I had no idea how much those “bumps on the head” affected me

It feels like no one understands... and heck if you can describe it to them
It feels like no one understands… and heck if you can describe it to them

When I was a kid, I got clunked on the head. A lot. When you’re little, they call them “boo-boos”. Your mother kisses it and makes it better. Or your dad checks to make sure you’re still breathing, then hauls you back on your feet and tells you you’ll be fine.

That was back in the day. 1960s. 1970s. Falls. From heights. Bike accidents. Clumsiness. Playing at recess.

In the 1980s, it was organized sports. High school. Car accidents, too. Two of them within the space of 6 months, if I recall correctly.

It had an effect.

I’m sure of it.

Irritable. No good sense of where I was in the world, relative to other people, or relative to objects around me. Distractable. Easily confused. Angry. I got angry quickly. I was always playing catch-up, and nobody seemed to notice.

They all told me I was so smart… Why wasn’t I as smart as they thought I was? What was wrong with me? What was wrong with me?

I had no idea that any of the concussions had an actual effect on me. I knew I was dizzy and dumb and numb for minutes, hours, days after the biggest hits, but I had no idea that it could last. I had no idea that it did last.

Maybe that dumbness, that numbness blinded me to my own difficulties. I’m sure it must have, because coupled with that fog, was an energy… a furious drive to go-go-go that propelled me through life, like someone on a 6th century battlefield who gets hit in battle and has to keep going, keep fighting, keep running and charging and defending and thrusting and parrying, lest I end up dead like the rest of my comrades.

Like that. Only I wasn’t in any outward battle.

It was an inward battle.  And I was attacker and the attacked.

I never knew…

I never knew.

One day at a time, one experience at a time… TBI recovery over the long term

brain with lots of question marks
How DO you work your way back?

I haven’t been doing nearly as much blogging, lately, as I used to.

Time was, I’d get up, do my exercise, eat my breakfast, and then spend 30 minutes or so blogging before I got my shower and went to work. I did this (almost) without fail, each and every day. And on weekends, when I had more time, I’d blog even more.

I researched. I wrote. I commented. I actively committed to sharing information about my life to everyone who might find it useful in their own recovery from traumatic brain injury, or in helping someone else who was recovering.

And it was good. It kept me going. It gave me a sense of purpose — a mission, if you will. This went on for a number of years. And yes, it was good.

Lately, I find myself wishing I were blogging, more than I really am. There are a lot of thoughts in my head, but it’s hard for me to sort them out, these days. I don’t think I’m declining cognitively… if anything, I think I’m doing much better than I have in a long, long time — maybe ever. The difference seems to be that I’m handling more on a daily basis. I have more challenges in my work life and home life. I have more responsibilities and more accountability. And that takes more energy from me, to handle everything well.

So, as I volunteer more, as I take on more responsibilities at work, as I gear up for my next career move, as I read more and am more active, I get tired more… so, I need to rest more. And I also have less opportunity for blogging.

And from where I’m sitting, that’s a good thing.

Here’s the thing though — in the midst of doing all that I’m doing, I really need to check in and show the rest of the world that recovery after mild TBI is possible. Recovery of a really high-quality life is possible after multiple concussions. And even when you sink as low as you think you can go, there’s still the chance (however remote) that you can get back.

I used to be pretty active on Twitter, but not so much, anymore. Frankly, it depresses me. It seems like all the concussion and TBI talk is around sports, especially pro football, hockey, Aussie football, etc. Despite the fact that countless non-athletic folks sustain mild TBIs from falls, assaults, and motor vehicle accidents, the talk is still focused on pro sports. Lawsuits. Who’s to blame for CTE in football players… and all that.

And it does the conversation a disservice. Because not only does it accentuate the dire nature of concussion — which just puts fear in the hearts of people everywhere (and possibly makes people less inclined to report or seek treatment) — but it also diverts the attention away from actual recovery.

How DO you recover from TBI? Even Mild TBI can do a number on you (as I found out, 11 years ago). So, how do you deal with it? Work with it? Overcome it? Everyone’s recovery is different, clearly, and what I’ve done may not work for everyone, but for heaven’s sake, certainly we can do better than we are now!

When I say “we”, I should really be saying “I”. Because I’ve been to the “valley of TBI despair” — not once, but a number of times. And I’ve wished I could simply die and disappear into the cold, dark earth. At different points, I’ve lost my ability to read, to write, to understand what people were saying to me, as well as how to regulate my moods and control my temper. I’ve had miserable, terrible headaches that wouldn’t go away 100% for years. I’ve had balance issues, sensory issues, work issues, relationship issues… directly related to and resulting from repeat blows to the head. So, yeah, I know what it’s like — at least in part.

All these things have resolved with me, for the most part… although I do have intermittent issues with them, now and then. And if I don’t talk about that, well, then it’s my bad.

It’s my bad, indeed.

