own unique (and sometimes very weird) self. Certainly, it might have been helpful, if they had taken my shortcomings into consideration more and not overwhelmed me constantly with so much friggin’ input (my mother has always been a manic force of nature, God love her). But the fact that I’m still here, still standing, still able to keep motoring on, despite pain and agitation and confusion and generally feeling like I live my life in the dark and have to just bumble/stumble through a lot of things the first time, before I figure out how the heck to do stuff… Well, I have my parents to thank for that.

Even if my TBI at age 8 was more than mild — even if it was moderate — they raised me in a way that made it possible to keep going, keep moving, keep making my life the best that it could be.

And for that I am eternally grateful.

Now, I have to figure out a way to tell them, when they come to visit. I don’t think I could live with myself if I didn’t.

Getting it done – and enjoying it

I’ve been reading and hearing a lot of good things, lately, about how to keep on track and keep performing at a high level, despite TBI. It’s really encouraging to read about people who are high-level achievers, even though they were injured badly enough to be in a coma. It gives me hope.

And it lights a fire under me to get my act in gear, with respect to my day job. For years, for certain projects, I’ve kept careful project plans and checklists about what needed to be done. I’ve been able to plan, implement, and carry through on some very intense national (and even global) initiatives, working as an effective team member on projects that affect hundreds, thousands, and even millions of customers. And I’ve kicked ass. I can see a really strong history of achievement, despite my various injuries, and some days I wonder how I’ve managed to do it, day after day.

My longest-running project that I’ve headed up — a national media project that ‘s lasted for 13 years and is still going strong — has been operating nearly seamlessly (aside from some agitating regulatory issues and changing legislation) and it has a national audience that ranges from the Arctic Circle into subtropical islands. Every week, I walk through the steps of Getting It Done, and while some people’s heads would whirl at all the incremental actions, by now it’s second nature to me.

The ironic thing is, this project was first started around the time I was in a car accident that knocked me for a loop and wiped out a lot of the organizational skills I had, as well as the initiatory and motivational resources I’d had — in abundance — prior to the accident. Before the car crash, I had a number of really important initiatives going at my day job, overseeing a small group of producers and being third in administrative command at a mid-size professional services firm in a prominent city. I really had a lot going for me, at the time, and I had good plans and intentions. I was also active on the side, getting together this media project that was more a labor of love than a j-o-b. It was never done as a money-maker, per se, only as something that would make the world a better place — literally.

Then, I was involved in a multi-car chain-reaction accident in Thanksgiving traffic. It wasn’t a pile-up, exactly, but I did hit the car in front of me (their brake lights were out, which made it more difficult to see what was going on), and I got hit from behind. Double-whammy. Aside from being dazed and confused, I didn’t feel like I’d been really injured. And it never occurred to me that not being able to read or make sense of the claim form for the rental agency, not being able to see damage to the car that was right under my nose, and being so clumsy that (a few days later) I slammed my foot so hard I needed to get an x-ray to make sure I hadn’t broken it, might be signs that there was something wrong.

No surprises there — head injury has a way of masking itself. Maddening!

Anyway, in the ensuing months at work, my position become increasingly hectic and my ability to handle it decreased. Everything seemed so much more chaotic. I blamed it on the business, which was struggling under its management (and the problems it had inherited from past administrations). But in retrospect, I can see that I became much more scattered, much more sensitive to sound, and I couldn’t concentrate like I had been able to before, which was tough because my position was smack-dab in the middle of the storms that raged there on a regular basis. The projects I had, which were important to the firm, fell by the wayside. I slowly lost my hold on the group I was managing. And I became intensely stressed and depressed.

That job fell apart… but it also gave rise to a new career — one that involved a lot more machines and a lot fewer people. I went from being a manager to being a technical producer, and it was good for me. Very good for me.

At the same time, I was also getting this media project up and running, and things actually went really well with it. We started out small, then built and built and built, and now it’s enjoyed nationwide on a weekly basis. Ironically, this project came together just as the other job I had was falling apart. And I’ve been wondering how that could be — weren’t my sudden disabilities the same, all across the board? If I had such a hard time dealing with my projects at work, shouldn’t I have had trouble with my side projects as well?

Actually, no. There were significant differences between the two different situations.

