TBI S-O-S! Restoring a Sense-Of-Self after Brain Injury and Concussion
I am a long-term multiple (mild) Traumatic Brain Injury (mTBI or TBI) survivor who experienced assaults, falls, car accidents, sports-related injuries in the 1960s, '70s, '80s, and '90s. My last mild TBI was in 2004, but it was definitely the worst of the lot.
I never received medical treatment for my injuries, some of which were sports injuries (and you have to get back in the game!), but I have been living very successfully with cognitive/behavioral (social, emotional, functional) symptoms and complications since I was a young kid. I’ve done it so well, in fact, that virtually nobody knows that I sustained those injuries… and the folks who do know, haven’t fully realized just how it’s impacted my life.
It has impacted my life, however. In serious and debilitating ways. I’m coming out from behind the shields I’ve put up, in hopes of successfully addressing my own (invisible) challenges and helping others to see that sustaining a TBI is not the end of the world, and they can, in fact, live happy, fulfilled, productive lives in spite of it all.
I haven’t gotten much sleep, the past few days. Yesterday I had to work overnight, and even though the whole job only took an hour, I couldn’t get to sleep afterwards till 4:30 a.m. And then I had to get up for an early meeting. So, I’m kind of ruined, right now.
Well, it happens.
Fortunately, it doesn’t happen too often. But I still hate that it happens.
I have to get myself back on track with sleeping, so I’m calling it an early night, tonight. If I’m lucky, I’ll get to sleep before 10:00. We’ll see.
Sleep is such an important thing for me. If I fall behind, I get very anxious, because I know what it does to me when I get too tired.
But I can’t worry about it. I have a full weekend coming up, then I have five days off for Thanksgiving. And I’m figuring out what I’m going to do with all that extra time.
Hint: Writing and blogging are a big part of it. I can’t wait.
For my work, I often need to be on the phone. And I have to do it at all hours. Sometimes I have to work overnights, which is just not good. But I have to do it.
The big problem is that I have to use my personal mobile phone (and data) for work. It’s not right, and it seems unethical to make me foot the bill for that big part of my day job. But it is what it is.
I have my work/life phone all properly configured to be secure and protected. What a pain it was to do that. It took a long time and I don’t care to set it up again anytime soon.
But that’s what I thought I was going to have to do, when I got myself a new, better phone. Groan. I just hated the idea. But I’d switches SIM cards, and there was no going back. I had yo have a new phone.
Then, lo and behold, I discovered that most of the stuff I use my old work phone for has nothing to do with calling. I use it for Skype, Whatsapp, calendar, and email. That can all be done on any old wireless connection.
I don’t need a SIM card for any of that.
So, two problems solved:
I don’t have to use my personal plan to pay for my employer’s foolishnessI can finally get my personal activities separate from my work.
Just got back from visiting with a friend from 30+ years ago. I’m still pretty wobbly from my travels, but it was great to see them.
It’s wild, how some people can just stay so steady over time. Every time we get together – every couple of years or so – it’s like we’ve evolved in the same direction.
Plus, they are doing some really cool research that’s taking them all over the world.
I live hearing about people doing well. Especially since this friend sustained a moderate brain injury when they were young, and now – through continuous work – they are really doing some great things.
I have to say, I have missed this blog. I’ve been so busy, over the past year or so that I just haven’t done this justice. Or maybe it just felt like I was repeating myself and I was boring my own self.
That’s been known to happen 😏
But things have both leveled out and become chaotically familiar. And I’m not as scattered as I was before. So, it’s time to go a bit deeper with certain parts of my life and really find out what’s there. We don’t have enough depth, in my opinion, so rather than complaining, I’m going to do something about it.
One of the things I need to do is get $$$ support for this blog. I’ve been wanting to do it for years, but I’m feeling even more impetus to do it now. I’ve experienced a pretty amazing recovery from a long series of mild TBIs and I feel this intense drive to pass on what I’ve learned.
It’s worked for me. I need to help others, as well.