I’m not one for sitting around feeling terrible about myself, though. I’m in a position to make a positive difference, so I will. It’s probably not going to be at the frequency and intensity that I’ve been working at for years, but it’ll be a heck of a lot more than I’ve done for the past couple of months. (Hmmmmm… I seem to remember vowing to do that, a little while ago, but nothing much has happened since then… but I can’t be too hard on myself – something is better than nothing.)

Let me close by saying this: My job situation, as tenuous as it is, is kicking me into gear to really re-examine my job choices. There are things I do really, really well, and there are things I struggle to do. I’ve been urged to master the things I struggle with, for my entire life. Now I’m at the point where I feel like I should put more emphasis on what I naturally do well, and not sink so much time and energy into mastering the stuff that I have trouble with. That’s not to say I don’t want to constantly improve, but I think there’s a missed opportunity to make the most of my innate talents and strongest interests… I just have to figure out what those are, after so many years of swimming against the stream of things I have trouble with.

I’m using this job uncertainty as an opportunity to get to know myself better — not only remembering what I’ve done well in the past, but what I’ve really enjoyed doing in the past (whether I did it well, or not). I have a deadline to update my job goals by next week, probably because of the impending merger, and also rumors that a lot of staff will get cut (mid-level management, I hear — although they always say that, and then it’s the little guys who get axed). I need to state clearly what I’m up to, what I plan to be up to, and why that matters to the company.

So, today (with no meetings — woo hoo!) I can spend some quality time really thinking about them, examining what I’ve done, thus far, and taking stock of what I’d like to continue to do. I can then transfer that into my resume and update it with what I want to do, not just what other people have told me I do well (but I don’t really like to do). Seriously, I am so hard-headed and tenacious and perseverative, when someone challenges me to do something — even if it’s not a good idea — I do it. I pull out all the stops, and I GO FOR IT. But what I’m going for, is sometimes someone else’s idea of a good thing. It’s not always mine.

For the past several jobs, I’ve stepped up challenges and roles that I’ve been asked to take on. Not because I wanted to, but because I was asked to. And I did a fabulous job — better than I thought, actually. That looks good on my resume, and it’s gratifying to realize I did great, but it’s not how I want to keep spending my life. God help me, no. I want to do things that appeal to ME, and that don’t exhaust me like the stuff that other people tell me to do.

That’s my goal. That’s my plan. Now, it’s time to go examine my life, see it for what it has been, what it is, and what I want it to be.

It’s time to dream a little — and put the pieces in place that will let me reach my dreams.

Onward!

Easy does it… sometimes, but not all

construction site nighttime scene cranes and lights
Downtime is time for me to get to work – Photo Credit: Pixabay

Ah, the long weekend. Time to kick back and relax. Go for long walks in the woods. Read a book (because I can!). Do some cleaning around the house, take naps, maybe watch some t.v. — no, not watch t.v. Not during my days off. I really value my time and don’t want to lose it to the television.

I’ll be doing more studying and research this weekend, brushing up on skills, also updating my resume. Just having time to think about things.

My new neuropsych is away for two weeks, starting next week, and it’s a bit of a relief. They mean well, but they’re nowhere near as experienced and helpful as my old neuropsych. They’re still learning — they’re 30 years behind my old neuropsych in terms of life and professional experience, and they’re 15 years behind me, in terms of dealing with TBI.

I’ve been dealing with mild TBI my entire life, so I’ve learned a thing or two. They’re an outsider looking in, and they’re also very much into mainstream medicine, with a point of view that’s very urban, upper-middle-class, intellectual, academic, and aspirational.

I think our class and cultural differences are pretty pronounced. I come from a farming background — rural, self-educated, self-sufficient, and well familiar with hard knocks and having to scrape your way up from the very bottom of the barrel — not once, but many times over. The older I get, the more important this perspective seems to me. And the more annoying it gets for someone who knows nothing about that way of life, to be assessing and judging me and making their best efforts to assist me.

There’s a whole lot I tell this new neuropsych that they don’t seem to “get”. It’s a little frustrating, especially because it’s important background  or context information that they don’t seem to pick up. Even worse, they don’t seem very receptive to learning about it, coming to understand it. They’re a bit insecure, to tell the truth, which gets in the way of my process.

If you’re going to do something, then do it with your whole heart, with the understanding that you probably don’t have the first clue what you’re doing, at the get-go… but you learn. You learn.

We all learn. That’s how we grow. That’s how we heal. That’s how we heal from TBI. We learn. We adjust. We make changes and adapt, we apologize for our mistakes and mis-steps, and we pick up and keep moving on. That’s the deal. That’s life. That’s how we’re built, as far as I can tell. So, why not just commit to that very human experience, and go for it?

Why not indeed?

Anyway, the next couple of weeks will give me a chance to settle back down. Working with a neuropsychologist on my various TBI issues — my convoluted decision-making process, my impulse control, my difficulties with focus at work, gearing up for a job change, my challenges at home with my spouse — it’s time-consuming and it can be very tiring. So, it will be nice to have a break from that.

I can just be for a while. Move at my own pace. Not have to figure out how and when to slot things into my schedule. To be honest, as much as it works with my weekly schedule, taking 4 hours out of every Tuesday evening takes a chunk out of my week. And I’m not sure that these sessions with the new neuropsych are really as effective as the ones with the old one.