  • In my day job, it was very chaotic and loud and there was constant interruption.
  • In my media project, it was just me and one other person putting it all together, and we were in lockstep with each phase of the launch.
  • In my day job, I wasn’t able to move at my own pace — I was on someone else’s schedule, and I had to constantly factor in everyone else’s input.
  • In my media project, I was able to pace myself and take things as I saw fit, with no one to report to, no one to take me to task, no one to impose their will on me.
  • In my day job, I had to navigate a lot of social minefields, which I did poorly.
  • In my media project, it was all task-based, and very objective, and the interactions I had with people were very technical and scientific and binary — a lot of simple yes-no questions, rather than the vague grey areas of the social scene.
  • I was doing my day job because I had to, because it was ‘the thing to do.’
  • I was working on that media project for the love of it, and because it was a dream of mine — and the person I was working with.

Over the course of my working life (more than 30 years, as I started working for pay when I was in my early teens) I have been through a number of “enagement incarnations” — variations in the level of investment I had in the job I was doing. Growing up, work was just something that was done. There was no questioning whether it was fulfilling or met some inner need. It was done because that’s what you did. You worked. You didn’t ponder the meaning of it all, you didn’t ask whether it was furtherthing your own personal growth, and you sure as hell didn’t moan and groan about the unpleasant parts. That’s just how life was. Life was/is work. And if you want to live like a regular human being, well, you worked.

So, there was never much call for me to get caught up in motivational stuff and getting all invested in my jobs. I just did what I did, and I did it to the best of my ability, and I didn’t sink a lot of my soul into it. I just performed my role(s) and went home at the end of the day. End of story.

Which was fine, when I was 20-something (even 30-something) and didn’t have any pressing responsibilities. It was fine, when I wasn’t in charge of a household with dependents, and making sure a mortgage was paid each month. It was fine, when I was still blissfully unaware of all the screw-ups I was making and could freely move from job to job and not worry about the long-term consequences. In a way, prior to my fall in 2004, I led this charmed life of ignorant bliss, always keeping a step or two ahead of my screw-ups, keeping moving before people could figure out that I wasn’t performing nearly as well as I presented, focused more on the excitement of new (and entirely useless) information that teased my mind but sucked the usable daylight hours out of each and every day.

Then, in 2004, when I fell down the stairs, it all caught up with me. And years of distractions and not keeping myself current and not focusing on the basics at my day job, just pulled the rug out from under me. It wasn’t so much that I didn’t have useful and marketable skills. I did. But my coping skills, my ability to handle stress effectively, my ability to interface well with other people, my ability to be productively invested in my day job and perform as a key team member, and my ability to keep on-task and focused and follow through, proved to be a lot less developed than I thought they were.

I didn’t have the kind of foundation I needed to feel really comfortable and confident in the outside world, and now I’d sustained a mild traumatic brain injury that scrambled things even more… and exacerbated all my issues.

And the money started to disappear…

Now I find myself at a critical juncture in my life. I can’t afford to not deal with the ongoing issues I have, and I can’t affort to kid myself about what is a problem for me, and what isn’t. I can’t afford to go, day after day, not finishing the things I’ve started, not understanding what’s going on around me, and not being able to see that I’m having trouble.

Clearly, I need to transfer some of my positive coping skills — like the ones I’ve used on this non-paying 13-year media project — to the rest of my salary-earning life. I’ve done well for myself. And now I need to do better. And I need to have a more in-depth experience in all of my life — not just the side projects.

I realize that I’ve never gotten really, really invested in my outside work, because outside work is not typically on my terms.  I have to adjust to conditions outside my head which I find difficult, distracting, disorienting, and anxiety-producing. And I have trouble understanding and making myself understood, which is a huge pain in the ass at times, so it adds to the stress. Then I get upset with myself, and then I really can’t think. And it starts the downward spiral. In many ways, I realize that I’ve done less than what I could, because I’ve gotten turned around and confused, and my brain does not like to be turned around and confused. So, it goes on strike. And the rest of me is like, “Oh, I guess I really do need to take a break…” And I quit. Just stop thinking.