And I need to do it on a much larger scale than I have been. So, I’m going to put some thought into how to do that.
Think of that promise as me being on a merry go ’round and waving as I ride by… then I disappear for a while. I wanted to do better, I really did. But then life happened.
But I’ve dropped out of sight for a reason. I’ve been traveling for the past three weeks – one week for a business trip, two weeks for a working vacation with my spouse. This weekend will be the first I’m able to sit down with some uninterrupted time to blog (and think) in nearly a month. I was intending to spend time blogging over the past two weeks, while my spouse was busy at their conference, but it turned out they needed a lot more help than I’d anticipated. So, I spent most of my time taking care of them.
It takes me quite some time to get myself ready for my business trips, with all the coordination with my fellow travelers, not to mention setting up meetings with people where I’m going. And I have to get my spouse squared away with their needs and requirements, making sure they have the right food and medication on hand, making sure they have their time scheduled properly for when I’m away, and doing everything up front that I normally do while I’m home.
Nobody at the office seems to realize how much work it is to go on these trips. They all act like it’s no big deal, but it’s so much more effort and attention for me.
And when I travel with my spouse, it’s even more demanding, because they have a lot of special needs, and I have to ensure that they’re totally taken care of. Sometimes I “nail” it, sometimes I don’t. Usually, it’s a mix. And then I have to scramble all the more to make up for my misses, during the trip.
Long story short, it takes A LOT for me to travel. But I do it anyway.
And now I’m back. With lots of amazing insights from the past three weeks.
I’ll be able to say more later. But for now, I’ve gotta got get some food in the house and catch up on my sleep.
Well, that was exciting… The summer (thank heavens) is over, and now I can get my life back.
I don’t do well in the summertime. It’s a shame, because everybody else seems to have such a great time with it, running around, doing so much, getting suntans and extra exercise.
I, on the other hand, am not a fan. There are too many hours of sunlight in the day. And the days are hot… wet… uncomfortable in general. I’m sensitive to light and smells and noise, and summertime is full of all of the above. Not much fun.
I also have trouble sleeping in the heat. Keeping the A/C on in my bedroom (and all through the house, for that matter) is a constant source of stress with the noise. When I’m tired, I’m more sensitive to sound, so a moderately noisy air conditioner sounds like a massive fan in an airplane hangar. And that doesn’t help me sleep.
If I can’t sleep, I become more irritable. Volatile. Raging. It’s a problem. I’m not proud of how I’ve gone off the rails a few times, this summer. Between the work stress and summer stress… it’s not good.
I’ve been keeping really busy with work at my day job (sad face) and my own projects (happy face). It’s taken my mind off many of my troubles, but it’s also tired me out. Again, the fatigue business. And that leads to me drinking too much coffee… which leads to more headaches, difficulty sleeping… the same old vicious self-perpetuating cycle.
But now summer is over. Thank Heavens. And I can settle in for the next three months of enjoyment. I love fall. I love winter. I love spring. And now I get to take a break from summer.
I’m also giving myself a break from some of the Massive Undertakings I launched over the summertime. I came up with some pretty awesome plans that I’m convinced could be Very Big Indeed. The thing is, I really don’t have the capacity to follow through on all of them. I really bit off more than I can chew, so to speak, and that’s been dragging me down. I need to pick and choose what I’ll work on… and let the other stuff go.
But it’s all for the best, because as I narrow down my activities (e.g., writing and creating great content that I can license to others, versus running an entire company based on my ideas), I am operating from an understanding how a larger company would — and could — use my content to build their business.
I’m learning about the larger context for my writing, and that’s good. It’s very good indeed.
So, yes, sometimes I need to stop, in order to go. And learning to recognize my limitations and accommodate them is the first step towards being able to make some real progress.
Well, it’s been a miserable bunch of months. The past year, actually, has been pretty bad, and I’ve had enough. I’ve come close to quitting my job a bunch of times. Of course, the need to eat and have shelter and support my household has kept me from taking the leap — not to mention realizing just how non-negotiable it is for me, anymore, to be able to work from home.