Then again, I did need to make some changes. I was thinking of terminating with my old neuropsych, six months ago. They they told me they were moving to another position in another area, and that saved me the difficulty of explaining how they were really just annoying me on a weekly basis, and I needed to just take it from there on my own.

It was a boon in disguise.

I do really value the whole process, and it’s important for me to have access to someone with neuropsychological training. So, rather than terminating care, I’ve really been needing to up my own game and take more responsibility for the work, myself.

And that’s what I need to work on, for the next couple of weeks. I’ve been lax about figuring out what I need to focus on, and the times that I’ve showed up completely clueless about what to discuss, those have not had good outcomes. Frankly, they just pissed me off. No excuses here. It was all my doing.

And I need to un-do it. Because ultimately, my recovery is really my own responsibility. They’re just there to help me work through things. I need to get my focus back and quick messing around. I need to properly prepare for those sessions, just as I would prepare for other important meetings. I don’t show up to meetings at work without some idea what I should get out of it. The same should be true for these.

So, there’s my task and challenge for the next few weeks — getting serious and getting lasered in on the issues I need to A) stop creating for myself, and B) start fixing by myself.

I need a little help from my friends, and my neuropsych is the most capable sort of person I can call a “friend” in this specific situation.

So… onward.

Woke up in a panic at 2 a.m. – then I remembered, I’m going to be fine.

vultures-overhead-modI woke up this morning in a cold sweat around 2 a.m. I was starting to panic about the prospect of looking for a new job. I’ve done this so often… and I was hoping with all my might that this job I have now would be the very last job I’d ever have to look for — because the employer was supposedly so stable and dependable.

Then, three months in, they announced that they’d be merging with someone else. And becoming bigger, “leaner” and supposedly better.

It doesn’t feel hopeful to me. It feels like vultures are circling overhead. Waiting to see who will get picked off. It’s already been happening.

And it’s a problem. Not just because it’s sucking all motivation and joy out of the work I love to do, but also because it makes everything I do there feel like a waste, rather than an investment. I feel like no matter what I do, it’s not going to matter, in the grand scheme of things. And all the effort I put into it is going to waste.

That’s not something I can afford to do, at this point in my life. I need to stay current and sharp. I also need a team to work with.

One thing that this job has taught me, is that I really do thrive in teams. I never used to be that way, until I started my TBI rehab in 2008. Before that, I was always a loner, always on the outside, never really able to connect with others, because of my communication problems — slow processing speed and poor short-term working memory. It’s really hard to work effectively with others, when you constantly forget what people are saying, and you also are so wiped out at the end of each day, that the cumulative fatigue just kills whatever spark you have, by the time Thursday rolls around.

I’ve been muddling along, with maybe 2-3 good days per week, for years. Small wonder, I never felt up to the challenge of working with others.

But since I’ve done my mild TBI rehab, I now have ways to augment my limitations and work around them. I  now have ways to compensate, improve, and also avoid situations that wreck me.

And as it turns out, I work really well with teams. I’m a great team leader. I’m a great project manager. And I absolutely thrive in the company of geeks and nerds and people who the rest of the world thinks are odd.

This job that I have now would have been perfect for me, 10 years ago, when all I wanted to do was find a corner to work in and not have anything to do with anyone else. Just do my work in isolation, not worried by communication disconnects, not concerned with memory issues, because I was off by myself.

Now, though, I realize that I really do need to work with an established team. I need other like-minded people to interact with on a regular basis. And I need to be in charge of leading people towards a common goal. Hands-on, in the trenches, together with other joyously iconoclastic oddballs, like myself.

So, this job has been a great lesson, in so many ways.

Figuring out what you don’t want to do is the first step to figuring out what you do want to do. And now I’ve got that first part figured out.

Onward.

Being okay with not being okay

flooded lake
This is what my life sometimes seems like. Flooded – just flooded – with too many problems, and no clear path forward

I talked yesterday about how trial and error is a great way for me to “feel” my way through life. I learn a lot in the process, and if I can just stay flexible and adapt, then I’m good.

The thing is, it’s incredibly hard.

I have no problem making errors. That comes with the territory of being me. It seems to be my “default mode” — and I used to get so much crap for it, when I was a kid, because I was always messing up things that should have been so easy for me. Everybody expected more of me, and I consistently let them down.

That was maybe the one and only way I was consistent — I let people down, when their hopes were highest.

My parents who believed that paper route would teach me responsibility and reliability, only to watch me fall behind, mess up the math on how many papers I needed, and not get out of bed early enough on Sunday mornings to deliver the paper at the pre-ordained time.

The teacher who ran the school newspaper who was so sure I’d make a great sports reporter, only to have me start one story after another, and never finish it, growing surly and defiant when they pressed me to meet the deadlines.

The editor of a local newspaper who was so happy to have me on board, at first, then grew frustrated at how I could never seem to come to a succinct point in newspaper format (my pieces went on for pages, and I still never got to the point).