In some ways, I’m a very hard worker. In others, I can really slack off. And my little brain can justify slacking — with no problem. It will even take it a step further and tell it/me that it’s doing the opposite of what it’s doing. It tells itself/me that it’s “working on it” when it’s doing the exact opposite — it’s stopped working and has wandered off somewhere to do something else that seems like a lot more fun. And I have to go find it, bring it back to task, and try to catch up to where I was, when my brain stopped trying.

So, I’m working at figuring out how to keep my brain engaged. How to keep it interested. I’ve started planning my work days much more aggressively, like I often plan my own personal projects. I know how to plan — I do it a lot. Thing is, I don’t do it with the activities with other people that actually make me money. I have this “disinvestment impulse” — an inclination to avoid personal investment, to be always ready to abandon ship if it starts to sink —  in work I do for others, perhaps because working for others has been so fraught with confusion and dread and disconcerting surprise screw-ups that I couldn’t explain. And the fact that I’m being paid to do certain things, but mess up all over the place also adds pressure, which exacerbates my symptoms and issues.

How can I reverse this impulse and really get engaged with what I do? A number of things have come to mind that I’ve been doing more actively:

  1. Actively plan my days and break out all my projects into manageable pieces, so I know what to expect and I don’t get overwhelmed.
  2. Write everything down in my notebook and follow my progress throughout the day.
  3. Think about my present work in terms of long-term payoff. See where the skills I’m building now can help me later on down the line.
  4. Think about what this activity will bring me, not only what I bring to it. Let it feed me. Allow myself to enjoy the pieces I can find enjoyable.
  5. Talk to my boss frequently, check in with them, and track how I’m doing.
  6. Think about the next day, the night before, and review what I still need to get done.
  7. Reward myself for jobs well-done.
  8. Pace myself. Work from home a couple of days a week and take breaks when I can. Actually go for walks in the middle of the day.

It’s not a perfect science, but I’m getting there.

And I’m actually learning to enjoy it!

Strategies for avoiding TBI overwhelm

I’ve been getting more and more overwhelmed, lately. Things are piling up, and I’m falling behind. Then I melt down, blow up, can’t manage… Not good.

Thing is, I know what to do…

When it comes to avoiding TBI overwhelm, there are a number of things I find quite helpful:

  1. Don’t overestimate my energy. I may want to have energy, but I may not. I need to track my energy, to make sure that it’s not just stress and anxiety and nervousness that’s driving me. I often mistake nervous energy for healthy energy, but nervous energy can cause me to make poor choices that get me in trouble. If I look at my schedule and see — plain as day — I am behind on my sleep, then I need to seriously consider that my “energy” might not be that healthy, and I need to take a break.
  2. Keep track of what I need to do, what I’ ve done, and what I need to do later. I just make lists of what I’ve got going on that MUST be done, and I try to keep the things that I am considering doing to a bare minimum. I carry over the things that I did not get done from day to day, and I track them to see where I’m at. I check in with myself at the beginning of each day, and again at the end of each day, and it helps me keep on track.
  3. Take frequent breaks. Even if I don’t want to. I am getting better at scheduling breaks for myself, so I don’t even have to think about it. I realize now, after years of messing up, that the time when I don’t think I need a break, is usually the time when I do. So, I make myself stop what I’m doing, go do something else — like get a drink of water or a snack or take a walk — and then come back to what I’m doing later on.
  4. Monitor my time usage. See if I’m frittering away time on stuff I’m stuck on. If I’m stuck, I try to ask for help.
  5. Plan for downtime. Seriously. Schedule naps on the weekend. Give myself permission to not do anything at all, sometimes.
  6. Don’t overestimate the patience of others. I have to deliberately cut to the chase much more than other folks do, as my detail-rich brain gets going and I waste a lot of time sifting through info that doesn’t really matter that much, and that others don’t have patience for. In my mind, it’s important, but others get impatient, so I need to laser what I say and talk about — which helps everyone, actually.
  7. Never forget, I’m a TBI survivor, and that has altered my brain in unpredictable ways. Sometimes, the best that I can do, is keep this in mind, so I’m not thrown off by the unpredictabilities of my brain. It’s bad enough that my brain behaves oddly at times — but the worst part is being thrown by it. When I expect the unexpected, I can deal with it objectively, which is critical.

It’s not a perfect system, but it works for me — when I work it, of course.

I just need to do that — and so I shall.