If I can’t work remotely at least two days a week, there’s no point in even taking a job.
People have reached out to me. I’ve done interviews. I even got an offer.
But I couldn’t work from home, unless there was an emergency, and the commute was just too awful.
What is it with employers, that they don’t understand just how draining it is to work in an office all day long? It makes no sense. Some grown-ups (like me) actually thrive when working on our own. And we get a lot more done when we’re able to concentrate in our own space, than if we’re stuck in some cubicle where people are constantly interrupting, talking, walking by, making noise, and so forth.
I’m as guilty as the next person for doing it. People around me have to deal with my noise, when I’m at the office. But that’s the deal when you’re on-site.
But I digress. As much as I want to quit my job (and I do), I realize that I’m way too tired and stressed to make any kind of decent decisions about what kind of job I want next, where I want to work, what kind of salary I need, and so forth. I’m too worn out. I need a break. So, I’m taking the summer to rest, relax, rejuvenate. I’m overdue for time off. Like, a year and a half overdue.
I’m not in a position to just split for a vacation, but I can change my routine to make it more civilized. Ease up on myself. Quit pushing myself like I have been. Just take some time to take stock of my life, and think about how I’d like things to be. I’m getting too old to be getting constantly sucked into all the ridiculousness that happens, each day. I can’t control what others do, but I can avoid getting too emotionally invested in it.
It’s certainly not worth wrecking my health over the poor choices other people make, day after day after day.
Nah… I’m pretty much done with that.
So, this summer is really about me. Taking care of myself. Actually enjoying myself. And having a summer.
Going for long walks and drives. Roaming around and exploring parts of the world I haven’t seen, yet, even though they’re not far from where my daily routine takes me. Hanging out and enjoying the scenery. Looking around, as I drive to and from work, and really enjoying the scenery.
Taking a big old break from the social media echo chamber, and getting some fresh air.
I had a busy day, yesterday. A quiet day, too. I helped my spouse get ready for their event, drove them there, unpacked the van, chatted with people at the venue, hopped in the van, and drove home along back roads (because the main roads were packed).
I had some lunch when I got home. Nothing huge, just a sandwich, potato salad, chips, pickles. I had a handful of things to do, so I ordered them according to the weather. It was amazing weather, yesterday — sunny with passing clouds, a nice breeze, in the mid-60s. Couldn’t ask for better mowing weather. So, I pulled out the lawn mower from the back corner of the garage, topped off the gas, and got mowing. It took me an hour and a half, but I got the front and back yards done. I also raked up leftover leaves from last autumn, swept out the garage, replaced a down-spout that had fallen off my gutter, and trimmed back some underbrush that was blocking the view from my driveway.
I used the leaf blower to clean off my driveway, stairs, and deck, and then I ran my snowblower till it ran out of gas. It’s best not to let it sit with old gas in the engine all winter. I’ve had the snow blower nearly 15 years, and it’s held up well, but I need to be smart about storing it over the winter. At last.
After that, I had a snack, took a shower, and put up a new huge bookshelf in my study that I got from the neighbors for almost nothing. I’d been needing a new bookshelf, and the timing was perfect. It took a lot longer than expected, because I don’t have a lot of room to maneuver in my study, and I had to put it together in a very small space. I also had to partly take it apart, because the way I’d assembled it first made it impossible to turn upright. Eventually, I got it, but I was not expecting it to take me three hours to do it.
Ah well, so it goes. I now have enough shelf space in my study, so I can get rid of some of the piles. I also have a lot of books I want to get rid of. I was interested in a lot of stuff, years ago, that just doesn’t have anything to do with my life, anymore. And I need to get free of all of it.
I also need to get rid of some of the computers I have. I don’t need to hang onto them. There’s no point.
Lightening my load. Getting my life in order.
It feels like I’ve been doing that a lot, lately. Picking and choosing and prioritizing. As it should be. I can’t do everything in my life, and I don’t have unlimited energy. So, when I do find something I care about that matters, I need to make the most of it.