All the bosses over the course of 20 years who saw so much potential in me, only to be disappointed by one “careless” error after another, dealing with my uncooperative style, and ultimately finding me insubordinate when they pushed me to perform, and I pushed back.

I’ve long believed there was something wrong with me, for not being able to perform at the level everyone else did so easily. The really hard stuff, I could do — staying calm in a tense situation, finding creative solutions for problems that stumped everyone else. But the easy stuff — just staying on schedule, being consistent, having a good collaborative working style, and being a solid team player… that was such a challenge for me.

Everyone else could do it. Why couldn’t I?

And I felt terrible about it for years and years. Decades, really. Just terrible.

Until one day I decided there wasn’t any point to that, anymore. I think that change happened three or four years ago, when I read a book about how the human system is designed to take in feedback and adjust. So, all the “failures” and “mistakes” were actually just feedback intended for me to use and apply in my own life. It wasn’t about black-and-white success/failure. It was about data. Information. New details that I needed, in order to really do a bang-up job on what I was undertaking.

And it made sense to me. I mean, think about it — when you’re born, you don’t know how to walk and talk. You have to learn it from scratch. You don’t come into the world like a laptop from a computer company. You don’t come “pre-loaded” with everything already up and running and properly configured. You have to learn. You have to acquire the skills. You have to gather information and work on your abilities. And if you push yourself to try things you have yet to learn completely, you’re going to make mistakes. You need to learn.

“Mistakes” are how we learn. It’s how we get new information that guides us in a different direction. It’s how we alter the course of our days, weeks, months… our lives.

When I got that through my thick skull (which is actually thicker than usual – my family has dense bones, which is fortunate for us all), everything changed. Everything opened up.  I was free to fail! I was free to live my life! Woot!

Then the details of the book slipped my mind, and I went back to “rigid mode” where I got upset about screwing up, all over again. Because that’s what I knew. That was my old default mode.

With TBI, I think it’s very common for us to be rigid and get certain ideas stuck in our minds. We have A WAY THINGS ARE DONE, and we get stuck in that rut, thinking it’s THE ONLY WAY THINGS ARE DONE. We don’t want to mess up. We want to be successful, so we cling to THE WAY we think we should be using.

Over. And over. And over again.

I don’t know about anyone else, but I do that all the time, and I get so frustrated when it’s clearly not working. First I get frustrated because it’s not working, no matter how often I do it. Then I get frustrated because I forgot — yet again — that I’m too rigid, at times. I get stuck in a rut, and I get upset with myself.

But really, it’s all just lessons. And it’s all just reminders.

And if I can not get all caught up in beating myself up over it, and being hard on myself, these are actually really useful lessons. More lessons. Tons of them. In abundance.

Really, the only thing that can go “wrong” is if I overlook that, get stuck in a rigid mindset, and refuse to learn.

Fortunately, life has a way of reminding me of what I need to know.

And if I can be okay with not being okay — for however long it takes me to figure things out — then I’m good to go.

Onward.

Finding Your Inner Strength after TBI – from TBI Survivor

Several months after my TBI, when the shock of waking up after a month   in a coma had started to dissolve into the realization that things were going to be really different, I began the slow task of sorting my life out.

There were so many issues; I was unable to process conversations quickly, I felt stiff and unemotional, and I was too accepting of the things happening around me. Others thought I was passive and disinterested, but it was simply my inability to respond that made me seem that way. I was having trouble making connections to people and things around me and, as happens to many of us survivors, felt extremely isolated.

Life seemed to be whizzing by and I couldn’t keep up.

Even with all this stuff going on, there was something positive lurking that I couldn’t see. Only later, when I looked back, could I understand what had been going on.

Read the rest of this excellent post at Finding Your Inner Strength after TBI – TBI Survivor

Why have I been away?

Sometimes it's hard to see the path ahead
Sometimes it’s hard to see the path ahead

I just jump-started my TBI blogging again. Looking at my archives, I have only posted six times, so far this month. That’s quite a difference from my past. It’s been for good reasons. I’m getting a lot of things done that have languished for some time.

But I also have been depressed. I get really busy… I exercise regularly… I tick items off my checklists… then I get really tired and feel depressed. No joy left, by the end of the day. No enthusiasm on the weekends. Just slogging through my daily life, pin-balling between hyper-productivity and not wanting to have anything to do with anyone, not wanting to go anywhere or talk to anyone… just waiting for the day to be over.

It’s an odd combination. Because I’m pretty well scheduled, and I’ve got a lot of discipline and focus for the things I need to do. My upbringing stressed getting things done, no matter how you feel about it. Your state of mind was really beside the point. You just got on with life and did your part, even if you had no joy in it. Even if you didn’t care about it. Even if it had nothing to do with you.

If you were depressed, so what? You just got up and got on with your day, anyway. If you were in pain, so what? You just picked up where you could and did your part. Personal feelings and emotions had nothing to do with anything. Getting the work done and playing your role was the critical thing.

I think it went hand-in-hand with being in a rural area, raised by parents and grandparents who’d grown up on farms. When the cut hay has been lying in the field for two days and is dry, and rain is threatening for the late afternoon, you don’t get to lie in bed and say, “Oh, I don’t feel like baling today.” You get your ass up out of bed, and you go bale the hay. You work through any and all weather conditions. You do what is needed by the community, and you pull your weight, so that even if it does rain at 4:00, the hay is all baled and in the hay mow of the barn.

It’s non-negotiable.

And I suspect that’s why depression and mental illness have become more prevalent in society. It’s not that there’s so much more of it, now. There’s just more recognition and acceptance of its very existence. I’m sure there have been many, many people over the eons who have been depressed or had some other mental illness. It was just never allowed to be seen. Or if it was so extreme that it couldn’t be eclipsed and covered up by strict roles and duties, you just got sent away.

Anyway, I haven’t felt much like interacting at all, this month. The shootings in Orlando really upset me. To me, it’s an assault on diversity and community. It’s an attack on human nature and our freedom to simply be who we are and gather with others like ourselves. It doesn’t matter to me if you’re gay or straight — everybody has something about them that is different, and we need to gather with like-minded people to remember who we are. It’s just that the people in Orlando who were killed and maimed aren’t in the mainstream, so many people don’t know how to talk about it or think about it, without looking for a way that “they brought it on themselves.”

I don’t see it as a religious or political thing. I see it as the product of our society that encourages people to take violent action against others, to relieve their own pain. And the politicizing of it by the very people who believe that same thing, really angers me.

And that’s all I’ll say about it. No more comments. There’s too much of that, already.

But back to my present. I really need to start blogging again. Regularly. It actually anchors me and helps me collect my thoughts. And I don’t need to get all rigid about the “right” and “wrong” ways to do it. I just need to do it.

Because the voices crying out that people with brain injuries are broken and can’t be repaired, are too strong.

Because all the fear about concussion often seems to completely overlook the chance of recovery. Concussion is turning into a sort of delayed-action death sentence, and I think that’s wrong. It’s a terrible message to send. But of course, that’s what gets the funding flowing.

Because despite having sustained 9+ concussions in my life, things are going really, really well for me, and I need to bear witness to that. To show that I’m good. That I’m recovering. That it’s not by accident, and it’s not a fluke.

Because, well, this is a huge part of my life. And in the midst of getting everything done, exercising, trying to get my sleeping schedule in order, and generally feeling down, it’s the one thing that can get me out of my head and lift my eyes above my current challenges to show me the precious long view.

I can’t make any guarantees, but I’ve just given myself some really good reasons to re-kick-start my TBI blogging.

So, I expect to see you soon.

Ready for Monday – Looking back, looking ahead

Who can say what lies ahead?
Who can say what lies ahead?

I had a pretty good weekend. Restful. Downtime. I did some things on Saturday, then took Sunday off, pretty much. Just hung around the house, organized some things, did some reading, caught up with my email, and gave some family members a call.

One of my siblings is in the hospital, and I may need to travel to help them out. But it may turn out to be nothing. They’ve had physical disability issues for many years, and this is one more in a long series of troubles they’ve had. I’m not making light of it. They’re having all sorts of tests done. But it may turn out to be just a speed bump, rather than a sinkhole, in the road of their life. They’ve been through this kind of thing many times before, and we all know it’s a wait-and-see type of situation.

If I have to go, I’ll go. They may need me. But for today, I’m taking it easy.

I’ve got a late night tonight, so I need to get an early start on the day. I’m seeing my new neuropsych again. I’m bringing them up to speed on my childhood. They’ve worked with a lot of kids, in the past, and this will help them better understand where I’m coming from.

This is important for both of us. With my history of mild TBI as a kid, it can shed important insights on what shaped me into the person I am today. And it also highlights the differences between the world I grew up in, all those decades ago, and the world we live in now. I was telling my neuropsych about the time when I ended up on the bottom of a pile of kids during recess in 5th grade got my neck/head hurt. I knew I’d gotten hurt and after I crawled out from under the pile, I walked away in a daze, just walking across the field where we were playing, trying to put as much distance as possible between myself and everyone else, because I didn’t want to get hurt again.

After that, I didn’t want to play rough. I was confused. I was out of it. My grades dropped like a stone tossed into a pond. And the former A-student nearly flunked 5th grade. My teacher had to come to my house and talk to my parents about me not completing my work. They made me stick with it and complete my homework assignments, but it was a real battle for them, for many months. And I’m not sure I ever recovered from that experience. All of a sudden, I was stupid. I couldn’t think. Something was wrong with me. I wasn’t smart, after all. I was stupid. I couldn’t do it. I just couldn’t do it.

My  neuropsych asked me if I’d told anyone about getting hurt. I said, no, that’s not how we did things back then. You just picked yourself up and went back into the fray. Another thing that I didn’t add, was that I was so confused, I didn’t realize there was a reason for me to say anything. I’d gotten hurt similar to that many times, while playing. It wasn’t new — that time was much more extreme, however. All those other times I got clunked on the head and was a little woozy, I recovered. But for some reason, that time was different.