I’m also getting clear about where I want to go with my work in life. Future directions. Areas where I need to focus.
I’m sore as anything, today. Just aching. But it was worth it. I got a ton of stuff done that I’d been needing to finish.
Whatever I do, and however I do it, I just want to make it count.
Today is turning out to be interesting. My spouse has an event I’m helping to prepare for. I’ll pack the van, drive them over, help them set up, then come home and take care of my own projects here. I have some book cases I need to set up, books to move around, furniture to move, the garage to air out, the lawn to mow… etc.
And with the house to myself, this afternoon and evening, I can get it all done.
Plus, it’s going to be a cool day, today — temps in the mid-60s, which is a nice change — so I won’t have to run the air conditioners. I can actually open some windows.
And get a nap. Absolutely, get that nap.
I was up early, this morning. Couldn’t sleep past 5:00. So I got up and went out for a long walk. The early morning was cool, the bugs weren’t out yet, and I didn’t see that many people.
I still have an hour before I need to get going, so I’m making the most of it.
It’s quiet. But it won’t be for long. So, I’m savoring it while I have it.
I’ve been stalled for months, even years. Even longer than that, actually. No matter how I’ve tried, I haven’t been able to break free of the rut I feel like I’m in. It’s just felt like one problem after another that I’ve handled… that is to say, other people’s problems. And in the process, I solve my own.
I get paid to solve other people’s problems. I get paid pretty well, too, so that solves a lot of problems in my life. I need money to survive. I need a certain amount of status and security to stay healthy and not die. I know people who treat money like an optional thing. They don’t want to get entangled in it. They have more important things to worry about.
And I’m happy for them. I really am. If they can make it — or survive the stresses of not having enough — that’s a quality I admire. But I can’t do it. The stress throws me off too much. It disrupts my sleep, and when that happens, I can’t function. Even worse, my behavior takes a nose-dive and I lash out. Yelling. Slamming things around. It’s not good, for me or the other people around me. I’m stronger than people realize, and I can do some damage, if I let it all loose.
So, I need to keep things well managed, in a steady state of balance. That means getting enough sleep. And that means not getting so stressed out that it starts to wreck my life.
I keep myself in a pretty regular routine. And it works for me. I manage to get enough sleep, most of the time. I eat regularly, exercise regularly, take care of my responsibilities, hold down a job.
But I’m in a rut.
So, I need to get myself out of it. I need to take action on my own behalf, to at least create the impression that I’m taking care of myself. I’m so busy taking care of everyone else, I get lost in the shuffle of my own life. And that needs to change.
So, I’ll do one positive thing a day for myself. Something that brings me happiness, not just maintains my steady state. And I need to prioritize it over everything else. Yes, I may need to do other things, first thing in the morning, to get myself going — exercise, eat breakfast, take care of my spouse — but then I need to just take a little time on something that contributes to me. And my future.
There’s a lot of stuff I can do for myself. I have a bunch of books I’d love to read. I’ve been wanting to read them for a while, and I will surely get around to them. And there are other undertakings — writing, designing, artwork — that I want to get back into. My legendary (in my own mind, anyway) projects take on a life of their own, and they bring me a lot of happiness. But I’m stalled between a number of choices. Each of them has benefits. Each of them has downsides. I might be able to do any of them and be happy about it. But I have to pick one. And move on. Get going with just one, so I can get out of my rut… make some progress.
So, that being said, I’m picking one project and doing something positive about it, each day in June. I may not blog about it, every single day, but I will have that focus. I’ve made the commitment to myself, and now I’ll carry through.
The main thing is to have a deliberate focus in my life. My job is… fine. But it’s not how I want to spend all my free time. My marriage is on good footing, although it seems to be getting more challenging each week. My health is pretty good (though I could stand to lose 15 pounds). Overall, my life is… fine. But I need a specific focus on something that is mine and mine only, so I don’t feel like I’m just evaporating into the mist of everyone else’s dreams and ambitions.