And that just highlights the differences between how and when I grew up, and how things are now. Even if I’d told my parents or teachers, what could they have done? What indeed? Nobody knew sh*t about concussion or mild TBI or neck/spine injuries back then. If anything, I would have just been a hardship to everyone, because my parents didn’t have the money or the time (they were both working) to really tend to me.

Nobody had the time for me. And when they did try to help me, they did such a bad job of it, I thought I would have been  better off just going it alone.

And it makes me a little ill, to think about how blind and bound by ignorance everyone was, back then. Living in the country, in a place where you were never allowed to admit any hurt or any weakness, but you sucked it up and got back in there. Because that’s what was done. No cry-babies allowed. No weaklings. No quitters.

So, I’m meeting with my neuropsych again today, and we’ll talk more about my childhood. I’ve got my box of favorite things I kept over the years. My parents cleaned out their attic years ago, and I got my childhood box from them. That and a bunch of photos of when I was a kid.  School pictures, from first grade on. Other photos used to be in the collection, but I took them out, and I don’t know what happened to them. I think I put them in another photo album somewhere, but I don’t know where it is. I would like to find that. It’s classic, and it’s full of pictures that are worth more than 1,000 words.

Thinking about being a kid dealing with mild TBIs all on my own… it was pretty rough. And I got tired of being punished for things I didn’t do on purpose. That’s probably part of why I have trouble with authority figures. I’ve been punished and disciplined and pulled back into line by force, by people in power so often, for no reason that I could tell — till after the event was over. They probably thought I was being difficult on purpose, but I just didn’t know. I didn’t remember things they told me. I misinterpreted what they told me. And then they came down on me like a ton of bricks. Because all I knew how to do was put on a brave face and act like I was in total control of everything.

I wasn’t. But if I let on that I wasn’t, then I’d be vulnerable. And other kids or adults would beat up on me.  Because they could.

It was terrible, when it was happening. But that’s just how everything was. That’s just what happened. And I dealt with it.

Now things are so much different. I still have residual resentment and distrust towards authority figures, but I’m dealing with it. I’m not nearly as bitter and angry as I ws in the past. And I have this amazing life that really keeps getting better. Standing at my desk, looking down at the bird feeder in my back yard, a young deer just appeared from the trees nearby and is looking for something tasty to eat. Beautiful. Just beautiful. This is all possible for me now, regardless of what has happened to me in the past. Maybe it’s possible because a lot of that happened.

I know for damn’ sure, I’m a heck of a lot more resilient than other people I know who never had awful things happen to them on a regular basis. I figure, my childhood was like the price of admission to this life I have now. And it’s paid off.

Being roughed up when I was a kid and being left to sort things out on my own… it wasn’t the most fun, but I learned a lot of lessons. And all of those lessons are helping me today.

Monday’s here! I’m ready. Let’s do this.

Onward.

Heavier weights today

this is waht today feels like
This is what today feels like

Not every day starts out with 9.5 hours of sleep, unfortunately. In fact, precious few do. And after days of sleeping long past 8 hours, I’m up early this morning with barely 7 hours under my belt. I was too warm, overnight, and I probably need to put the air conditioner back in the window, because when I get too warm, I can’t sleep.

Also, I was having bad dreams last night, having to do with my spouse. I was so angry with them about doing something wrong, and I was trying to get back at them and teach them a lesson, but when they tried to step up and do what I needed them to do, they couldn’t, because their mind was gone. It was mean-spirited and cruel, and it also brought home to me, yet again, just how much it sucks to have your beloved decline right before your very eyes.

So, no, I didn’t get enough sleep last night.

I got up anyway and started in on my day. I rode the exercise bike for 20 minutes, then I did some heavier lifting than I usually do. I didn’t do a ton of it, because I don’t want to injure myself. But I did lift heavier weights that took more concentration and effort than usual. And that felt pretty good. It felt good to push, even if it was just a slight bit more than usual.

I need to shake things up and break up my routine, so it doesn’t get boring and I don’t lose interest and motivation. I mean, having a “master routine” of doing the same activities each morning and evening (getting to bed at the same time, exercising and eating a nutritious breakfast in the morning, and keeping myself on a schedule). But doing the exact same thing(s) over and over can be mind-numbing, so I need to find other ways to work and stay active.

And that’s what I’m doing. I had my “magic potion” of electrolytes and fruit juice this morning. And I also mixed up a big batch of deviled eggs. I actually love them. And over the last holiday season, my sister-in-law showed me some secrets of making really tasty ones. So, I whipped up a batch and sealed them up in plastic containers for later (so the refrigerator doesn’t smell like egg sulphur). I used to watch Jacques Pepin on a food channel, and he showed how you can poke a hole in the end of an egg to let the sulphur release, so your eggs don’t have that rotten smell, but I could never get it to work. It just got egg all over the inside of the pan I was cooking them in.

Oh, well. The smell isn’t awful, and it doesn’t mean the eggs are bad, so I’ll live with it. At least I have my deviled eggs.

I’m tired today. And not just from not getting sleep. Yesterday was a very emotional day for me —  much moreso than I expected. I had a neuro appointment, where they did an EMG on my legs to check for neuropathy. They wanted to check how the nerves in my legs and feet are behaving —  if my balance issues might be related to degeneration in my nerves there, or if the impulses are not traveling properly from my spine to brain to legs to feet… and so on.

I had to lie still and relax completely, while they did little electric shocks on my legs, and then tested the nerves in the muscles with little needles that the doctor inserted into the muscle. It wasn’t terrible. I could do without the shocks. It reminded me a lot of when I was a kid running around at dairy farms, bumping into the electric fence. It was like that, but the place where they pressed the electric conductor against my skin was very sensitive. The doctor told me that if I relaxed and got my autonomic nervous system to calm down, I’d have less of a pain response.

I found it interesting that they talked about the ANS that way — and that they seemed to assume that I knew about it and understood what they were talking about. The thing that bothered me about it, was that they went really fast, and I felt like I couldn’t prepare or keep up or get my head around what they were saying, until they’d started. And that sense of no control was stressful. I mean, not necessarily control, but just not feeling like I was actually a part of the process — that they were just doing all this on my body as though I wasn’t even there — I didn’t care for that at all.

It took about 30 minutes to do the testing, and the needles weren’t bad at all. They said it would hurt a little bit, but it didn’t hurt very much at all. The anticipation was much worse. And the needles were actually less painful than the electric shocks. The shocks were the worst, really, now that I think about it. Having your legs jumping around, and feeling that burning roughness from the electric conductor… it was worse than I thought it would be.

I got through it in good spirits, had a pleasant chat with the receptionists, and then headed back to the office where I could just get some work done. It really wasn’t that big of a deal. But then when I was going to sleep, I suddenly burst into tears and wept like a small child. I guess it did bother me — a lot. And the thing that got to me the most was that I was all alone in the process. I’ve stopped discussing the neuro appointments with my spouse — I don’t even tell them that I’m going — because it sets off their anxiety so intensely, to think there might be something “wrong” with me. And then my life gets even more complicated, because they shut down in their anxiety, and they just “drop out” of live, leaving me even more alone — and burdened — than before. So, I stopped telling my spouse about my appointments.

After all, there could be nothing at all wrong with me. Maybe I’m just a very sensitive individual who has a unique combination of traits that make me dizzy at unexpected moments. Who knows? So, why worry my spouse, if that’s the case?

But not having anyone to talk to afterwards, not having anyone to debrief and decompress with… that’s tough. And I really felt it last night.

These times when I have to push through an unpleasant experience is a little like lifting heavier weights on occasion. It forces me to pay attention. It makes me feel vulnerable and out of my element. And it reminds me of how much farther I have to go, to really feel as though my life is on solid footing.

It also makes me more sensitive to the situations of others who are even worse off than I am, who are struggling with serious health issues in the face of a medical system that doesn’t serve them, but only confuses and alienates them… and then blames them for not taking proper care of themselves. That’s especially true for folks with cognitive issues. I had a really hard time, inside the silence of my own skull, keeping up with what was going on around me. So, I just went along with it. But if the doctor had made a bad choice or wanted to do something more serious to me, would I have had the wherewithal to stop them? To question them? To defend myself?

Maybe I could have. Or maybe not. I just don’t know. But I do know that for many, many others, they can’t. They just can’t. They’re at the mercy of the medical system, unable to follow along, unable to figure out what the doctor is saying in the 15 (whopping) minutes they have to spend with them.

And that can be deadly. We can’t speak up for ourselves, we can’t advocate for ourselves. We just end up being guinea pigs, and that’s such a bothersome situation, it alone keeps me up at night, sometimes. I wish to high heaven there were something I could do to change this, but all I can do is offer my own experiences, and hope that somewhere, somehow, someone reads these words and gets something from them.

I’m feeling a little better this morning, but my dream bothers me. It all bothers me. But it’s a new day, a beautiful day, and life is waiting. I’ve got a whole bunch of deviled eggs in the fridge, and that’s pretty cool. Life is good. Regardless.

Onward…

Extra sleep – the key to my future plans

brain-interests
Roughly – this is how my thinking has been prioritized

I keep sleeping in past 8 a.m. This is new, since I returned from my business trip. This morning, my spouse had to wake me up at 8:15, asking if I was planning to go to work today.

Well, yes, I had planned on it. But if I don’t have to do it, so much the better😉 No, really, I hoisted myself out of bed, did a shortened version of my morning exercises, and made my breakfast. Now I’ll do a quick post before taking off for the office.

I got 9-3/4 hours of sleep last night. I think that’s a record, of late. The last few nights, I’ve been sleeping from 10:30 till 7:45 — even past 8:00 — which has been putting me at close to 10 hours, for the past three nights.

And I didn’t even realize I was that tired.

I guess it’s all catching up with me — and not only from the business trip last week, but from the past 10+ years of grappling with sleep issues. I’ve been exhausted for so long, I don’t even know what it feels like to be fully rested. And my neuro thinks that it’s one of the root causes of my dizziness and lack of balance. My old neuropsych said that sounded “preposterous”, but if the brain is in charge (at least in part) of your sense of equilibrium as well as coordinating your movements, and your brain is tired, then doesn’t it make sense that a tired brain would lead to an un-balanced body / proprioceptive sense?

That seems common-sense to me. But I’ll let them fight it out on the experts front.

As for me, I’m actually sleeping, and while I do wake up during the night many times, I’m able to get right back to sleep and stay that way… and for 2-3 hours longer than is typical with me. It’s either that, or take a sleeping pill, which has been shown to cause rebound insomnia and is strongly cautioned against for people with brain injury. Now, that apparently happens after extended use, but even so. Why chance it?

Plus, not everyone metabolizes it the same way, so saying it’s benign in every single case — especially mine — is pushing it. And that’s beyond pointless. And a little worrying.

But on the bright side, my own situation is worlds better — at least for now. I may have to start setting a clock to wake me up by 8:30, if I don’t wake up, myself. I’m accustomed to waking up at 5:30, but I can do with out that, for sure.

Aside from the jet-lag and time-shift that came with the business trip, I think another thing that’s really helped me relax and sleep more, is taking some concerns off my plate. I’ve decided I’m not going to go back to school to finish up the B.A. I failed to get, 30 years ago. I was in trouble with the law, I was in trouble with my family, I couldn’t stay steady with anything I was doing, I was with a bad group of people who were very self-destructive, I was out of money, and I was too booze-addled to make good decisions. Finishing my degree just wasn’t possible.

My current employer pays for both graduate and undergrad education, so this would have been the perfect opportunity for me to finish my degree. But let’s be honest — there is no way I can hold down a full-time job, take care of my spouse, and take care of my own health, AND go to school, even part-time. Even doing one course, would be too much for me. Two to three hours of classes a week plus reading, plus studying for tests… with my learning differences, and my crushing fatigue… there is no way that could work.

So, after having this bright hope that I might be able to do it, I let that go a few weeks back. It feels like a surrender of something I’ve wanted with all my heart for so many years, but it just doesn’t make any sense. If I ever find a way to support myself that doesn’t involve being at an office and constantly dealing with people for 8-9 hours a day (and beyond that, considering all the emails and texts that come in at all hours), I’ll consider going back to school. But not if it puts me in debt. And not if it destroys my quality of life.

The wild thing is, ever since I let go of that plan/dream/ambition, I have felt so much more relaxed. Yes, it’s a loss. Yes, it’s disappointing. Yes, I kind of feel like I’ve failed. But this frees up that part of my brain that has been connecting my future success to the way I was always taught I could succeed – through getting degrees and adding qualifications and certifications that come from others.

As it turns out, I realize that I really am on a different path than that. I belong on the frontier. My great-great-grandparents were pioneers who traveled to the West when it opened up, and they paved the way for others to follow them. I’m actually not happy about some of the things they made possible — the Dust Bowl, rounding up Native Americans and putting them on reservations as well as genocide against this country’s first residents. That’s a hard legacy to carry. But at the core, at the center of it all, I am essentially a pioneer, not someone who settles spaces that others have opened up. And I’m the kind of person who thrives in unstructured environments where the rules have yet to be written.

brain-interests-new So, I’m freeing up my “brain space” to make room for my new work direction. I’m making the most of my current job stability to really think about where and how I want to work in the future. I’m not rushing out to find a new job, right now, because I need time to think and really get clear about what I want to do. After years of hard work and sacrifice and doing a lot of jobs that I didn’t want to do because they were good experience, I’m finally at a place where I can literally pick and choose the direction I want to go in. I have the experience that others really, really need, and after years of rehabbing with a neuropsychologist, I once again have the temperament and behavioral control to work effectively with others.

I was this close to being able to do that, back in 2004, when I fell and got hurt. I was 18 months away from cashing in on my shares, that would have let me pay down my house and refinance the remainder at a very attractive rate. I was 18 months away from financial independence, which was no small feat for someone without a college degree, who everyone said would never get far in life because of my failure to complete pretty much anything I started. I could see the light at the end of the tunnel, and it wasn’t an oncoming train. It was my future – the future I had worked so hard for.

Then I fell, and everything fell apart.

I’ve been rigidly locked onto the idea that I had to finish my degree, in order to get anywhere in life. But in fact, that falls back on thinking from when I was a teenager. As an adult, I’ve always been a pioneer, a leader, someone who ventures into spaces that haven’t yet been explored. The things I’ve done, have been things that nobody else thinks are possible.

But I know they’re possible, as do the others I work with.

Now I need to look again to the future and find where I need to be. Not just where I am right now, but where I need to be, on down the line. I want to make the best of everything I’ve got, and take it to the next level.

And so I shall.

Onward!

Holy smokes, it’s amazing what some extra sleep will do for you…